Early vs late treatment plans

[Rufous McKinney]

An issue which...concerns me is the collagen breakdown factor...which seems to accrue over time.

Why did I Not notice my fingerprints disappear, my lower brain stem collapse further? (this is unproven, but I believe that has occurred in my case). The tendons and ligaments get so weak?

Whats happened to this part in folks who got their CCI addressed? I guess that's still a very small number of people....

 

[heapsreal]

How did you go about convincing a doc to give you antivirals? I’m struggling a bit with this concept of taking it all into your own hands, as people on here seem to do, I just don’t see how I could convince a doctor to listen to me. The dr already tested for a few viruses, although when I got my wife to ask if she tested for hhv6 she said no. And I don’t actually know the results, although she initially said ebv was reactivated and then later said it was long covid (even though there was no reported covid in the community). I guess we could ask for more tests. There’s not even a single specialist in NZ that she could call . There was Rosamund vallings but she retired and I don’t think she prescribed antivirals anyway.

The first 7 years id just been to 2 GPs and didnt get far. There was a gp who was known for treating cfsme pts in my city, Brisbane. He was quite knowledgeable but slowly authorities basically stopped him treating cfs pts outside the box and he became a regular stone faced GP.
But before this with my history of several different herpes viruses at my cfsme onset he tested them all again and did a lymphocyte subset test which measures T cells. I was totally neg to ebv where 7 yrs ago tested positive and also produce 'life long' antibodies supposedly??? Neg to hhv6, hhv1/2. Positive to varicella, cmv. T cells all high and report said appears to have a current viral infection.

He said it could be a passing virus and do it again in 3 months and he just suggested some herbs, vitamins etc . 3 month retest all t cells still high and it was really a discussion between both of us about antivirals as he knew of dr Lerners work and dr Montoya as did I, so he prescribed the antivirals. The t cell markers started coming down but took years to come back to normal. Times when i came off antivirals these markers would shoot up again as did symptoms.

Drs ive had since have just followed on from my original cfs drs treatments. I think if i was starting a fresh now with cfs it would be a different story.

 

[Husband of]

The first 7 years id just been to 2 GPs and didnt get far. There was a gp who was known for treating cfsme pts in my city, Brisbane. He was quite knowledgeable but slowly authorities basically stopped him treating cfs pts outside the box and he became a regular stone faced GP.
But before this with my history of several different herpes viruses at my cfsme onset he tested them all again and did a lymphocyte subset test which measures T cells. I was totally neg to ebv where 7 yrs ago tested positive and also produce 'life long' antibodies supposedly??? Neg to hhv6, hhv1/2. Positive to varicella, cmv. T cells all high and report said appears to have a current viral infection.

He said it could be a passing virus and do it again in 3 months and he just suggested some herbs, vitamins etc . 3 month retest all t cells still high and it was really a discussion between both of us about antivirals as he knew of dr Lerners work and dr Montoya as did I, so he prescribed the antivirals. The t cell markers started coming down but took years to come back to normal. Times when i came off antivirals these markers would shoot up again as did symptoms.

Drs ive had since have just followed on from my original cfs drs treatments. I think if i was starting a fresh now with cfs it would be a different story.

Very interesting. Do you know if the various viruses were actually active? I’m quite keen on antivirals as I feel like there’s a possibility that at the start a chronic viral infection or infections are the issue and that perhaps the reason why a lot of people don’t respond is because it stimulates the immune system and they have autoimmune issues that get worse when the immune system is stimulated. On the other hand, it could be that antivirals help only later on when the immune system has become exhausted and needs a boost. When did you first take antivirals?

 

[Pyrrhus]

Just to clarify, in case it helps:

When people use the term "antivirals" on Phoenix Rising, they are usually referring to medicines that target herpesviruses. These medicines are only effective against certain herpesviruses, not against other viruses.

There is no "antiviral" that works on all types of viruses in the way that an "antibiotic" might work on most types of bacteria...

 

[heapsreal]

Very interesting. Do you know if the various viruses were actually active? I’m quite keen on antivirals as I feel like there’s a possibility that at the start a chronic viral infection or infections are the issue and that perhaps the reason why a lot of people don’t respond is because it stimulates the immune system and they have autoimmune issues that get worse when the immune system is stimulated. On the other hand, it could be that antivirals help only later on when the immune system has become exhausted and needs a boost. When did you first take antivirals?

We didnt know what viruses were active we workedoff an educated guess. In Australia we dont get given a titre level just if its igm or igg positive and drs will say igm is a new infection and igg is a past infection and they dont really believe old viruses reactivate unless you have hiv or are on immunosuppressants for organ transplant. Its frustrating for me to see how americans easily get a viral titre number reading and can see if an old virus is reactivating, impossiblei n Australia. I did get in touch with a lab that does this for hiv pts and told them my situation and was willing to pay for the test but basically got told to piss off. Later i found out the guy who runs the lab is very anti cfs.

So my cfs dr at the time used the lymphocyte subset test as serial testing is evidence of a chronic infection and a high cd8 T cell is common in active herpes infection. Even to this day my cd8 T cell is slightly elevated. So that was the best test we had to prove a possible chronic herpes viral infection. Plus my neutrophil count is low 95% of the time and a few years later i was in a cfs study and lucky enough to get my nk function tested several times which was very low and low nk function makes it alot easier for viruses to reactivate.

Id guess NZ health system testing isnt that different to Australia. If it is its pointless getting tested for a virus and get lymphocyte subset test done and if it indicates viral infection than 3-6 month trial of antivirals is probably your only real way to know. Understand its not a cure but can improve symptoms and many like myself have to stay on them all the time or sink back to Shitsville.

Cheers