Has anybody started following Dr. Mikovits's suggestions RE Therapy?

[sunnyslumber]

Esther Comments:
"Just to make it even clearer than it was in the original post, this all came from off the cuff responses to questions about which treatments could be helpful, rather than Mikovits putting together anything like a suggested treatment plan. It's still early days with all this." ----sorry if OP was unclear to anyone!

Hi All,

In the Q & A portion of her presentation (Jan 22, you can find it on youtube or on this site) she was asked what things patients could do to help NOW. Her responses were along these lines:

*Suggests non-steriodial anti-inflammatories may help by reducing inflammation.
*Suggests taking a supplement which is proven to upregulate Natural Killer (NK) Cell function.
*Glutathione & N-Acetylcysteine & Anti-oxidants in general.
*Emphasized strongly the importance of finding Quality "supplements" as those which not could potentially harm (*MY COMMENT* this is where patient collaboration could be helpful to see which over the years *have* been the most Quality)
* Thought getting off "the Pill" could potentially help women since progesterone upregulates XMRV in Laboratory


Okay so most of us take one, two, or a quite larger number of supplements. Has anyone tried to modulate their supplements to be in more line with her above suggestions? Have the results been pretty much the same, better or worse?

In any case, I think for those of us who are convinced that most CFS involves an XMRV infection ...

(after all two of the negative studies were done by the Pyschiatric Lobby in the UK and Netherlands... the same people who brought us such great one-liners as:
"Of course CFS/ME is real, it is really in their heads!")

... I think it would be a great idea to remodulate our supplement intake to take into consideration her suggestions in the future if no-one has tried already! There's every reason to believe it would be helpful.



Take Care, better health to all, and respond away! =)


john

 

[gu3vara]

I'm thinking of ordering EpiCor to increase NK cells. It's 43$ for 5 months worth of pills on iherb.

I'm always hesitant to start anything that could possibly affect any blood test I would have in the future about XMRV. I would prefer to be tested positive first and start supplements after. But it's still a bit expensive, and not available in Canada yet so huge shipping cost to send blood overnight to US (assuming it passes customs in time...)

I have doubts about glutathione supplements of any kind (Immunocal, NAC), Cheney reported it worsens diastolic dysfunction found in CFS.

Might try artesunate also, though it's not her list.

 

[julius]

If you're thinking of EpiCor, consider AHCC. It's a similar price range, but seems to have more solid research behind it. I haven't tried either, but if I had the money I'd go with AHCC.

 

[cfs since 1998]

Yes, I started NAC, Vitamin C, AHCC, and NOW Beta Glucan. However, I couldn't continue NAC/Vitamin C (I understand you are supposed to take them together so that the NAC doesn't oxidize), because Vit. C gives me insomnia, no matter how early in the morning I take it, so I stopped them both.

The funny thing is I had started AHCC about 3 weeks before the Science article came out, and when the news came out I got worried whether it was a good idea or not, so I stopped taking it. I was concerned that it might stimulate the virus to replicate or something. What Dr. Mikovits said in her talk plus the fact that the viral load is very low--not many cells are infected--helped put my mind at ease, so I went back on a few weeks ago.

 

[Esther12]

Just to make it even clearer than it was in the original post, this all came from off the cuff responses to questions about which treatments could be helpful, rather than Mikovits putting together anything like a suggested treatment plan. It's still early days with all this.

 

[Hope123]

Yeah, Esther is right. Mikovits specifically stated something along the lines of these being ideas but that she was not a physician. I'd especially be careful with the NSAIDs as long-term use of something even like ibuprofen/ Advil/ Motrin/ Naprosyn, etc. daily can cause problems with blood pressure, ulcers, kidney issues.

Nancy Klimas, who is both MD and researcher, suggested CoQ10 (anyone got a brand they like?), a multivitamin, B-complex vitamin, and Omega3 fatty acids in one of her talks.

 

[julius]

I have a question about NSAID's that I could look up myself but I'm lazy so I'll ask here first. Does willow bark have the same sideffects as the synthetic ones (or aspirin?). I am asking because i have noticed that often whole plant material often seems to have a better profile than pure extracts or synthetics.

 

[ukxmrv]

XMRV+

Vit C give me nausea and vomiting (tried many different supplements and food types)
NAC - I've taken as part of other protocols and no real change/help
B12 - injections and sublinguel - no change
Glutathione - by mouth no change. Attempts to raise Glutathion levels (tested low) a disaster. Whey powder - much worse for about a year and various other methods such as taking supplement precursors (much worse after)

Gave up "the pill" within first year of illness as vomiting badly afterward with it. Also much worse PMT in that first year.

NSAIDS - Asprin (I can take), Ibuprofin (gives me a poisoned type malaise), Diclofenac (severe poisoned malaise with dizziness/brainfog/weakness), I'm going to try and experiment with this group and see what I can tolerate

I've pretty much done most common CFS supplements for the past decade so I'm going to watch out for ones that I have not tried. Sadly, I react badly to many.

 

[busybee]

I no longer need anti inflammatories but have used MVM-A, Fibronol, Q10, vitamin C, l carnitine fumarate for 1/2 years and I've recently started (1/2 months) Epicor and Immunocal.
The vitamin C is supposed to promote glutathione. NAC is in the MVM-A.

I couldn't tolerate any B vits but may try again soon, probably the adenosylcobalamin first as methyl floored me for two days.

The one supplement that made the most obvious difference was Fibronol. Q10 I noticed improvement once and then again when I stopped (Cheney) but restarted it.

And L carnitine I don't know exactly how it's helping but I feel much more well when I use it.

Maybe had slightly more endurance with the Epicor and Immunocal (I presume that's the Epicor).

The products suggested are used by lots of Drs with different ideas of what's happening, Maes, Myhill, Pall. And Cheney has suggested them previously.

 

[busybee]

Hi UKXMRV

 

[ukxmrv]

Thanks Busybee!

Lots for me to consider there. Always good to have hope.

 

[grant107]

I am xmrv positive. I have taken vitamin c, b12, CoQ10, e, fish oil. Nothing seems to make a difference. I took astragulas for a while but started having tachycardia and stopped. I am starting to take glutathione. I try new things one at a time in case one works I want to know which one. I start out by cutting the pill in quaters and gradually increasing it, as I am over sensitive to some things. I am thinking of trying Magnesium and vitamin d.

 

[Hope123]

I have a question about NSAID's that I could look up myself but I'm lazy so I'll ask here first. Does willow bark have the same sideffects as the synthetic ones (or aspirin?). I am asking because i have noticed that often whole plant material often seems to have a better profile than pure extracts or synthetics.

Not sure about the willow bark - there probably aren't great studies on it as most people don't take it in this forumulation. There are the German monographs on herbs out there but I'm too sick to look it up. Aspirin still carries the risk of stomach bleeds; if you're going to take it, I would advise the lowest dose possible (82 mg) and get it enteric-coated.

The problem with whole plants is that sometimes there isn't enough of the relevant substance to effect a change and where the plant is from/ the exact species/ processing can affect potency.

 

[julius]

Not sure about the willow bark - there probably aren't great studies on it as most people don't take it in this forumulation. There are the German monographs on herbs out there but I'm too sick to look it up. Aspirin still carries the risk of stomach bleeds; if you're going to take it, I would advise the lowest dose possible (82 mg) and get it enteric-coated.

The problem with whole plants is that sometimes there isn't enough of the relevant substance to effect a change and where the plant is from/ the exact species/ processing can affect potency.

Thanks.

I checked a bit and found this from the University of Maryland Medical Center;

'Willow bark has been shown to relieve headaches. There is some evidence that it is less likely to cause gastrointestinal side effects that other pain relievers, such as ibuprofen (Advil) and other nonsteroidal anti-inflammatory drugs, do. However, studies have not shown this beyond all doubt, and people who are prone to stomach upset may want to avoid willow bark. Large-scale studies are needed to fully determine how safe and effective willow bark is for chronic or recurring headaches.'
http://www.umm.edu/altmed/articles/willow-bark-000281.htm

For those who don't know, here is th overview from the same site;

The use of willow bark dates back thousands of years, to the time of Hippocrates (400 BC) when patients were advised to chew on the bark to reduce fever and inflammation. Willow bark has been used throughout the centuries in China and Europe, and continues to be used today for the treatment of pain (particularly low back pain and osteoarthritis), headache, and inflammatory conditions such as bursitis and tendinitis. The bark of white willow contains salicin, which is a chemical similar to aspirin (acetylsalicylic acid). It is thought to be responsible for the pain-relieving and anti-inflammatory effects of the herb. In fact, in the 1800s, salicin was used to develop aspirin. White willow appears to be slower than aspirin to bring pain relief, but its effects may last longer.

 

[gu3vara]

yeah, you are probably right, unless I find the cure that kills all trace of XMRV, in this case I'll be cure and won't give a damn about the test anyway

 

[nanciswell]

Vitamin C I can only tolerate tapioca form...

Nac is high in sulfur and I do terribly with sulfur things//

B12 I find helpful...

Glutathione I wont touch as I have heard bad things about taking it..

 

[Kati]

I am a bit reluctant to buy supplements at the moment- as some of you suggest, they don't necessarily make a dfference in the quality of life and likely depletes the wallet at a higher rate. For the last 3-4 weeks I have been started on B-12 IM and complex B and honestly don't see much improvements.

Also the poll question deserves a "none of the above" answer.

 

[sunnyslumber]

The things that help me most personally are magnesium (regular tablet, wonder if a special kind would work better) and B12 (using a dropper). Not a big difference but if I go a few days without taking either I notice it.

Haven't really tried any NSAIDs. Also haven't really tried any immune modulator since transfer factor a long time ago. I haven't tried any of the supplements marketed primarily as NK cell boosters.

About Essential Fatty Acids... I would think that the quality would vary widely. In a low quality most may be oxidized already by the time you buy it, or there may be some kind of additive that is not beneficial. I'm not really sure how to distinguish the quality... I imagine the same would be true of things like Glutathione, or Vitamin C, --you don't want to be just adding the oxidized version --- that's less than nothing!

Kati: Your Idea for a none-of the above option is great! I was (more) brain-fogged when I made this post and don't think I can change the poll options now?

 

[Jenny]

I've taken most of these for years (some for decades) and I'm getting worse over the years.

The problem with these kinds of suggestions is that no-one knows how much of them we should take. There are wildly varying recommendations in the literature. If you look at Pubmed trials of supplements they often use mice or other animals and often the dose per body weight is absolutely huge.

Also, the quality is likely to vary according to the brand.

Jenny

 

[flybro]

I didn't see Q10 on the poll, unless its under a different name, I'm sure I heard either Kilmas or Mikovitch mention it.

I didn't notice the benefit until i ranout for over a week. They seem to aid cognition and phyical abilities. I can only afford to take between 30 and 90 mg a day, A couple of times I have gone onto 300-400mg a day and the benfits increase hugely, also I haven't had any negative side effects with these.