Is it a new disease or its CFS ?

[ashler]

Initial symptoms? You mean you don't have those symptoms anymore? Because my sicca symptoms are chronic for nearly three years now and I still don't have any treatment plus I feel dryness is getting worst. Monday I am going to the doctor to see if she can start me on Plaquenil. My case:

http://sjogrensworld.org/forums/index.php?topic=26961.msg287547#msg287547

 

[Jammy88]

Initial symptoms? You mean you don't have those symptoms anymore? Because my sicca symptoms are chronic for nearly three years now and I still don't have any treatment plus I feel dryness is getting worst. Monday I am going to the doctor to see if she can start me on Plaquenil. My case:


http://sjogrensworld.org/forums/index.php?topic=26961.msg287547#msg287547

hi ashler,

I still have symptoms but they're a bit more manageable than before.

SS is often related to infections. Have you tested for HTLV ? (try taking a PCR test)
Meanwhile, start taking supplements (B complex; high dose Vit. C; Omega 3, etc… they should really help to make the difference with SS).

I feel like you could improve by taking AZT / Tenofovir… but it's tough to find Drs. willing to prescribe them with no HIV diagnosis.

Best,

J


PS: Also, I don't believe too much in immune suppressors… Since the underlying cause in an infection, lowering the immune system response can be pretty harmful in the long term.

 

[ashler]

hi ashler,

I still have symptoms but they're a bit more manageable than before.

SS is often related to infections. Have you tested for HTLV ? (try taking a PCR test)
Meanwhile, start taking supplements (B complex; high dose Vit. C; Omega 3, etc… they should really help to make the difference with SS).

I feel like you could improve by taking AZT / Tenofovir… but it's tough to find Drs. willing to prescribe them with no HIV diagnosis.

Best,

J


PS: Also, I don't believe too much in immune suppressors… Since the underlying cause in an infection, lowering the immune system response can be pretty harmful in the long term.

My ID won't prescribe me antiretroviral drugs unless I am confirmed HIV which I am not.

Being tested for virtually everything (its in the link I shared). I will ask for Plaquenil as this is used for Sjogrens.

The girl who I think infected me with this unknown virus has promised me that she will get tested for HIV so I hope she can do it soon as I will retest if she turns out to be positive. Unlike me, she claims to be in perfect health.

 

[Jammy88]

My ID won't prescribe me antiretroviral drugs unless I am confirmed HIV which I am not.

Being tested for virtually everything (its in the link I shared). I will ask for Plaquenil as this is used for Sjogrens.

The girl who I think infected with this unknown virus has promised me that she will test hot HIV so I hope she can do it soon as I will retest if she turns out to be positive. Unlike me, she claims to be in perfect health.

I saw that you have a CD4/CD8 ratio of 2. I believe that your problems might be caused by HTLV or something analogous. You are conclusively HIV negative (with HIV you'd have a CD4/CD8 ratio lower than 1). Do you have a monoclonal gammopathy? This wouldn't prove anything, except that you have a rheumatological or hematological problem. HTLV could cause both, but again, we're actually unable to prove the cause for the majority of autoimmune diseases. The only thing we know for sure is that they're caused by infections. And this is spreading quick. Nowadays we have an 'autoimmune' epidemic. Of course these are just undiagnosed infections; you're not crazy, you certainly caught something from that girl. I'm sorry for what you're going thru and I wish you the best of health asap.


best

 

[ashler]

Well, I have already being tested for HTLV and it was negative.

Tomorrow I will go to an ID specialist to ask for plaquenil or even AZT (both have been used to try sicca). Other infectologists I have been to say what I have is not infectious. Not sure what to think.

Anyway, hope the ID specialist will give me some treatment because my sicca -specially xerostomia- is getting worst.

 

[Jammy88]

Well, I have already being tested for HTLV and it was negative.

Tomorrow I will go to an ID specialist to ask for plaquenil or even AZT (both have been used to try sicca). Other infectologists I have been to say what I have is not infectious. Not sure what to think.

Anyway, hope the ID specialist will give me some treatment because my sicca -specially xerostomia- is getting worst.

I hope you can find the solution to your issues. Sometimes SS symptoms can improve with time… I hope this can be your case, sooner or later. Keep us posted,

all the best.

J

 

[Jammy88]

@ashler , have you actually thought about trying autoimmune / paleo-diet ? I guess that could really help to relieve your symptomatology until you find proper treatment.


Also, have you tested by Htlv PCR with Tax amplifier? Htlv might be really difficult to isolate.

Best

 

[ashler]

@ashler , have you actually thought about trying autoimmune / paleo-diet ? I guess that could really help to relieve your symptomatology until you find proper treatment.


Also, have you tested by Htlv PCR with Tax amplifier? Htlv might be really difficult to isolate.

Best

Just Elisa not PCR. I am not far from Vienna and i haven't found where to do the PCR test. Does it possible to make it in Italy or somewhere else in Europe?

 

[Jammy88]

Just Elisa not PCR. I am not far from Vienna and i haven't found where to do the PCR test. Does it possible to make it in Italy or somewhere else in Europe?

Yes, you can get HTLV PCR tests in Italian hospitals

 

[Jammy88]

@ashler , any news? What did the ID specialist tell you?


Also, was your p24 protein positive in your HIV test ?

 

[Overstressed]

Hello Ashler & Jammy,
I haven't been on the forum for quite some time, but I can give you some information on my health situation: infection lies 7.5 years back, illness is going up and down. I have been under tremendous stress the last half year(my mother died due to cancer) and currently I'm not doing good at all. I'm also concerned getting the same cancer my mother had, since she had a number of symptoms as I'm having. I have pain in my side, my spine and stomach, currently.

Also, my immune defense has declined over the past years: I'm getting easily wrats, which is very odd, since I never catched anything like that. Concerning infections: I'm catching everything there is, and I have the feeling my immune system doesn't recognise the same infectious organism.

I've been tested on HTLV with a very sensitive test used in research area. The Prof. told me I'm not infected by HTLV, because the test tested me on HTLV dna. Whatever I'm infected with, it's certainly in my brain. All of my symptoms look like an HTLV infection, and I got infected by a person coming from an area where HTLV is endemic. But, the tests I took where all negative, so I have to accept it is.

But, I'm sticking to my hypothesis that it's a retrovirus.

All the best,
OS.

 

[Jammy88]

Hello Ashler & Jammy,
I haven't been on the forum for quite some time, but I can give you some information on my health situation: infection lies 7.5 years back, illness is going up and down. I have been under tremendous stress the last half year(my mother died due to cancer) and currently I'm not doing good at all. I'm also concerned getting the same cancer my mother had, since she had a number of symptoms as I'm having. I have pain in my side, my spine and stomach, currently.

Also, my immune defense has declined over the past years: I'm getting easily wrats, which is very odd, since I never catched anything like that. Concerning infections: I'm catching everything there is, and I have the feeling my immune system doesn't recognise the same infectious organism.

I've been tested on HTLV with a very sensitive test used in research area. The Prof. told me I'm not infected by HTLV, because the test tested me on HTLV dna. Whatever I'm infected with, it's certainly in my brain. All of my symptoms look like an HTLV infection, and I got infected by a person coming from an area where HTLV is endemic. But, the tests I took where all negative, so I have to accept it is.

But, I'm sticking to my hypothesis that it's a retrovirus.

All the best,
OS.

@Overstressed ,
I really thank you from the bottom of my heart for your transparency in telling us what you're going thru.

I believe I will somehow end up having all of the symptoms you've mentioned. I'm at the moment under strict medical supervision, however Drs. are really unable to find *what* is causing all of my issues. Like you, I've been dealing with spinal inflammation, neurological disorders, chronic lungs inflammation etc…
Of course I tested for HTLV via PCR (neg.), although I got told to repeat all the infectious tests. At the moment, many new moles are arising on my skin, and the old ones are getting darker and bigger - immunosuppression can cause this, too.
I'm not a Doctor and I'm not able to say what is wrong with me, but from the very beginning I had the feeling of this being a retrovirus. I had tremendous skin rashes and other issues, so weird that my GP asked to get tested for HIV 3 times - something no Dr. would do without having at least some doubts on a patient's health.
So far, the only treatment I got proposed would consist of immunosuppressors/immune modulators (such as methotrexate, interferon…). I will try to push for ARV's, if symptoms don't get better - which is something I'm still praying for.

My condolences for your loss.

Thank you,

all the best.

J

 

[Jammy88]

Hello Ashler & Jammy,
I haven't been on the forum for quite some time, but I can give you some information on my health situation: infection lies 7.5 years back, illness is going up and down. I have been under tremendous stress the last half year(my mother died due to cancer) and currently I'm not doing good at all. I'm also concerned getting the same cancer my mother had, since she had a number of symptoms as I'm having. I have pain in my side, my spine and stomach, currently.

Also, my immune defense has declined over the past years: I'm getting easily wrats, which is very odd, since I never catched anything like that. Concerning infections: I'm catching everything there is, and I have the feeling my immune system doesn't recognise the same infectious organism.

I've been tested on HTLV with a very sensitive test used in research area. The Prof. told me I'm not infected by HTLV, because the test tested me on HTLV dna. Whatever I'm infected with, it's certainly in my brain. All of my symptoms look like an HTLV infection, and I got infected by a person coming from an area where HTLV is endemic. But, the tests I took where all negative, so I have to accept it is.

But, I'm sticking to my hypothesis that it's a retrovirus.

All the best,
OS.

Hello OS,

how have you been doing in the last few months?

I've had a tremendous relapse of my neurological symptoms, now affecting also my arms. Of course I'm very worried, but there's not much I can do.

Best
J

 

[ashler]

Apparently there's a test that is able to detect nearly any virus that one may have:

With this test, you don’t have to know what you’re looking for,” said the study’s senior author, Gregory Storch, MD, the Ruth L. Siteman Professor of Pediatrics. “It casts a broad net and can efficiently detect viruses that are present at very low levels. We think the test will be especially useful in situations where a diagnosis remains elusive after standard testing or in situations in which the cause of a disease outbreak is unknown.

http://news.wustl.edu/news/Pages/28833.aspx

Unfortunately the test is still not available to the public, but maybe we can ask how/if we can take it? I already wrote a mail to one of the professors involved in this research to see if I can get tested with this.

Is there anyone in the US who can call/travel there or even better, is there anyone near St. Louis who can go and talk directly with Professor Gregory Storch to see if we can get this test done? This would be amazing and even if not cured, at least we would know what bug we have.

Thanks.

 

[ashler]

@ashler , any news? What did the ID specialist tell you? Also, was your p24 protein positive in your HIV test ?

No, everything related to HIV is negative.

Can you give me the address, contacts of the hospital(s) in Italy where I can test for HTLV-PCR with tax amplifier?

 

[Jammy88]

No, everything related to HIV is negative.

Can you give me the address, contacts of the hospital(s) in Italy where I can test for HTLV-PCR with tax amplifier?

I would suggest this one:
- Ospedale 'Sacco', Milan
Infectious Diseases Phone: +39 02 3904.2910

Address: Via Giovanni Battista Grassi, 74, 20157 Milano

 

[sonuhima]

Yes Teedot, you are right. But the ironic matter is that no one is really safe from getting this pathogen, even the CDC responsables and their families. This pathogen is not like hiv, that only get transmitted by sex or niddles. You can catch this just by kissing someone in the cheek. So, in the case of hiv, you are pretty sure that if you haven't gotten yourself in risky situations, it's imposible to get it (assuming that tests are so advanced that there's no way you get it in a blood tranfusion). But it has called my attention, after reading houndreds of cases in hiv forums, that many people apparently got an unknown pathogen, with very low risk situation, like oral sex or protected sex. Yes, maybe many of them are just stressed because they are married and went with a prostitute. But all of them? Why do they have symptoms after all those hiv negative tests? I wonder...

Very right....many got it after unsafe sex.but tests don't pick it. In my case I noticed each and every symptom match HIV as in beginning my toenails got infected then bad odour from testis and change on color of penile top muscle ache raised level of hemoglobin and ige and now photosensitivity.

 

[sonuhima]

I have ti

Hi all. I'm one of the unlucky ones too. Started a year ago with a sexual experience, progressed within a week to burning/tingling in the groin and anus, then tongue problems, severe dehydration, allergies, night sweats, groin pain, rashes, chest pains - I could write a book on what happened. Now, a bit further down the line I have joint problems/cracking joints, ulcers, muscle twitching, sore eyes and more. Sound familiar?

I have spent months dealing with infectious disease experts and microbiologists, with some interesting theories. It's quite clearly the same virus as the mysterious Chinese one and is yet to be identified. But apparently people are close, so we have to hold in there.

I had a long chat with Judy Mikovits - she stands by her gammaretrovirus theory - she says it's not XMRV, but something similar and a retrovirus, for sure. If you Google FeLV or check out the symptoms of XMRV in animals, there seems to be a similar disease progression.

Also, two people I have been in touch with who had similar problems and have been diagnosed with HPV-16. It's worth you all getting tested for this as it can wreak havoc on your body and your mucus membranes.

I have some questions if you don't mind?

- Has anyone tried ARV's? Dr M recommended Fenofovir and says some have experienced success with this.
- Have people here have been getting better after a couple of years?
- The one issue that's concerning me most are the problems with my joints and the cracking/crunching all over my body. Does this improve?
- Did anyone else have the telltale burning/tingling in the testicles/groin/anus?
- And Omar - how did your trial with GcMAF go?

I am seeing more specialists soon who have taken an interest in my case, so will keep you posted of course.

I have tingling in the testis ,oral ulcers,frequent acne.fat loss from hand feet buttock. Memory problems and so many...

 

[sonuhima]

Hello Ron r and hip not heard from u from a long time.Ron r I am also from India but caught in a very disgusting position I feel symptoms in my whole family.

 

[Notsure1979]

Hi who is still active from this thread? Hope your all doing ok.

I believe I've recently come down with whatever this is and I also believe it's spread through my family