My Million Dollar Question: Virus or Immune Malfunction?

[PhoenixBurger]

@wastwater @w john martin - Im confused. Why are you entertaining simian CMV versus regular CMV? Is there something about simian that makes my symptoms more explanatory? Or something I said that might indicate Simian over human?

I've just retested CMV igm today to see if I am currently reactivated. Will be interesting to see.

 

[w john martin]

Dear Phoenix Burger and Wastwater,
The discovery of stealth adapted SCMV in CFS patients posed several major problems for public health authorities. First, it implied a very likely origin from monkeys used to produce polio vaccines; with the added suggestion that contaminated polio vaccines may have led to the formation of HIV, the AIDS virus. Second, it raised the possibility of horizontal, as well as transplacental transmission of infection. Third, the apparent lack of an inflammatory response opened the possibility that stealth adapted viruses were involved in a wider range of neuropsychiatric and other illnesses.
All of these issues have been confirmed, yet there is still an unwillingness and indifference of public health officials to engage in meaningful research. A better understanding of the research by the CFS community might be useful. One place to begin is the 1994 article entitled "Cytomegalovirus-related sequences in an atypical cytopathic virus repeatedly isolated from a patient with chronic fatigue syndrome." Am. J. Path. 145: 440-451.” The full text is available online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1887390/pdf/amjpathol00056-0208.pdf
A more recent article is at http://medcraveonline.com/JHVRV/JHVRV-01-00020.pdf I hope this helps.

 

[PhoenixBurger]

Hmm. That didn't answer my question but ok.

Just wondering why the topic was introduced to this thread specifically.

@Valentijn @SOC @heapsreal @Hip

May I ask you all this? Aside from that lactic acid disorder, have you ever heard of a disorder that results in systemic inflammation which increases gradually (over a period of a week) to the point of significant symptoms (skin, lung, muscular) if the individual does not take steps to reduce their inflammation? This is no doubt what my condition comprises of.

It just bewilders me that if I do not exercise for a week, I am in a seriously bad place. My ability to sleep begins to falter because my cortisol system seems to change. I get painful aching glands in my groin and armpits. My muscles may ache, and more recently my lungs will grow more and more inflamed. Dry cough and irritation. Cuts on my skin do not heal for weeks, and I get numerous clogged glands of various types.

Its so weird to me. And here's why:

If I simply exercise, the whole system including all symptoms seems to just ... calm down.

Painful glands in armpits and groin seem to drain and fade away within 1-3 days. With vigorous aerobic exercise and deep heavy breathing, my lungs will seem to just "calm down" as well, and that inflamed feeling will fade away too. Sleep improves because systemic inflammation levels have now been forcibly calmed by exercise. Cuts heal, glands drain and stop being 'red'. Healing ensues.

Exercise is the number 1 way to reduce systemic inflammation, and calm inflammatory immune activity. Its been proven numerous times.

I know I have a recent CMV infection. Well sort of recent. Three years ago this all started. Yet I still have high NK Cell activity, and high CD8. This is consistent with CMV disease. Or Chronic CMV reactivation. And CMV is well known to cause inflammation in tissues throughout the body. But not in people with normal immune systems.

I have come to the conclusion that I absolutely *must* exercise and get rest (and avoid gluten etc) to keep my inflammation levels down. If I do this, all is well. If I don't, within a week, I wake up feeling like my whole body is seriously under attack.

I simply have never heard of such a "disease" before and wonder if it reminds you of anything? I would not say its a lactic acid buildup. That wouldn't explain lung, gut, and skin inflammation. This seems to be an immune inflammatory condition. Which brings me back to question # 1. Is it inflammatory because its fighting something important, or because its gone haywire?

Thanks again.

 

[Valentijn]

@PhoenixBurger - Reflex Neurovascular Dystrophy is still my best (and only) guess.

 

[wastwater]

Im thinking of SCMV because im CMV negative,I also wondered if SCMV may displace CMV.
I did read a bit on Autism and CMV in the womb as being a candidate cause for Autism
I was also born with signs that may of suggested congenital cytomegalovirus but no CMV,namely red eye,rashes and deafness was hospitalised around 18 months with signs of meningitis but wasn't meningitis,I wondered if it may of been Acute Disseminated Encephalomyelitis
Im also interested in cyclic AMP (cAMP) just because its mentioned on the malacards page about my rare genetic disorder Axenfeld Riegers.This genetic condition is often seen with a lot of autism and fatigue states that you might not know about if you didn't have it
The genetic mutations probarbly happened around 70 years ago,maybe earlier.

 

[wastwater]

I'm going to get the book called,The Stealth Virus,by Prof Griffiths

 

[wastwater]

Seems like we have the ghost of CMV or the memory of CMV perhaps somewhere in our paternal past,maybe its a bit like homeopathy,im not really being serious but it has made me think.

 

[cman89]

Thanks @SOC - yeah this is such a mystery. And I often don't know if I belong here. But you guys are without a doubt the most intelligent, informed people in medicine I've ever interacted with. And that includes all my doctors. They may be smarter, but they rarely communicate or invest much time. Which renders their knowledge somewhat useless to me.

Rey basically gave me 1 liners, and left me to figure out the rest. I did not feel like I had much clear communication from her, and that may be because she wasn't sure what to make of the numbers she saw. She suggested Valcyte to address the CMV, but I was just finished taking AZT and other antivirals associated with cancer risk, which are what got me in this situation in the first place (Post exposure prophylaxis). So the last thing I needed to be doing was taking another drug associated with Cancer. Yes I know - most people here feel its not an issue.

Plus, with a negative CMV PCR twice, I wasn't sure what to think. I have researched the possibility of false negatives with CMV PCR and its simply unheard-of. It doesnt exist. You definitely hear about false negatives with other tests. But for example, HIV PCR is never wrong. And nobody could confirm that CMV PCR is ever wrong either. Especially in the presence of a high IGM (current/acute/active). They rely on it heavily for pregnant women as well.

More importantly, doctor after doctor after doctor told me CMV does not cause all these problems I was having. (months of neuropathy, neuromuscular symptoms, nerve pain, severe fatigue, chills, crawling sensations, spine pain, migraines). Most of this resolved with exercise and eliminating gluten (!!!).

Explain that one to me.

Today my picture is a bit different. I get inflammatory symptoms all over when I am run down. Skin issues. Mucoseles. Chalazions. Inflamed lungs. GERD. Lupus-like mask (very mild, derm said it was rosacea) etc. Inflamed armpits, groin, and neck in the glands area, but I don't feel any large swollen glands. It just aches and burns.

Its all so non-specific that it reminds me of people who ultimately ended up with autoimmune diagnoses.

The most upsetting element is this impossible-to-describe sensation. If I do not exercise, after several days, something begins to "build up" inside me and my whole body feels like it is getting very very sick. I can't even describe the sensation. I get inflamed glands (but they dont swell) ... inflamed armpits, inflamed groin tendons (again no ability to feel swollen glands) inflamed lungs .... fatigue. Skin issues.

But I get worse and worse ... until .... I go to the gym and lift weights. ?!? It doesn't make any sense. I must flex my muscles, and I must run on the treadmill and get my lungs inhaling deep ... then this inflammatory monster just "drops off" and becomes subdued. For at least 3-4 days. Then it starts to creep back.

As long as I get good sleep, consistently work out, and avoid gluten, sugar, and stimulants, I can bring myself almost to the point of 100% recovery.

I guess its great that im being forced to eat right and exercise, but it really scares me that whatever this is comes on like a freight train if I stop. My continued increased lymphs and WBC is also a concern as it seems to be steadily rising. Just now past the top limit. Nothing crazy.

I don't know. I can't even communicate to a doctor whats wrong in the 30 second "speed recap" im forced to do when I first see a doctor. Im sure I sound like a complete idiot, and im sure they think im a hypochondriac. But something inside me is happening. Maybe its just the CMV. I know that virus saturates every cell in your body and infects it .... but man this has been 3 years, and whole-body insanity.

So, you do in fact tolerate exercise to a certain extent?

 

[wastwater]

post removed due to error

 

[wastwater]

I see there is quite a bit of interest at present in endothelial function,and I saw a loose conection to cytomegalovirus.
https://en.wikipedia.org/wiki/Endotheliitis
http://www.malacards.org/card/endotheliitis
And separately phantom CMV
http://www.researchgate.net/profile...what_to_do/links/004635241f53eaf770000000.pdf

 

[wastwater]

A bit more on autism/polyomavirus
http://www.tandfonline.com/doi/abs/10.3109/13550281003685839
and simian cmv
http://www.researchgate.net/profile...homologues/links/00b7d5388d18a448ee000000.pdf

 

[Stretched]

Dear Phoenix Burger and Wastwater,
The discovery of stealth adapted SCMV in CFS patients posed several major problems for public health authorities. First, it implied a very likely origin from monkeys used to produce polio vaccines; with the added suggestion that contaminated polio vaccines may have led to the formation of HIV, the AIDS virus. Second, it raised the possibility of horizontal, as well as transplacental transmission of infection. Third, the apparent lack of an inflammatory response opened the possibility that stealth adapted viruses were involved in a wider range of neuropsychiatric and other illnesses.
All of these issues have been confirmed, yet there is still an unwillingness and indifference of public health officials to engage in meaningful research. A better understanding of the research by the CFS community might be useful. One place to begin is the 1994 article entitled "Cytomegalovirus-related sequences in an atypical cytopathic virus repeatedly isolated from a patient with chronic fatigue syndrome." Am. J. Path. 145: 440-451.” The full text is available online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1887390/pdf/amjpathol00056-0208.pdf
A more recent article is at http://medcraveonline.com/JHVRV/JHVRV-01-00020.pdf I hope this helps.

I read it when posted and am late to acknowledge, but nice job on the Medcrave article!

 

[Stretched]

Seems like we have the ghost of CMV or the memory of CMV perhaps somewhere in our paternal past,maybe its a bit like homeopathy,im not really being serious but it has made me think.

Your post prompted me to review my early blood testing, circa 1991, when my symptoms were progressive and
cycling. I found something interesting which I had to dismiss... .

I went to various MD specialists on my own for testing pursuant to following the early research after Lake Tahoe, since I had been there in late 1985, then CFS onset.

Nothing of note was found to explain my CFS symptoms at the time, except for one extra-effort visit per chance to an I.D. specialist, (MD, Harvard, fwiw).

He found a then active CMV but said it really could not be treated. My then lead PCP agreed, saying anti-virals would make me sicker. I researched it and had to acquiesce though I followed CMV finding for a long time (including the 1994 aricle ref above by w John Martin).

Now, with still no markers, including no active CMV per viral titer testing (???), I ponder the degree to which the CMV
may have or not played a significance in the progressive demise re my own ME/CFS. IOW, had I vigorously hit it then with whatever was available (then, seemingly severe) might it have stopped whatever bio-interplay it may have caused?

Any thoughts appreciated, especially with regards to potential actions in the present, palliative or otherwise;
or is this a 'would'a could'a' retrospective?

 

[wastwater]

I wonder if I may of had cryptococcal meningitis

 

[valentinelynx]

Thanks @SOC - yeah this is such a mystery. And I often don't know if I belong here. But you guys are without a doubt the most intelligent, informed people in medicine I've ever interacted with. And that includes all my doctors. They may be smarter, but they rarely communicate or invest much time. Which renders their knowledge somewhat useless to me.

Rey basically gave me 1 liners, and left me to figure out the rest. I did not feel like I had much clear communication from her, and that may be because she wasn't sure what to make of the numbers she saw. She suggested Valcyte to address the CMV, but I was just finished taking AZT and other antivirals associated with cancer risk, which are what got me in this situation in the first place (Post exposure prophylaxis). So the last thing I needed to be doing was taking another drug associated with Cancer. Yes I know - most people here feel its not an issue.

Plus, with a negative CMV PCR twice, I wasn't sure what to think. I have researched the possibility of false negatives with CMV PCR and its simply unheard-of. It doesnt exist. You definitely hear about false negatives with other tests. But for example, HIV PCR is never wrong. And nobody could confirm that CMV PCR is ever wrong either. Especially in the presence of a high IGM (current/acute/active). They rely on it heavily for pregnant women as well.

More importantly, doctor after doctor after doctor told me CMV does not cause all these problems I was having. (months of neuropathy, neuromuscular symptoms, nerve pain, severe fatigue, chills, crawling sensations, spine pain, migraines). Most of this resolved with exercise and eliminating gluten (!!!).

Explain that one to me.

Today my picture is a bit different. I get inflammatory symptoms all over when I am run down. Skin issues. Mucoseles. Chalazions. Inflamed lungs. GERD. Lupus-like mask (very mild, derm said it was rosacea) etc. Inflamed armpits, groin, and neck in the glands area, but I don't feel any large swollen glands. It just aches and burns.

Its all so non-specific that it reminds me of people who ultimately ended up with autoimmune diagnoses.

The most upsetting element is this impossible-to-describe sensation. If I do not exercise, after several days, something begins to "build up" inside me and my whole body feels like it is getting very very sick. I can't even describe the sensation. I get inflamed glands (but they dont swell) ... inflamed armpits, inflamed groin tendons (again no ability to feel swollen glands) inflamed lungs .... fatigue. Skin issues.

But I get worse and worse ... until .... I go to the gym and lift weights. ?!? It doesn't make any sense. I must flex my muscles, and I must run on the treadmill and get my lungs inhaling deep ... then this inflammatory monster just "drops off" and becomes subdued. For at least 3-4 days. Then it starts to creep back.

As long as I get good sleep, consistently work out, and avoid gluten, sugar, and stimulants, I can bring myself almost to the point of 100% recovery.

I guess its great that im being forced to eat right and exercise, but it really scares me that whatever this is comes on like a freight train if I stop. My continued increased lymphs and WBC is also a concern as it seems to be steadily rising. Just now past the top limit. Nothing crazy.

I don't know. I can't even communicate to a doctor whats wrong in the 30 second "speed recap" im forced to do when I first see a doctor. Im sure I sound like a complete idiot, and im sure they think im a hypochondriac. But something inside me is happening. Maybe its just the CMV. I know that virus saturates every cell in your body and infects it .... but man this has been 3 years, and whole-body insanity.

Just a quick, not well though out thought, but have you considered/looked into Mast Cell Activation Syndrome? Something about your description makes me suspect this.

 

[wastwater]

I was looking at sv40 again and wondering how it is meant to cause cancer,I think it might do it by targeting tumour suppression regions,like 13q14 for myself.
maybe another less effective pathway is then utilised.
P53 seems to be important

 

[patolos]

Immune function /sort of malfunction, I think some part of the circulation reacts to eating (most)foods(or any substances) foreign to Africa treating it as a potential threat hence steady progressing circulation condition leading to progressing fatigue etc..

I think cfs is a circulation condition largely and dr bergs theory sounded right although seems to have since been shown to not be it but sounded close or on the right track to knowing what is going on.

 

[cman89]

I am personally convinced that the cause of ME
be a virus (or other pathogen) unknown (as the dr. W. John Martin), this virus (in some cases) can always be active and then infect.
For twelve years, in some forums-cfs Italian, I speak of this belief;
everything is the result of my experience of 30 years of ME / CFS ......; after the first few years, slowly, I realized (with anguish) that some people closest (family members, relatives, friends, partners) showed the same symptoms, there is one person that I met in 2005 (20 years after the onset of ME in my body) and later
had symptoms of the disease .....

we do not have a autoimmunity but a germ unknown that can live
inside our body

Questo è un sospetto molto comune con me. La sua non è l'unica causa , ma molti pazienti sospetta infezione virale di base e / o problemi immunitari .

 

[w john martin]

There are barriers to acknowledging the role of stealth adapted viruses in CFS:
1. Public Health authorities are challenged with evidence of an African green monkey simian cytomegalovirus (SCMV) origin of some of these viruses.
2. Most clinicians treating CFS patients are not trained in virology and are not comfortable in especially explaining atypical and structurally modified viruses.
3. Patients do not want the added responsibility of being potentially infectious to others.
4. Nor do disability insurance companies want to raise the issue of a contagious illness.
5. Even immunologists are wary that stealth adaptation can undermine the assumption that the cellular immune system is the only major defense mechanism against viruses.
Acceptance of stealth adapted viruses probably needs to wait till effective therapeutic approaches become available. These will likely come through patient education regarding self-therapy, rather than through the existing establishments. Progress might come sooner if the NIH or CDC pursues the possibility that Zika virus is more likely to cross the placenta and cause fetal damage when the mother is co-infected with a stealth adapted virus.

 

[wastwater]

Does sv40 affect 13q14
I tie in specifically as I most likely have riegers syndrome at 13q14