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How much potassium do you take as a supplement with your licorice root regimen? I seem to be losing water weight (not fat yet), but have developed a few muscle twitches. Would appreciate any tips.
For the potassium, I use my magic bullets single shot blender. I mix bananas,water and apples together and blend. I don’t know the exact amount of potassium or volume I’m getting to be frank, sorry. But whatever amount I ‘m drinking is sustaining my water level. So whatever that the magic cup’s holds is what I drink once or twice daily. I do this, two hours later after each tea. So that is my regimen. I hear you can buy potassium concentrate drinks in small pouches. Just add water.
As for the muscle twitches, I do get them from time to time but I haven’t figured out why, as yet.
I’ve been on here and posted a few time’s and my wife i have had almost every symptom list on this cite. How ever, it all started when my dad died in the hospital June 23,2013. I’ve been to so many doctors that I can’t remember them all. Anyway, my wife went to a GI and had test done because her spleen and liver is enlarged . And I’m pretty sure we have found out what’s wrong with us. She had a sputum culture and it say’s many gram positive cocci. To my understanding , it is something like mrsa. And I’m pretty sure it’s in out respatory track and in our gut. I went to the hospital today and had a culture done today but it will problem be Monday before I get the result’s. I hope this is it because I think we can be cured if it is.plus, her test is positive but we don’t know which one it is.
I’m back and I’m sorry I posted this comment as it was premature. I was praying that I did have something that there was a cure for but I was wrong. As I was informed that test was contaminated by skin cells and was a false positive. After three year my symptoms are easing up a little but I give up looking for answers. Good luck to all who stumble across this site!
Have you found anything works well at reducing tartar/plaque? You mentioned that dental hygiene becomes more difficult.
Not for the plaque, but one the best supplements for gums problems and receding gums is Q10. I keep meaning to try high dose Q10 (say 250 mg daily) for a year to see if it helps the gums, along with low dose doxycycline 20 mg daily or triphala herb, which both reduce MMP-9. That might be a good combo for gum health and the periodontal problems.
Anyone trying this might like to take pictures of their receding gums before and after, so that after a year of treatment, they can show evidence of efficacy if the treatment works.
I’ve communicated to you a number of times with regards to these symptoms. I’ve felt that I’ve had this virus for some 8 years now and can literally remember the first day I felt unwell. Of all the symptoms I’ve had – they all appear to be milder (so far) that some of the posts I’ve read here.
Crepe paper skin however, this appears to have developed over 4/5 years. And each time it comes on – or becomes more crepe is when the feeling that my skin is crawling etc. There are a number of people on the Internet that describe this however I do feel mine has developed a lot longer or rather needed more time to become fully crepe.
In each of your cases I felt that the crepe paper was one of the first symptoms- is this the case? I suppose I’m trying to ascertain if this will get any worse, and j suppose after crepe start attacking other parts of the body?
I’ve had itchy skin over the years. The muscle twitches, sore/itchy eyes. Dental problems/ mood swings but I’ve always been able to control it.
I’ve recently noticed that my skin, as well as the developing crepe, appears to have lost its skin like qualities. For example; it stretched more. My elbows hurt after leaning on them for just several seconds – my knees too. I feel I pull muscles much quicker than before. My question again is; is this virus attacking the tendons in my body?
If I ask anyone, ‘you’re just getting older…,’ they say. I’m now 43 and believe I’ve had all your symptoms on and off, milder, for at least 8 years. Will it get worse? Is the exposure of this virus linked to how severe the symptoms are? Or, will this get you eventually, sooner or later?
In my case it has not got any worse.
If you have muscle-twitch symptoms, you may want to look into the Chinese “HIV-like” virus, because muscle twitches are a common symptom. This Chinese virus is very similar to the virus described on this website, and may even be the same virus.
I feel your pain. I’m now into my 14th year dealing with the virus. I’m just starting to experience gum
and throat issues and my concern currently is dealing with the bad breath stemming from periodontal disease.
In my second and third years after contracting the virus, my entire scalp and skin had a severe burning
sensation. My scalp was intense. It was impossible for me to concentrate or even function like a
human being. Everything was crazy for me. I was in another world and it’s hard for me to describe
for you to gauge the extraordinary pain I was in. My scalp produce profusely big flakes of Seborrheic
Dermatitis( Dandruff ). After my scalp, came my skin (shoulder down) with the same symptoms as my scalp: burning, itching, dry,peeling, prickling, pin needle like, stabbing pains. Yes, I’ve endured. Some of the intense pain to my skin has subsided a little but still exist.The sole of my feet and heels still show Dermatitis. I once took a digital picture of me holding something and in the picture my hands looked that of a 70 year wrinkled old man hands. I was half that age and my hands were magnified by the camera. However my scalp symptoms continue. Hence, I don’t believe you crepe skin is from aging but rather the virus.
I had all of your symptoms you recently post in my first fours years and worst. I didn’t even had this site to communicate and only stumbled upon it ,l believe, last year. So many thanks goes out to Hip.
I am just starting to try various herbs now. Maybe later I can post more immediate results using herbs.
I always thought that the infection entered via the mouth or nasal passages.The recent post, by Hip, Chinese HIV Like virus site has provided me that insight to own assumptions. I can honestly say that there are two pictures on that site that are pictorial representation of two my symptoms.
I had the demartitis on my scalp too, and vitamin C helped me. I never got it again. It could work for you too.
How much Vitamin C did you take?
1g gramme is enough for me, from time to time. I take the basic ascorbic acid form orally, no specific brand. I noticed that my dermatitis was worse when my adrenal was bad. But my flare up was a long time ago now.
I will give vitamin C a try. Any insight to which brands gives the best results, thks
Thanks ed and hip for that.
Can I ask also how both of you think they may have obtained this virus, and with the risk of sounding mad, and I certainly do to my friends and family because I now just tell people what I think I have, shouldn’t we all?
Most people say I’m needing mental support but my thoughts are should any of their symptoms develop and/or friends, then they may want to find out more. I don’t think they’ll all suddenly gets symptoms because they necessarily think they’ve now got a virus – in any case I’ve told most of them anyway…
The only good thing from my point of view is having felt I’ve had this for around 8 years, I’m the only one that still thinks I have something which in itself shows that the symptoms of others that I may or may not have given aren’t as bad.
My 16 daughter has occasional twitches and mild anxiety (very mild)
My wife has pins and needles occasionally and both have itchy skin and looks a bit like crepe. But this is after 8 years.
My mother (78) appears to have developed crepe but then doesn’t every 78 years old? She complaints of sore muscles, restless leg and twitches at times as well as what she thought was like having a heart attack a few years ago but as I say, she’s 78…
Is all this a good sign?
Its your prerogative to inform as many has you want. The diseases has left most us vulnerable.
The virus has separated us from the rest of the world. How we think and behave others may see it
strange. We do so in order to cope with the strange symptoms. So what ever it takes, Andrew, to
make it thru the day, if talking helps, then do it. This site is a prime example. Finding ways to cope
and maybe more, a solution. So don’t stress yourself but always respect your family wishes.
Have you ever used an HIV test from Orawell usa?
Do you know of any creditable institutions outside of China that can substantiate the Chinese HIV like virus…example, The CDC or Worlds Health Organization.
A team from the Viral Diagnostics and Discovery Center, University of California San Francisco went to China several years ago to investigate the virus, but seemed to do very little, and lost interest in the research.
Did you every notice your hair/scalp get particularly dry and experience hair loss? Recently, my head has stopped producing oil and my hair is extremely dry. It seems very unhealthy. If so, were you able to remedy this in any way?
Hair loss I think increased a little after catching this virus (minoxidil, biotin, evening primrose oil help prevent that); but I did not get any dryness symptoms.
I have the dry scalp symptom but instead of hair loss, I get thin hair. Luck for me some months my
hair grows back full and thick. Seriously, I credit my all in one body wash for keeping my hair.
What all in 1 body wash are you using?
I can tell you everybody responsibly that we have all the same symproms. Including hair loss and scalp drying. The virus and Chinese hiv like disease is the same virus! So don’t say chineses hiv like disease ok? Cause it’s not exost! This name is so scary!
Xiongjie, what do people call the virus in China now? Originally it was called the “fear of AIDS” disease.
old spice three in one, wash, shampoo and condition. I’ve tried many but this is the one that works
best for me. Hope it works for you
Hello Good Guy,
Could you give us the treatment for the impaired gut you talked about one month ago?
Since finding out you have CVB4 have you had any luck with the products you’ve been trying out? Are you going to start measuring your last measured viral titer against new lab results to see if there is any improvement in say 6 month or 1 year intervals?
Unfortunately the Dutch lab that measured my coxsackievirus B titers has since stopped offering this test, and the only equivalent test I know of is offered by ARUP Lab in Utah, but ARUP charge $440 for the test, as opposed to the $120 charged in Holland. That’s too expensive for me.
I did a short test of the CVB4 antiviral dihydroquercetin, but found even very low doses over-stimulated my brain (feels like you have drunk 10 cups of coffee). Previously I noticed the same problem with quercetin, a closely related compound.
I am going to be trying Epivir soon, an antiviral used by Dr Chia for enterovirus.
Generally speaking though, I don’t hold much hope for antivirals, and don’t dedicate much time to researching them. I think it is better to try to find drugs and supplements that treat the various symptoms of ME/CFS, and the other conditions triggered by this virus, such as generalized anxiety disorder, anhedonia and blunted affect.
Isn’t reducing your viral load the only real chance at correcting the skin issue though? By the way, I just got my tests back from ARUP:
Coxsackie B4 — 1:320
Also, my immunoglobulin is low.
Immunoglobulin G, Qn, Serum: 697, Normal: 700-1600 mg/dL
Subclass 1:311, Normal range 422-1292 mg/dL
Other subclasses were in the normal range.
Dr Chia says that CVB titers of 1:320 or higher at ARUP Lab are evidence of an ongoing active infection.
If there were some effective antiviral or immunomodulator for coxsackievirus B I would be taking it, but unfortunately there’s very little available for enterovirus infections. Oxymatrine helps some people, but it did not work for me. Maybe in 10 or 20 years time, the drug companies will have a good antiviral for enterovirus, but at the moment sadly there is not much available.
I posted a comprehensive list of CVB and echovirus antivirals here, if you want to try some. I tried many on this list, but without much luck.
I’ve lost a ton of weight. Like 20-30 lbs (mostly muscle). Did you experience this at all? Or Ed, did you experience this? I’m trying to figure out how to maintain my muscle mass.
Most people with my virus put on weight as belly fat; the virus seems to trigger some abdominal obesity.
Hip, ive tried to combat the abdominal obesity by eating healthy. But in doing so, my body, in turn, has resulted in metabolizing muscle over fat. It’s the strangest thing. If I eat more calories, I may be able to maintain my size but I’ll certainly gain a lot of belly fat.
Definitely, muscle mass evaporate quite easily because of the virus. Which probably explain why
we get the crepe skin. Another thing is; when the muscle continues to evaporate, over time, the crepe skin sets in and progress has we become older.
I’m now starting to look into the lymphatic system has the possible culprit for muscle lost turning into
fat. Mostly clear fluids I’m looking at. More protein and less carb.
M…. have you done endoscopy?
No I haven’t done endoscopy yet. Do you recommend?
I have the mid-dermal elastolysis as proven by biopsy in multiple areas. Also the fine wrinkling, and dusky pink reticulated rash on the upper chest and back, which appears at night when I am tired and fades out when I am rested.
It is important that you know that MDE can be associated with autoimmune disease, which can give flu-like symptoms in some cases. In my case, I am proven to have the autoimmune disease called limited systemic sclerosis, associated with my very high antinuclear antibodies, and specifically anticentromere antibodies. Also Hashimoto’s thryoiditis (another autoimmune disease), which can give the sensation that all is not well in the throat.
There are genes that predispose to development of autoimmune disease, but they need triggering. But there are some suggestions that viiruses of certain sorts may act as the triggers.
Mid dermal elastolysis is a somewhat benign thing. However autoimmune conditions can kill you due to their deeper organ effects. So I would be more concered that you get to a rheumatologist and have testing for the antinuclear antibodies. If those are present then your doc will have to check you for specific antibodies to try to identify which antinuclear antibbody has made your ANA positive. Different antibodies are associated with different autoimmune diseases, and the various ones get treated differently that others. So it pays to know which one you are dealing with. My antticentromere antibodies have affected my heart, lungs, pulmonary hypertension, kidneys, shoulders and elbows( tendonitis and rotator cuff syndrome), digestive tract, liver, neuropathic pain permanently puffy fingers, Raynauds, thyroid, eye-dryness, and low tension glaucoma. There are some who say that age related macular degeneration may also be an autoimmune effect, and indeed I am starting to get the macular drusen which are generally the harbinger of AMD. I also have antibodies that can cause danger of clots.
So my point is that you may have something more than just a virus. And it could have much deeper ramifications. Please see a rheumatologist and ask for an ANA test.
Thanks very much for your clear and well written post.
Interestingly enough, new research is indicating that that myalgic encephalomyelitis (ME/CFS), which is the disease this virus triggered in me, may be an autoimmune disease. A clinical study showed that many ME/CFS patients made major improvements after being administered the rheumatoid arthritis drug rituximab. Rituximab works by deleting B-cells in your blood; B-cells produce the autoantibodies that attack the body’s own organs.
Studies have shown that ME/CFS patients have autoantibodies that target various receptors in the nervous symptom, which might help explain why the symptoms of ME/CFS arise.
So indeed, although ME/CFS seems to be triggered by a virus, its symptoms may be a result of something more than just a virus.
I have not taken an ANA test, and I guess I should; but in ME/CFS patients, ANA is usually negative (in ME/CFS a positive ANA is no more common than in the general population — and around 3% to 15% of the general population have a positive ANA).
I am not sure if the MDE-like symptoms that people with this virus often display is actually MDE, since MDE is rare, yet most older people with this virus seem to display MDE-like symptoms.
Anybody look into the borna virus as a possible cause?
Since the incubation period of bornavirus is 4 weeks (in horses and sheep), and since the incubation period of the virus described on this website is just 12 hours, it is clear that bornavirus could not be the virus I caught.
Bornavirus has previously been linked to psychiatric conditions such as anxiety, bipolar and schizophrenia, but the latest research suggests that in fact there is no association between bornavirus and psychiatric illness in humans.
The other people who you believe were infected by yourself, you mentioned all got crepe but the severity though of each were less – around 1/10 more of less may have got it worse.
Do you thing all who get this virus, will sooner or later worsen to the degree of yourself or do you feel that the people who you’ve infected, and by that I also mean the ones I feel I’ve infected, will have the virus, but continually on a lower level?
I have seen no evidence of people with the virus worsening over time.
Does anyone here have any experience with the removal of polyps? I saw an ear, nose, and throat specialist today — the third one I’ve been to about my chronic sore throat, which I’ve had for nearly a year now — and he discovered a small polyp on/near my larynx. I am scheduled to have it removed and analyzed next week. The doctor said it didn’t look like something I should be concerned about, but he thinks it best I have it removed. It is about 3mm in diameter.
I’m thinking the polyp could simply be due to the irritation of having a sore throat for a year. I’m almost hoping that it’s the cause of my sore throat, though, because the sore throat/virus described on this website seems to be undiagnosable by most doctors. I am skeptical that removing the polyp will have any positive effect, especially considering my other symptoms, which are in line with those described by others here.
Hip and all– have you heard about fluoxetine Prozac as cvb4 antiviral and has anyone tried it?
Dr Chia’s experimenting with it, for his ME/CFS patients; I reacted very badly to an SSRI, so don’t want to touch it.
I’m willing to try it, didn’t get a (too) bad reaction to other SSRI. Question is: where am I going to find fluoxetine? If I go to the doctor saying I’m depressed he probably sent me to therapy or give me one of the 100 other SRRI’s…
I had all the symptoms of this:
– Kissed someone then 3 days later sore throat and conjuctivitis
– took 2 lots of antibiots didnt fix the throat
– high anxiety as thought i caught something coulnt sleep
– dry eyes and crepe skin showed up all over
– then 20 days later a cold sore blister on lip which disapeared in 1 day
– hsv-1 negative, cmv negative, ebv past but no recent,
– then started taking antidepressens to help sleep
– then fatuige set in now where im always tired and dont get a restfull sleep.
one eye Conjuctivitis is that a symptom of the first infection?
My sysmtoms match this virus and anxiety/depression. Dont know what it is>
HI Gavin, the fine skin wrinkles produced by this virus do not appear until 12 ot 18 months after first contracting it.
Your fatigue and non-refreshing sleep could be an indication of myalgic encephalomyelitis / chronic fatigue syndrome — have you checked your symptoms against those of ME/CFS?
Yes I have but i don’t have , sore joints or muscle pain , no headaches ,no enlarged lymp nodes, not tired after exercise.
I Just have concentration issues, fatigue, unrefreshed sleep and sore throat and low mood.
Do you think its just anxiety/depression
It’s hard to say at this stage, Gavin. How long ago did you contract the infection?
11 months ago
When did the skin wrinkling first appear, in this 11 month period?
In my case, I did not get full ME/CFS until around 2 years after I first contracted the virus. Although I had some fatigue even at the early stage of the viral infection, it was relatively mild.
By your symptoms, you almost qualify for chronic fatigue syndrome diagnosis using the CDC criteria.
Incidentally, post-exertion malaise means that your symptoms get worse after physical or mental exertion.
St in wrinkle came after 3 months.
I don’t meet the cdc as I don’t have 4 of the listed criteria and the main one of PE malaise I don’t have.
I tested myself and skipped on skipping rope for a while yesterday and don’t feel any different .
Could this all be anxiety/depression
The physical symptoms you have cannot be due to anxiety or depression, but you may be also suffering from anxiety or depression. The anti-anxiety supplements on the Treatments Page may help.
Then what could it be if it doesn’t match your time frames
Hello Benard & others,
Firstly, my apologies for delay in publishing the promised treatment. I have been extremely busy. I will try to write a short summary this weekend. Secondly, I am happy that findings of our team have been fully validated by Cornell University research team this month in this paper. Just would like to add that altered microbiome is not the cause but a consequence of other triggers, the most probably HHV family group pathogens.
Did you find HHVs in the stomach and the colon?
From my reading, HHV7 is particularly found in the stomach (in asymptomatic people too).
Looking forward for your treatment.
Thanks Good Guy, I look forward to your summary of the treatment.
Judging by my own symptoms and the (milder) symptoms of my friends I think I have the virus described on this website. I’m currently a student in the US and I wonder whether I can order the ARUP Coxsackie test without a doctor’s order. Is there a way to do this? (The price is not a problem for me.)
P.S. Thank you Hip for this wonderful comprehensive website.
Not sure. You could email ARUP and ask.
They won’t release the result to you. They want to give the results to a doctor.
You can order the test on your own. I ordered it myself, and when I sent the sample with the form (I’m in France) and that ARUP received it, they asked me the doctor’s address and the prescription for the test. I told them I had no prescription (it was not a problem apparently) but I gave them the doctor’s contact detail. They sent the results by e-mail to him.
Thank you, guys
How long did you try hgh for and what results did you have? Also, what brand did you use and do you know of a good website to order it online?
See this earlier post. I used the very cheap Gen-Shi brand of HGH from http://steelgear.net, but it does not seem to be available at the moment.
A good review site for HGH / anabolic steroid suppliers is here: https://www.eroids.com
I got the biopsy results from the polyp they removed from my larynx, and it was benign. I’m relieved, of course, but now I’m back to square one with my year-long sore throat.
I suspect the virus described on this website is responsible, but getting a diagnosis isn’t so easy. I’m now on my fourth specialist, and she is recommending a course of amoxicillin. I’m sceptical, obviously, but hoping the antibiotics have some effect.
At this point, I’ve tried, without effect:
Flux insane/Flonase (for allergies)
Omepraziol (for GERD)
Fluconazol (for yeast/candidiasis)
Vitamin D (my level’s now good, but throat’s the same)
Fish oil (Omega 3 plus EPA)
Licorice root tea (absolutely gross-tasting super-strong Danish product)
I took a three-day course of penicillin last fall for pneumonia. It cleared up the pneumonia just fine, and I thought I noticed a slight improvement in my throat. Now we’ll see what the longer, ten-day course of amoxicillin will do.
LOL spell check: flux insane. I guess you guys know what I mean anyway.
Hip & Ed,
I’ve found that over the last few months my muscles have been rapidly wasting away. I’ve lost 30-35 lbs of muscle since February and there doesn’t seem to be any sort of reprieve. When you contracted this virus did you experience any sort of weight loss? I realize that this is more indicative of the Chinese version, but I’m wondering if you lost muscle mass and gained belly fat and just didn’t account for it at the time? Ed, your symptoms seem to be in line with mine and I believe you experienced some sort of muscle wasting — did you notice that this symptom diminished after a period of time? I’m concerned because my body is currently in a cachectic state and this is obviously not sustainable.
What does your doctor say about the muscle loss?
Once I got the virus my six pack went and belly fat appeared two years later. That was 15 years ago.
If you got the coins, find yourself a good Naturopathic Doctor. Main stream Doctors and their medicine
have a poor record dealing with chronic sufferers. Currently I am fighting Dysesthesia.
I wish I had some coins.
They have nothing to say. One doctor said it was myositis and the other one said I should see a nutritionist. I requested hgh from both and was declined by both. So, I’m probably just going to get it myself. I’ve increased my protein intake substantially and my BCAA’s but neither are helping.
In what way is a diagnosis of myositis “nothing to say”? That is a very definite diagnosis. What made you decide not to follow up on it?
I guess in terms of prescriptions they have nothing to say. I’m going to go to a gastroenterologist but I don’t know how much good that’s going to do.
The doctor did not suggest anti-inflammatories or corticosteroids, the usual treatments for myositis ?
Did you see the info about polymyositis on this website here?
Greetings HIP, ED, etal.
Of the treatment options listed, there are a few things I haven’t tried – one being AMISULPRIDE. Question: would SEROQUEL in low doses have a similar effect? I have tried many of the supplements and suggestions on here – basically since October 2015 – but to very limited benefit.. Like you HIP, the white tiger oxymatrine made me feel even worse
I moved my Q to the top (for those not wishing to read my ramblings below….
Its been some time since I have written, largely due to “chasing rainbows” with this dastardly illness – and now, general apathy and an inability to organize thought (and write). Amongst the skin manifestations (crepe paper and sebhoric keratosis) I primarily suffer from all the neurocognitive – neuropsychiatric symptoms listed here – to the extreme and then some, and it has worsened. I’ve now seen a total of 3 general neurologists, 1 neuro-opthalmologist, 2 neurocognitive neurologists, a psychiatrist, an endocrine specialist, and am now scheduled to see a neurosurgeon re a workup for normal pressure hydrocephalus. Other things Ive been tested for so far are extensive ranging from fronto temporal dementia (fit the profile for bvFTD – or “Pick’s – but I have insight and no visible atrophy on imaging or on a pet scan), prion diseases, etc etc – 3 MRIs, a CT/Pet scan and an eeg thus far have revealed i have mildly enlarged ventricles (3rd I believe) and some white matter atrophy.
I just don’t know what to do/try next as I suffer lowered consciousness mixed with overwhelming anxiety (what a combo) and now am so amotivated, anhedonic, and disconnected, i can do little for myself. This is not meant to sound a sob story – just stating my present condition, and that penning this is a herculean effort. Pending the UCSF neurocognitive findings and the outcome from the workup with the neurosurgeon in the next week or so, Im also wondering if I may be having some type of frontal or temporal lobe seizure?
As for the COXSACKIE tests via ARUP – here are the findings November last
Echovirus Ab Type 6 <1:10 <1:10
Echovirus Ab Type 7 <1:10 <1:10
Echovirus Ab Type 9 <1:10 <1:10
Echovirus Ab Type 11 <1:10 <1:10
Echovirus Ab Type 30 1:160 <1:10
Coxsackie B Ab Type 1, Virus 1:80 <1:10
Coxsackie B Ab Type 2, Virus <1:10 <1:10
Coxsackie B Ab Type 3, Virus <1:10 <1:10
Coxsackie B Ab Type 4, Virus 1:80 <1:10
Coxsackie B Ab Type 5, Virus <1:10 <1:10
Coxsackie B Ab Type 6, Virus <1:10 <1:10
Im not only open to suggestions – but desperate as my quality of life has eroded to such a low point where daily existence is agonizing.
Should I fight to see Chia? OR ???
Thanks again so much guys (and gals)
After my success with very low dose amisulpride, I decided to try some other atypical anti-psychotic drugs: Abilify and Risperdal. Abilify I found had a similar effect to amisulpride, but had a side effect of being overstimulating, so I stuck with amisulpride. Risperdal actually worsened my anhedonia, so I dropped that. Yet I read online that Risperdal can sometimes put ME/CFS into remission in some cases.
So from my experience it seems that these atypical anti-psychotics all have individual effects, and are different. So it’s hard to say whether Seroquel might be similar in effect to amisulpride.
If you are struggling with motivation, one drug I found helpful was low dose pramipexole 0.18 mg x ½. This also had antidepressant effects in me.
If you want to improve thinking and cognition, I find the supplement piracetam 1000 mg has dramatic benefits (but for me personally, it also worsens anhedonia, so because of this, I don’t take ti much).
Dr Chia considers an infection with enterovirus to be active when titers are 1:320 or higher. Your highest titer is 1:160 for echovirus 30, which is just below Dr Chia’s threshold of 1:320.
So it does not look like enterovirus is playing much of a role in your ME/CFS. So it is probably another virus that is the culprit in your case. Have you tested for active ongoing infections other viruses linked to ME/CFS, such as the herpes family viruses? It is usually either enterovirus or herpes family viruses that are thought to underpin ME/CFS. Also, parvovirus B19 can cause ME/CFS in some causes; and Chlamydia pneumoniae or Borrelia may be involved.
I think you said you were positive for Lyme: did yo try a standard Lyme treatment such as the antibiotic doxycycline?
If herpes family viruses are your problem, then the potent antiviral Valcyte will do a good job fighting these infections.
By the way, if Valtrex causes psychiatric side effects (as if sometimes does), then as an alternative you can try Famvir.
Did you see my document here:
Chronic Fatigue Syndrome — A Roadmap for Testing and Treatment
That document tells you all about viral testing in ME/CFS.
Jack, for your anxiety, did any of my 29 anti-anxiety supplements work for you (they are listed in this post)?
If not, then you might want to consider some standard anti-anxiety drugs, such as SSRI drugs; benzodiazepines (although for around 1 in 3 people these can have nasty tolerance and withdraw symptoms); nonbenzodiazepines (Z-Drugs) like alpidem, which act in the same manner as benzodiazepines, and have similar efficacy, but with less tolerance build-up and milder withdrawal effects; tricyclic antidepressants like amitriptyline; Seroquel; Buspirone; anticonvulsants like gabapentin; antihistamines like hydroxyzine. There are plenty of options.
And if like me you have elevated titers to cytomegalovirus, this is a known cause of anxiety, and so some antivirals for cytomegalovirus may lower anxiety levels. I found the following cytomegalovirus antiviral protocol helped lower my anxiety:
Terminalia chebula 1500 mg
Bee Propolis 4000 mg
Lactoferrin 500 mg
Monolaurin 1 scoop
Chinese skullcap (4:1 extract) 1000 mg
Genistein 100 mg
Curcumin (Longvida) 400 mg
I am sorry to hear and I feel your pain. I’m going to give you my complete thoughts and offer you
Lets me start by saying main stream doctors are very good cutting, removing and replacing body
parts. They have a very high rate of success doing these. But when it comes to chronic illness not
so good. If you take this web site for instance, mainstream doctors success rate is insane, zero.
Not only this web site but other web sites as well showing low rate of success. Hear the stories.
Everyone is telling about how many doctors they have seeing and still no one is better.That’s just the
fact. And yet we are trying really hard to get better.
My suggestion if you have the coins, go see a Naturopathic Doctor. Research a good Naturopathic Doctor in your area that can deal with your concerns. Unlike mainstream doctors they’re not afraid
to think outside the box.
I have tried 3 different naturopaths (actually one is a D.O – Lyme specialist). No improvement. I have tried autohemo ozone treatments every 3-4 days, ozone, meyers cocktails, etc. I have only grown mentally more impaired, and to where my ability to think for myself is challenged. Its like ive become retarded, autistic, and emotionally dead in one fell swoop. I have tried many of the suggestions on the treatment page here (usually for 60 + days minimum) have found a few helpful therapies – but i remain very ill – and have been slipping. Im still awaiting UCSFs final report on my “dementia” and have an appointment with yet another neurologist to see if I have normal pressure hydrocephauls, regardless – things suck pretty horribly right now.
That said, I will review HIPs list and see what I may have missed. As for valtrex/valcyte, I had tried it almost a year ago and it triggered the mental mess im in now and made me psychotic.
I need a miracle…
Jack, Valcyte is not the same as Valtrex. Valcyte is much more potent, is broader-spectrum for herpes family, and has shown significant benefits for herpes family associated ME/CFS. When you take Valcyte though, you must do it under medical supervision (regular blood tests for liver function), because you need to watch out for potential serious side effects.
When I had mild psychosis symptoms (due I thing to extreme levels of generalized anxiety disorder, which is known to trigger some psychosis when severe), I found the supplements and drugs listed at the bottom of this post helped quell the psychosis symptoms.
I have copied the list down (now if my attention span will comply long enough for me to process – ha! There are a few things I havent tried, and i may have underdosed on some. Im not giving up yet, but damn is this ever hard …. I have not taken valcyte (its an iv drug i believe) – I fear if it works by the same mechanism as VALTREX (and the psychosis it caused me) that the valcyte could do me in. I have noted famvir as an alternate. In my rounds of ceaslesess testing i will see if any of my viral titers for herpes are elevated.
W regards to LYME, i had a positive igenex test (i believe 6 bands were conclusive) that was appx 18 months ago (before these neurocog – neuropsych problems) – BUT in my lumbar puncture performed last Feb. they did a lyme western blot that showed clean. The only noted issue in my CSF was a midly elevated protein (2 points over) As for my enterovirus tests from last November (then a few mobnths into my mental issues) I believe my COXSACKIE AB 1 and AB 4 were both 1:80 and ECHO AB 30 was 1:160.
Im so damn lost and feel like im just slinging mud at a screen at this point – ha! I will focus as best I can on the original recommendations for treatment and see what I may have missed.
Valcyte is a completely different drug to Valtrex; it is an oral pill not IV. The problem with Valcyte is that you can feel crap for the first few months taking it, though this is not always the case.
But Famvir is an easier option, because it is generally a well-tolerated drug. Valtrex or Famvir (which are similar) work against EBV, but not against HHV-6 and cytomegalovirus. Whereas Valcyte works against all three, and is much stronger.
What were the titers of your various herpes family viruses (HHV-6, EBV and cytomegalovirus) when you were tested? Did your test results say that these were active infections?
If you have active herpes family infections, Dr Chia may not be the best ME/CFS doctor to see, because his specialty is enteroviruses. If you look at the bottom of my roadmap document, you will see a list of various ME/CFS expert doctors. Dr Daniel Peterson in Nevada might be one to try.
Jack, ok you tried several naturopaths without success. Let go back to basic and tackle cognitive improvement. Which, judging by your post is the immediate concerning you want to resolve. In your postings you reveal you have several infections or viruses.
Go and have these infections/viruses screen by labs that hospitals and doctors use in your area.
Basically what I am saying is, go have a doctors test you for those infections/viruses a second time
or even a third time. You have got to be 100% sure which infections/viruses you have. Hopefully
you can get some results before your next appointment with your neurologist. It is more than likely
your new results will show a reduction in infection or viruses. Remember, if you are dealing with
mainstream doctors, you must follow mainstream protocols unless your doctor is willing to accept
private lab testing. Most doctors will not follow on private lab results because its a risk to their
practice. Can you imagine a mainstream doctor treating you base on results from a private lab and something goes horribly wrong.
And maybe that is where your dilemma lies. Which results should I believe, private labs or medical
labs that practitioners send the general public to. As I mention, if you are going to use mainstream
doctors, use mainstream labs. If you are going to use private labs, you have got to do a lot of
research, a lot. And I do mean extensive research. Here’s why… there has been an increasingly
amount of scrutiny by mainstream doctors with regards to private labs results. Mainstream doctors’
argument is why are they not seeing the same results as private lab results. And some of these private labs are now being challenge in court. And lately the fight between the two is rather concerning. The latest news coming from the media is that the CDC and some countries around the world are concern about private labs positive lyme diseases results. Yet when those same patients were tested again for the same lyme diseases yield a negative results.
I just wanted to stop back to this board and share my experience. Today I believe myself to be roughly 95% recovered from this illness with the only lasting symptoms being a chronic low-grade sore throat that is very manageable–it flares up when I speak for extended periods of time, or when I exercise for several hours and my breathing is increased. Also, a slight hearing degradation and possibly some memory loss. Despite these lingering symptoms, my quality of life has increased immensely. My receding gums have filled back in, my sore throat is MUCH improved, my energy levels are back up, depression and social avoidance issues have been overcome (never had these issues before the onset of the illness), my compromised immune system is functioning properly again (no more opportunistic infections), and I can now describe myself as being overall… healthy–though all of this took many years to achieve.
I wish I had some magic cure or exhaustive regimen that I could pass on to other members suffering in this community, however, in my case I am unable to put my finger on any one approach that led to my improved condition. However… having said that, I do believe that forcing myself to engage in prolonged cardiovascular exercise (preferably outdoors in the sun) helped more than any other approach. About 2 years into the disease, I started running–short distances at first–but later half-marathon distances. This has been replaced these days with hiking and road cycling, however, the positive benefits remain. Hopefully someday I will be able to finally regain the last 5%.
If there have been other similar cases, I would be interested in hearing how many others have achieved remission and what strategies have worked for them.
Nice to hear from you. Tell me, when you started doing exercise when you were ill, did you get the “runner’s high” feel-good factor just after your run? The reason I ask is that healthy people usually get this “runner’s high” antidepressant, mood boosting lift from exercise; but one of the symptoms of chronic fatigue syndrome (that viral infection can trigger in some people) is the loss of the antidepressant, mood boosting effect of exercise.
It is thought that this mood boosting effect of exercise arise from the endorphins released by exercise. However, in ME/CFS, endorphin levels are lower than normal, so there may be some dysfunction in the endorphin system, perhaps explaining why in ME/CFS you unfortunately get this loss of the mood boosting effect from exercise.
I used to go running nearly every day before I developed ME/CFS from this virus, because running always made me feel good immediately afterwards. But now with ME/CFS, I get no good feelings from exercise, so unfortunately there is little psychological incentive to do it. If I could work out how to switch back on this mood boosting effect from exercise, I’d probably automatically start exercising regularly.
So far, I have not been able to figure out how to switch back on the “runner’s high.”
(Note that for many patients with ME/CFS, exercise has to be approached with great caution, because too much can worsen ME/CFS.)
My theory regarding the virus (or at least the virus I had/ have) is that it acts mainly by inhibiting the immune system, allowing certain kinds of opportunistic infections or imbalances to occur. Running and other types of cardio promote the production and release of key hormones, endorphins, and has other effects like modifying blood PH which I believe aid in combating not only the virus, but also associated opportunistic infections. In addition, cardio helps burn up excess simple sugars in the bloodstream that bacteria and fungi feed on. I also believe that it is important to moderate sugar intake and to take supplements that specifically target infections like candida, etc… Sunshine, is also incredibly important for converting vitamin D and regulating mood so I always try to engage in outdoor sports in a natural setting away from urban air pollution.
As for the runners high… I would say that in the early days it was very “muted.” Not that it never occurred but that it was not very pronounced when it did manifest. I have always been fairly physically fit so I know what a proper RH feels like. Sunshine and fresh air though would always boost my mood and I felt noticibly better after each outing (though as I mentioned before, the increased breathing would agravate my dry cough and sore throat so I would need lozenges to combat this).
Unfortunately, I believe this condition (mine at least) is very difficult to fix by medicating because the exact vector and pathways are, as of yet, still unknown. However, I would be very interested in hearing the stories of others who underwent successful courses of treatments that relieved the majority of their symptoms.
Absolutely mind blowing. Congrats on taking back your life. How long have you had the virus and
were your symptoms equally devastating as others have mentioned on this site.
Hi Ed, I imagine I contracted the virus around 10 years ago. It was quite debilitating, especially for the first 3-4 years with a 90% match to the common symptoms listed here on this site. I also had a few added symptoms which I have not read about anyone else experiencing such as severe angular cheilitis. However, the fatigue, sore throat, and depression were the worst and most pronounced of all my symptoms. Cannot really say I had serious muscle wasting or any joint issues, but some. At year 4 I began to recover, very incrementally at first (a year after starting to run). By year 7 I would say I was back to the level I am still at today–mostly recovered (90-95%). I forget now what abnormalities were found at the time, however, I want to say low IGG(C?), low platelet count, low WBC count, and a slightly inflamed spleen.
It’s crazy how all you have written down is exactly what is happening to me.
I spent my childhood in Adana, Turkey, a city where the temperatures, and the moisture in the air are extremely high in any season. After turning 18, for the college, I had to live in Ankara, Turkey, a city with harsh winters. Now 21, I have been living in a dorm room with three other people since I was 18.
In my first year– when I was 18– there wasn’t any problem. I mean I have always been an introvert, but at that time I believe I was strongly motivated, got ambitions & desires. And most importantly, now I understand this, there wasn’t this brain fog. I felt like my brain was alive.
My first year in the college was in the preparotory school to improve our English. Having completed that with an excellent grade, I was ready to go my department– computer engineering. I don’t recall having a serious infection in my first year in the department, but I remember I didn’t feel the same towards the end of the second semester. It was like I was “70% alive” comparing it to the year before that. I made myself believe I was “70% alive” because of the workload in the college. By the way, what I mean by “being alive” is like “having a fresh mind”.
In my second year in the department–this year I got this flu/or cold towards the end of the first semester– right around the winter. Even though I say above I was “70% alive”, I wish I could rewind back to that time. Because after this flu, it only went worse and worse. At that time when I was ill, I thought I couldn’t think straight because I was “actively” ill. I mean nobody can think straight when they are under the influence of a “normal” flu or cold. That’s why I didn’t panic, I was always telling myself “don’t worry, it’s just a simple bacterial infection, it will disappear”. Turns out, it hasn’t.
After that flu, now, I can definetly say what has changed due to this sickness. I have a blocked nose, and brain fog. I am procrastinating almost everything, it’s like I’m tired of making decisions, even when it comes to a vital decision such as what to eat. I was already having problems with smelling due to my congested nose, but it was later when I realized my throat was not the same anymore also. I drank a 1/2 lt. water one day after I woke up. Then I did my breakfast. I can tell you that I felt what cheese tasted like. That was the time I realized I have also lost my taste in the throat. It’s like there is this segment in my throat that needs to be taken out. It feels like it’s blocking the way.
It’s also not easy on the mental side. I have always been an introvert as I said, but this is another thing. It’s like my hope to improve my life has died. I’ve never felt like this before. Another mental consequence is now I am too sensitive to any noise when I’m sleeping. I can’t sleep well even three days in a row. When you are sleep deprived, there are tons of things that may follow, so it’s a major problem.
There are also other symptoms in my experience such as lower back pain, but I believe it was already there before I got the virus. The only thing that may have happened is that it got stronger or “activated”.
Now that I’ve explored your website, I can’t wait to read all your writings and the other people’s comments. I hope all the sufferers of this virus will get through this.
Hi murat topak
Your fatigue, brain fog, and sensitivity to sound could be due to you having myalgic encephalomyelitis (chronic fatigue syndrome), which is often triggered by a viral infection. These are all symptoms of ME/CFS.
ME/CFS is typically triggered by enterovirus or Epstein-Barr virus infection. There is some info about ME/CFS here.
I use earplugs to block out the sounds at night, which helps sleep.
Thanks for the suggestion. I remember the times I used in-ear headphones with some music trying to sleep. It works better than the earplugs for me. When there is no music you hear your body’s sounds. That makes it hard for me to sleep. But even if I manage to sleep like 8-10 hours, there is still no point because it certainly lacks quality. I don’t feel any refreshment.
Having looked at CFS syndromes, orthostatic intolerance is definetly there for me. After a dinner or a lunch, I can’t have a decent posture. It feels like I will throw it up, or pass out.
There is too much to read and be informed, so I’m still learning. I have been having a passive life style for the past 3 years. I’m planning to do cardiovascular exercises maybe it triggers my immune system, or I hope it does.
We have a cat in our house, it’ like 8-9 years old. She’s also in bad mood and not active as she was 2-3 years ago. Do you think it’s possible the virus is able to transmit to and from animals?
Enteroviruses such as coxsackievirus B, if that is the virus you have (it is linked to ME/CFS), can infect a number of different species such as mice, rats and pigs, but I am not sure if it is known to infect cats, but it’s possible.
Hip , Do you think that toxic mold could be causing a lot of these symptoms ? I have looked high and low, and I found black mold in the home I was renting . after I moved , my breathing problems eased up a lot but are not completely gone. When I stopped sugar and started taking supplements and binders , my mucus got almost normal . I’ve had bout’s of energy, like I’ve not seen in three years. I’ve still got a lot of symptoms but life’s not as bad as it was. I hope I see a rainbow at the end but still not sure.
Hip could you please email me? email@example.com
Yes, toxic mold has been implicated as a possible causal factor in ME/CFS.
Has mold not been implicated in ebv? Do you not think mold could be the cause of this virus ? When I read your story , how this started with you , it’s like reading my own . when I first got sick, I thought it was mold but when I asked my doctor he said no way. So I started looking other places but now I think it was/is mold and my doctor is wrong. A family member owned the place I was living and after I moved , he went in and remolded and tried to clean the mold out and now he has some of the same symptoms like chronic fatigue and burning , pins and needles of the skin . But not the respiratory and IBS, loss of smell and taste ext…. That I do. But I’ve read that mold act in three stages and I think I’m in the 3rd stage and he is in the first. I’m a farm boy not very educated and you seem to be , so I ask you if this could be correct ? Not asking for a diagnosing , but could this be possible.
I saw this on yahoo news.
So far, treatment for herpesviruses has been incapable of fully eliminating the virus from its host, meaning the latent infection is lifelong
The researchers tested their theory in three different strains of herpesviruses: Epstein-Barr virus (EBV), the cause of mononucleosis and some cancers; Herpes simplex viruses (HSV-1) and (HSV-2), which cause cold sores and genital herpes respectively; and Human cytomegalovirus (HCMV), which causes congenital herpes
it is hopeful.
Some very similar symptoms to Lyme disease from what I have read, don’t waste your time with nhs in the UK. Quite a few of us have been testing positive with arming labs Germany, certainly worth looking into.
Still improving after about 4 years of this condition. The iodine in the beginning really helped me and Hip’s recommended herbs for “anxiety”. The mental symptoms for me are the hardest, always valued my ability to comprehend complex things and express them in a easy to understand way.
My research has led me to Encephalitis Lathargica. It has a lot of similarities to this condition and is not well known today. Not every one with that condition was in a state of permanent catatonia. It had more than one type and should not be ignored.
Just checking in, hope and pray for every one.
Funny you should mention Encephalitis Lathargica, @Rooster, as only yesterday I created this thread:
Evidence for enterovirus as the cause of encephalitis lethargica
Does anyone else struggle with chronic post nasal drip? I’m constantly clearing my throat and hacking up thick mucous. Does anyone know how I can relieve this symptom? It is causing me a lot of discomfort and distress.
I’m currently in a state of panic as I have been feeling less well lately. I’m weak in my back and legs, have thick mucous stuck in my throat, my brain and ears are buzzing, and my anxiety and depression is high. I’m further depressed by the fact that I’m afraid I’ve passed this virus onto my husband and 18 month old child. I feel such hopelessness and I worry about my child’s quality of life.
I need help as to where I can get tested for this virus or other possible viruses? I’m willing to pay out-of-pocket at this point as I have exhausted my insurance benefits and traditional medical system. In the past 4 years, I have been seen by neurology, rheumatology, pulmonology, cardiology, an ENT with no answers other than they think I’m anxious and I’m “doctor shopping.”
I’m in tears writing this. If anyone can offer suggestions of where I can get tested, or a concrete plan of attack to reduce me and my family’s symptoms, it would be so much appreciated.
Hi Nolongerhealthy (I think you were “Gemini Child” in your earlier posts). What symptoms did your virus precipitate in you? Did some of these symptoms also appear in your husband?
Yes, that was my previous user name. I had traveled to Costa Rica and when I came back to the US, I had a terrible viral infection that had me very fatigued for approximately a month. It was an illness like no other, symmetrical sore joints everywhere, extreme lethargy, and weakness. I knew I was very sick because when I went to the doctor I was scared and I kept on going to my primary at least 3 times that month. My husband has not had the same amount of fatigue, but I have noticed in him the nasal congestion and increased irritability and sometimes aggressive behavior (short with patience, raised voice). I try to talk to him about my illness, but he doesn’t understand it. (It’s been a long 4 years of me trying to get better and I think he’s tired of hearing about it). I did seem to get better after a tonsillectomy, but my symptoms came back. I do wonder if being on bedrest for 10 days helped, vs. taking out my infected tonsils.
My mental confusion and weakness and all the symptoms in between has me completely depressed. I do have some days that are better than others, but it is incredibly hard to manage working full-time and raising a small child. I need to find relief to manage. After I posted today, I did find some Selenium and NAG that I ordered months ago. I plan on taking both of them to see if that helps. I do want to get some blood work done though. I had mono in college…
Sorry if this is all disjointed. Kind of stream of consciousness at this point. Also, have you ever thought about having a closed group on Facebook? Maybe that’s too identifying, but I think it would be nice for support and possible meet ups for people that might live close by one another.
Given your fatigue and mental confusion (brain fog?), do you think you might have developed chronic fatigue syndrome, which is typically triggered by viral infection (usually Epstein-Barr virus or enterovirus infection, sometimes other viruses).
To get a diagnosis of CFS, you have to satisfy the CDC criteria for CFS .
I definitely feel it’s CFS, or CFS like. I haven’t pursued a diagnosis – do you think it would be helpful for me if I did?
Also, could a blood test confirm if any of those viruses were active in me?
For CFS, you can only be diagnosed on your symptoms (there is no blood test for CFS), so if you satisfy the CDC criteria, and your doctor has ruled out other illnesses that can cause similar symptoms (such as hypothyroidism, anemia), then you have chronic fatigue syndrome (also called myalgic encephalomyelitis, or ME).
It would be good to get a ME/CFS diagnosis, because if you did have ME/CFS, there are a several treatments that can help.
One of the classic symptoms of ME/CFS is PEM (post-exertional malaise), which is where your symptoms become much worse after physical or mental exertion (you can feel worse either hours after, or on the next day after exertion). Do you think you have PEM?
A good CFS doctor will test you for a range of viruses linked to ME/CFS. Antivirals can help, once you know which active viral infections you have (different viruses require different antivirals).
There are three lists of local CFS doctors towards the bottom of this document:
Chronic Fatigue Syndrome — A Roadmap for Testing and Treatment
You may be able to find a local doctor with expertise in CFS.
Most people do not seem to understand CFS, including close family members; only the patients who have it really know what it is like. This lack of understanding you will also find in many doctors. Many doctors are clueless about this disease, and many will just tell you that it is “all in your head”, that is is a psychosomatic condition (which is completely wrong). If you get a doctor like that, just leave him immediately, because such doctors are useless. You need to find a doctor who understands this illness.
Thank you! Yes, my family thinks it’s in my head. Sometimes it’s tiring to convince them otherwise. I’m going to look at your link and try to get in with a doctor. I would love to try to have a better quality of life as I have so much more to do and learn! Especially now that I’m a mother of a very active one. Also considering getting my Ph.D. These things didn’t feel so out of reach before I got sick. Thank you for all of your tireless work and dedication to informing and helping others Hip. You are making a real difference.
Thanks, that’s nice of you to say.
I don’t know any ME/CFS patient that does not have lots of trouble trying to get their friends and family to understand. One thing I found helpful was buying my family members a popular health-type book on ME/CFS to read. I originally bought myself one or two self help-type books on ME/CFS, but found that when I passed them on to family members to look at, they began to see that this illness is real. Because a well written book is seen as an authoritative source, I think it is more convincing that anything you or I can say to our family members.
Have you ever used an HIV test from OraWELL USA?
Do you mind sharing the name of the book? Do you have CFS? I should know the answer to this, but my memory is awful.
Yes I have ME/CFS. At one stage it was quite severe (severe ME/CFS is when you tend to be bedbound for much of the day due to sheer fatigue). Now I am a bit better, and have moderate ME/CFS. With moderate ME/CFS, you are usually housebound a lot of the time, and cannot really work, but at least you are not in bed all day. I am aiming to improve myself even further, hopefully to get myself to the level of mild ME/CFS. In mild ME/CFS, you are usually able to do part time or full time work (although it’s a struggle). I have not worked since I caught this virus.
The first symptoms that my virus produced were severe anxiety, anhedonia, and some mild fatigue. But then slowly over a year or two the fatigue got worse, and brain fog (= memory problems, concentration problems, confusion, disorientation, word recall problems) started to creep in, so I realized after some time that I had developed ME/CFS.
The book I read myself and gave to family members to read is:
Chronic fatigue syndrome, Fibromyalgia and Other Invisible Illnesses — by Katrina Berne, PhD
This book contains a chapter on ME/CFS treatments, which is useful.
Thank you, again.
I’m sorry to hear this illness has impacted your life so greatly. I’m glad that you are gettinh better – that is hopeful.
Have you ever used an HIV test from Orawell usa??
Has anyone on this site ever used an HIV test kit from a company called Orawell USA???
Kissed a girl 3 months ago. Three days later; sore throat white fissured tongue no other symptoms at all after three months.
Could I have this virus? Nothing else explains a three month sore throat.
@John It’s possible, but most people get additional symptoms, even if it is just mildly increased fatigue.
Ok thank you. Sore throat really sucks and also fear of being infectious. But if that is all I get I am lucky. Just have to wait and see. Your website is the only one that explains a chronic sore throat at all. Others only speak of the sore throat being limited as I was used to in the past. Really surprised when this did not resolve. PCP talked about me seeing ENT but I think an ID is the way to go. Thx for shining a light on this. John
Yes, ID specialist is probably your best bet. Unfortunately the ARUP tests for coxsackievirus B, which I believe are the only ones that can reliably detect chronic CVB infection, are expensive. Arminlabs do a much cheaper coxsackievirus test, but I am not sure how sensitive it is.
Could someone email me their symptoms? I bought an HIV test kit from a company called Orawell USA and got some of the dilutent in my mouth and have had symptoms of this virus since then. The test came from China so I am concerned. Can anyone help or has anyone else used a kit from them? Thank you
Sounds a far fetched idea that you could have picked up an infection from a medical test kit.
Please help Me! I got really sick last December around Christmas. I’m a 26 year old male and i rarely ever got sick. I got a really bad sinus infection and flu type type sickness with fever. My sinus infection was so bad that i now have scar tissue in on side of my sinuses. Anyways I got over that and the sickness seemed to go away so i thought. Within a week after I started getting anhedonia and had a panic attack at work. My blood pressure and heart rate were actually low causing me to be dizzy which confused me because I felt like i was having a panic attack. From then to now I have been seeing so many doctor’s and getting so many test with no answers. I’ve never had mental health issues before but that is all anyone tells me is wrong with me. I know there is something wrong from what happened to me around Christmas and no-one will believe me. I have had almost all of the symptoms you have stated here and On top of that I have severe muscle twitching everday. I lost my job and my girlfriend is going to leave me. Please help me i dont know what to do anymore…
The muscle twitching sounds like the Chinese “HIV-like” virus , which has very similar symptoms to the virus described on this website. If that’s what you have, the good news is that many patients with the Chinese virus get much better after a year or two with the virus.
What are your symptoms?
Hip could you please email me at firstname.lastname@example.org
Does this virus cause joint cracking?
Not in anyone I know who caught it.
Kim, you might have a look at the Chinese “HIV-like” virus link Hip provided above, as joint cracking is one of its symptoms. There seem to be similarities between that virus and the one described on this website.
I still think it is odd that:
1) This virus (and the Chinese “HIV-like” one) seems to be easy to catch and spread.
2) The symptoms are at the very least bothersome enough that we’re talking to our doctors about it.
3) This virus remains almost unknown among the medical community.
If it is a new version of a coxsackie/enterovirus, hopefully effective treatment can be developed. But still, if so many of us have this, and all of us are talking to our doctors about it, why is there not more progress?
At this point, I’ve had the virus for over a year. The most prevalent continuing symptom is a chronic sore throat. (I’ve had many of the other symptoms, but it’s the continuous sore throat that is the most defining in my opinion.) My wife has precisely the same. She is pregnant and so I’m obviously concerned about the new baby. My kids do not seem to have gotten it, which I find strange. However, I’ve read here and on other websites that children seem to have some kind of ability to fight this better than adults do, or perhaps their symptoms are less obvious.
I’m sort of at an impasse at the moment with the virus myself, as I’m managing the symptoms alright — except my throat which looks terrible — and the whole fleet of doctors I’ve seen have thrown their hands in the air and have told me they have no clue what’s wrong.
I have had it about four months now. The only symptoms I have are a chronic sore throat treated initially with nystatin then Fluconozole which of course did zero good. I also have a white coated, fissured tongue. No other symptoms. Had a couple other chronic conditions during life that eventually resolved after a long time. I am hoping this does too. John
A Dr Richard Ellis is selling a treatment for this ailment. He even links to you page. Is he a hoax?
Do you really need to ask?! He also sells a treatment that brings good luck.
Apologies for asking this question, as Im sure it must have been covered before.
I cannot really stomach the taste of Flax Seed Oil – so was wondering if there are any recommendations for a good tasting oil?
Secondly until i find a good tasting flaxseed oil i plan to take this item https://www.naturesbest.co.uk/flax-seed-oil-1000mg-p559/
Can you let me know how many capsules i must take in one go to match what i would receive via the method of a tablespoon of oil?
Lastly can i ask if Flaxseed can be taken at the same time as being on strong anti psychotic medication, which does not seem to be working.
Thanking you in advance
Hi Nicholas. I answered most of your question on Phoenix Rising; you might also have a look at the list of supplements that I found had some mild anti-psychosis effects.
I should not think there would be any interactions between flaxseed oil and anti psychotic medication, but it is worth Google checking.
why don,t you use Facebook to tell more people about this virus? you can also use wechat. we are all suffering from the virus. from china guangdong province.
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I’ve noticed that my cfs symptoms have lessened since starting sertraline (zoloft) 2 weeks ago. I wonder if it has a,similar compound as fluoextine? I’m guessing it helps decrease inflammation.
Any news from Good Guy?
yesterday I saw the news that England has cured hiv. how wonderful! I hope we all can be cured soon. God bless.
Hi could you email me at email@example.com
Wish I’d found your site earlier. Have tried a lot of supplements over the last few months but will change to your suggested approach. Even if the things you suggest don’t work, your writing has given me great comfort.
You are an impressive person – let’s hope your CFS/ME gets much better
Hi Paul, are you suffering with the sort of symptoms detailed on this site?
Two comments on older threads here. I’m not sure where on board they were posted.
1st on the potassium intake and muscle cramps. Things like electrotabs which are electrolyte replacement supplements work best as they also other supplants which aid in absorption of the potassium.
2nd on virus treatments. Someone posted about borna possibility. I bit the bullet and ordered from an online pharm and found that borna treatment worked for my anexiety as well.
Yes Hip I have persistent throat trouble, sinus pain, lack of enthusiasm etc
The two most overall effective supplements I found for the symptoms produced by this virus are: N-acetyl-glucosamine (NAG) and high dose selenium, detailed in the treatments page. NAG you may find helps the sinus symptoms, as it works at the mucous membranes. If the back pain is muscular, like muscle cramps, it’s may be due to muscle inflammation, and ordinary anti-inflammatories such as ibuprofen can help (for me ibuprofen reduced the muscle pain by 50% within an hour or so).
I started on the NAG and selenium on Wednesday after reading your site :-) Sadly today I’m in bed with a runny nose that has turned into a horrible cough. Still, I’m feeling positive
Thanks for your kind replies
I was just wandering how you are doing this this started I guess in 2007. The last couple of years I have felt very fatigue and increasing over time. Included have been chronic throat infections and ear infections. I have ibs but I have had that for a long time. Aching joints in hands all the time – no swelling or redness and my feet bother me. I do not have a dx as of yet from treating md to specialist. The only thing they come up with was that I have a high inflammation reading which if I understand it means my body is trying to fight an infection but they don’t know what it is. Would be interested to know about your condition. Thank you. Julie
Hi Julie. If you have fatigue, check out the symptoms of chronic fatigue syndrome, to see if the virus may have triggered that. That’s what the virus triggered in me, and it is now a permanent condition.
Hello Hip just checking in. I contracted something almost 5 months ago. Symptoms white, fissured with teeth marks on side tongue and chronic sore throat and mouth just generally feels and tastes like crap. But no other symptoms at all.
The other site seems to think this is Lyme. What do you think of that? I simply have no real Lyme symptoms so for me I just don’t see it.
No tests for me but I have taken nystatin, Fluconozole, doxy and cipro all to no avali. I am hoping a little tincture of time will cure it but haven’t seen any improvement yet. John
With so little symptoms, it’s hard to say what you might have caught. If you have no other symptoms, what you have may be quite benign.
Thx hip yeah I don’t know whether to curse my luck at my chronic sore throat or be thankful it’s not worse. Hoping it will go away. Hoping everyone else is bette as well. John
Just wanted to put something out here. April last year I started getting random dizzy spells that lasted for a week at a time. After a month I started fainting, and it happened about 10 times during two months. In my case the skin wrinkling and itching and pharyngitis were first symptoms. For months I was so weak that I couldnt fall asleep. Then developed Sleep problems, slow wave sleep gone(which I attribute the fatigue to) After the medical system gave up on me. I started myself on high dozes of everything I could get my hands on. Vitamins, antibiotics, herbal.
Fast forward. I have a stent in my trachea because the virus weakened it, and I would choke.
I use a CPAP machine to ease the breathing at night. I got myself an EEG machine to check how much deep sleep I get.
I’m on Valtrex maintance doze, for the EBV. I saw drastic fatigue improvement with this.
others I’m on are Glutathione, GABA, Thyrosine, Magnesium L Threonate, and a Homeda C30 Serotonin 30 globuli a day, plus a 1000mg valtrex. Currently my biggest gain in the last months was after I started taking/making MAF 314 probiotic. I get unpasturised cow milk for this and pasturise it myself then add the probiotics.
Gut-Brain-Axis and the enteric nervous system are my main research topics now. Also Psychobiotics.
Hi Saviour, thanks for your post. Your dizzy spells could be due to Meniere’s disease, which can be triggered by viral infection.
Fainting might be due to orthostatic hypotension (loss of blood pressure on standing up), which again is a condition of the nervous system that viruses can trigger. Lots of patients with chronic fatigue syndrome (myalgic encephalomyelitis) develop either orthostatic hypotension (OH) or POTS (postural orthostatic tachycardia syndrome).
Both OH and POTS are likely caused by autoimmune attack on the nerves which control the heart and blood vessel dilatation (viral infection may be able to cause autoimmunity). OH and POTS can cause fatigue and brain fog, due to reduced blood flow to the brain. In both OH and POTS, the symptoms are usually worse when you stand up. Both OH and POTS can be easily diagnosed at home: see the OH and POTS section of this document for how to diagnose.
Sleep problems are very common in chronic fatigue syndrome. Do you have any of the symptoms of CFS, like fatigue, brain fog, and feeling worse after exercise (post-exertional malaise)?
Interesting about the Valtrex. How many months were you taking Valtrex before you saw the drastic improvements?
After about 3 months in with Valtrex.
Brain fog definetely, memory got worse too. Until it all started I went regularly to the gym. After I started fainting I didn’t just feel worse after excercise. I just fainted each time they put me on bike stress test, a few minutes after the test when i was already sitting. For about 2 months I felt like I’m gonna die, I felt that much worse from simply going on a walk. Now I don’t faint or feel worse after light excercise. I do sleep about 12h daily though, regular 8h and 3-4h around 3-4 pm.
As for the improvements.
The first big one was the CPAP and the Trachea stent. I could finally sleep and not choke.
About 3 months in with Valtrex I stopped feeling weak all the time.
Last improvement came from MAF 314, I dont know what actually works in here but the immune system comes mainly from the gut so I guess whether its GcMaf or just your regular probiotics, I am feeling better.
I take Glutathione and Ubiquinol in case of an overactive immune system.
By the way, I tested positive for EBV, RSV, and low Enterovirus, but they didnt specify which one.
I got a cold over 3 months ago, in the summer, starting with fever and stuffy nose. Then it went into my right ear and it got stuffed up. Then it cleared up a little but I started getting drippy throat, sore lymph nodes in the throat, and the ear would get stuffed up on and off constantly. The worst part is the drippy throat and sore throat and lymph nodes which comes on a lot in the evening. I’ve tried many herbal remedies but nothing seems to help a lot. I did a Z-pack antibiotic and it didn’t help at all. I wonder if this is related to the virus that you describe here.
Noticing that one of your main supplements is NAG. Have you ever read about Lectins and NAG?
I’m not saying that a virus isn’t your issue, but I wonder if some of the benefits you receive are also due to the effects of NAG on Lectins and the GI Tract? Just a thought…
Hi Ash. Yes, I have read about lectins and NAG. In order to get NAG to neutralize lectins in your food, you’d want to take NAG with food at meal times. But if you do this, I read some of the NAG will used used up in the process of neutralizing lectins in your gut, and so this NAG will not get adsorbed by the body, and will not enter your system.
Whereas if you want to get NAG to enter you system, then you take it on a empty stomach, away from food. I always take NAG on an empty stomach, and for this reason, I don’t think its benefits derive from neutralizing lectins.
I actually tried a low lectin diet once, but in my case it did not seem to help.
Hi folks, just a thought.
I’ve had ‘a’ virus for now I feel coming on for 9 years.
I’ve gone back and forth with thinking it was the chronic sore throat virus and this ‘hiv-like’ one from China.
I don’t have a chronic sore throat but had a sore throat at the start. I do have bones that crack (have done so for the last 4/5 years) but I don’t have peeling skin like some others do that have the ‘hiv-like’ one.
Could both viruses be the same? Sore throat(ish) to begin with and then gradually skin conditions and muscles/bones later on?
There are people at my work that now have throat conditions – one chap who feels like he’s had a sore throat for nearly a year. Another person, beginning to get pins and needles in her arms. Another person, the same and with muscle twitches.
Could they be one in the same but depending on our immune system at the time and how it was caught, will depend on the speed and severity of this virus?
If it’s caught through kissing (saliva) then that would mean , sneezing, colds, oral sex etc are all ways of contracting this – as is sharing cups, cutlery…
I k ow Lyme and bartonella have been mentioned – is this also a probability?
All the other forums I’ve read about Lyme show people with similar symptoms to ours but doctors, albeit reluctantly are labelling them as Lyme. Are we any different?
Yes they could be the same virus with people having different symptoms and even others have none at all.
Also people on the blog too may have different diseases some even think they have Lyme and may be they do. I don’t but they may. John
For teeth plaque and tartar brush twice a day with a Phillips sonicare tooth brush. Don’t use tooth paste and do it after u regularly brush with a brush and tooth paste. This will help a lot.
Hello, I believe I have this virus and would like to try these supplement treatments. All I’m curious about is do you describe these treatments as alternative options, or to be taken all at once ?
They can be taken at the same time. For each symptom, there are a number of supplements and a few drugs listed. But each only reduces the symptom by a small degree. So you get a better result if you take several supplements together, to increase the effect.
Much appreciated hip. Also are there any specifics about freddds b12 regiment I should know ? Or is it just a certain dosage per day?
Plenty of specifics, in fact they spend endless hours talking about it on the PR forum. I’d look at the methylation protocol of Rich Van Konynenburg, Freddd’s protocol similar.
One million thank yous for spending so much of your time informing others of this debilitating condition. If you could point me in the direction of freddd’s advice I’d greatly appreciate it. I’ve only read other’s comments referencing it on this page.
@Chris: You’ll find details scattered all over the Phoenix Rising forum, but you can search the forum.
Rich Van Konynenburg’s methylation protocol’s is here, Freddd’s protocol, which is pretty similar, is here (there may be a later version of his protocol, you’d have to search the forum).
I have been dealing with this for nearly ten years. The time line of progressing symptoms is shockingly accurate. Yet, dozens and dozens of GP and specialist down play my symptoms as depression. They all say my blood tests don’t show ant cause for my complaints. I would be so grateful if anyone could update our inform me of any diagnostic tests or treatments out there.
The coxsackievirus B test from ARUP Labs is detailed on the FAQ page.
Could you email me at firstname.lastname@example.org?
Has anyone experienced dry flaky skin on the face that doesn’t go away , a red rash that comes and goes on the face or sores all over the top of the head ? I’ve posted here a few times and have been looking for other cause’s than this virus that could be cured but I always find myself back here. I have every symptom outline by Hip in the beginning plus the dry flacky skin and rash . my wife has the sores that come and go on top of her head.
The dry flaky skin is a symptom found in the Chinese “HIV-like” virus, but usually on the legs.
Yes i too have the sores on head and dry skin
Hip, Thanks for the information. I looked that up and found some information about a several study’s done , one of which said about 40% of the people had a nontuberculosis infection . my wife had a sputum culture done and three weeks ago the doctor told her she had a non tuberculosis bacteria but they had to grow it longer in the lab to know which one it was and we have not heard back from them . The symptoms of the Chinese HIV like virus is spot on even my symptoms have gotten better than they were after a couple years. Which brings me to NTM DISEASE which is a nontuberculosis bacteria found in the soil . when I first got sick , I thought it was mold that could’ve come from the soil . In your opinion , do you think that nontuberculosis bacteria , could be the cause of this disease ?
Thank you for your time and effort in keeping this information going .
I don’t think non-tuberculous mycobacteria (aka: environmental mycobacteria) can be the cause of the Chinese “HIV-like” disease, because Chinese patients on this website told me that the incubation period of the Chinese pathogen is around 2 days, whereas the incubation period of non-tuberculous mycobacteria is around 1 to 2 weeks. People in China typically pick up the virus from kissing on a date (or a visit to a prostitute in some cases), and then the first symptoms appear within 2 days.
However, the Chinese “HIV-like” virus seems to weaken immunity and give rise to lots of co-infections, so that might explain why you get these non-tuberculous mycobacteria co-infections.
Thanks Hip. That make sense , because the information on non tuberculosis say’s that it doesn’t usually bother people unless they have a weakened immune system . why doesn’t our scientists figure this out ? I may be naïve , but I thought we have some the the brightest people on earth !
I am not sure if I have this virus but I do have almost every symptom, diagnosed with dysautonomia, mid dermal elastylosis, gastropheresis, gastritis, neuropathy, thrush with a culture showing significant amounts of Candida albicans but NO YEAST seen( Candida is a yeast) and every organ having a disease, disorder or syndrome. I am rapidly worsening and very scared. I am being neglected appropriate care due to my complexity and how much money it will cost to diagnose the underlining condition that is making me extremely sick and ruining my life.
Due you have fatigue and brain fog? If so, you might want to look to see if you match a diagnosis of chronic fatigue syndrome. Dysautonomia and sometimes gastroparesis are found in ME/CFS.
Hello Hip, I am desperate for help as I am having Anxiety/GAD issues, sympathetic system overdrive and constant fatigue issues for the last 10 years. I also have SIBO, H Pylori and a leaky gut. You seem to be an expert in Anxiety/GAD issues and I was wondering if I can contact you for more help.
Sure, go ahead.
Thanks Hip, Is there an email id that I can send you information about my problems?
It’s better to post your details on this forum, unless there is a special reason for not doing so. This is because the info can help others reading these comments.
Hip, i would prefer to send you my queries over an email initially please.
I have come across your site since I had a sore throat and mucus for 3 months and the doctor kept telling me it was stress as was my hot/cold feet and tingling arm. I have been stressed before and knew this was not my normal stress symptoms, although I was stressed at the time when the sore throat started. I was tested for glandular fever and the test came back positive for a current ebv. I am now having a burning sensation on my face and have mild depression and mild anhedonia, I have also lost 5kg in a week since I have zero appetite. I contracted hsv2 20 years ago and also recently, within the last 4 months, had a whooping cough vaccination. I know all of these symptoms sound like stress but do you think the positive test and tingling/burning and other symptoms could be from this virus, I am only 4 months in and this scares me as I have a child to care for, how do you get through each day?
You symptoms could be from this virus, but if so, most people with this virus carry on fairly normal lives, and only have minor symptoms. So with luck that will be your case. You can try the high dose selenium detailed in the treatments page (400 mcg of selenomethionine daily on an empty stomach), as this I find helps. Selenium is antiviral.
Thank you I shall try and find this product.
Hip , I’ve got a question for you , if you don’t mind . I told you a few day’s ago about my wife testing positive for non TB lung disease and you told me that the Chinese HIV like virus ” seem to weaken the immunity and gives rise to a lot of co-infections”. My wife went and got a print out of her sputum culture and it showed the non TB and it also showed rare candida albicans and penicillin species #2 . Do you also think this is co-infections because of weaken immune system or could these cause about all symptoms of the Chinese HIV like virus ?
It could be both: co-infections may arise to slightly weakened immunity, and then further contribute to symptoms. This seems to occur in ME/CFS too.
did you ever try eliminate milk product (cheese, yogurt , milk vs.) for a week ?
I felt better . I am also on gluten free diet . I think like that, if it is not dangerous worth to try it.
HI hidir, yes I tried that, it helped reduce anxiety.
I visited your site about 4 years ago when I got a sore throat with some of the issues that you noted. Most notable differences were my extreme anxiety was more OCD with intrusive thoughts and obsessive thinking. Also I had no lasting congestion and sore throat. Weight loss and loss of appetite. This lasted for a few months then cleared. Now 4 years later it has returned but worse. I did some research and it sounded like PANDAS as this has happened to me a few times since childhood, each with symptoms that are progressively worse. Any thoughts or suggestions, or possibility it is the same virus?
Also each time I have gotten it was during high stress in a moldy environment.
Mold can definitely cause severe symptoms: some people develop full ME/CFS just from a major mold exposure. If you look up the work of Dr Joseph Brewer, he thinks that a mold infection in the sinuses may be causing or worsening ME/CFS symptoms.
HI there, I havn’t posted for ages, just been monitoring the site from time to time.Me and my family have had a lot of these symptoms that have all magnified in some form or other over the past 3 years after I had an encounter at massage parlour…. Its just that the one symptom that was scary was that my son, now 18 yrs old developed Tachycardia a short while after this incident, after the months of flue like symptoms which we all had amongst a lot of other ones mentioned in this blog….and we are generally a very healthy, fit sporty family. This started out of the blue with no real reason. The big scare came last weak when the cardiologist recommended a cardio ablation to sort out the Tachycardia, which is a fairly simple procedure. Op started and 3 hours later surgeon came out with a very serious face saying they could not do too much and the op was not a success as my son has too much scar tissue in the one heart ventrical which had to have been caused by a virus. This is very strange as my son has never suffered from any major virus or illness apart from this strange ailment that we are all discussing on this blog…..!!! has anyone else had anything similar…. definitely has some effect on the immune system…..
Thanks for your post. If you look at the FAQ page of this website, you’ll see that my viral blood tests for coxsackievirus B infection showed I have an ongoing active infection with coxsackievirus B4, which is one of 6 Coxsackie viruses (CVB1 to CVB6).
Coxsackievirus B can cause low level smoldering infections of the heart muscle (chronic myocarditis). I have seen studies showing how selenium deficiency and vitamin E deficiency definitely makes these heart infections worse. See these studies:
So possibly selenium and vitamin E supplementation may be a good idea for your son — but of course please consult with your doctor first (you can print out and show him the above studies).
I personally found highish doses (400 mcg daily) of yeast-free selenomethionine (one of the most absorbable forms of selenium) on an empty stomach greatly reduced my viral symptoms (reduced the fatigue, brain fog). See this thread:
High Dose Selenium Significantly Improves My Fatigue and Brain Fog
Wondering if you have any treatment solutions for the crepey skin on hands and cheeks and the red skin in the V shape on my chest. Thank you for this website!!
A very concentrated solution of Epsom salts applied daily to the red V area I found quickly reduced the redness within a week.
I have not found anything for the crepey skin, but I have not really looked into this much. It is possible that good doses of the triphala herbal formula taken for several months might work, as this herb inhibits MMP-9, which I think may be the cause of the crepey skin. But I have not really tried this myself.
Thank you for all this info – the virus has gotten my family too. My dad (72) has polymyalgia and has lost his taste and smell. He also has the chronic sinuses. My sister is on interferon because she already had an autoimmune disease and both of my brothers have anxiety problems, crohns and more. It all makes sense now. I am tired all the time and have the gum disease along with ALL of the other symptoms you have listed. I can’t believe a virus can do all this to our bodies. I think that I have spread it to my husband. Hopefully his immune system attacks it better than my family’s. He is very stressed at work right now, so I fear the worst :(
The stress your husband is experiencing might be due increased anxiety levels. The virus seems to ramp up internal anxiety in some people. A good treatment for this is N-acetyl-glucosamine (see the treatments page).
just ordered the jarrow brand and the selenium with vitamin E for him / us thanks again for your help
Let us know if it helps. The anti-anxiety effects of NAG kick in within a few hours; whereas I find the benefits of selenium take around 10 days to begin to appear.
Had this six months now
Throat sore looks just like your picture
White, fissured, swollen tongue.
And just a month ago developed a mild
And mildy productive cough.
I have no other symptoms at all thank god
Just keep hoping it will go away. Pcp
Treated for thrush no help. Had some ABTs too no help.
Is a cough part of this thing? John
Bone broth seems to help with the wrinkled skin but it takes time. It’s cheap and found in most grocery stores. Just be careful cause I had a big herx reaction after 3 days but fine afterwards.
I am big germophobe now. Wash hands a lot and will never do anything not supposed to. The thought of it makes me sick!
HI there and thank you for this article. I have virtually every symptom on the list and have been diagnosed with everything from adrenal fatigue to a nervous breakdown to chronic GAD to even ME. I had all 6 strains of the Coxsackie B at 640 levels and they go down sometimes, but then come back up with a vengeance. I need to get this virus gone for good if I will ever be able to work again (anxiety levels are debilitating and anti depressants aren’t working as well).
I am seeing an infectious disease specialist soon – Im hoping to find solutions there but my naturopath swears by BUT, Lysine, high doses of liposomic Vitamin C and a viral homeopathic mix contain Astragalus and Olive Leaf all for 50 days to put the virus into a dormant stage. I did it for 40 days before I was admitted to a psych ward for chronic depression.
I don’t think I can take all these now that I am on mood stabilisers and anti depressants.
Has anyone found something or some solution that can eradicate this completely? Im aware that it lives in our cells so its difficult but surely there is an immunity med that can whack it harder?
Any advice would be great?
Thanks again for this article – I feel like I am closer to answers now by finding it.
ps – I was a national roller skating athlete before I got this – now I’m lucky if I can do a yoga session
I always feel terrible after a few days taking high doses of lysine, and astragalus causes me to become depressed. Astragalus induces the release of interferon, which is good because this fights viruses, but interferon can often make people depressed.
For your anxiety, N-acetyl-glucosamine and some of the other anti-anxiety supplements detailed on the treatments page may be your answer.
For your coxsackievirus B infections, have a look at the oxymatrine treatment which Dr Chia uses. Oxymatrine is more or less the only thing on offer for treating chronic coxsackievirus B. If you try this, though, be on the lookout for increased depression, and be prepared to stop the treatment if you get significant depression.
I also found high dose selenium helped fight the symptoms (see treatments page).
If you are struggling with fatigue, and have problems with exercise, then you could well have chronic fatigue syndrome / myalgic encephalomyelitis. ME/CFS is linked to coxsackievirus B.
Wow that was fast and efficient – awesome! Thank you so much for the answers – unfortunately I can’t mix the amino acids or natural stuff with what I’m on (my psychiatrist was quite insistent) which sucks because they’ve always been my first line of treatment for everything. I will definitely look into the oxymatrine though and see if they have it here in South Africa.
I didn’t find Astragalus made me depressed but then again, any anxiety always ends to depression for me so I just don’t know anymore.
Thanks again for helping with this – I am determined to get this virus dormant for good. Ive had success in the past with just my own immunity but the stress of this year has nailed me and Im at that point where I’m doing everything right (gluten free, bone broth, green juices, not working, only light exercise, yoga, meditation, positive affirmations, good supplements etc). and I still have this stupid virus lurking around, just waiting to pounce on me the minute I start feeling almost normal again.
All the best
@Caroline, may I ask which lab did your coxsackievirus B testing?
I do them at the Lancet labs here in South Africa. Just got my results back this time though and Im flaring up with B2 and B5 – Titres are 640 and 320 respectively.
one more thing please….I can’t seem to find any info on the internet. Ive been put on psych meds for what they consider a sever anxiety disorder with co-morbid depression. Im on week 9 with no real results yet (could be the wrong meds) but I was wondering if you think its possible for them to actually work given the way the brain is reacting to the virus which Im now proven to have (high strain B2 and mid strain B5)
This isnt the first time Ive had coxsackie b but when it re-surfaced 5 months ago so did this crazy anxiety and depression (housebound) and since then Ive had a complete turnaround of my life – with a lot of the symptoms you list in your article. My psych doc would probably argue the connection and say the coxsackie wouldn’t be the main reason. My coxsackie went into almost remission about two months ago and the anxiety was still there though…..now its back and the anxiety is so high…any advice on this?
I started suffering from anxiety (generalized anxiety disorder) very soon after catching the virus described on this website, and a few other friends and family who caught the same virus were also suddenly hit with anxiety.
My anxiety became so severe, that I started to develop what is called anxiety psychosis — it’s where you get some psychosis symptoms (meaning you start having trouble interpreting reality) as a result of the severe anxiety.
I reacted very badly to SSRI drugs, which are the usual treatment for anxiety, so that was not an option. After suffering for some years with this severe anxiety, I eventually figured out by trial and error of various drugs and supplements that the anxiety was likely caused by chronic brain inflammation.
Once I started taking supplements that reduce brain inflammation, there was a huge improvement in my anxiety. See my thread here:
Completely eliminated my severe anxiety symptoms with three supplements!
So you may want to try some of these same supplements that calm brain inflammation, and see if they help your anxiety. N-acetyl-glucosamine (NAG) is the star supplement in the list. That works the best, I found. These supplements are also very safe (although NAG should not be used if you have Lyme disease).
If you Google: depression brain-inflammation | neuroinflammation, you will see how brain inflammation is increasingly being linked to causing mental symptoms such as depression. I think brain inflammation may be linked to anxiety as well. I think a viral infection may cause brain inflammation, which in turn may cause anxiety.
But to answer you question: the anti-anxiety meds you are taking now do stand a chance of working, although if it has been 9 weeks and they have not yet had any effect, they may be the wrong meds for you. In terms of SSRI drugs, I have read that the best one of these for anxiety is Lexapro (escitalopram).
In terms of the link between viruses and anxiety, if you look at the medical literature, the only viruses that are medically known to cause anxiety are: cytomegalovirus, and to a lesser extent, Epstein-Barr virus.
There is no indication in the medical literature that enteroviruses such as coxsackievirus B can trigger anxiety. This may of course be because the medical literature is incomplete in this area.
So based on current medical knowledge, your psych doc would be right in arguing that coxsackievirus B is probably not the cause of your anxiety. And medical professionals are generally guided by current medical knowledge. However, as mentioned, it is possible that medical knowledge is incomplete in this area.
The other possibility is that due to immune suppression effects of coxsackievirus B, the weakened immunity may allow other viruses in your body to reactivate.
This may have happened with me, as in my case, my viral blood tests showed not only an active chronic coxsackievirus B4 infection, but also that cytomegalovirus and herpes simplex I virus had reactivated in my body. If there is any weakening of immunity, old past infections can reactivate, and I think this is what happened with me: I think the coxsackievirus B4 infection may have caused weakened immunity, leading to reactivation of cytomegalovirus and HSV-1. So it is possible in my case that some or all of my anxiety symptoms were due to the reactivated cytomegalovirus.
For your coxsackievirus B tests at Lancet Labs in South Africa, do you know what method of viral testing this was? It usually says on your test results printout.
The methods of viral testing include:
Neutralization test (plaque reduction neutralization test)
ELISA (enzyme-linked immunosorbent assay), also called EIA
IFT (immunofluorescence test, or immunofluorescence assay), also called IFA, IF
CFT (complement fixation test)
It should specify one on the above methods on your coxsackievirus B test results page.
The neutralization test for coxsackievirus B is the most sensitive and the best test; the complement fixation test (CFT) is the least sensitive, and for that reason is the worst test.
The reason I ask is because it is very hard to find a good lab which provides a sensitive test for coxsackievirus B, such as the neutralization test. People often ask me where they can be tested for coxsackievirus B and echovirus, and there are very few options in the world. So if Lancet Labs offers sensitive coxsackievirus B testing, and if they accept blood samples from abroad, that might be a very useful resource for others on this website.
Hello could you email me at email@example.com
I posted on here a bit last year.
It is interesting how this virus has very similar symptoms to Lyme to mercury poisoning.
Have you had amalgam fillings?
I have been doing the cutler protocol for a few months and a couple of symptoms are gone. I am regaining the ability to understand what people are telling me. However still have the dreaded anhedonia. Would love to get my ability to cry and feel back one day. Also many people report on the cutler protocol of getting their blood pressure back up over time (noticed comments here of those suffering hypotension) which is a biggie with the flow on effects.
hey there – it doesn’t specify which test it is or how it was done (apart from bloody virology) – can I post an attachment somewhere and you can see it?
I’ll email you, and perhaps you could kindly send your test coxsackievirus B test results to me. Thanks Caroline.
sure thing – email me on XXXXXX. i find their test results very good. We do have another lab (Ampath) which I have had two terrible errors from so I only use Lancet now.
Thanks Caroline (I deleted your email above, just to help prevent you receiving spam emails, which can happen if you post your email online).
Hi Caroline, good to see someone else from SA, thought I was unique…. I have still not got the Coxsackie Test done, maybe its a good idea just to get some confirmation
yes you should do all the enterovirus antibody tests – its a small vial of blood – takes two seconds
Caroline did you specify which type of tests they should do, doubt my GP will even want to do them, according to him there is nothing wrong… :-), only saw him about 8 months ago, been trying to just carry on and try ignore symptoms but its getting a bit much now…
Its actually called coxsackie AB and theres one called Epstein Barr (if you have swollen glands you may wanna check it out) but it sounds like you need a new GP – what area are you in?
your doctor has no say in what tests you do if you want test – its your right to tell him so.
Cool, it sounds like I just need the coxsackie AB test, no gland issue at the moment, did have a few years back…… hopefully this might shed light on my sons heart issues…… I am in Johannesburg…
try go see Dr Robin Kohler at Perfect Health in Bryanston – he’ll change your life
Will do, I work in Bryanston so its convenient, did he do all your tests….?
yes but he diagnoses through various methods – iridology, manual check up and then blood analysis. He then will send you to a lab to do certain tests depending on his findings. He will be able to tell from your blood analysis whether you have viral or bacterial antibodies present and then will send you for tests to determine which one it is and the course of action to treat it.
He’s also very patient and very good at his job and has been a lifesaver for myself for about 5 years.
I’ve been living with all these symptoms for 3 0r more years. Had many tests that show nothing. How do I get a dr to
Listen. They (3) just throw up their hands and I keep on suffering.
If you have the symptoms of chronic fatigue syndrome, then a good CFS doctor will listen to you.
I’ve been taking the high strength selenium and N-A-G for 60 days now but sadly no change yet on the virus symptoms. How long do you think I should keep trying? I realise it’s a complex situation and I’ve had the symptoms for a few years
It’s so good you have this site to encourage us :-)
The selenium I found only works for the fatigue and brain fog symptoms (which are part of the ME/CFS that the virus triggered in me). NAG I found works for the anxiety symptoms, and also helps reduce nasal congestion a bit. I did not notice any other benefits from these supplements, but it’s possible that other people might get additional benefits from them.
does anyone have rheumatism symptoms caused by this virus?
In May it will be 10 years since I had this virus. It has changed my life and became quite expensive. This past August, I had my thyroid removed due to stage 2 thyroid cancer. I also have rheumatoid arthritis in my neck and upper back. And I still have nasal congestion daily although not as bad as in the first years. I wish this virus on no one. God bless, Rick
Rid your tongue of white:
Gently scrub on tongue baking soda then take a few caps of hydrogen peroxide into your mouth swish around and let rest on tongue. Then spit out most of the peroxide letting it pool on your tongue. Keep mouth open a minute or two and let peroxide bubble. Then gently use brush or tongue scrapper and take of foam. Wha-La pick tongue again! I wish it cured this virus but it doesn’t having a pick tongue even for a few hours is 👍
Anyone else find the major benefits of the Antiviral Symetreyll?
Can Harvoni which is a hepatitis C medicine be able to disable these Non-Cytolytic Enteroviruses from reproducing their-selves inside human cells and hence make all humanity free from this horrendous infectious disease?
A study was conducted to see whether sofosbuvir (found in Harvoni) has any antiviral effects against coxsackievirus B infection, and unfortunately it does not. See here.
hello Hip again,
Does sofosbuvir is ineffective against coxsackievirus B or it is because it can’t penetrate the brain-blood barier?
Hi there, had the blood tests done for Coxsackie tests done and came back positive B2 B4 B5, explains everything, this Virus causes strange symptoms, yes most if not all which are described in this blog and its different from person to person. Need to get family checked, they have same symptoms even worse…..its a difficult one to handle as there is no real cure……. very stressed out, waiting to get a treatment plan from doctor….
Hi there, had the blood tests done for Coxsackie tests done and came back positive B2 B4 B5, seems to explain everything, this Virus causes strange symptoms, yes most if not all which are described in this blog and its different from person to person. Need to get family checked, they have same symptoms ….its a difficult one to handle as there is no real cure……. very stressed out, waiting to get a treatment plan from doctor….
Do you know the titers of your three Coxsackie B viruses? Dr Chia says that in the ARUP tests, a titer of 1:320 or higher suggests an active infection. If it is less than that, the infection is considered a dormant one.
apologies for double post… :-)
Hi Hip, Thankyou so much for this incredibly detailed and informative website and cfs roadmap , your knowledge, understanding and research is far superior than any medical doctor I’ve been to or research I’ve come across in my own search for a diagnosis.
I have this exact illness, I have had a poor immune system and chronic fatigue in the last few years but after taking 7 week course of antibiotics that was supposed to fix a dysbiotic gut it did the opposite and wiped out any remaining immune system I had resulting in me coming down with this exact illness as well as cold sores and subsequent candidiasis.
Since then I have been severely ill and housebound with this illness as well as with opportunistic infections like candida. I’m wanting to know firstly does ARUP labs accept shipping from overseas for the plaque neutralisation tests and will the shipping time and storage affect the blood sample as it states it should be refrigerated when transported but I will be sending it from Australia so it’s incredibly costly to send it refrigerated( I have emailed ARUP and they are yet to get back to me but would like to know if anyone else has sent it from overseas and how they did it)? Has there been any progress in finding other labs that do this specific sensitive test?
Dr Chia’ s Equilibriant has Selenium as high selenium yeast while you recommend yeast free selenomethionine. I’m wanting to trial equilibriant with the other supplements in it but am worried it may exacerbate my candida issues, do you know of any cases where this has occurred, do you think the yeast form could be a problem for ppl with candida issues?
I also wanted to know your opinion about exacerbation of symptoms as I had the initial infection of very sore throat, headache etc that then went into gastroenteritis and gut irritation lasting in total of 8 weeks with mild continuation of these symptoms ( and progressive symptoms of others eg brain fog, mood disorders) following, since then every 4 months I have severe exacerbation of the sore throat, headache, and gastroenteritis that lasts 8 weeks (same severity as the initial infection) with progressive worsening in all symptoms severity after each bout, so now I have severe sore throat, headache, and GI upset, (gingival recession, brain fog, mood disorders etc) while before each bout these symptoms were milder?
I am worried that with each exacerbation of the virus my symptoms are only going to get progressively worse, do you think this is due to the virus replicating and infecting more tissue only spreading the virus to infect more cells?
You spoke of Dr John Chia and some new hepatitis C drugs under development may be able to kill the non-cytolytic enteroviral dsRNA what is this drug called and what is the status of the research, has it been shown to do so yet, is there any research papers out on this that you can direct me to?
Thankyou so much for generously offering your knowledge,
Hannah, have you tried some good probiotics and prebiotics (prebiotics = food for the probiotic bacteria) to repopulate your gut with friendly bacteria? Friendly bacteria help control the Th1 / Th2 balance of the immune system, and swing the balance towards the desired Th1. Th1 is the antiviral response.
You can also consider the yeast probiotic Saccharomyces boulardii, which I have found beneficial. It boosts sIgA in the gut, which then helps fight gut infections.
ARUP told me they do accept blood samples from abroad. I actually used a European lab to get my coxsackievirus B tests done. The lab was much cheaper than ARUP, yet provided the same plaque reduction neutralization test that ARUP provide. Unfortunately this European lab no longer provide such a neutralization test.
The yeast in selenium supplements (which is just baker’s yeast, Saccharomyces cerevisiae) has a beneficial stimulatory effect on the immune system; however, I found these yeast-based selenium supplements cause strong depression symptoms, and other people have similar problems with this yeast. But if you don’t get these side effects, then there should be no problem.
There are other forms of oxymatrine available, such as the Alternative Medicine Solutions oxymatrine, which only contains pure oxymatrine.
Have you looked at my high dose selenium protocol, which I found effective in reducing the ME/CFS brain fog and fatigue triggered by the virus? Selenium has antiviral properties. See here.
ARUP Lab replied stating that they cannot accept international samples for Coxsackie B Virus, Echovirus Antibodies, or any other testing performed in their Virology lab, thus I am searching for a lab that does the test in Australia, if one even exists?
When I wrote to ARUP a few years ago, they told me they do accept blood samples from abroad. Perhaps they have changed their policy.
I don’t know anywhere else in the world that does the sensitive neutralization test that ARUP provide. The neutralization test is the most sensitive.
The next best choice I believe would be a coxsackievirus B / echovirus IFT test, also called IFA, or IF (immunofluorescence test, or immunofluorescence assay).
I understand it is ineffective against coxsackievirus B.
Sorry for misunderstanding between us. I didn’t mean that you don’t know this. I myself didn’t know and because of that I questioned you about this.
what about amiloride, you have mentioned that it strongly inhibit coxsackievirus B3 replication. So why you didn’t find positive results with? was it because of the brain-blood barrier or because of something else? I some while ago find a research paper that was stating that they have found a way for crossing this brain-blood barrier. So can their way plus amiloride be a feasible solution for eradicating this infection?
please don’t get upset of me.
I am not uspet with you Reza, just answering your questions. I did not read the study on sofosbuvir, but my understanding from the forum thread that I linked to is that the study found sofosbuvir does not work for coxsackievirus B.
Amiloride inhibits coxsackievirus B3, but I have coxsackievirus B4 as an active infection. So I need antivirals which target CVB4.
If you look at my list of antivirals for coxsackievirus B and echovirus , you see that there are very few compounds that are potent antivirals for CVB4.
The supplement dihydroquercetin (DHQ) is a potent antiviral for coxsackievirus B4, but I find when I take even small doses of DHQ, it makes me very aggressive and over-stimulated. So I had to stop using it.
But in my list of antivirals, there are many potent antivirals for CVB3, so if CVB3 is your problem, then you are in luck, because some of these antivirals may help.
My problem is infection with CVB4. But my real concern is this brain-blood barrier. Before choosing any of the antivirals available, we should know if they can cross this barrier or not. only if an antiviral is able to cross this barrier then it can be considered for use against this infection.
my real question now is that I have known of a way to pass this barrier which I read it in a research paper. So that approach with The supplement dihydroquercetin (DHQ) maybe a promising solution. what is opinion about this approach that can penetrate brain-blood barrier? don’t you think that this problem should be addressed first?
Which laboratory tested you for coxsackievirus B? Do you know your titers for coxsackievirus B4? Dr Chia says that titers of 1:320 or higher in the ARUP lab tests indicate an active infection.
Dr John Chia has used the enterovirus antiviral ribavirin to treat ME/CFS linked to CVB3 and CVB5, and this antiviral works quite well, yet ribavirin does not cross the blood brain barrier.
Dr Chia has also used interferon alpha to treat ME/CFS linked to CVB3 and CVB5, and this works very well, yet interferon alpha does not cross the blood brain barrier.
So whether an antiviral crosses the blood-brain barrier may not be important.
One theory I have is that coxsackievirus B infection causes an autoimmune attack on the body, and it is the autoimmune attack, not the virus itself, which causes many of the symptoms. Some people with ME/CFS are getting cured using rituximab, a drug that eliminates autoimmunity.
Dihydroquercetin (DHQ) may be a good supplement for you to try. The problem with DHQ is its very low bioavailability, which is just 0.49%. So most of the DHQ you take orally will not be absorbed into the body. See here.
The solution may be to dissolve the DHQ in ethanol, as it is much more soluble in ethanol compared to water. DHQ can also be dissolved in coconut oil — this is the method I used to take DHQ. I dissolved the DHQ in warm coconut oil before swallowing it.
I didn’t do any kind of test. It’s to saddening because I got admitted for Arizona state university and a bunch of other high quality universities in America and Canada which if I went to I could find the chance to get tested in ARUP lab, but because of the severity of this disease I concluded that I can’t be able to finish my education there considering the high intellectual abilities it demand to be a PhD student in computer science.
I got infected with this disease when I was a M.Sc. student in Sharif university of technology in Iran. One of the notable alumni of this university is Maryam Mirzakhani. Of course I am not as good as her but I mentioned it for you to know how much strong this university is.
I was one the best students in my university before getting infected by this mysterious disease now I am unable to even clearly talk and communicate what I mean and even by consuming a bunch of antidepressants of SSRI and SNRI type my symptoms aren’t managed perfectly and I am still unable to talk like a normal person.
I also have problems in reading, writing, short term memory, long term memory, recalling abstract concepts and solving mathematical problems as fluently as I could previously and also doing computer programming. worst of all I barely can keep my job and I am always in danger of getting fire. I am currently working in a governmental institution and I am completely sure that if I was working in a private company I was fired hundreds of time by now.
OK, so in your case, you do not yet know which infection might be causing your symptoms. Note that chronic fatigue syndrome, a disease which involves fatigue and brain fog (= memory problems and thinking problems), is linked to a number of different infections, including enteroviruses (such as coxsackievirus B and echovirus), as well as herpes family viruses (such as Epstein-Barr virus and cytomegalovirus). Chronic fatigue syndrome can also be caused by Borrelia infection (Lyme disease).
If you look at this page, it lists all the microbial infections that are associated with chronic fatigue syndrome.
I used to work in computer software, but due to my brain fog, I cannot work, because I cannot think clearly.
You might like to try the drug / supplement called piracetam (800 to 1200 mg daily), as I find piracetam greatly helps with the brain fog.
Can you spell out the Testing requirements (Test Name, Type, Testing range and conditions tested) that one can ask clinics in the UK to see if they offer them, in order for one to be assessed to know whether or not they have the virus
The test is a plaque reduction neutralization test, sometimes just called a neutralization test. The viruses you want to test for are coxsackievirus B and echovirus. If you can find this test anywhere in the world (other than ARUP and Cambridge Biomedical), please let me know, because neutralization tests are very hard to find.
However, if you have ME/CFS symptoms, these are also linked to other pathogens. The details of these other pathogens and how to test for them are given in this roadmap document.
Hip, Thanks for the reply, is it simply a case of emailing clinics up and down the UK asking if they offer
“A Plaque Reduction Neutralization test, testing for are Coxsackievirus B and Echovirus”.
Would that be all that is to be asked of them to perform?
You can try, but I was unable to find any plaque reduction neutralization test in the UK. You might find the test available in research environments perhaps, but a commercially available test is another matter.
You don’t need the plaque reduction neutralization test for the other viruses, like herpes family viruses. Any antibody test is fine for those. It’s only coxsackievirus B / echovirus which are very hard to detect in chronic infections, so require this sensitive neutralization test. Read the FAQ page for more info.
I’m convinced that we are missing something.
An important piece of the puzzle is missing.
Something wich is common in all these chronic diseases. The thing that in its presence any acute infection of any kind (ebv, cmv, cvb, borrellia…) will turn into chronic one in such way that all the sufferers will find high titers for different infections.
I think all the ongoing infections found in the blood of all these sick people are more results than causes.
I think this thing is infectious and is messing with the immune system and probably with hormones and what make the infected people evolve to one syndrome or the other (cfs, fibromyalgia, Lyme, reactive arthritis, Chinese hiv-like, crohn, GWS, australien Lyme-like…) are the present co-infections and genetics.
Hi Hip, my titres for Coxsackie are
COXSACKIE VIRUS B1 < 10
COXSACKIE VIRUS B2 640
COXSACKIE VIRUS B3 320
COXSACKIE VIRUS B4 640
COXSACKIE VIRUS B5 640
COXSACKIE VIRUS B6 160
COXSACKIE VIRUS A < 10
Shows Active Virus……
Tested at Lancet Lab in South Africa….
Thanks for posting those, ItchyBurn69.
The Lancet Lab tests looks like it might be a plaque reduction neutralization test. I emailed Lancet Lab in South Africa, asking if they can accept blood samples from abroad, but got no reply from them as yet. If Lancet Lab can accept blood samples from abroad, and if their test is a plaque reduction neutralization test, then their Lab would be useful for people on this website who want to be tested for coxsackievirus B.
Can you remember the cost of this Lancet Lab test, ItchyBurn69?
Hi Hip, have Lancet Lab got back to you re the neutralisation tests and international submissions? I have emailed them too yet have not heard back? If they do reply to you can you please let us know their answer. Thanks
Hi Hip, I think it was around R2600 about $190
I was lucky that it went through my medical aid benefits
That’s not a bad price; the ARUP Lab test for coxsackievirus B costs $440. Neutralization tests are more difficult to do, which is why they are expensive.
@Hannah, not yet heard from Lancet, so I emailed them again.
Is the anxiety you felt similar to a feeling of being off/depersonalised? My main mental symptom is I just don’t feel like myself and every time I try to relax my body panics even though my mind is calm.
My sore throat fits the picture except mine is even worse.
Will the anti anxiety treatments help me feel more at ease and more myself??
IF you are suffering from depersonalization, then the treatments detailed in this post may help.
By “your body panics”, do you mean increased heart rate and adrenaline? If so, then you may have panic disorder (PD); but PD usually affects the mind as well, causing mental anxiety.
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