Can be CFS caused by a HIV-like infection?

[Daffodil]

something i

Would liketo try raltegravir but price is too much. Think its active against herpes viruses. Cmv is one issue for me.

I respond to abx but not sure if its sinusitis or lyme and co like babesia . Just can't afford testing seems easier to just treat??

Cheers

hi heap. raltegravir didnt help me but i heard it helped at least one person a lot. i think they did a trial of it for MS...not sure what happened there.

if your doctor prescribes raltegravir, you might be able to get it free...arent most HIV meds free? they dont usually ask for proof of HIV infection cuz no one else takes those meds.

xoxoxo

 

[heapsreal]

something i

hi heap. raltegravir didnt help me but i heard it helped at least one person a lot. i think they did a trial of it for MS...not sure what happened there.

if your doctor prescribes raltegravir, you might be able to get it free...arent most HIV meds free? they dont usually ask for proof of HIV infection cuz no one else takes those meds.

xoxoxo

Wont get it prescribed here in australia unless off label but not sure drs would risk prescribing it and possibly getting pressure from health authorities.

Probably easier to get it online but under the guidance of my dr.

 

[Jammy88]

ME CFS can surely be caused by viruses / retroviruses. I'm planning to start taking Valtrex soon, cuz I'm not doing good at all.. my incident was infectious and recognized as 'something viral'. However, nothing specific could ever be found in my blood tests..

 

[sorin]

One extremely vocal patient calls it that. But the symptoms aren't similar. In fact, I'd expect them to be somewhat opposite. AIDS involves immune deficiency, whereas ME symptoms and research suggest something more in the way of an over-active immune response, such as autoimmunity.

I do not think is autoimmunity, because in that case lymph nodes would not be enlarged and painful and CFS would not be contagious. (see unto reply above)

 

[Marky90]

I do not think is autoimmunity, because in that case lymph nodes would not be enlarged and painful and CFS would not be contagious. (see unto reply above)

Thats not right.. CFS is not proven to be contagious, and loads of autoimmune conditions do not have enlarged lymph nodes as a symptom.

 

[sorin]

Just wondering if someone else have these additional symptoms associated with CFS (I have these unfortunately)

• Glomerulonephritis - a kidney disease where blood is found in urine samples. Also I need to go to toilet a few times per night.
  
• Pain in the upper part of stomach, just below costal margin. It first appeared on left and now there is on right side also.
• Dermatological problems - some red spots on legs, like mosquito bites (allergies or whatever)
• High blood pressure (150/100 - 160/110)
• High cholesterol
• Dermatitis on scalp and nose.
• Eye pain
• Frequent herpes on lips

 

[Countrygirl]

Just wondering if someone else have these additional symptoms associated with CFS (I have these unfortunately)

• Glomerulonephritis - a kidney disease where blood is found in urine samples. Also I need to go to toilet a few times per night.
  
• Pain in the upper part of stomach, just below costal margin. It first appeared on left and now there is on right side also.
• Dermatological problems - some red spots on legs, like mosquito bites (allergies or whatever)
• High blood pressure (150/100 - 160/110)
• High cholesterol
• Eye pain
• Frequent herpes on lips

Hello @sorin ,

I just stumbled across this thread and thought I'd throw in my tuppenny worth:

Yes to the glomerulonephritis which, I understand is an autoimmune disease. I had signs of undiagnosed kidney disease after just a few years of ME, and have read (was it Dr Cheney?) that 80% of ME patients have (usually undiagnosed) chronic kidney disease.

Not sure if my chest/abdominal pain is in the exact same place as yours. For twenty years since onset, I had sharp pain in both sets of intercostal muscles making breathing a challenging exercise. I was told that a doctor claimed (sorry to be vague but it was a GP) that intercostal pain was a sign of chronic Coxsackie B infection.

I have a severe and very destructive and painful dermatological condition that is very rare and usually only found in AIDS and Lupus.

As for hypertension, for 30 years I had severe hypotension when (trying) to remain on my feet and now that has reversed to severe episodes of (222/120) orthostatic hypertension with the fringe benefits :-( of malignant hypertension and episodes of hypertensive encephalopathy that has resulted in Meniere's Disease.

Cholesterol is high at 9.2 but statins made me relapse for months and I will never take them again.

Eye pain caused by light when worse.

Yes, to the herpes simplex on the lips and nose but not that often though.

I don't know if the above helps you.

 

[sorin]

@Countrygirl
Thank you so much for your reply. This forum is great source of support for me. The information I received here is much more than doctors could offer to me. I feel a solidarity of people suffering from this perfidious and miserable disguised disease. And this means much to me, where family and doctors told me that I have nothing and all is in my mind! I found on this site a user who, referring to doctors had this motto which I find brilliant "My disabling chronic illness is more real than your imaginary medical expertise". Personally I wish you "good health", which for us, I think is the most precious thing.

 

[sorin]

Thats not right.. CFS is not proven to be contagious, and loads of autoimmune conditions do not have enlarged lymph nodes as a symptom.

This is what I said too, that autoimmune diseases do not have enlarged painful lymph nodes, which is a "brand" of CFS. So does not make sense for me to call CFS an autoimmune disease.

 

[sorin]

ME CFS can surely be caused by viruses / retroviruses. I'm planning to start taking Valtrex soon, cuz I'm not doing good at all.. my incident was infectious and recognized as 'something viral'. However, nothing specific could ever be found in my blood tests..

What is your CD4 level?
Is a Doctor who prescribed you Valtrex or do you intend to take it on your own?

 

[sorin]

@sorin ..i have spent decades suspecting CFS is caused by a retrovirus because everything seems to fit with the actions of a weaker retrovirus. indeed, some HIV meds did help me when I was at my worst....and my CD4 count also reached 350 at one time.

I have read about HIV+ individuals on HAART who also develop CFS, but I used to think that that could be explained by the fact that the particular drugs they were on, were not effective against whatever retrovirus we might have.

Though my experience cannot rule out retrovirus or some other virus as "puppet master", I did get much better on antibiotics that treated Lyme (or possibly some other bacteria?). My CD4 count is now 900. Northern Indians are known to have a lower CD4 count, so it possible that 900 is is a very good value for me (ie..the value of a totally healthy person who is HIV negative).

There are people with severe Lupus and other autoimmune disorders who can have extremely low CD4 counts. (sometimes, doctors even try antiretrovirals in these patients). Lyme patients can also have low CD4 counts. So, perhaps many illnesses can cause destruction of these cells.

I asked my doctor why HIV medications helped me (one in particular named Viread). He theorized that it was acting on the HERV(s?) that are activated in these sorts of illnesses, which can have autoimmune components).

What is interesting to note is, after 3 years of antibiotic treatment, I was able to finally stop taking the Viread. When I tried to stop the drug much earlier on, before the antibiotic treatment, I again became completely bedridden and felt close to death.

Anyway, as I said, this does not rule out virus/retrovirus, because, as I understand it, many who are treated for Lyme/chronic bacteria, relapse once they stop the antibiotics.......maybe something other than bacterial persistence is causing the body to relapse - causing the body to not be able to keep the bacteria in check. Who knows?

@Daffodil
I sincerely hope that now you are much better. Based on your many years of experience with management of CFS symptoms (If I am not wrong I understood there are a few decades of managing this), could you please give me some advice on how should I proceed? When is the critical moment when action is mandatory? When CD4<350? At the moment I have no diagnostic and no treatment. Doctors told me that "tests are ok" or that i need "psychotherapy"

 

[sorin]

What does your doctor say?

My doctor said that CD4/CD8 ratio is inverse and he wrote in the medical report: "Lymphocytosis.
Lymphocite 34% (2.600/mmc), normal number of T, NK, B, cells,
inverse CD4/CD8 ratio 2:3, slightly increase of NK-T, which suggest stimulation of specific cell immunity. To be related with viral tests and possible chronic infections."

So, what is "specific cell immunity"? Actually there is no conclusion in this medical report, because the doctor specialized in Infections did find nothing, so she said "tests are ok, go to psychotherapy because all is in your mind", which I guess almost everyone on this forum has heard at some point in the past.

 

[maryb]

Sorry not up to reading the whole thread, I think it was Dr Tim Jackson, I'll try to check later on, who said in a radio interview that the old way of thinking with regards to IgG and IgM is wrong, if IgG is more than twice the normal range then this can indicate a current infection. The where and whys of it I can't explain. I think maybe the CMV should be re-visited. Also have you ever been tested for Lyme?

 

[sorin]

I want to share with you a story that maybe worth some comments. In 2012 when I started to feel extreme fatigue, after I did dozens of blood tests and was seen by dozens of doctors who all concluded that "all is in my mind", I decided to try "alternative medicine". Some relative told me that was at a ""bioresonance specialist" who used a device that introduce some weak electrical signals in the body through fingers and head for about half an hour and at the end a computer displays a diagnostic. That relative told me that in her case the device "guessed perfectly" what she was suffering from. I was very skeptical and thought at the beginning that this should be a quackery. But because I was desperate about the fact that "classic" medicine failed to find a diagnostic for me I wanted to give the bioresonance device a try. I was there and at the end of the session the doctor looked at me frightened after she read the report on her laptop and told me "your immunity is very low". Her husband came in the room and being closely to the doctor asked her "What he has?" and she whispered with the intention that only him can hear (but I heard too) "He has HIV". He looked also very frightened and asked her, whispering, "and you tell him this, right?" but she did not answer. When I heard this I was shocked because I tested before 3-4 times Negative for HIV in ELISA, ECLIA, etc and doctors told me that the accuracy of the tests is almost 100%. So, silently, I thought for myself "This machine is a stupid fake, I did test for HIV and was negative". The fact was that the doctor did not write in the report that I am HIV positive but only that I have very low immunity and that I am on risk to develop infections such as Candida and Herpes and Risk for neurological problems. She recommended me some natural supplements like aloe vera, noni, etc and that was the first and last time I visited her office. After a few years "the oracle" seemed to become true, unfortunately I started to have neurological problems, and got the candida on tongue and herpes on lips. Then in my mind raised the awful thought "if the device was right? if i was HIV infected and I will never know because all blood tests said I am negative?". Any comments on this? Did someone else have a similar experience with bioresonance machines? Do you know if these machines are scientific on some degree or just output a diagnostic by searching in a database ?

 

[maryb]

I believe that bioresonance machnes are only as good as the people who use them, in other words the results vary. Some people/patients swear by them, others not so. Why not try to find one in you area via recommendations and have another consult.

 

[Daffodil]

@Daffodil
I sincerely hope that now you are much better. Based on your many years of experience with management of CFS symptoms (If I am not wrong I understood there are a few decades of managing this), could you please give me some advice on how should I proceed? When is the critical moment when action is mandatory? When CD4<350? At the moment I have no diagnostic and no treatment. Doctors told me that "tests are ok" or that i need "psychotherapy"

@sorin ...i dont think you can call my decades of the illness "managing". for the first 11 years or so, i coped the best i could by sleeping a lot and working only part time at very low stress jobs that did not require much brain power.

after that, the illness started to become severe and i began to see american specialists. i spent all my mother's savings seeing these doctors and taking antivirals (even IV antivirals). they helped very little and eventually, i just got sicker and sicker. for years, i planned suicide and it was the only way to get through the day.

it was not antivirals or antiretrovirals that turned everything around. they just helped maybe 5-10%. GcMAF helped a little, too...but it was the Lyme treatment that helped the most.

if you want my advice, i would send away for a test kit from ARMIN labs in Germany. the kit is free and you do not need a doctor's signature. the test you should order is the LTT ELISPOT for Borellia. i believe it is 189 euros. that might be a somewhat more reliable test than the others, for lyme.

then, I would see an LLMD.

 

[sorin]

I believe that bioresonance machnes are only as good as the people who use them, in other words the results vary. Some people/patients swear by them, others not so. Why not try to find one in you area via recommendations and have another consult.

@maryb I am afraid that won't help, because these machines are not officially recognized by doctors. If the bioresonance device says I have HIV and all blood tests (including Western Blot, HIV viral load) shows I am negative, finally, the doctors won't give me any treatment. All my test regarding HIV (antibodies, Western Blot, PCR) showed nothing.

 

[Hip]

Then in my mind raised the awful thought "if the device was right? if i was HIV infected and I will never know because all blood tests said I am negative?". Any comments on this?

You give more credence to pseudoscientific device like this bioresonance machine, than to medical laboratory tests which showed you were HIV-negative?

You may want to examine whether you are suffering from AIDS phobia. I have dealt with lots of people who developed such a phobia after contracting a chronic infection. Such a phobia may be driven by high levels of anxiety (= mental tension and/or worry), so a good way to address the phobia is to treat the anxiety.

 

[sorin]

You give more credence to pseudoscientific device like this bioresonance machine, than to medical laboratory tests which showed you were HIV-negative?

You may want to examine whether you are suffering from AIDS phobia. I have dealt with lots of people who developed such a phobia after contracting a chronic infection. Such a phobia may be driven by high levels of anxiety (= mental tension and/or worry), so a good way to address the phobia is to treat the anxiety.

As you said, the device is pseudoscientific (so that means that still have a part of science in it, and is not completely fake). The lab tests are also pseudoscientific since they admit an error range and they give false negative and false positive results. Not to mention that they are not 100% automated, and there is need for a human to look at band to check if that band is light or dark :-(
Also, I recommend everyone (if not already watched) to watch this movie "House of numbers" which is free on YouTube

You will see how many lies were told to the public in the last 30 years about HIV and AIDS.

 

[Hip]

As you said, the device is pseudoscientific (so that means that still have a part of science in it, and is not completely fake).

Pseudoscientific does not mean "partly scientific". Pseudoscience generally uses scientific-sounding words, ideas or concepts to fool people with no scientific knowledge into believing it that real science is involved. It is a scam, in other words.

Pseudo = not genuine.

The lab tests are also pseudoscientific since they admit an error range and they give false negative and false positive results.

No, again you misunderstand what the word "pseudoscientific" means.

Also, I recommend everyone (if not already watched) to watch this movie "House of numbers" which is free on YouTube. You will see how many lies were told to the public in the last 30 years about HIV and AIDS.

I am afraid that movie is more pseudoscience, mixed in with some conspiracy theory, just to add to the bull.