Dr Mikovits' XMRV treatment options: which possible now in UK?

[glenp]

Anti inflammatory

Does anyone know which specific one she is recommending? and what dose?

glen

 

[ukxmrv]

Mark,

Thanks for the reply addressing cortisol. Those of us who have "tried everything" including mind/body work are justifiably frustrated to hear these techniques once again mentioned. We all went to be well. Sadly for us it's always someone else that could possibly be helped..

Yes, there may be PWME who have high cortisol or spikes of cortisol. Subgroups once again and given the research into this topic possibly a small group indeed.

We need realism here. It's very hard always being told that some possibly small, hypothetical subgroup (which isn't supported by current research) may possibly benefit.

After over 25 years of trying any treatment I can regardless of the type, starting ME groups, attending groups, being on the internet when ME groups started, the patients I have seen who have benefitted from mind techniques has been very, very small indeed.

That's great for them but one day surely there must be something that works for the rest of us.

XMRV may offer these answers. We need clinical trials of new potential drugs and new treatments. Dr Mikovits is right to talk about "what we have now" as some people may not have tried the things mentioned. The WPI will be carrying out clinical trails into new things when they are settled and have the funding. I am supporting their efforts.

 

[pete]

Hi All , I don't think we get much help here in the UK. I've been following Drs. Mikovits and Deckoff Jones . I think this is the best hope. I just found out I am XMRV+, so I sent for AZT and viread. Isentress is expensive and I can't get pers. The no pers. places don't do it I think. You can get the other two OK for about 20 a week. My Dr. says he'll do the bloodwork ' if I get myself on the drugs ' I am 64, ill for 16 years . There's no help coming from the NHS any time soon . They just want to treat our minds or give us exercise therapy. We sort ourselves out or get nothing I think. I like the WPI science , Pete .

 

[Navid]

good luck pete!!!!!!

 

[pete]

Hi , I'm now on the ten and zid . Just a bit MEish and a tummy ache . I'll try to keep you posted of progress. Am I one of the first in Britain ? Pete .

 

[garcia]

Hi , I'm now on the ten and zid . Just a bit MEish and a tummy ache . I'll try to keep you posted of progress. Am I one of the first in Britain ? Pete .

I think so pete. Haven't heard of any others (at least none that have gone public). Good luck!

 

[pete]

It's now been about 2M and I feel a little better. Now my wife has been diagnosed with Acute Myeloid Leukemia and is having chemo. I want to get her blood tested at Redlabs but does any one know if the results would be affected by chemo ? Thanks, Pete'

 

[ukxmrv]

What Chemo drugs is she on Pete?

(really sorry to hear about this awful diagnosis)

 

[pete]

The treatment is known as ADE . Currently she is having the high dose cytosine . I think it kills off the white blood cells , just wondered if it would affect XMRV or the detection of it. I'm going to ask redlabs . Pete'

 

[pete]

Also I wonder, if she started ARV's , because I think she is high chance XMRV, whether the XMRV is still detectable maybe by serology. I am encouraged by Dr Snyderman's letter to Dr. Deckoff Jones in her blog...

 

[aquariusgirl]

hi, can pete or anyone,
tell me how one would go about ordering redlab tests w/out a helpful UK GP to either sign the requisition form or to accept the results?
thanks.

 

[Sushi]

hi, can pete or anyone,
tell me how one would go about ordering redlab tests w/out a helpful UK GP to either sign the requisition form or to accept the results?
thanks.

Hi aquariusgirl,

Redlabs doesn't require a physician to sign the requisition. You write in your doctor's name. I wrote in a US doctor. You can then get the results yourself.

Sushi

 

[caledonia]

Regarding cortisol levels: there are three stages of adrenal fatigue. In the first stage cortisol levels are high. In the third stage cortisol levels are low. Lowering cortisol by various methods (meditation or supps) would only apply to stage 1 adrenal fatigue.

Many ME/CFS symptoms can be attributed to Stage 3 adrenal fatigue. Stage 3 is self perpetuating and very hard to get out of.

I think the goal would be to have normal cortisol levels, not too high or too low. For this you have to treat adrenal fatigue.

The reason for the adrenal fatigue in the first place is due to a partial methylation block. If you're not methylating, then you can't produce adrenal hormones. This is also self perpetuating, unless you treat it by taking active folic acid and B12.

The reason for the partial methylation block is a chronic stressor. This can be anything from abuse to viruses. It just has to be chronic to start the process and tip a person into a self perpetuating cycle.

That being said, millions of people are under all kinds of chronic stress, yet they don't get ME/CFS. I believe there has to be something extra going on like XMRV to explain why we get ME/CFS while others under the same stressors don't.

So there are three legs to the problem:
chronic stressor, leading to methylation block, leading to stage 3 adrenal fatigue

I think some people have been lucky and gotten better treating 1 or 2 of the legs, but many people will ultimately need to treat all 3 of the legs to get completely well.

There is an additional complication that happens with adrenal fatigue, which is the development of food allergies. They become chronic stressors themselves, which perpetuates the adrenal fatigue. This would explain why some people have changed their diet (ie eliminated their food allergies either by choice or accident) and gotten benefit.

So you would have to simultaneously treat 1) chronic stressors - XMRV, Lyme, other infections, food allergies; 2) also the methylation block; 3) also adrenal fatigue.

But given that we may not have access to the more heavy hitting and expensive treatments (ARV's, AV's), working on any of the others that you can (food allergies, methylation, adrenals) would make sense to me.

 

[garcia]

Many ME/CFS symptoms can be attributed to Stage 3 adrenal fatigue. Stage 3 is self perpetuating and very hard to get out of.

I think the goal would be to have normal cortisol levels, not too high or too low. For this you have to treat adrenal fatigue.

The reason for the adrenal fatigue in the first place is due to a partial methylation block. If you're not methylating, then you can't produce adrenal hormones. This is also self perpetuating, unless you treat it by taking active folic acid and B12.

Here is a question. If what we call "adrenal fatigue" is caused by abnormal cortisol levels or lack of adrenal hormones, then we could simply use cortisol, adaptogens, phos serine etc. to rebalance our cortisol and cure our AF. Unfortunately this doesn't work (at least for people like me).

Also if it is simply caused by a methylation block then presumably you could simply cure it by taking acitve B12/folic acid. Instead what people like me find is that the methylation supplements give us die-off and horrific inflammation, causing enormous amounts of adrenal stress, without curing anything.

We need better models (preferably involving HGRVs) because the existing ones aren't working.

So you would have to simultaneously treat 1) chronic stressors - XMRV, Lyme, other infections, food allergies; 2) also the methylation block; 3) also adrenal fatigue.

Working on all those simultaneously is going to be extremely stressful for someone with AF. I wish it were that easy, but I don't see this as a workable treatment protocol for many of us.

 

[ukxmrv]

The problem with the theory of three stages of adrenal failure when applied to ME is that there is no proof that XMRV+ PWME ever had the high cortisol stage.

I test as cortisol low and the symptoms that I attribute to the low cortisol in the morning have been there for decades. My ME onset was acute and overnight and there was no sign of a high cortisol period at all in those early years.

Most members in my family have similar morning low cortisol signs (and I'm only comparing to myself and what I think my own low cortisol symptoms are). The trigger seems to be puberty for this to start.

It may be in some people that they do have normal cortisol and then the virus acts as a trigger (with/and/or puberty) and the body never goes through a high cortisol period.

I've tried supplementing cortisol and the basic methylisation program but no change to my symptoms in a positive way. For me, it's not been that easy.

 

[heapsreal]

Here is a question. If what we call "adrenal fatigue" is caused by abnormal cortisol levels or lack of adrenal hormones, then we could simply use cortisol, adaptogens, phos serine etc. to rebalance our cortisol and cure our AF. Unfortunately this doesn't work (at least for people like me).

Also if it is simply caused by a methylation block then presumably you could simply cure it by taking acitve B12/folic acid. Instead what people like me find is that the methylation supplements give us die-off and horrific inflammation, causing enormous amounts of adrenal stress, without curing anything.

We need better models (preferably involving HGRVs) because the existing ones aren't working.



Working on all those simultaneously is going to be extremely stressful for someone with AF. I wish it were that easy, but I don't see this as a workable treatment protocol for many of us.

i think treating adrenal fatigue can help, but we havent really found and treated the underlying cause of cfs which can be causing the adrenal fatigue. I think adrenal fatigue could be seen like a co-infection in that it isnt the main problem but caused from the underlying cause. Also the adrenal glands are also governed by the hypothalamus which has been shown to be 'injured' in cfs and this could also cause abnormal adrenal hormones. But like everything we throw at cfs our bodies keep adjusting to it in the wrong direction, malabdaption or tolerance, but this is all just a guess from my experience with cfs.

 

[Waverunner]

We need better models (preferably involving HGRVs) because the existing ones aren't working.

This is what I can agree to 100%. As long as we do not have a better understanding of the mechanism behind CFS and the symptoms, the treatment approaches will always be flawed or work randomly only. I want to know why we get very weird reactions to supposedly helpful medications and supplements. I want to know why some supplements or drugs only work for a few days and then stop AND I want to know why things that actually should be very beneficial (vitamins, probiotics etc.) can have such devastating effects. As long as this is not clear we will not have treatment approaches that cure us.