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Is it a new disease or its CFS ?

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
I'd say the average incubation period of my virus is around the 12 to 24 hour mark, but once I noted it was as fast as 8 hours. (On that occasion, I saw a friend that I had not seen for many months; we met for dinner at around 7 pm, and spent several hours at the table. He then went home, but at 3 am that night he awoke and started vomiting, with diarrhea; with all the classic symptoms of my virus appearing in the hours, days, weeks and months to follow. It was not food poisoning, as all of us at the table ate the same, and everyone else was fine.So it was very clear that the virus I have can incubate in an extremely short time frame.) But its typical incubation period time is 12 to 24 hours.
Some people have a genetic resistance to infection by the common strain of Norovirus & others don't. 23andMe tests for this snp rs601338

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Search&db=pubmed&term=17537929

I am interested in Norovirus as I was hospitalised after being sick for about 3 weeks with vomiting & diarrhoea. The hospital consultant Physician said I "probably had Norovirus". I see this as the beginning of a gradual decline in my health.
 

Hip

Senior Member
Messages
17,824
I am interested in Norovirus as I was hospitalised after being sick for about 3 weeks with vomiting & diarrhoea. The hospital consultant Physician said I "probably had Norovirus". I see this as the beginning of a gradual decline in my health.
I know that norovirus infection has been shown to precipitate Crohn's disease (in a murine model only, not a human model; see here); but apart from that, I have not found any chronic disease that norovirus has been linked to, even though I searched a lot for norovirus—disease links.

Norovirus is definitely is not linked to ME/CFS, so this, among other reasons, is why I ruled norovirus out as a candidate for my virus, even though by its incubation period, norovirus would be a good candidate for my virus.
 

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
I know that norovirus infection has been shown to precipitate Crohn's disease (in a murine model only, not a human model; see here); but apart from that, I have not found any chronic disease that norovirus has been linked to, even though I searched a lot for norovirus—disease links.

Norovirus is definitely is not linked to ME/CFS, so this, among other reasons, is why I ruled norovirus out as a candidate for my virus, even though by its incubation period, norovirus would be a good candidate for my virus.

I have 3 markers showing increased risk for Crohn's, and 9 that decrease my risk. (Overall I have a slightly increased risk) On the other hand I have a variant of IL-10 that leads to about 1/3 lower levels of IL-10 being produced. IL-10 is an important part of the immune system's disease-fighting response. The variant increases my risk of the autoimmune disease Behcet's.

"differing variants of IL-10 having (also) been associated with other autoimmune and autoinflammatory diseases such as Ulcerative Colitis, Type 1 Diabetes, Systemic Lupus Erythematosis and severe juvenile Rheumatoid Arthritis."

http://www.nih.gov/news/health/jul2010/niams-12.htm
 

Hip

Senior Member
Messages
17,824
I am getting Psoriasis now. Any possible solutions?

I got a large red patch on my skin on my chest (called a heliotrope rash) from my virus, and I found that a concentrated, saturated solution of Epson salts (magnesium sulfate) dissolved in water, and applied once daily to the red patch of skin on my body, and allowed to dry in, worked very well in eliminating this red patch.

Using topical Epson salts solution applied to all the skin, all over the body, is also an excellent way of getting a high dose of transdermal magnesium, and this has proven beneficial as a ME/CFS treatment. Search the forums for more on using topical Epson salts all over the body. You can also use magnesium chloride on the skin (this is often called "magnesium oil"), but magnesium chloride stings slightly, whereas Epson salts does not.
 

patient.journey

Senior Member
Messages
443
I am getting Psoriasis now. Any possible solutions?

Am not really sure what is happening, no one is listening when i ask to email doctors and talk about our situation like they prefer to stay sick or something !!

When we just throw every thing on science and doctors and i can see that people here are not doing enough or at least what they can do to help their selves !!

If you want to help your self i can give you some emails so you can talk to doctors and let them know we are here !
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I am curious too.

Do you have a link to somewhere you have listed your symptoms, taniaaust? I know you have explained them before, but my memory is falling to bits these days. I am also not aware of what Dr Bell and Dr Cheney's type of patients are like. In fact I did not realize these docs had a certain patient type. If you know of a summary of their patients' symptoms, I'd love to see it.

Ive been looking for my full symptom list of 92 symptoms which should be at this site somewhere.. havent been able to find it. I probably had them listed in my introduction post at this site.. (cant search here thou from what I can see for ones oldest posts???). I'll post the link when I managed to find it

Both Bell and Cheney were doctors who handled the ones from two major different outbreaks so one can say they got a lot of their info from treating a certain ME patient cluster (thou of cause also see and have seen others). By refering to their patients.. I was refering to patients from those clusters which they treated.

I dont know where there is a good summary of their patients individual symptoms but from talking to their patients over the years.. there was some more uncommon symptoms I had which I hadnt heard mentioned before, which I found were in some of their patients.. and for the first time I was finding others who had the more unusual symptoms which one dont often hear about eg Dr David bell.. was finding orthostatic hypertension in some of his patients..something I havent heard any other ME/CFS specialist speak about.. A patient of Cheneys from Lake Tahoe, told me that Cheney found many of his original Lake Tahoe patients have issues with sugar. That patient of Cheneys was on exactly the same kind of diet as far as low carb to a crazy amount that Ive found I need to be on. (I still have a copy of mine and that patients discussion on what Cheney was finding).

There is also info online on the progression of the disease .. how Cheney says it goes.. it does describe the pattern my illness has followed in a way. http://www.dfwcfids.org/medical/cheney/heart04.part1b.htm I had muscle issues and FM.. before the disease ME went to my gut. My food intollerances came in many years into the illness. (thou I got liver issue in first year of the illness and my brain.. was going in the first year of this illness). But my Big brain issues didnt happen till later in the illness... My brain did follow the pattern he says in the way it gets worst in his disease progression.

In the brain, there's a devastating effect with respect to liver/gut dysfunction—it can quickly toxify the brain. That's perceived initially as, "I only have problems when I have to use my brain." Then it becomes a problem even when you don't use your brain that much
.. and for me the "permanent" brain issue.. not just after exertion.. kicked in after the gut isses etc..

You have all kinds of cognitive complaints like memory disturbance and processing speed. Then you begin to get central brain structures that can destabilize you psychiatrically. You can get hypothalamic structures that begin to destabilize you from an autonomic nervous system perspective and/or neuroendocrine response defects. [neuroendocrine: the interaction between the nervous system and the hormones of the endocrine glands]

The brain and the heart probably get hit about the same time, but patients usually notice their brain being affected much earlier than their heart. That's because heart muscle cells have the greatest mitochondrial content of any tissue in the body. Thus, when mitochondria are impaired, the heart muscle has the greatest reserve and is the least vulnerable

and that is exactly what happened to me and the order it went in.. Last was the heart issues which I started to get..

The effect on the heart has an "a" part and a "b" part. "The initial manifestation of microcirculatory impairment of the heart is arrhythmia. What kind? You name it, you've got it."

That is exactly what did happen to me next... I also at that point developed one of the flappy valve things Ive heard he speak about (I didnt have it before that).

The symptoms my virus produced in me (and to a lesser extent, in 30 other people that caught it) I listed on my website here.


Thanks I'll check that out. My illness started out with very virally symptoms .. for the first year every time I crashed.. doctors kept on telling me "you must have a virus".. swollen glands, high temps, muscle aches. lethargy, extremely sore throat etc .. after that stage.. I crashed bad and then had hypersomina and extreme weakness added to that mix (neurological stuff came much later). My throat looked like your pics.. maybe redder..with all white discharge.

edit.. Im looking at your symptoms now.. not a the begginning but much later.. I suddenly developed gum disease.. and at another stage my gums suddenly (Iike overnight) went all soft and squishy..and my teeth were wobbling in them.. it scared me.. I thought I was about to loose all my teeth.... just as weirdly..after a few weeks or a month.. my gums went back to being hard.

I have no wrinkling of my skin.. " Subtle Loss of Hearing Acuity in identifying sounds." I did develop that for a while... and was diagnosed as having "central auditory processing disorder" due to it. ..the hearing issues arent due to the ears but the brain.

My mental health wasnt majorly affected till I devleoped insulin issues.. to carbs, much later in the illness.. Before that thou I developed severe premenstral dysphoric disorder.

pins and needles or skin crawling sensation began to appear, first in my legs, but quickly spreading to all my body. There were constant sharp prickling sensations everywhere, which felt like they were located just beneath my skin.

ahhh I had that very badly.. for over a year or more.. I got it about 7 years? into the illness thou.. it seems you got a lot of the symptoms far faster then I did. It was like having ants crawling all over me and being bitten by them.

Next, I noticed my vision began to deteriorate. So I had my eyes tested; there was nothing wrong with my eyes or my ophthalmic prescription

Mine too.. the eye specialist said i needed glasses when he tested me.. a year later I went back to get them and retested only to find my sight had come good (I really think it was all the vitamins I took!! He said he never spontanously had a persons eyes come good before). My eyes sight thou have gone again some 6 years later..

wow electic shocks.. my hair almost set fire from a HUGE spark which jumped from my finger and got caught in my hair the spark jumped almost an arm length.. it was then actually burning hot in my hair (almost burnt my head), i ended up banging my head with hand to put it out. I never related that incident to do with any ME or viral thing before. Now that Im thinking about it, I think I remember a CFS study in which they found our skin conducts elecrticity differently to normal.

Thou we both do have so many of the same symptoms and could have the same thing.. yours sounds more like the chinese thing with your skin..
 

Hip

Senior Member
Messages
17,824
I have noticed that the "crêpe paper" skin wrinkling symptom which my virus produces only tends to appear in people older than around 30 or so. Lots of people caught my virus, and all those in their thirties and later got the crêpe paper skin wrinkling symptom, but kids, teenagers and those in their twenties did not.

I am guessing that the skin wrinkling is caused by high levels of elastin-degrading enzymes, such as neutrophil elastase or MMP-9. Both these enzymes are often found high in ME/CFS.


I think the electric shocks may come from the fact that Coxsackie B virus alters the ion currents going in and out of cells (ref: here). I did not have this static electricity symptom myself, but one person that I think had the same virus as me constantly got electric shocks so powerful that they would sometimes damage or destroy electronic equipment like TV remote controls (the integrated circuits in these sort of electronic devices can easily be destroyed through static electricity).

I don't think this static electricity came from friction when walking on synthetic nylon carpets, which is the usual source of static (and for women, wearing nylon skirts). I questioned this person with electric shocks quite a bit, and asked her if the static charge buildup may have been due to friction from synthetic clothing fabrics or synthetic carpets, but she said not.

So I think this static electric charge is actually generated from within the person's own body, probably through the virally altered cellular ion channel electric currents. It is as if the person has become a mini electric eel!

Channelopathy — malfunction of the ion channels — may be a driving factor in ME/CFS.
 

patient.journey

Senior Member
Messages
443
Hi Omar,
Any update from researchers?

Unfortunately no new updates but some data are found as you can find in this link
http://file.ynet.com/3/1104/15/5864217.PDF

And there is this interesting information in this part of it
Wu Zunyou, director of the
CDC’s AIDS Prevention Department, said after the ministry’s
Monday announcement that medical tests, especially for such complicated diseases, are not absolute.
In an earlier yearlong blood test
conducted by the Shanghai Institute
of Virology last January, ve people
in the group were found to have
same unknown virus, Wu said.
“What I can say is that it is definitely not the virus that we know
to cause AIDS. The virus’ sequence
from the ve blood samples is similar, but we need more time to study
exactly what it is,” he said.

In this article too i found something that couple of patient told me about and its using HIV drugs and i think that you even told me that some one tried it and he got better or cured so i need you to confirm this !!

http://www.theepochtimes.com/n2/chi...s-aids-like-disease-is-in-the-head-54781.html

He said that someone with insider information told him, out of sympathy, that the disease is a variation of AIDS that the authorities don’t want to acknowledge now. “He has been trying to convince me to buy AIDS drugs and claims some people have cured their disease by taking the drugs,”
 
Messages
25
Dear Omar,
First link is not working. If you have this PDF file kindly email to ravikumarsu@yahoo.com . My friend is still taking Atripla (hiv medicine) . Some of the symptoms got disappeared , but not cured. We might get CFS or AIDs (only god knows)
 

patient.journey

Senior Member
Messages
443
Dear Omar,
First link is not working. If you have this PDF file kindly email to ravikumarsu@yahoo.com . My friend is still taking Atripla (hiv medicine) . Some of the symptoms got disappeared , but not cured. We might get CFS or AIDs (only god knows)


If you have a Skype that would be great so we could discuss some stuff

Some ideas of patient from different countries and its mostly there doctors opinions :

1) A new virus

2) A known virus that became more aggressive and they are talking about Herpes viruses.

3) A known Bacterial infection that became super bug, Staph and other bacterial infection were mentioned.

4) Its something related to HIV, this virus working mechanism is still not known yet and every thing about it is still under study after 30 years from they consider it the AIDS cause, this virus was never isolated by it self from any patient beside after reading some papers and if we put the denialism ideas away and think of the co factors that became under more study we could see soon they could figure that this virus have so many components and that you can have some of those microbes and develop AIDS symptoms without needing the HIV virus and as example of co factors ( HHV6 and Mycoplasma fermentans that is 80% there with HIV virus )

5) It could be a similar virus to HIV that share some proteins with it and this remind me with every study of Retro viral in CFS/ME patient as when they always found something they talked about similarities of sequencing with HIV or HTLV !!
 
Messages
25
Sorry , I don't have Skype. But mycoplasma and bacteria infections can be effectively treatable with antibiotics. As per hip incubation period is minimum 1 week, so we can reject them. It could be a variation of hiv virus or a new man made virus. Anyway your findings are correct.
 

patient.journey

Senior Member
Messages
443
Sorry , I don't have Skype. But mycoplasma and bacteria infections can be effectively treatable with antibiotics. As per hip incubation period is minimum 1 week, so we can reject them. It could be a variation of hiv virus or a new man made virus. Anyway your findings are correct.

No problem try to be update us more about your situation, the way you are handling this problem and your doctors opinion so we can share data and try to make a user in the skype soon, its will be much easier there .

Not all kind of Mycoplasma infections have the 7 days incubation period as the genital types doesn't need more than 2-3 days to start making symptoms, but that doesn't mean its our bug its one of ideas that should be exclude !
 
Messages
76
Location
India / singapore
That was not my report ...but I was in a similar situation . Now somewhat recovered after taking raw garlics . But, I dunno the long term consequences of this disease. After searching a lot ..... I think it spread by sweat/vaginal fluids/saliva . And its either of the three....... a type of Mycoplasma/drug resistant streptococcus bacteria/ aggressive EBV(herpes4)............anyone tested for these 3 in this forum or considering testing for it ??????