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Hip was there a reason you believe this could not be a bornavirus infection? Have you been tested?
Borna disease virus (BDV) was one of the first viruses I considered after I first caught my virus. I have not been tested though. It can be treated with the antiviral amantadine 200 mg daily.
As far as I can see, though, Borna disease virus does not cause heart symptoms such as myocarditis and heart attacks, which my virus is very prone to do.
Borna or not the antiviral treatment for it cured my anxiety. Unfortunately I had to order it from an online pharm. Borna is neurological and has no test that I’m aware of. The test is to see if the treatment works for all.
Thank you for the treatment. I want to ask you, in addition to your symptoms, I have lymph node enlargement and hematology, arthritis and other symptoms. Could it be the virus you’re describing? How do you diagnose the virus in China? I’m also highly suspicious of a gut virus, but not necessarily the virus you’re describing. In addition, how to buy the medicine in your treatment plan, these are all prescription drugs in China. I am now immune to the decline. Can I get a solution if I go to check in England?From a painful Chinese high school student
I have the shingles virus and the glandular fever virus and potentially this virus but I’m not sure if I’ve been tested for enterovorus or not but I fit the symptoms.
My symptoms are severe sore throat like yours everyday for seven months, swollen glands, pins and needles occasionally , brain fog (was persistent but now it’s more just a feeling of not being on form) headaches at the base of my head constantly , tinnitus. Do you know what anti virals would help me? How do I go about getting them in the UK?
I’m feeling in desperate need of help :( x
Do you think you might have chronic fatigue syndrome, which often appears after viral infection? If so, the info in this document may help.
Did you look into the Lyme possibility?
While l’m asking this question, l’m so far convinced that it can’t be Lyme or a bacteria of any kind.
However I would like to know your point of view since I’m sure that you did study this possibility.
Lyme is not contagious by ordinary social contact, whereas my pathogen is. Lyme can cause ME/CFS symptoms though.
Good day, All the information on this site is basically a description of the poor excuse that has been my life for so many years. My brains are most affected. I appreciate the treatment options proposed for the various ailments and am wondering if you have any treatment for the skin wrinkling (icing on the cake) and the brown spots. Thank you for this highly informative site. I feel that I finally have found the source of the zillions ailments that have plagued my life.
Hi Emma. Glad you find the site useful and informative.
I have not dedicated much time to looking for treatments for the skin wrinkling, mainly because my other symptoms such a depression, anxiety, anhedonia plus all the chronic fatigue syndrome symptoms are still major problems that I am trying to tackle.
I think the skin wrinkling is likely caused by a loss of elastin in the skin (rather than a loss of collagen). Four enzymes in the body that can destroy elastin are: elastase, MMP-2, MMP-9 and MMP-12. I think raised levels of one or more of these four enzymes is likely causing the skin wrinkles by destroying the elastin. It is possible to reduce the levels of these various enzymes with supplements.
So did your stack stop working then? That´d suck.
Thank you for your quick response. I admire the depth of your expertise. I will try to pursue this route with an Ottawa naturopathic doctor.
Good-day to everyone in this site i want to use this means to also tell the world about dr Ogun the man sent to this earth to help those who are in need, i was very sick all this years without solution i have try many means to get my self cured but nothing work out, so today i am here to also tell this to the people in this site that there is cure to this HSV 2, i was able to reach this man through the means of a friend from UK called Sophia but i live in United state, i am very happy writing this,my friend told me that she meet this man personally when she travel to Africa because of this same sickness and i was so surprise to hear that from her, she explain everything about this man cure to me, that there is herbal cure and curing spell and that was the first time i hear about curing spell, so i ask her which of the cure do you go for she told that, it was the herbal cured. she traveled there and she spend 1 week and 4 days with the doctor so before she could know she was cured totally and he decide to go for test over there before traveling back home, her result was negative and even when she get home her result remain negative i was so surprise about what she told me, i have that confidence to contact the doctor, and applied for the herbal immediately so the doctor sent me the herbal here in US, and i used it according to the way the Dr instructed, now i am cured and free from HSV2 if you want to reach this doctor just email him now firstname.lastname@example.org .
If you need information about me below is my details Name caro latiteEmail: email@example.com Country USA.
Gosh! I hate to say this but Caro sounds like an African scam. Don’t need people like him on this site.
I did not yet test for Coxsackie but HHV6 was found in my saliva in active replicating form.
I have and still am wondering if mycoplasma have anything to do with my symptoms, specifically Mycoplasma Fermentans. Have considered this?
Thanks for your work.
In ME/CFS, mycoplasma can contribute to symptoms. Treatable with antibiotics like doxycycline.
I just wanted to say that, at least for now, and I did not spend too much time on your website yet, – I am leaning towards my skin problem which are exactly like yours – being a bacteria/mycoplasma related condition I also get joint/muscle/bone pain and receding gums.
I saw you list mouth dryness as a symptom, but do you get slimy saliva and gum pain if you do not brush in the morning? I get this even after brushing and one thing that does seem to help a lot is swishing with H2O2 solution which does make more sense for bacterial as opposed to viral infection. I guess what I am trying to say that in all of these chronic conditions we should not exclude a possibility of different symptoms being caused by different pathogens. Another reason I am leaning in the mycoplasma/bacteria direction is that some species feed on fat and that would make sense in terms of skin condition, because it looks to me that our skin is loosing the fatty layer.
I am currently dealing with about 70% of symptoms you describe + a thing called PATM (People Allergic To Me). One of the common symptoms that severe cases of PATM people get is very sticky, glue-like skin and slimy/itchy mucous membranes, I wonder if these two conditions could be somehow related.
Anyhow, thank you, that’s it for now, I’ll be reading more on your website and share if I come across anything new.
PATM (People Allergic To Me) — I had not heard of that before. Has it been validated by a blind test?
Different pathogens may well cause similar symptoms to those described on this website. In the case of ME/CFS, several pathogens are associated with triggering this disease.
If you are asking about PATM being blind validated, unfortunately it is not, it is a condition that doctor’s do not take seriously yet, and a small community of sufferers are working hard on getting resolved.
There a sister, officially recognized condition called trimethylaminuria, and some people I know have both. I can assure that while not yet officially recognized PATM is a real thing, there are way to many people for all of us to be crazy.
PATM manifests itself in us, sufferers, causing allergic reaction in other people. So far after years of theories and information research by myself and others it looks like the cause of PATM is a severe degree of intestinal disbiosis. Though still a speculation, overall, most of us have a big shift in our gut flora, with good bacteria missing and non-common bacteria and fungus colonizing our guts, mucous membranes and likely skin.
The organisms that I and a few others suspect can cause PATM are biofilms producing bacteria – Pseudomonas, Stenotrophomonas, Klebsiella, Serratia, Staphillococus species in symbiosis with some species of fungus, with Aspergius Niger being one of the suspects. Most of PATM sufferers have high titers of mycotoxins in their blood. Big chunk of PATMers have also developed this condition after taking strong antibiotics. The idea is that for one reason or another, the more common, more usual bacteria of healthy human flora get replaced by non-usual not so healthy, but non so benign species, which, do not necessarily cause an acute, but can cause ongoing health issues and cause PATM. How exactly does PATM work? Again a speculation, but both the bacteria and funguses like Aspergillus produce Volatile Organic Compounds and we think that these are the problem.
After long time of hitting a brick wall with regular docs I decided to go to private labs to prove or disprove this theory and most results are still pending. What I got back so far is a positive test for HHV6 and high Staphylococcus Epidermidis in my nose, which I think might be responsible for constant thick bloody mucous in my notrills and possibly for skin conditions.
I have recently tested negative for Mycoplasma Pneumoniae/Genitallium/Hominis, Ureaplasma Parvum/Urealiticum also Chlamydia and Chlamydophyla Pneumonae. There a few more Mycoplasmas, like Fermentans, that I wouldn’t mind testing for just in case, but for now I think I am putting these a side.
Again, I am still to read your website in full, kind of short on time lately, and not trying to dismiss any of your research, but maybe do not dismiss a bacterial infection either.
I have PATM and 70℅ of you symptoms, including this thing, not PATM, being contagious, so I suspect PATM aside we might have the same problem, I’m just trying to figure out if they are related or not.
Final thing I am going to say – disbiosis, a replacement of usual body flora by a more pathogenic, is causing more chronic health problems that the current American medical system wants to recognize. This can happen due antibiotics use or colonizing organizms being just good at pushing out the good flora.
In any case if I come across anything new or my lab results come back with anything interesting – I’ll let you know.
You folks might do some research on Colloidal Silver mixed with DMSO (nebulize, drink, topical) to kill off your viral load. You might also look into MMS (Methylsulfonylmethane) for its Sulfur content (like DMSO), which attaches itself to pathogens. The DMSO is used as a transporting agent to drive the Colloidal Silver deep into all tissues, even bone, and it easily passes through the Blood-Brain Barrier, too. The DMSO is very safe, and has been used for many years to open cell membranes in pathogens that have become resistant to antibacterial, antifungal, and antiviral drugs.
This is Dr. Stanley Jacob’s website, he is the man who Pioneered DMSO:
Do a YouTube and Google search on DMSO and MSM, you won’t be disappointed.
Good luck and best wishes to you all.
I have experienced 95% of these symptoms (and more) for approximately 25 years.
Chronic Fatigue with Chronic Insomnia changed my life dramatically as has increasing anxiety.
The skin wrinkling I noticed first on the back of my legs many years ago and then on the back of my hands in about 2013 (Identical to your photo).
I sort cosmetic treatment for my hands along with the red “V Neck” (2013)(Poikiloderma)
The skin wrinkling and micro creasing of the skin has progressed rapidly this year (Feb 2017) to my neck, shoulders, chest, inner elbows, and now (March 2017) palms of my hands and tops of my feet.
I also have progressing facial scarring alopecia (5th year) (Now resembling acne scarring)
In 2015 I was diagnosed with Osteoporosis (hips) and in 2017 my knees.
In January (2017) I was diagnosed with Lichen Planus (shoulders to feet).
I find the skin wrinkling (and scarring) the most distressing psychologically and this leads to extremely debilitating anxiety and depression to the point where I cease to function.
I have come to terms with always feeling ill and exhausted and a very limited social life (and life) however the skin disorders are the most distressing for me and I am currently seeking a cosmetic solution to this.
I can no longer work due to the Chronic Fatigue and endless medical problems.
56 yr old Australian caucasian male.
For the ME/CFS fatigue and brain fog problems, the best treatment I have found so far is the high dose selenium protocol.
Hi. I believe this illness is the same as the one on the unknown virus/HIV std thread elsewhere. I believe I have unfortunately contracted this. I am under 25 years old, and I am currently 8 months in since my sexual encounter where everything went wrong after. I am experiencing the shiny, crepe-like wrinkly skin at the back of my hand and the collarbone/chest area. Besides that, I am experiencing foamy urine, white tongue and blurry vision. Have had heavy bouts of muscle twitching but they have since disappeared. I did not have any sore throat pain, enlarged lymph nodes, but the effect on my emotional state of mind has been insane with the brain fog / memory loss.
Do you have any idea if this will reduce the lifespan? Also, is there any way to manage the foamy urine, white tongue and wrinkled skin?
Regards, with much thanks.
It’s unclear whether the virus described on this website is the same as the Chinese “HIV-like virus, but with the Chinese virus, usually people become much better after around 1 or 2 years with the virus. I have seen Chinese patients report this numerous times. So if you have the Chinese virus, that is good news in that respect.
The Chinese virus is described here: https://sites.google.com/site/newhivaidslikeviruschina/
I have not found anything to help the white tongue and wrinkled skin. I don’t think the virus described on this website will reduce lifespan.
You might want to see your doctor about the foamy urine; see: http://www.healthline.com/health/foamy-urine#Causes3 . It can be caused by protein in the urine.
I’ve had anxiety for as long as I can remember and I worry about everything so after stumbling across this page while (stupidly I know) searching my symptoms it has terrified me to discover I almost have all of these symptoms described (even down to the dental problems ans fungal skin infections) and I’ve had then for over 6 months now at least. I’m from England and my doctor is terrible so what should I do? Is there anything semi immediate I can do to ease the main symptoms so I’m in a better mental state especially to get further help? Thanks a lot it would mean the world to me to get some advice. Kieren
Hi Kieren, try the N-acetyl-glucosamine anti-anxiety treatment detailed on the Treatments Page.
I’ve written a general update with what tests i’ve had so far etc. but it doesn’t appear to be showing up yet so i’ll reply here just in case. I have been taking that for about 2 weeks now and apart from a small reduction in nasal congestion I can’t say it’s doing a lot, I also take flax-seed oil and turmeric for the anxiety as suggested on several sites and a strong (7 individual tablets every day) multivitamin as well with little results. Anything else you can suggest? I’d much rather go and speak to a professional than try and treat myself but very few people especially in England have any idea of what I’m talking about. Thanks for all the help and advice you’ve given so far Hip you’ve done more than any doctor has for me in years.
I am a PhD physicist who has been developing a system of quantum physic for the last 30 years. I caught this virus some years ago and cured myself. I have treated a few other people and they have either been cured or improved significantly. This is not a chance happening, but the result of a systematic program over many years to boost the immune system to eliminate a number of infections, including bacterial, fungal, viral and parasitic infections. I have treatments for a number of other infections which have produced good results. This is a new science and a new healing technology. So I believe I can help other people with this virus. My research (linked to lab tests) suggests that the mood virus is a type of unknown coxsackie virus. By adding boosts to the treatment it can also be used to treat known coxsackie A and B viruses. My website is out of date, and has been censored, but you will learn more information there. Richard
As I have mentioned here before I think that this problem is bacterial rather then viral in nature. I do not have anything to prove or disprove this theory yet, but I have been reading a lot of medical literature including many research articles and combined with some recent anecdotal evidence I think there is something to this hypothesis. I think an atypical Mycobacteria might be the cause behind this disease.
Would you be open to corresponding on the topic of this problem through e-mail? I would really appreciate your help/input and if we could share some anecdotal information, some things I do not exactly feel comfortable discussing in public guestbook.
Thanks in advance,
I suspect that many people on this site may have different infections (as well as non-infectious conditions) driving their symptoms, so what applies to one person may not apply to another. Your case may well be driven by a bacterial infection, but other people may have a different cause.
Do you have brain fog and fatigue, and if so, do you meet the CDC criteria for chronic fatigue syndrome? In which case, you would find a lot of help on the Phoenix Rising ME/CFS forum.
Hi Hip, thanks for replying,
I do not have CFS, no brain fog, at least not major. I was thinking about starting a thread on that message board, or even creating a message board dedicated to this/my problem, but for now I am trying to understand which symptoms are and which are not related.
I am reaching out to you because besides the symptoms that could not be related, I have – wrinkling of the skin, which over the last year has spread to friends and family. Mood issues similar to what you’re describing. This infection has started to cause all kinds of seemingly unrelated health issues in friends and family. My gums have recede drastically over about 1.5 year perioud. and other health issues started appearing which given my age should not be appearing. I do have a subset of symptoms that are quite unique, but comparing to the ones described above – they are of not significant importance.
Even though I think everyone should be open to alternative perspectives and views to an obscure problems like this, I do not want to be pushing any alternative theories, as I really don’t have any hard evidence yet and maybe it is indeed a C. type virus, I did not test for it yet.
The main reason for me reaching out to you is because I would really appreciate sharing some of my observations and want to to get you opinion on some of those observations, to compare symptoms and get your thoughts. The reason I’m reaching out to you is because there is not that many people that are spending their efforts on this.
I understand where you are coming from in saying that many people may have different reasons for their problems, and that might be true, but I want to assure you I am not stubbornly convinced in anything and not trying to persuade you in any alternative view, right now I’d just really appreciate some of your time to see if my observations have any merit and how similar or dissimilar our conditions are.
Thank you and thank you in advance.
OK Alex, I have sent you my email, so that you can send me further details.
Hi Hip. Regarding the wrinkles, do you only have them at the back of your hand? I notice them especially so along the collar bone/chest area. I’m about 8 months in since my infection. Really worried what will happen in years. Cheers.
The wrinkles appear everywhere.
hi hip I read this story . what is your thoughts about it ? can we get any benefit for the same treatment.
Dr. Paul Marik of Eastern Virginia Medical School
Sepsis is basically a super infection.
He thought it might help, and since the common steroid hydrocortisone works in a similar fashion, he asked nurses to combine Vitamin C and steroids, and inject them intravenously.
He then added thiamine (vitamin B-1) to the mix.
Now, 150 patients have been treated and have recovered
It is a very interesting. This article covers the rationale for the use of vitamin C and vitamin B1 in sepsis: https://emcrit.org/pulmcrit/metabolic-sepsis-resuscitation/
Although it looks like back in 2010, Dr Karel Tyml in Ontario, Canada discovered the same thing: see https://www.sciencedaily.com/releases/2010/11/101117184457.htm
In that 2010 article, it says that vitamin C helps sepsis by stoping the formation of blood clots during sepsis — clots which block the capillaries and cut off oxygen.
However, I don’t think this is going to help in chronic low level viral infection.
(NOTE: There appears to be problem with my comments being published so if I post more than one comment with very similar wording just delete any duplicates as I can’t see them, thank you.
Anyway my third time writing this comment:
Hi just wanted to post a little update on how I’m doing and what “treatments” I’ve done so far, spoiler alert: Nothing is working much and doctors have no idea how to help me. In the last two months I’ve seen three separate GP’s five times in total with little results or explanation for what is causing me to have about 90% of the symptoms listed on this site. I’ve had two blood tests (with one coming back as a high white blood cell count but that was due to an active tonsillitis infection which was easily treated with antibiotics) but otherwise normal and also a chest x ray (not sure why but I agreed to do it for peace of mind) and unsurprising that came back normal as well. I feel like I’m getting nowhere and the doctors I’m seeing have no idea what I’m talking about or how bad my quality of life has become. I’ve tried a lot of vitamins etc. and several of the treatments for the anxiety and mental symptoms in particular all in varied strenghts and combinations with no real changes. I’m at a loss as to what I can do next as I have no idea who to speak to in the UK who will understand the virus I ‘seem’ to have. I’m sorry to grovel as we are all in the same boat but I’m just so tired from it all, the various recurrent infections and mental symptoms mean I literally have no life and haven’t had for a couple of years now and at 19 years old it’s really getting to me. If anyone has any advice at all or wants to talk in more detail ( as I can’t write my whole story/symptoms here in one post) it would mean a lot to me. Thanks for reading my boring post. Kieren
The reason is not the virus
The reason is in protozoa, look for lamblia, amoeba, trichomonas
Here are my reasons and reasonings in Russian like your forum
Here is my story
Interesting information on the website of his clinic
DO YOU HAVE GUM PROBLEMS?
YOUR MOUTH IS PROBABLY INFESTED WITH PARASITES!
Oh my goodness, I’m sitting here tonight feeling horrid, trying to get a handle of why I feel like this. I dealt with multiple issues for years. Sinuses sit right in the middle of this along with asthma and migraines. As I read your info I keep connecting. I’m going to spend some more time with this. Thank you, Michel
In a nutshell, this is article describes me to an accuracy level of at least 90%. I am speechless right now after reading this. I have to go re read it.
after working a motor spares and accessories store i noticed my hands became creppie looking. making my hands look like its 80 something.
Your feedback would be appreciated
Hip, I’ve spoke with you a couple time’s about what my wife and I are going through. I told you about the mold and bacteria that was in my wife’s sputum culture. Now, one more bacteria has showed up and it’s contagious but the doctors are still not treating her. I can’t get them to run no test on me and I know I have what she has tested positive for and we both think we have this SICKNESS also. I have found a place called walk-in-labs where I can order test online and have the test did right here in my home town and get test results online. My question to you is , is there anyway that you can look through the test and tell me what kind of test I should order that might show this sickness and show my doctor’s I really am very sick . Thank you
Hi James, would you say you and your wife satisfy the criteria for having chronic fatigue syndrome (also called myalgic encephalomyelitis), and usually abbreviated to ME/CFS?
The CDC criteria for ME/CFS are here, and the stricter CCC criteria are here (see page 2).
There are no lab tests for diagnosing ME/CFS; you need to diagnose on symptoms alone (and also you need to rule out other diseases that can cause the same symptoms before you settle on an ME/CFS diagnosis).
If you do have ME/CFS, then you can try some of the treatments ME/CFS doctors use, including oxymatrine (boosts the immune system), low-dose naltrexone (also acts on the immune system), high dose vitamin B12 (often helps with the brain fog), the methylation protocol. Most of these you can do yourself without the need for a doctor, provided you read a bit about the treatment. In most cases these do not cure, but sometimes they improve symptoms.
If you want further info on tests and treatments for ME/CFS, then have a look at the following roadmap document that I compiled:
Would ME/CFS cause the immune system to allow these other bacteria to invade the body ? What ever this is had cause bowel problems , joint and bone problems and we have some color of sputum every day. I have diffuse bilateral bronchial wall thickening which suggests airway inflammatory disease/ bronchitis. a 4 ,5 and 7mm right upper lobe nodule . my wife has tested positive for nocardia , moraxella catarrhalis and mycobacterium avium-intracellulare complex. Would that mean me/CFS ?
Increased bacterial and viral infection is common in ME/CFS. Bowel issues like irritable bowel syndrome are common in ME/CFS. Joint pain can be part of the ME/CFS picture, especially pain that is transitory and travels from one joint to the next.
However, Mycobacterium avium-intracellulare infection (MAI) is not usually part of the ME/CFS picture. According to Wikipedia, MAI treatment requires treatment with a combination of antibiotics for 12 months.Again, for Nocardia, Wikipedia says that antibiotic treatment is usually given, usually for at least 6 months. Again for Moraxella catarrhalis, Wikipedia says that antibiotic treatment is given.
I can’t understand why your wife is not getting treatment for these infections from her doctors. Can you ask her doctor why she is not being treated? You can show these Wikipedia articles to the doctor, and ask why he is not recommending treatment, when the articles say that antibiotic treatment is necessary. Or perhaps get a second opinion from another doctor.
Your bronchial symptoms are not part of the normal ME/CFS picture. According to Wikipedia bronchial wall thickening (peribronchial cuffing) can be due to a number of illnesses or conditions, and some of those illnesses, if you look them up, can be caused by various factors, including infections in some cases. Bronchial wall thickening can also be caused by COPD, which I notice you said you had in an earlier post.
The Wikipedia page on Moraxella catarrhalis above says that this bacterium can infect the lungs, so maybe it might be worsening your COPD, assuming you have this infection also. I read just now that “Moraxella catarrhalis causes approximately 10% of exacerbations in chronic obstructive pulmonary disease (COPD)”.
We were health, living an active life style and all at one these stuff hit us hard . my father was sick ( like I am now) and the doctors told him he was healthy but he never got better and died of a lung infection and stroke. I really think he had what I have now. With in two weeks of his death , I started getting sick and I could feel like a fog creeping over my body. My breathing got so bad I slept in a recliner for nearly two years because I couldn’t lay down. Then I felt it go into my intestines and I hurt so bad that I thought I was dieing. My smell , taste and other senses are almost nonexistent. I get rashes my finger tips bust open. And more that I don’t remember at the moment because it’s ever messed with my mind. Within a year my wife has what I have. Her Pulmonary doctor run sputum test and come up with the test I told you about and my doctor at the same Pulmonary place won’t do a sputum culture on me and says I have asthma . I went to a infectious diseases doctor and he did no test, put no hands on me and says ” if it hasn’t killed me in three years, it isn’t going to”. My wife went to the same infections disease office and the would do nothing for her and talked crap to the Pulmonary doctor that referred her. I can show you these test results and prove I’m telling the truth and we don’t know why no one will do NOTHING TO HELP US. We really feel like this is slowly killing us. I sure wish we knew where to turn!
This is me to a T
I ordered a blood culture from walk-in-labs today for $119 and went to lab Corp in Asheville NC and had blood drawn . They test for bacteria and fungus . That’s a starting point . I can’t believe my doctor’s won’t order the test that I ask for.
What is the name of “your virus”?
I’ve not been diagnosed yet but my wife has been diagnosed with mycobacterium avium-intracellulare complex,moraxella catarrhalis (heavy growth),Candida dubliniensis (light growth), Rare Candida albicans , (2) species of penicillium and nocardia . I’m not sure what this means and how it all got in my wife’s system ( and problem mine to ). But we are in the process of trying to figure it out.
I live in Brisbane Australia & I cannot think of one GP that would even think of this or be willing to investigate. I am positive I have this. Finally everything is adding up. I wear shirts & singlets/shirts in my line of work & with the relatively sudden onset of wrinkles, it is not pretty to say the least. 👯
Last couple of days I chew slowly couple of cloves a day. I feel like it help me for brain fog. do you have any experience of using cloves..?
I have tried clove essential oil, a few drops mixed in some cooking oil and taken internally. But I did not notice much from it. I will try some actual cloves instead, to see if it helps my brain fog.
I wondered if you think I have this virus.
March 2015 I had glandular fever. April 2015 I had shingles. July 2015 I suddenly felt extremely tired on the Friday then the Sunday night I went to bed and my whole body started having pins and needles and I felt pain in my glands in my neck and collar bone and I felt like I’d been drugged. From then onwards I remained in an extremely anxious and that anxious state has not really left this entire time but I’m not actually anxious about anything. I lost my appetite initially and had severe insomnia. I had severe brain fog on and off (where it was difficult to even read a sentence) for the entire period although it has gone since January 2017. And my throats has been swollen since March 2016.
Doctors diagnosed CFS and chronic sphenoid sinusitis .
Now I have anxiety / muscle twitches/ sore throat/ sinusitis and lymph node swelling constantly . My anxiety makes it hard for me to sleep. I just found the virus has taken away who I really am , I used to be able to sleep amazingly, motivated, positive and now I’m none of those things and at 21 it feels my life has fallen apart.
Would the supplements help my anxiety? Is it ok to take flaxseed capsules and not the oil? And is tumeric capsules ok too? Struggling to buy the NAG so going to order online.
Someone in need of a miracle.
I had no mental health problems prior to July 2015 and it’s so frustrating that now I suffer from anxiety
Also I had depersonalisation / derealisation with the brain fog but that’s gone now thankfully
The anti-anxiety supplements are one of the few things that I found worked for treating my viral symptoms. Most of the other mental symptoms the virus caused I found much harder to treat, and are still present to a degree, although they are not as bad as they used to be.
So hopefully those anti-anxiety supplements will at least fix your anxiety. Turmeric capsules are fine, provided you take a dose of 1000 mg. If you want to use flaxseed powder instead of flaxseed oil, you need around 30 grams of powder daily (30 grams of flaxseed powder is equivalent to for 13 grams of flaxseed oil). Flaxseed oil capsules are not economical, as you would need 13 capsules daily, assuming each capsules contains 1000 mg of flaxseed oil.
Inflammation from your sphenoid sinusitis may be affecting the brain, and might be driving some of your mental symptoms such as anxiety, loss of motivation. If you can reduce the sphenoid sinus inflammation, you may start to feel a bit better. Nasal irrigation with warm slightly salty solution may help reduce the sinusitis. Look up “nasal irrigation” or “jala neti” or YouTube to see the irrigation technique.
I also found that the supplements listed in this post help reduce my chronic sinusitis.
Hello all, I was told by a nurse friend that I could have this disorder. Has anyone experienced a sensitive tongue and gums as in brushing my teeth they are soar and bleed, along with my tongue?
Interesting information on the website of his clinic
DO YOU HAVE GUM PROBLEMS?
YOUR MOUTH IS PROBABLY INFESTED WITH PARASITES!
Also, was wondering if anyone knew of doctor in the Kansas area that could help with this virus? Thank you very much!
This disease is not a viral nature, but a parasitic disease, caused by unicellular parasites of the genus Trichomonas
Thank you very much Mirulen! This all started 8 months ago with chronic sore throat and 2 months ago nasal drip, now this with the gums and tongue. It just seems my local Dr. and the nose, ears, and throat dr. wants to dismiss any of the evidence on this website. Thanks again! …… Will investigate more info.
You should understand that this is still not studied and that no one knows how or what to treat, do not use tablets against them, everything will come back
It is necessary to work with non-traditional medicine
Gum will help the gums to dissolve the pomegranate skin and keep the vortex and swallow it will work and in the stomach
Hi, been searching the net trying to self diagnose myself and stumbled across this site. For me this all started about 8 or 9 minths ago. I must say a lot of the things people have experienced have happened to me minus the sore throat bit. It started with me stuggling to pass urine, everytime i would lay down it felt as though i need to go to the toilet however when I got up and went nothing would come out. I also had the growling stomache from time to time and my bowell movements changed and i still have an itchy anus from time to time. I was also very dizzy in the early stages and my eyes were quite blood shot. All these symtoms have since calmed down the only thing that i have recently noticed is dry crepey skin which is all over my body and can get a little itchy from time to time. Not sure what to do? Been to the doctors numerous times and was given cipro as they thought i had prostititus. Not sure if this just down to stress or if i actually have somthing going on?
I forgot to mention that i have quite a few floaters in my vision. I’ve always had them but now I have noticed that they increased by quite a bit.
Hi which supplements help with skin creping and loss of elastin in skin?
Unfortunately I have not found any yet, Claire. If I find any, I will post.
I have a sore throat now for two months. It started suddenly with the symptoms of viral infection. The soreness is not going away no matter what I try, and I am stil feeling sick. My throat and soft palate look similarly to your picture. Can you clarify for me your sore throat symptom at first? How much pain or discomfort it have caused you ? My was and is guite painful and uncomfortable with some burning sensation. Thank you for your answer.
Have you looked at XMRV as a possibility?
Go borna virus. Treatment for it worked great. Only prob is there is no test for the virus.
borna virus? what treatment?
Hi All, I found this website about a year ago and I was so happy to find a group that knew what I was going through. The hardest part of this disease is that it can’t be diagnosed. When I was on the website I learned of Dr. Richard Ellis from England. http://www.ebva.co.uk. I started Dr. Ellis’ remedies on Feb 20, 2017. I have about 2 weeks left of the remedies. I am doing well. I believe that I have had this disease for decades. Dr. Ellis’ remedies do work and I am so happy and grateful. I am able to do things that I haven’t been able to do for years. I am bike riding and walking and hope to start running again when my stamina is built up. My sore throat was always 10 out of 10 painful. My brain fog is gone and I am actually getting things done again. :-)
Have you looked into eosinophilia? Eosinophils release tons of inflammatory cytokines, and they are implicated in upper respiratory allergic problems. Additionally, they release elastase, which might be related to the skin problems accompanying the virus discussed here. When I saw that connection I immediately remembered this site.
Tinosphora cordifolia has shown some effectiveness against eosinophilia and is an immune modulator that may have other antiviral benefits.
Hey hip, something that concerns me is that I know many people who have caught this including myself, some less intensive than others. I even had a conversation with someone who lives near me that went through the same things I did, and as we all have with our doctors not knowing what’s going on. Even though some people feel less effects than others I still hear them complain about strange symptoms they have never gave before. Wheather it be upset stomach, acid reflex, sore throat, or any of the other varying side effects which leads me to be very baffled. Doctors must be noticing something is going on. Do you think they don’t notice, don’t give a crap, notice but don’t know what to do? I’d like to know your thoughts on that.
I think there will be many common viral, bacterial, fungal and protozoal infections of all sorts that may lead to mysterious symptoms and chronic illness, not just the virus described on this website. So then it becomes difficult to know what infection might be causing what symptoms. It’s further complicated by the fact that the same infectious pathogen will often produce very different symptoms or diseases in different people.
You might find this article of interest: https://sites.google.com/site/humandiseaseslinkedtopathogens/
So I don’t think it is that easy for a primary care doctor to keep track of all this. However, if you go to an internationally renowned ME/CFS specialist (assuming the virus you have triggers ME/CFS), then they will be far more knowledgeable about the effects of pathogens in the context of ME/CFS, and these specialists are accustomed to testing you for the relevant infections, and treating you with antivirals or immunomodulators in some cases.
It’s good to know this website. I don’t know if it can help to me overcome the illnes, but somehow it makes me have idea about what kind of virus I may got.
My Symptom almost the same as what you mentioned in this website. But I didn’t have Receding gums. I still remember the day I got this unknow virus. I eaten a pice of bread in the morning, then when I arrived my office I start diarrhea, and in the night I had a high fever. I thought I just eaten something wrong in the begaining. However, the other symptoms came to after another. I sufferd for over 8 months pain. The main symptom is fatigue which almost last 8 months.
I think you are right, it’s Enterovirus. Because my symptom start from intestines and stomach. I had stomach issue for about 1 month after diarrhea(including Belching,Gastrectasia). Also, I noticed that the people who live with me for a while will get Iaryngopharyngitis. It’s one of my early symptom as well. But seems the virus didn’t keep working to their bodies.
In the first year, I thought it may HIV that make me fear. I did 6 times test in 1 year include 1 time Nucleic acid detection, all result negative. Now my body feel become normal, but I still worrying about if these symptoms will return again, or my immune system will be destroied by this unknow virus. May I know how many years have you been infected by this virus and does your body become better or worse in these years? Do you tink this virus will hurt people’s immune system ?
Expecting to hear your feedback.
Caught in 2003, most likely is CVB4.
Thanks your feedback. CVB4 is possible. But as I know many patients CD4 become lower than normal people. That’s why I worrying about if it’s close to HIV virus. However, as I know Intestine is the biggest immune system in human body. So it’s a kind of reason why our CD4 lower than comom people. What do you think ?
You are referring to the Chinese “HIV-like” virus, which may be a different virus.
Yes. But the syptoms are the same as yours. And they also infected people who live with them. Maybe I misleaded you to a wrong way, most patinets their CD4 is lower than comom people, but they CD4/CD8 is normal. Have you tested the CD4 ?
No, there are some differences in symptoms, see this page, and search for “difference in symptoms”. My CD4 count was normal. My CD4/CD8 ratio was 1.54, which is higher than normal.
I am confuse. I don’t know which virus I cought. I don’t have Chest pain，Muscular atrophy. But I have
skin peeling symptoms (on palms of hands and soles of feet）and muscles constantly twitch, all my syptoms are temporary. In another hand, my syptoms happen schedule meet yours. Maybe I need to test my CD4. I suspect it may Leprosy bacillus. Because I have 2 piece of rash whcih without any sensation on my foot(can not feeling pain or temperature), this very like Leprosy.
Thanks for your answer.
Did you consider at any point during your infection that the infection could be bacterial?
To be more precise, based on several case reports and reviews, bartonella was the root cause of similar syndromes.
After checking among a long list of possible pathogens it seems that bartonella supp is among the few, to not say the only pathogen, that have been reported capable to cause every single symptoms.
Also intrahumun transmission is suspected since there are several cases of unexplained family infections.
Regarding transmission, and knowing your background, I would like to ask you your point of view regarding bartonella transmission through saliva and skin contact? I mean in every mammal bartonella is shedding in saliva and fur so why will it spare humans?
I did consider Bartonella, but the Bartonella henselae incubation period is 1 to 2 weeks, whereas my pathogen has an incubation period if 12 hours (observed multiple times, when people caught my pathogen from me), so this does not match. Also, my virus spread readily to over 30 people I known by ordinary social contract, whereas Bartonella does not spread readily. And I had no improvements in symptoms even after a month of doxycycline.
You all need to head to http://www.unknownstd.freeforums.net asap.
A Chinese researcher studying this for 7 years has discovered this is likely a parasite, a type of ‘bloodthirsty mycoplasma’.
I have bartonella species in my radar also. Capable of producing all of these symptoms certainly. They are up to 27 species found so far and more added each year and most are capable of infecting humans. They are typically slow growing compared to most so 12 hr incubation period would be uncharacteristic as you say. But who knows what the atypical species can do.
In case it’s of use to others here. The best source I have found on bartonella is a vetenary doctor – who is one of the leading researchers in the field. Edward Breischwerdts DVM
His company galaxy diagnostics does testing ( so potential conflict I know)
The organisms predominately cause symptoms in all /any organ or body part through disrupting blood vessels at the micro and macro scale causing disruption of flow of oxygen an nutrients to the tissues, with insueing drop in function, immune issues, neurological issues etc etc.
YouTube his presentation at Norvect here https://www.google.co.uk/url?sa=t&source=web&cd=2&ved=0ahUKEwjUl6ak0KvVAhUBB8AKHeFxAFUQwqsBCBEwAQ&url=https%3A%2F%2Fm.youtube.com%2Fwatch%3Fv%3DSz9e-is-UuY&usg=AFQjCNE5Y-f5YUh-ih7sxrt78KRbIoCHRA
I am 62 years old and it is only about 10-15 days ago that I noticed the crepey wrinkles on my hand which to my observation had appeared overnight? I am now taking medications for my anxiety which was prescribed to me by a Psychiatrist mainly because about a few months ago, I was confined on the Cardiovascular Intensive Care Unit due to a palpitations which my Cardiologist cannot pinpoint where it was coming from or what is causing it. I had a long-term medication of Motillium and according to some research studies, Motillium causes Heart Attacks as side effects from taking them. I am confused about these claims. I wonder… how can I determine if I have contracted Chronic Sore Throat/Mood Virus?
Kindly help me determine things about this disease. I am surely be obliged and it will be of great help for our family as well as other people preventing this illness to spread.
Thank you and may God Bless us all!
hmm. this is strange, about the Mycoplasma, because i ve had hda same symptoms in here, and i was tested positive for Mycoplasma Pneumoniae in a blood simple test
Hi hip does the skin wrinkling ever get better? is there any treatment
for it? also do you find people with this condition have tingling in their fingers mostly upon waking. Thanks for help
No, unfortunately it does not seem to get better. I don’t know any treatment. The tingling can be paraesthesias, which people with my virus do get, but usually body-wide.
i dont know if this is the right placr to reach out to you, so excuse me if its not…
actually i wanted to post in the “completely-eliminated-my-severe-anxiety-symptoms-with-three-supplements” -thread but they havent approved my post yet , probably because i dont have me or cfs and only wanted to comment about NAG…
So this is what i wanted to write:
( I hope its not too long, but i really want to know about this and been learning about this whole anxiety topic for years! )
Hi everyone ,
i only created this account to comment on this thread .
the short story is :
i took one capsule of NAG , got strong diarrhea and want to know why.
the long story is:
i am 23 years old and have had anxiety ( i would say social anyiety and GAD and also some irrational phobias ) for the last 3-4 years. but
if i think about it, it was there for a much longer time it just wasnt that bad.
. i always thought my anxiety was kind of chemically /physically caused and not mental. so comparable to hip i tried a lot of supplemets (40-70) to figure out whats going on. long story short . I probably have pyroluria , or at least i feel much better on very high doeses of B6 and Zinc (i dont feel better on just high doses)
so i was able to reduce my anxiety and especially improve my energy levels a lot .but still there is some anxiety ,especially physical anxiety if you know what i mean?
in situations that i used to be afraid my body responds to this situation with extreme symptoms like sweating , strong heart beat for know reason… just panic
and i mainly wanted to get rid of this . and the rest of my anxiety.
so i ordered jarrows nag . i received it and took one capsule. one hour after that i got strong diarrhea.
So for me this could mean two things :
1. Its some kind of herxheimer reaction , that is cleaning out bad bacteria (dont even know if NAG does that ? )
2. Its making some existing gut issue worse .
There is already a thread called “NAG (N-acetylglucosamine) increases Candida virulence” and hip already commented that it might be true ,but also the opposite might be true ?!
i also found this in an article:
“Emerging data indicate that the ubiquitous sugar GlcNAc is sensed by a broad range of organisms as a way to detect growth of neighboring cells or pathogenic attack.
The ability of fungal and bacterial pathogens to regulate virulence functions in response to GlcNAc suggests that parasites will too, a possibility supported by
the important role for GlcNAc metabolism in Leishmania . The widespread presence of GlcNAc also suggests that is well suited to mediate interspecies
communication with the host or between microorganisms to promote either symbiotic relationships or pathogenic interactions. In this way, GlcNAc is similar
to many different chemical messengers, including quorum sensing factors, that are also used to communicate both intra- and interspecies . Thus, it will
be important to define the roles for GlcNAc signaling in complex environments, such as the human gut or in polymicrobial infections that contain a diverse array
of bacteria, fungi, and human cells .”
So maybe i should add that i am almost 100 % sure that i do have some kind of gut issue.I long suspected to have Candida, SIBO or IBS ( always had a lot of bloating)
in the end i am not sure what issue i do have , only that there is something wrong with my gut. i am also sure ,because of a lot of stuf i read,that inflammation is one of my ( if not THE) mainproblem(s) . so from what i have read on this thread this makes me like the perfect person to successfully try NAG…
The morning after the first dose and i still felt calm as after the first hours…
Today is the second day i took two divided doses of about 300 mg and 450 mg and i definetely felt the calming effect! i dont know why and if it was because
of NAG but i did feel some agressions in the afternoon and was really sweating to some small things
But i didnt get diarrhea anymore !
Does this mean i am one of the “responders” to NAG?
I want to stress that i am not pro or contra NAG ! I just want to know if it helps or damages me ^^ .
I also dont have CFS or ME
One thing you can try is transdermal NAG: opening a capsule of NAG, and rubbing the powder onto a large area of your skin (eg, your thighs and legs), and then adding a few drops of water afterwards to wet the powder and allow it to absorb into the skin. That way you may bypass any gut problems that NAG might cause you. But if that does not work for your anxiety, you may want to go back to the oral dosing of NAG. It may be that (at least some of) the anti-anxiety effects of NAG arise from NAG’s effects in the gut, so if that’s the case, transdermal NAG may not be as effective as oral NAG. But it is something you can experiment with.
Your anxiety symptoms of sweating and strong heart beat (the physical symptoms) indicate that you may have panic disorder (PD) rather than generalized anxiety disorder (GAD). The main differences are that in GAD, the anxiety is more or less continuous, and the anxiety is confined more to the brain/mind; whereas with PD, the anxiety is not present all the time, it only appears in short episodes called panic attacks, which typically last for 5 to 20 minutes, though sometimes they can last up to an hour. Panic attacks involve the release of adrenaline, which is why you get the sweating and raised heart rate.
If your anxiety only appears in short episodes like this, then you probably have PD rather than GAD. But is your anxiety is present most of the time, then its GAD. As far as I know, NAG can work for GAD, but I am not sure if it helps PD.
thanks for answering. did you read the full text? i also wrote that i didnt get diarrhea on the second day but i did get : some agressive behaviour, my throat feels so clear and empty breathing feels weird because there is less resistance but i didnt have a sore throat before!
i think i do have pd. however NAG seems to help me i do feel its calming effect . does that mean i have brain inflammation?
Yes, I read your text, but in case you do get more bowel symptoms, transdermal may be useful. You’ll have to keep monitoring any adverse effects like aggression, and see if these are just transient, or whether they remain. NAG is good for the mucous membranes throughout the respiratory and gastrointestinal tract, so it will reduce any nasal and sinus congestion that you may have. And normally NAG is considered beneficial for the intestinal mucous membrane lining.
Responding to NAG does not prove you have brain inflammation, but that’s a possibility, since several mental health conditions have been linked to neuroinflammation.
okay thank you.
did you ever hear of somone he gets agressive o NAG ? i also feel less able to calm down like wired but tired … I will observe that , but on the other hand i feel less anxious if that makes sense. it feels like i my adrenals are working a lot . i remember this feeling from my adrenal fatigue like time .
i also read that nag is raising your heartbeat. whats with that ?
i read from another person on your thread on phoenix rising who said it made him feel spacey ..
i also rad that you shouldnt take nag when you have asthma . i had asthma when is was a kid. is that a contraindication?
I got increased depression when first taking NAG, but after a year that effect disappeared. Not heard of aggression, but supplements can create different side effects in different people. I don’t know about the asthma question. If you find any info, please post.
this is for the asthma :
but couldit be that this is some kind of detox reaction, thats eventually gonna go away? because a few hours after taking nag i felt super nice and calm and slept really really fell , but beofre htat there was a lot of mucus coming up and agression … just sayin because i got that detox feeling once from a supplement and it went away after 2 weeks ..
my body also feels like it needs a lot of rest , so ill go a little more slow on the dosage i guess …
Thanks, I’ve added a note in my original NAG thread that NAG may aggravate asthma. You might consider trying lower doses initially, eg, half a capsule, to give your body a chance to get used to NAG. There is a parallel NAG thread on another forum here by the way.
my body is overwhelmed , its seems like im getting the flue which is essentially herxheimer reaction . I’m already down to half a capsule per day, but still dont feel good. its strange that theres no evidence that this happened to anyone else…
but i still think there might be some benefits for when all the herxing is finished :)
thx i ll check that out
Hi, I came across your blog on PR while researching possible persistent infection with CBV as a cause of Chronic Fatigue Syndrome like symptoms that occurred in my fiance and myself at the same time 2.5 years ago.
Our initial symptoms were the typical viral onset pattern of a sore throat, fever, tiredness, headache, with overwhelming fatigue for 24hrs that never went away since.
This was followed by extreme anxiety attacks for my fiance ( whereas I just don’t handle stress as well as I used to )
We now have continual chronic fatigue with symptoms flares and delayed fatigue if we step outside a very restrictive controlled diet, lifestyle, sleep and stress managed routine.
symptoms that as far as I am aware are not typical of chronic fatigue syndrome in general are:
– thin papery, wrinkled – like that of a 65yr olds esp on legs and arms
– new moles and other reddish / brownish discolourations esp torso
– also patches of hypo-pigmentation ( unpigmented white spots ) on arms and legs
painful – but also swollen joints
– knees being the most obvious / visible – swollen all around – up to 1.5x normal size puffy, reddened
– was at its worst for first 6-12 months – now somewhat reduced
– random pain with or without swelling in any other joints – eg swollen painful finger for 1 day
– obvious reddening of lower extremities when standing – often with livido pattern
– poor capillary refill on legs and feet in particular — eg 5 seconds or more but suspect this is systemic
– extremely painful red deep blood blisters appearing on toes of one foot – then a year later on the other foot
as per usual, we have seen numerous NHS and private doctors, pointing out the unusual nature of symptoms and the fact that we both became ill at the same time and have had only the usual diagnosis of CFS, Fibromyalgia, post viral fatigue depending on which we talk to.
NHS test have shown nothing much out of place
occasionally mildly elevated liver enzymes
occasional plasma viscosity on the high side
Private tests have shown disturbances in neurotransmitters in Tryptophan metabolism – eg Quinolinic acid extremely high ( around 10-12 standard deviations away from normal range )
also, stool testing has shown imbalanced intestinal flora/dysbiosis – which was treated and returned to normal – but symptoms were not relieved suggesting a deeper cause.
The following herbs and supplements help to some degree – mainly
Japanese knotweed for CNS inflammation and overall symptoms – around 10g a day
Andrographis paniculate for CNS inflammation 400mg 3x day
D-Ribose seems to help for energy – as do some Chinese herbs like – Eleuthero, Rhodiola
Niacinamide helps for anxiety – 500mg daily
5-Htp helps for anxiety – 100mg daily
The reason for commenting here is that I am particularly keen to understand if the above symptoms are consistent with your experiences in yourself and the others you know of with this virus / potential illness. especially the swollen knees and circulation issues as these seem unusual.
thank you for taking the time to share your experiences.
Hi Garz, pain in the joints, especially pain that comes and goes and migrates to other joints, can be part of the ME/CFS picture, although I don’t have this symptom myself. However, painful and swollen joints is not normally found in ME/CFS; but painful swollen joints can be a sign of Lyme disease, especially when it is in the knees and other large joints.
Though Lyme disease is not usually considered contagious, so the fact that you and your fiancé got the same illness at the same time suggests it may not be Lyme (although recently there has been some research indicating that Borrelia can be transmitted during unprotected sex, so possibly it could have been transmitted this way). Elevated liver enzymes is fairly common in Lyme
High quinolinic acid can also be part of the Lyme disease picture. Quinolinic acid may also be responsible for anxiety, as this neurotoxin potently activates the NMDA receptors in the brain. Do you live in a Lyme risk area in the UK, or do you visit such areas? There is a UK Lyme disease risk map here (though it is not very clear), and a Scottish map here.
The reddening of lower extremities when standing may be a sign of postural orthostatic tachycardia syndrome (POTS), a condition that often comes with ME/CFS as well as Lyme. POTS involves blood pooling in the lower extremities on standing, due a dysfunction in the autonomic nervous system which would act to counter the increased blood pressure created by standing. POTS can cause fatigue and anxiety symptoms just one its own, but can be treated to an extent with medications.
You may find this roadmap of ME/CFS testing and treatment of use.
If you are still suffering from anxiety, some of the treatments listed on my thread here may help (although you may want to avoid NAG, as this may not be good in Lyme disease). Possibly ome of the quinolinic acid inhibitors listed in this post may also help reduce anxiety.
you seem like a knowledgeable source ,so do you have suggestion for a supplement that supports nerves ( other than b vitamins)?
Thanks for the rapid response Hip,
appreciate the input.
Yes, Lyme is on our differential diagnosis list for all the reasons you mention – but we have both been tested by the NHS and found negative so we had pushed that back down the list of possibilities to some extent. Although there is so much controversy about the UK NHS tests that we will now likely have a private test done also for peace of mind – either through Armin Labs, Germany or Igenex in the USA.
We live in the Cotswolds – not a notified high risk area for lyme – but I have since found that Leeds or Manchester University is doing a tick study in our area and so far published data that shows the Lyme spirochete in 9% of ticks they gathered – so not out of the question.
My fiance has the most pronounced reddening of the legs and had a tilt table test and 48hr monitor fitted but apparently, they found nothing significant in the results.
thanks for the CFS diagnosis/treatment link – will read that
thanks also for the quinolinic acid inhibitors – we are trying to stay as natural as possible with the treatments/supplements as we are taking them long term. we currently take turmeric, low dose copper with zinc, DHEA I think Knotweed does that also – and we find L-theanine quite effective at reducing anxiety if taken 2x daily – and pasque flower tincture in reserve if it really spikes.
interesting that your situation does not reflect the joint swelling – despite the many similarities, but of course there are so many potential pathogens – and many of them present differently from person to person – so that makes it a bit of a needle in a haystack.
I think our next step will be to do as many private tests as we can afford for the most likely candidates. as without having at least a broad idea of what causative agent we are dealing with treatment is very difficult indeed and usually reduced to symptom management rather than a permanent solution.
good luck with your journey and thank you for your input.
One final point.
I can recommend the work of Stephen Buhner if you haven’t come across it already. He is a very interesting individual and renowned herbalist with a special interest in chronic conditions.
He has written a book called herbal antivirals that I think may be useful to you. It’s a guide to treating a range of emerging virus diseases naturally with a focus on 7 main antiviral plants, immune modulating herbs and other supportive therapies.
There are also small specific sections on enterovirus, rota virus etc.
The guys approach is to combine the the best of modern scientific research with the experience of traditional medicine approaches from around the world, and western botanical practice to form what is a more rounded and effective approach.
Garz, if you want to test for coxsackievirus B and echovirus, you’ll need to send blood samples to ARUP Lab in the US, as this is the only commercial lab I am aware of in the world that offers a neutralization-type test sensitive enough to detect the individual serotypes of coxsackievirus B and echovirus. Unfortunately is pretty expensive, $440. See the FAQ page for more info.
But as you are no doubt aware, it can be a needle in a haystack situation when trying to pin down the pathogen responsible for your symptoms.
Thanks for the book recommendation. Regarding antiviral herbs: what you have to watch out for it the difference between in vitro studies (conducted in a cell line in a dish), and in vivo studies (conducted in the human body or in animals). Lots of compounds from herbs can have potent antiviral effects in vitro, when used at a certain concentration in the cell line; but this does not necessarily pan out when you take the herb or compound orally, as toxicity or overdose issues of the herbal compound prevent you from taking an oral dose high enough to get the same concentration in your blood and tissues as was used in the cell line in the in vitro study.
This applies to drugs too: there are many drugs that have off label potent antiviral effects in vitro. But when you calculate the oral dose of the drug needed to get the same concentration in the body tissues and bloodstream as was used in the in vitro study, you often find that the oral dose is way too high (much higher than the maximum safe dose) to be of practical use. In these circumstances, the in vitro antiviral effects of herbs, supplement or drugs become in practice useless.
So in vitro antiviral studies do not necessarily mean the antiviral compound will have a useful antiviral effect in vivo.
Buhner s work is mainly based on the work in humans.
Typically a multi-pronged approach.
Interrupting the cytokine cascade the particular pathogen initiates
Enhancing the immune system so the body can fight the infection
Protecting the organ systems involved.
Alleviating symptoms to improve overall well being.
Finally anti-microbial herbs can be used to reduce pathogen load
The overall approach is multipronged and highly holistic as with chronic conditions where the whole organism is effected, antimicrobials alone are not enough to resolve the condition.
Certainly worth a read.
Has helped us quite a bit.
i have a question concerning NAG. could it accelerate or enhance inflammatiion (at first) ?
Because i got bursitis under my left illipsoas and i never had this before! could it have been there all the time ? and what do i do doncerning the dosage
I don’t know the answer to your question, but NAG reduces the Th17 immune response, which is important in Staphylococcus and Candida infection, so conceivably NAG might allow a flare up of such infections, causing inflammation.
so you say it induces inflammation when i actually take it to lower inflammation… i dont see the logic in that . or do you think this is only temporary?
Hello Garz. i am in same situation as you are, can i write you in private? do you have a mail adr?
Of course. You can write to me at this address. Benjalite@gmail.com
i think i didnt tolerate nag because i suspect a shellfish allergy. do you knoe if there is an alternative nag thats not from shellfish ?
thank you :)
Search my Phoenix Rising thread about NAG for “shellfish” for more info.
oh yes , i ve seen it! i already ordered swansons NAG and will give it shot. btw they have an offer for nag buy one get two: so you get 2 bottles for 15 $ !!
Also there is a study that i wanted to show you . its about rutin and neuroinflammation. dont know if you have considered taking that. i take it. and there is a gentleman in your thread that says it has eased his anxiety (along with other anti inflammatories )
I did try rutin at one point, but I did not notice any anti-anxiety benefits.
THERE IS NO CURE ! none virus has cure….we have this for life, and we have to live with it
Hi I thought I would follow up with this board… I have posted before about certain chronic symptoms that I have had similar to the ones described on this site- affecting throat, sleep, energy, skin, dehydration, joint inflammation… I can personally report improvements in all after taking Oxymatrine. I’m taking 2-3 200mg pills it’s the White Tiger brand- I get it here– https://www.acuatlanta.net/white-tiger-oxymatrine-84-count-1-gram-p-22021.html I think it’s import to let it build in your system for a few weeks to judge the effect- it doesn’t happen overnight. I’d say two weeks in I noticed improvements– esp in sleep and dealing with phlegm. In regard to my throat, which hadn’t felt “normal” in over 5 years, I now go for days without noticing discomfort- it’s much better. I’m hoping that the effect will eventually be permanent but for now if I miss a day I will notice it (feels like underlying condition is still there) I’m also still supplementing with selenium 400mcg (micrograms). I’m also taking Schizandra berry 2x200mg… not sure whether this or the oxymatrine but I do notice improvement to the skin– not as much of the fine crepe paper wrinkling– still some, but not as pronounced. I still notice strange itching though- in ears(!) temples etc. maybe a bit less. Memory and mental symptoms are a little better- no miracle- but sleep quality is much improved… which is good because I was often lying awake half the night. Haven’t noticed many side effects–very occasional indigestion. That’s it for now, special thanks to Hip for this site. P
Thanks for your post PJ.
As it happens, I am currently trying oxymatrine again, but this time using a few tricks that I hope will make it work better (previously I have tried oxymatrine several times, but without noticing much benefits; so I am hoping that these tricks will make a difference).
The tricks I am using to try to get a better response from oxymatrine are:
(1) Taking oxymatrine once every 2 hours (I am currently taking 150 mg of oxymatrine — half of a 300 mg Alternative Medicine Solutions capsule — every two hours). The half-life of oxymatrine in the blood is only 2 hours (meaning that after two hours, half of the oxymatrine will have already left your body), so in order to keep blood levels of oxymatrine up, you can take 150 mg of oxymatrine every two hours.
(2) Drinking grapefruit juice with the oxymatrine. In the body, oxymatrine is converted to matrine by the liver enzyme CYP3A4. But grapefruit juice is a potent CYP3A4 inhibitor, so this allows oxymatrine to stay around in the body for longer before it is metabolized to matrine. You can instead take grapefruit seed extract tablets instead of grapefruit juice, as grapefruit seed extract is also a good CYP3A4 inhibitor.
(3) I am taking the antiviral Epivir (lamivudine) 200 mg once daily before bed along with the oxymatrine. Dr John Chia often uses Epivir for ME/CFS patients with enterovirus infections, and he says it has some anti-enterovirus effects.
(4) I am experimentally taking 100 mg once daily of the Russian drug Arbidol (umifenovir) along with oxymatrine. Arbidol has been shown to inhibit the cytokine IL-10, and IL-10 is used by a number of viruses including coxsackievirus B4 to thwart the immune system from clearing the virus from the body. Thus if you can inhibit IL-10, this allows the immune system to better fight and clear coxsackievirus B infections. The Chinese herbal formula minor Bupleurum (Xiao Chai Hu Tang) has also been shown to inhibit IL-10, so I am taking this as well. More info on IL-10 and coxsackievirus B infections in this post.
(5) After around 4 weeks of taking oxymatrine daily, I will add the antibiotic rifampin 300mg twice daily for 7 days. Dr Chia has found that a short one week course of rifampin can boost the effects of oxymatrine, as rifampin has immunomodulatory effects.
Some Sources for Oxymatrine
Equilibrant (Dr Chia’s brand) oxymatrine tablets are available here.
Alternative Medicine Solutions oxymatrine capsules containing 300 mg of oxymatrine powder per capsule are available here: 1, 2, 3, 4, 5.
White Tiger brand oxymatrine tablets, containing 200 mg oxymatrine per tablet, can be found here: 1, 2, 3, 4 and a European source: 5.
Note that Dr Chia says oxymatrine is not recommended for people with autoimmune tendencies or seizure disorders.
Important info to read before starting the oxymatrine protocol: Dr Chia: Oxymatrine, Oxymatrine, Autoimmunity, ME/CFS and FM, Quixotic: Equilibrant, Invest in ME 2010 conference transcript, oxymatrine effects, immunomodulators info.
and what if this virus or whatever it is ….it s some autoimmune disease?
I kissed a person and my face started to burn.
Prickle. Then I got a cold sore for a week. Kissed him a few more times and the sore throat started. I have prickle burning sensation in my face when I feel tired or stressed. I think herpes virus in face and throat?
I have itchy feeling on body occasionally.
I feel exhausted.
What do you think it is? Could it be your virus?
Hip, if you could go – or recommend – anywhere in the world to have any / every (even investigative) test possible, where would you choose (to find out *exactly* what this illness is) and why?
Following on from “Desperates” question,
I was wanting to ask you to forgive my ignorance in advance, but seeing as there is great difficulty in getting the right blood tests done to identify the possibility of this illness, Would it be so costly to set up a small lab for this? i.e. purchase the machinery and hire a lab technician on a per test basis?
The reason I ask this is having attended so many auctions over the last few years , i have seen bundles and bundles of medical machinery pass through on lots gaining little bidding interest from the attendees and selling fairly cheaply.
Now i know this would be a huge ask, but i am sure given the fact that thousands of people have this illness with very little being done to assist others in being diagnosed, that if this was not a huge start up cost , then it is something i would possibly consider doing (along with others).
The other option would be to try to come to an agreement with a local lab who would agree to perform these tests and then let everyone know.
Obviously it would be with NO intention to charge people other than the absolute minimum.
Maybe there are some lab technicians / analysts who post on your blog who could help advise??? If so please do message also.
Again i ask that you forgive my ignorance on the matter.
It is quite likely that the virus I caught is coxsackievirus B4, as my lab tests showed CVB4 was an active infection.
You can be tested for chronic coxsackievirus B at ARUP Lab (see the FAQ page for info). This is the only lab I know that offers an antibody neutralization test, which is the only type of blood test sensitive enough to reliably detect chronic CVB infections.
There is a huge shortage of labs offering antibody neutralization tests, but I doubt if it would be feasible to set up your own home lab without having the required expertise in calibrating and using the equipment.
There is a new drug in the research pipeline (that I hope will be available within 5 years or so) which has potent anti-CVB4 effects, and so should be able to treat all the symptoms produced by my virus.
This anti-CVB4 is called Rega Compound A
In the mean time, it is worth trying the immunomodulator oxymatrine to combat this infection. See the Treatments Page for more info.
Hip, thank you so much for your response. (I also read a lot of your posts on P.R. and am very grateful for those as well as your advice on this website, too.)
I’m in the UK but I’ll look into those ARUP tests ASAP. In the meantime – hypothetically – if this wasn’t coxsackie for whatever reason, do you know of any labs that can be used to attempt to isolate any / every possible virus from a sample? Something like VirScan for example. (Or is technology not quite there yet?) Money isn’t an issue. TIA!
There is aperiomics.com which uses high throughput screening to test for all pathogens in one go. Cost is $500 to $1000. However, if you look at this thread of an ME/CFS patient who tried Aperiomics, you see that they found almost no viruses (and yet most people have dozens of viruses in their body).
This I think is because chronic viral infections tend to localize in specific tissues and cells (eg, enterovirus like to infect gut tissues; EBV likes to infect B-cells), so unless you get a tissue sample of the infected organ or cells, the Aperiomics is likely not going to help.
I don’t think there is any shortcut to getting individual tests of all the pathogens that are associated with the symptoms you have. If you have ME/CFS symptoms, then the pathogen tests you’d want to get are detailed in this document: https://sites.google.com/site/cfstestingandtreatmentroadmap/
I was told recently that the ARUP are no longer accepting samples from abroad (but I have not verified this). If true, that means that it becomes very difficult to test for chronic enterovirus infections, as I am not aware of any other Lab providing neutralization test for coxsackievirus B.
if you read the news ..” in 5 years or so, we ll have a new drug for cancer”…
what a big joke!!!
Hip, if you think that coxsackievirus is the main issue , you have another problem. most of babies in the world get in contact with coxsackievirus and their immune sistem get it out.
i think the main problem here is in the colon and intestins. there is your immune sistem.it sounds to me as inflammatory disease ( chron s disease, colon cancer, fungus)
go get a colonscopy! endoscopy and CT. go see a doctor! if you re not happy, see another 50 doctors!
make all tests possible!
i went in Lyme forum, there was a person for 12 years fighting LYME! and he had colon cancer! and he could treat it if he knew about. but it was too late! and he passed away 2 months ago!.
and don t take drugs without any professional advice!…
Quoting lepetit: “Hip, if you think that coxsackievirus is the main issue , you have another problem. most of babies in the world get in contact with coxsackievirus and their immune sistem get it out.”
Coxsackie A viruses are more cleared by the immune system, but Coxsackie B viruses can persist as chronic intracellular infections. Some researchers think chronic coxsackievirus B infection of the pancreas is the cause of type 1 diabetes. Chronic coxsackievirus B infection of the heart muscle is linked to heart diseases such as dilated cardiomyopathy. And chronic coxsackievirus B infections are observed in myalgic encephalomyelitis.
and some reaserches think is because Toxic Mold, Lyme, Chlamydia, you name it…
– do you have diabetes1? and Myalgic encephal?
before pointing on Coxsackievirus make usual tests as colonscopy, endoscopy, CT, MRI. This is how medicine works! and not with ” some doctors THINK!! ”
go step by step and eliminate as much as you can..
hm.. i have diabetes 1 and some heart problems..maybe a should check with this coxsackie B!…
Yes the virus triggered myalgic encephalomyelitis, as I have explained on this website.
Hip, you take Oxymatrine every 2 hours?? Jesus. Overdose!!
and Epivir use people having HIV! …low immune system this is why i recommend you making a colonscopy, to rule out colon cancer.
you should not prescribe drugs, some people could be alergic and die.
are you a doctor?
Dr John Chia, the myalgic encephalomyelitis (ME) and enterovirus expert who pioneered the oxymatrine treatment for ME, sometimes uses up to 9 capsules a day (though you have to start slowly at 1 capsule a day). More commonly he uses 6 capsules a day. Capsules are 200 to 300 mg each.
Dr Chia also find Epivir has antiviral effects against chronic enteroviruses, and is effective for 33% of ME patients.
I do not prescribe drugs; people need to get drugs through their own doctor.
ok. this is good
and how do you feel? any progress?
I tried oxymatrine several times before, but it did not help much. But this time I am combining oxymatrine with high dose vitamin D3 (10,000 IU daily), Epivir 200 mg daily and Arbidol 100 mg daily. One patient with ME found that oxymatrine did not work for him the first time, but when he tried oxymatrine again with high dose vitamin D3, he got good results. So that is why I have added vitamin D3 to my protocol.
If you take the low-dose naltrexone (LDN) immunomodulator protocol, this works much better with vitamin D3. Since oxymatrine is also an immunomodulator, perhaps vitamin D3 will also help oxymatrine to work better.
I have been on this oxymatrine protocol for 1 month now. Interestingly enough, I have more fatigue and brain fog (worsened ME symptoms). But this is a good sign, because when oxymatrine works, you often feel worse for one or two months before you get better.
hip, Epivir has effect only in combination with Retrovir
Can you provide a reference for that, with regards to its effects on enteroviruses.
i went to a drug store today, and i read the prospect for Epivir…
We are not using Epivir for its anti-retrovirus effects, but for the anti-enterovirus effects that Dr Chia believes this drug has.
I am a Chinese, this disease appeared early in Chinese for 04 years, I have come from my latest blog data http://www.hopezz.cn, there are 59 people in the study of collective China report and dialogue two doctor, now is not what good way to ease, only the people of the world unite let the world, study the disease, I think we need to set up a disease, that really scared, if you want to contact me, my Facebook is li.ting.50309
How are you? It has been years since I posted something here. Just a quick update of my health condition. Everything goes much better compared to 2010 and I may attribute these changes to the change of my life style. I quit all unhealthy food and do regular exercise (5 days a week). Last month I did some medical check and everything is normal (blood test, blood pressure, kidney, liver, heart and everything). I have to say this virus is no more my big concern and most things come back on track. There are still some symptoms like joints cracking and some acne at times. But nothing goes any worse compared to 2010.
I would like to thank you for everything you did for us and it is really of great help and inspirational.
Another important thing is that i am not contagious at all. No one near me has any similar symptoms like me after living with me for years. This could be another great improvement.
Just another issue, if anyone wanna contact me, please give them my 163 mail as I am not able to check gmail regularly in china and it may take ages to reply.
Hello Yc, it is nice to hear from you. I am pleased that you are now doing better, and that you are no longer contagious. I have heard several Chinese patients say that their symptoms get better after a few years.
Have you seen this English website about the Chinese “HIV-like” virus: https://sites.google.com/site/newhivaidslikeviruschina/
There is also a duplicate version of the Chinese “HIV-like” virus website here: https://newhivaidslikeviruschina.jottit.com
Hi YC， give me your email . I am patient from China. I want to know more about your suitation.
Hi Hip, If you have YC email, pls reply with it to me.
YC, I do not have your 163 mail address.
yc is doing better because he had mono
Where did you get that from?
I have a question for you.
In many occasions, you said that this virus, or whatever it is, is difficult to test because it’s probably hidden in tissues and not in the blood stream.
My question is if this the case how it can be transmitted through body fluids? Does that not mean that the virus is in the body fluids and in the salivary glands and thus should be easy to find/isolate?
Yes, that is correct: enteroviruses tend to infect the mucous membranes of the entire respiratory tract and the gastrointestinal tract. Dr Chia uses tissue samples of the stomach mucous membranes, and he tests those tissues for enteroviruses. In ME/CFS patients, he usually finds these stomach tissues are infected. His test is not that expensive ($250), but you need to find a gastroenterologist who will take a tissue sample by endoscope. Alternatively, the ARUP Lab blood tests I mentioned in the FAQ page can also easily detect enteroviruses.
and what if enteroviruses are everywhere ? what if there is another underllying cause?
like candida and helycobacter pil. we all have this, but when our immune system is down , they profilerate and take over your body.
i still think there is another hidden stuff here…this is why we should d o as many test as possible,
I think I’ve posted this question to the group before but cant remember I got any responses so I will post it again. Has anyone else had positive effects from the treatment from a borna virus?
Amantadine improves my mood, but that’s likely because it has an antidepressant effect, due to it increasing dopamine receptor populations, inhibiting MAO-A, increasing serotonin and increasing beta endorphin.
Jesus!!!! Hip..how many drugs have you put inside yourself??? and still you are in the same situation…
What do you think about the story below?
It does not explain very much.
Dear Hip, I’m currently looking into the hypothesis that Staphylococcus or Step in the gut are the root cause of my CFS / M.E./ “undiagnosable illness”.
I recently saw that you once found Staphylococcus aureus and Proteus Mirabilis in your gut. Is there a reason why you believe Coxsackie to be your main issue (and not the two above)? TIA!
There are no indications in the medical literature that Proteus mirabilis or Staphylococcus aureus can lead to chronic fatigue syndrome in humans; whereas the link between coxsackievirus B and ME/CFS is well known.
How about this one(?)
“Sheedy et al.  observed significantly increased proportions of D-lactic acid-producing Enterococcus and Streptococcus spp. in faecal samples of ME/CFS patients.”
Although, yes, I do suspect this to be more of an effect than a cause… Thank you again (as always) for your input.
Gut dysbiosis (= where the populations of harmful bacteria or fungi in the large intestine outweigh the populations of beneficial bacteria) is common in ME/CFS, and this dysbiosis may conceivably worsen the symptoms of ME/CFS, but as you point out, this dysbiosis is likely more of a consequence rather than a cause of ME/CFS.
has any one had any relief from this? The doctors think it’s all in my head. Please help I can beairly get out of bed everyday. And my mom thinks I’m crazy.
There is a host of interesting data out there on gut dysbiosis. It is probably very poorly understood at the moment as we are only just developing the tools to understand it.
The reasons for this lack of understanding however are not only the lack of tools.
There is also considerable complexity in the model we need to use understand these complex interacting communities of bacteria, archaea, fungi, viruses, and parasites that live in the gut and contribute to our health status. We simply have not evolved these models yet. Then to go understand how changes in the prevalence of certain species effect human health is another step of complexity again.
If we look at the tools first. Tools are available now to look at the gut microbiome at the taxa level above species level – but not yet reliably at species level. This is important because we wish to know which species are present to understand better if they are going to positively or negatively impact our health. But a pathogenic E.Coli is 99.9% the same in DNA as a pathogenic strain or a Shigella and the techniques so far cannot reliably tell them apart.
However even species level is not enough, unlike us, bacteria’s DNA is not fixed at birth. They can exchange DNA with neighbouring species in little packets called plasmids, which they can then zip into their own bodies and begin to do new things, eg become more virulent, digest different foods etc etc, so even knowing what species you have is not the full story in terms of its impact on your health.
Then there are all of the viruses, phages (viruses that specialise in infecting bacteria), fungi and other microorganisms that cohabit in the human gut in possibly even higher numbers than the bacteria, forming an inherent part of the microbiome, shaping it and contributing to its interactions with the host.
In addition, the gut community is not a homogeneous blend of food and microorganisms evenly spread through the digestive tract gently releasing their by-products into the mix and these compounds becoming gradually absorbed. No. in fact most of the key non-transient species of bacteria in the gut colonise the gut lining and compete for space there with other species. The gut lining secretes mucous at a given rate to protect its cells and the bacteria grow into the mucous at a given rate and the body works to maintain this balance. It is this balance that keeps the bacteria from invading our tissues and the populations in the gut relatively stable.
As you can see it’s a robust system able to resist permanent significant shifts due to its embedded and protected nature.
In the context of mysterious undiagnosed illness there seems to be significant scope for a role for the gut microbiome or an imbalance thereof.
What we do know:
Around 70% of the human immune system resides in the tissues lining the gut.
More and more evidence is building that the gut organisms are responsible for tuning the immune system to adapt to its environment correctly and that imbalances contribute to many chronic conditions from asthma, to eczema, to epilepsy and Alzheimer’s.
Immune dysregulation is a known part of many chronic conditions – all auto-immune conditions and for instance the syndrome known as CFS or ME.
By the way – all of these conditions are on the increase in western society.
Consider also that there are about as many neurons in the gut lining as there are in a cat’s brain – and this “2nd brain” is in constant communication with the human brain. Certainly, there is some scope for systemic symptoms to be driven via that route, if the gut system is disrupted.
“This is all very well…” I hear you say …”but how would can the gut be the root cause of an illness that comes on suddenly or spreads from person to person”
Here, and I think it’s becoming increasingly clear for many chronic illnesses, we have to consider that the model of one disease, with one set of symptoms, caused by one pathogen, as proposed by Pasteur all that time ago, however attractive that is, may not be the best model to look at chronic disease today with.
For instance, what if the thing causing the illness to persist is different to the thing that originally triggered it. That triggering thing may be gone or at least under control by the immune system, but the illness is caused to persist by a second condition. That could be one caused by the first but has become stuck.
For a slightly more specific example. Prolonged illness, often with fatigue and other lingering symptoms, after various viral infections are well noted in the literature. And yet they are poorly understood. Eg after EBV infection
It would be quite plausible that a viral infection could cause the human body to lose control of the balance detailed in the above paragraphs and that once knocked severely out of balance this condition alone could cause their illness to persist and even develop further, due to lack of proper nutrient absorption, activation and dysregulation of the immune system, endocrine disruption from the microbial by-products etc etc. yet blood tests for pathogens would keep coming back negative
In summary a single pathogen model, especially in chronic illness, may lead to inappropriate interventions and a poor outcome. The world just isn’t often that simple.
Food for thought?
Research into the microbiome is a fashionable subject at the moment, but it remains to be seen whether any solid cause and effect links to disease will be found. However, the link between various viral and bacterial infections in the body tissues (as opposed to the gut) is much stronger (some info here), and I am inclined to think that the latter are the main causes of pathogen-induced diseases.
In the case of ME/CFS, patients have been put into complete remission for over a year using interferon, which fights enterovirus infections. That to me is strong evidence that a single viral infection can cause ME/CFS. Unfortunately, there are reasons why you cannot use interferon indefinitely.
I understand your position, and you may very well be right. Certainly, neither one of us will prove the other wrong or right at this stage, as there is simply not enough is known. That is in any case not my objective,
However, I do encourage you to consider other possible mechanisms for your illness, to have the best possible chance to find treatment approaches that help.
On CFS – it may be worth noting that remission has also been achieved in many cases by fecal transplant pointing to the gut microbiota having a causal (or at least perpetuating role) in that illness.
example study below ( there are quite a few others).
This is an Australian Fecal Transplant study that had a 58-70% response rate for ME/CFS!!!
(published oct 2012)
Bacteriotherapy in Chronic Fatigue Syndrome (CFS): A Retrospective Review
Conclusion: Bacteriotherapy achieves initial success rate of 70% in CFS and 58% sustained response. This result is favourable when compared with current therapies where fewer than 10% recover fully and a further 10%-20% worsen during follow-up1. Given that manipulation of the colonic microbiota improved CFS symptoms, bacteriotherapy for CFS warrants further investigation. Furthermore, the pathophysiology of CFS could be in part explained by enteric derived toxin-releasing bacteria capable of producing systemic effects.
I do agree Garz that we need to consider and explore as many angles as possible, and I have certainly tried lots of gut-targeted treatments (probiotics, prebiotics, antibiotics, leaky gut protocols, etc). In particular, prebiotics such as inulin helped reduce my anxiety symptoms quite a bit, indicating the link between the gut and the brain. The yeast probiotic Saccharomyces boulardii was also helpful for me: it increase secretory IgA in the intestines.
I am familiar with that Australian fecal transplant study by Professor Borody, and would like to try a fecal transplant myself. However, I recently learnt that not all fecal transplant donors are equal: some people, called superdonors, possess a microbiome ecosystem that appears to produce much better results in the recipients. Borody himself is aware of these fecal superdonors, and that might explain why he had such a high success rate in treating ME/CFS with fecal transplant, whereas on the ME/CFS forums I have not seen may patients improve from fecal transplant.
Dr Kenny De Meirleir’s tested out fecal transplant for ME/CFS, and found this treatment does help, but its benefits only last for around 10 weeks (after which he says the bad bacteria would return).
So if I were to do a fecal transplant, I would first try to find one of these superdonors, because hopefully that will produce more permanent results. More info about superdonors is give in this post.
Thanks for the link – will check that out.
Yes. I think its clear that when the etiology is complex or unknown, but there is an indication that an intervention may make a big difference, then a therapeutic trial, assuming the is little chance of doing any lasting harm becomes a valid choice.
I have also read that many CFS/ME patients who go into remission after FMT relapse again later, which is interesting. But as in many things, your mileage may differ and, as you say, there may be some donors that are better than others. I know the Taylor clinic in the UK – keeps a rigorously tested and cultivated list of donors on its books that they encourage to eat a certain way to improve the microbiota.
There are sure to be many confounding factors also. for instance what was the diet and lifestyle of people in the cohorts like. it may well be that the host’s diet was a key contributor to their microbiota getting out of whack in the first instance. so even given a new colonization with a near perfect microbiota from a good donor, if they return to their old lifestyle and diet perhaps we should not be so surprised if the effects don’t last (again likely multifactorial) We are all a product of our environment after all.
All the best
I know one patient who went to the Taylor Clinic, spent £4000, but got no benefits. What I would like to see is the success rate figures from the Taylor Clinic for treating ME/CFS with fecal transplants. The fact that they don’t publish them suggests that the success rate is poor (publishing poor results will put off clients, whereas publishing good results attracts clients). Whenever I see any ME/CFS treatment, the first thing I want to know is the success rate.
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