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» LymeNet Flash » Questions and Discussion » Medical Questions » FDA/NIH confirms retrovirus findings in CFS patients (Page 2)

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Author Topic: FDA/NIH confirms retrovirus findings in CFS patients
sparkle7
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Sleep is a big issue with fibromylagia, too. Like m0joey says... it's a symptom of the illness not an end point. With CFS you sleep & sleep but the fatigue is constant... With fibro - in my experience - it's more about pain & less about fatigue. Although, fatigue is still an issue. You still get the alpha intrusions & low growth hormone levels with fibro.

Alot of people use infrared gadgets to treat muscle pain... They use it on animals, too. So, people do use the photons without the homeopathic nosodes quite alot. People also use infrared saunas...

I have tried using homeopathic remedies with the LightWorks. I haven't done it alot, though. Brussels said she would not use the photons with babesia. I had a bad reaction with my situation. I think it's comes down to the parasites being an issue at some level. I don't know why...

If the parasites are a problem, you have to be a bit cautious with the photons. Just my 2 cents... I thought I was done with the parasites last year but it turns out that I wasn't.

If you have them, it's kind of a big issue that may be somewhat invisible. I'm still working on them... I believe. The toxins they excrete can mimic fibro & other things. Eventually, they can lead towards cancer in some cases.

I would think that any genetic material would work in regards to a retrovirus... it's in the DNA... (?)

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Tincup
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Things to consider-

Ampligen is only available as an intravenous drug. (Will the IDSA simply allow Lyme patients who they claim are not sick .... because there is no such thing as "chronic Lyme".... have a pic line for a year to 18 months to cure what they say doesn't exist?)

Typically 400mg is administered twice weekly over the course of about one hour (in office only- experimental drug). Most subjects experience mild flu-like feelings for several hours after the infusion.

While research demonstrates that 6 months of therapy can produce a significant response, we generally recommend at least 12 months of therapy.

Persons who have been ill for a long time are well advised to consider 18 months of therapy.

The cost of Ampligen is about $150 per dose, or $1200 per month. Infusion costs, medical visits, and laboratory add approximately $1000 monthly, thus the total cost may exceed two thousand dollars per month.

Cost for the Ampligen therapy- $24,000 - $36,000.

There are several restrictions that apply to subjects receiving Ampligen treatment, aside from the fact they must meet the CDC criteria (definition) of CFS and no where does this mention Lyme disease or coinfections.

The subject must be 18 to 60 years old and very ill. Female subjects with child-bearing potential are required to use regular birth control.

While most medications may be continued, subjects may not use immune modulating drugs (such as gamma globulin, steroids, interferon, etc.), anti-viral drugs (like Zovirax, Famvir or Valtrex), non-steroidal anti-inflammatory drugs (such as aspirin, Advil, Naprosyn, etc.), or any other experimental medication.

Other restrictions may apply, and each subject is considered individually.

More than an hour of traveling to and from a medical office is difficult for most subjects, and can ``undo'' the benefit of Ampligen.

William A. Carter, M.D., the co-inventor of Ampligen, was a pioneer in the clinical development of interferon, a protein therapy now approved for more than a dozen viral diseases and commanding a market in excess of $2 billion.

To date, HEMISPHERx and its subsidiaries have received over 200 patents internationally to protect its proprietary position in NA and related drug technologies.


http://www.drlapp.net/mission.htm

http://wwcoco.com/cfids/ampligen.html

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m0joey
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Regarding ampligen:

the costs you described are for the open-label, cost-recovery trial. They will be re-starting phase III clinical trials soon (free drug but might get placebo) for FDA approval. At the moment, this drug has no indications whatsoever for borrelia or any bacterial infections. Hemispherx is however doing a retrospective analysis of their previous patient samples to see if xmrv+ patients responded better on the drug. These results will be announced at the NIH conference on sept 7-8.

If you think chronic Lyme patients have been screwed over by the IDSA please understand that there at least exist a multtude of LLMDs who administer IV antibiotics and multiples more who prescribe oral antibiotics.

Compare this to the CFS community where ampligen has been used by a total of 3 doctors in the last 20 years, and as you mentioned, patients have to move to either Reno or Charlotte to get administered since commuting is not recommended. Salt lake city is no longer an option for the open-label trial, so it's down to 2 doctors if you want to ensure getting the drug.

To put this in perspective, CFS patients haven't even gained the equivalent of consideration of a 30-day course of doxycycline in the minds of physicians.

With regards to chronic Lyme patients getting coverage for something like ampligen: if HGRV is found to be the cause of CFS and some Lyme patients test positive will they still be called Lyme patients or CFS patients? We would get insurance coverage for FDA-approved treatment for HGRV-associated syndrome or whatever name they come up with for it.

[ 08-29-2010, 03:39 PM: Message edited by: m0joey ]

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sparkle7
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Comparisons of illnesses & which is worse is pretty pointless... I had a CFS diagnosis & fibro & Lyme... I had CFS back in the 80's & I was able to get well for about 8 years. I also got the fibro - then, Lyme diagnosis. So, I've experienced a bunch of this stuff over a long period of time.

They are all bad & under-treated. There isn't enough money going into any of these illnesses. It's been like this for probably 40 years. Many people are suffering & have no idea what to treat or if the treatments are effective. The tests are not accurate.

I don't know how accurate the XMRV or HGRV test is. We all just have to try to make the best of things until there is more information. The bottom line is that we just don't know right now which pathogen is causing what.

Everything about this is a guessing game - it's just one educated guess after another. It's important to know that not all Lyme symptoms may be Lyme or a co-infection. There are many causes for the symptoms we may be having & there is a big overlap. So, we have to be cautious with what we use to treat ourselves.

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m0joey
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Sparkle--

I wasn't trying to make a point that one is worse for the sake of sympathy or woe-is-us. Tincup made a point bemoaning the potential lack of availability of ampligen vis-a-vis lyme patients, and I just wanted to put that in perspective of what CFS patients have had to deal with for the last 20 years, being denied the one drug that seems to have the most benefit for patients.

If the analysis shows that xmrv+ or hgrv+ patients responded well to ampligen, hopefully that will lend more support to phase III in what has been a terrible go at FDA approval for hemispherx.

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sparkle7
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I'm not trying to be argumentative or ruffle anyones feathers... I understand. I just want it to be clear that we can all be on the same side here.

It's not about mine is worse, etc. In the end... it's really tricky to know what we are all dealing with. It's very complicated. We have not gotten enough support over the years for how much we have all suffered.

In comparison - AIDS research got huge funding... Why were the rest of us ridiculed & left behind? It's hard to comprehend without coming to some strange conclusions.

It seems that if we are all united is some manner - it would be better. When everyone is separated in their own tangent, it makes it easier to divide us from getting the support we should be getting.

Support being disability money, insurance, research into better treatments & testing, media awareness, compassion...

I was reading about how these people were protesting at military funerals, saying that AIDS was God's way of punishing gay people (& somehow that has to do with people dying in the war in Afghanistan) & I realized that we still have a long way to go.

I know it's a bit off topic but it is important for people to consider XMRV or whatever they are calling it in regards to "clinical" Lyme diagnosis's. The symptoms of these illnesses do overlap.

The concerns of people with HIV may turn out to be similar to the concerns of people with Lyme, CFS, Fibro, cancer, autism, etc.

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Tincup
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"Tincup made a point bemoaning the potential lack of availability of ampligen vis-a-vis lyme patients..."

Actually, Tincup is trying to point out ALL the facts (with a little dose of reality) so people can make an informed decision.

I think that is fair and reasonable to do on a post pushing a treatment that is risky and can be very expensive.. and that isn't designed to address Lyme and coinfected patients.

Plus I am getting questioned about it, people are sending me lots of links and information about it to read.... so I needed to do the research anyhow.

And I am sure we can all agree we certainly don't want to see Lyme patients (any patients) devastated if they jump on the XMRV wagon to take a ride, especially if it goes nowhere... so they need to have available as many perspectives on the situation and as many facts as possible.

Especially if Lyme patients are considering forking out $36,000.00 for an unapproved treatment for CFS because they aren't getting well enough fast enough to suit them.

I don't believe I've ever communicated with anyone with Lyme and coinfections that didn't want to take the quickest route possible to get cured and get back to their life... so the potential to have some patients abandon their Lyme treatment too soon is very possible.

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m0joey
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Hey Tincup,

Thanks for explaining. I think you have the right intentions and I think we agree on the need to voice concerns about jumping onto any expensive and/or risky treatment bandwagons. However, I think right now a far more valid worry you should have for lyme patients is jumping into HIV drugs. Lyme patients can't get ampligen right now even if they wanted to because of the barriers to access I listed above.

OTOH they can get AZT, Tenofovir, and Raltegravir from most open-minded infectious disease doctors if they bring in the positive studies from WPI, FDA/NIH and a study showing in vitro effectiveness of those three drugs on XMRV by Dr. Ila Singh.

I'm glad some including Dr. Jamie Deckoff-Jones www.treatingxmrv.blogspot.com are taking the plunge so that the rest of us whom are anxious to see whether the rationale is there have something to chew on, but I don't envy them and would advise anyone wanting to follow in their footsteps to wait for clinical trials and if you insist on not waiting, to do your homework and work with a doctor who has knowledge of both AIDS and CFS.

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sparkle7
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I'm not jumping on any bandwagon... The XMRV & CFS connection has been in the mainstream media in the past week or so. Even Fox News & NPR... It was a major headline.

I don't think it's a fad thing at this point. It's been a long time coming. I do think there are many people who are ill with Lyme who might either or also have this retrovirus.

I didn't feel that anyone's posts were pushing ampligen... It's just one potential drug to look into. It's still all uncertain at this point. No one knows how all of this will pan out.

If a person has been ill for a long time & the abx didn't help - it may be worthwhile to consider XMRV. Especially, if they got non-conclusive tests &/or a clinical diagnosis.

It's just one more piece to add to the puzzle. It's all pretty new - so, we don't know where the solutions or cures will be, yet.

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kday
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quote:
Originally posted by m0joey:
I'm glad some including Dr. Jamie Deckoff-Jones www.treatingxmrv.blogspot.com are taking the plunge so that the rest of us whom are anxious to see whether the rationale is there have something to chew on, but I don't envy them and would advise anyone wanting to follow in their footsteps to wait for clinical trials and if you insist on not waiting, to do your homework and work with a doctor who has knowledge of both AIDS and CFS.

I got a bad vibe from reading that blog. Definitely not a Dr. I would see.

Well, I am glad they are doing better, but the arrogant attitude on that blog just bugs me. I'm not sure if others see it that way.

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sparkle7
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I didn't really see it that way (re: arrogant attitude in blog). I'm not about to rush off & take any anti-retrovirals, though. This is just one retrovirus... Who knows? There could be 100s of them that haven't been discovered yet.

I'll keep watching & waiting. Doesn't even make sense to get tested. There's no real treatments... I can't help but feel that we are so screwed. Life goes on...

Good luck to the brave souls who want to experiment with this.

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FunkOdyssey
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quote:
Originally posted by sparkle7:
I'll keep watching & waiting. Doesn't even make sense to get tested. There's no real treatments... I can't help but feel that we are so screwed. Life goes on...

I strongly disagree with this. Even if you do not want to use antiretroviral drugs yet, there is still great value in knowing whether you are positive. There are many psychiatric drugs and dietary supplements that have been shown to improve outcomes in HIV infection that could potentially be used to improve your health.

In another scenario, someone with chronic Lyme who has reached a plateau with antibiotic treatment might be relieved to understand that there is a good reason for this -- an immunosuppressive virus that they haven't addressed yet. This knowledge could save someone years of plugging away hopelessly with antibiotics, subjecting themselves to needless costs and side effects and risks while making no further progress due to the XMRV infection.

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sparkle7
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I can understand your point, Funk. I've been dealing with some form of this since the 1980's - if the XMRV theory is correct. I've been self treating for a majority of that time.

For me, it's not really going to make a big difference in calling it by another name. The discovery does really help! I just don't feel it's necessary to shell out big bucks to get the test right now.

I can take supplements on my own without a diagnosis. Not all that into drugs so I'll probably avoid them as much as I can...

I am a little concerned with some potential repercussions of having a fixed diagnosis - like denial of insurance or benefits, etc. You never know where this will lead in the future. I'm sure there is discrimination towards people with HIV to some extent. Maybe I'm just a bit paranoid..?

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sparkle7
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Also- I got this in my e-mail today about MMS.

2. Chlorine dioxide does no damage to the human body: The next argument was that chlorine dioxide goes forth and kills everything in its path including good and bad bacteria, parasites, viruses, fungus and also damages human body parts. But that is not so.

There are thousands of industrial corporations listed on the Internet that use chlorine dioxide for the very reason, because it can be very selective in what it destroys (oxidizes). When properly used at low levels of concentration it can select pathogens and not affect body parts.

For a list of companies using chlorine dioxide because it is selective, Google ``chlorine dioxide selective.'' Here is a quote by the US Gov EPA Http://www.epa.gov./ogwdw000/mdbp/pdf/alter/chapt_4.pdf

4.1 Chlorine Dioxide Chemistry: Chlorine dioxide functions as a highly selective oxidant due to its unique, one-electron transfer mechanism where it is reduced to chlorite (ClO2-) (Hoehn et al., 1996).

4.4 - Chlorine dioxide is a strong oxidant and disinfectant. Its disinfecting mechanisms are not well understood, but appear to vary by the type of microorganism.

4.4.1 - In the first disinfection mechanism, chlorine dioxide reacts readily with amino acids cysteine, tryptophan, and tyrosine, but not with viral ribonucleic acid (RNA) (Noss etal., 1983; Olivier et al., 1985) It was concluded that chlorine dioxide inactivated viruses by altering the viral capsid proteins.

-----

It's not for everyone but I thought I'd post this. Any thoughts?

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Tincup
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Glad you are understanding the need to point out all things involved.

MoJoey said... "I'm glad some including Dr. Jamie Deckoff-Jones www.treatingxmrv.blogspot.com are taking the plunge so that the rest of us whom are anxious to see whether the rationale is there have something to chew on,.."

I suppose you know, maybe not, (?) that this person did not test positive for the virus (nor did the other patient she is treating) ... so any improvement, if there is any, can not be attributed to the meds, the protocol or to its action or non-action on the virus in question.

In the name of science- even weak science- it is a futile experiment, in my opinion, for the goal of measuring results of a treatment that would be linked to the virus if you don't have the virus.

For example, if I ate ice cream and felt better, we couldn't say it helped fix a specific disease if I don't have that disease.

In my heart I do hope they get better... my wishes are for that... but the results of their efforts are not a reliable measure of the outcome of treating that virus with their made-up protocol.

Oh.. and I had to laugh at your unintentional oxy moron... it made my day actually, so thanks for that.

"open-minded infectious disease doctors"

[lol]

kday.. I don't believe that doc is treating patients- other than self and family... but not 100% on that.

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kday
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quote:
For example, if I ate ice cream and felt better, we couldn't say it helped fix a specific disease if I don't have that disease.
When I eat ice cream I feel better. I actually think it might be a cure-all.

Down with the sugar haters. I love ice cream! [Big Grin]

Hmmm... maybe I am going off-topic.

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m0joey
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Tincup,

Dr. Deckoff-Jones and her daughter did test positive for the virus. It's laid out very clearly in the "about me" section of the blog: "My daughter and I are XMRV positive by culture."

Also, she is not treating herself or her daughter. This is, once again, laid out in her "about me" section:

"Please note: I am not prescribing for myself or my daughter. My daughter is 20 years old and makes her own medical decisions."

If we are going to have any further discussion about retroviruses, can you please do some research about them first? Do you understand how antiretroviral drugs work? They inhibit retroviral replication. This isn't vitamin C or even an antiobitic such as minocycline that has been shown to have anti-inflammatory effects. That's their only mechanism of action, so if a person is feeling better, it's down to two reasons: placebo effect and inhibition of retroviral replication.

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Tincup
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When I saw this earlier comment in some of the writings to the blog writer from those performing the tests ... it led me to believe they were not positive for the virus at that time.

"...Even if you and your family do test negative, the serology will find evidence of infection (even if we cannot find the virus in your culture)...."

I also saw a statement a while back to the effect they were self-treating.

Please note- the blog doesn't contain all the items on it that I've read to and from the author since back in January on this topic. (Blog starts in April, several months later)

And since those two items I mentioned are now specifically pointed out in the blog (as you stated "laid out very clearly"), maybe they have since been tested and/or are now clarifying the self-treating comments?

You said.. "If we are going to have any further discussion about retroviruses, can you please do some research about them first?"

I've done it or I wouldn't be in here adding in the "reality comments".

Just because you don't agree with me on some topics doesn't mean I should think you haven't done your research and you don't know what you are talking about...

And vise versa.

We just have different motives and opinions. I am pleased you are sharing the information for folks. And I am sure you are just as pleased that I am filling in some of the blanks.

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Brussels
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Psycho issues: 'do I want to get better?', 'does everyone I love want me to get better?', 'Am I sick because of something that happened to my paretns or grandparents?' 'What does fatigue mean?, that I cannot do things on my own. Am I showing that for myself or for other people around me?'

Psyhco issues could not be the single cause but it could be one of the causes for illness. If the person tests for 'I don't want to get better', no matter what treatment you do, you won't get better in the end.

Terrain, bugs, psycho issues. Besides that, there's HIV question of infections getting there and killing almost everyone, of course.... No answer for that...

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Dutchie
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One question ?....how many of you have had your immune system checked by your treating physician ? "T" Cell count? Before and after treatment?
Dutch

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m0joey
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Before and after what type of treatment? None of us on this thread have done antiretroviral therapy yet
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FunkOdyssey
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BTW Olive Leaf Extract has been shown to inhibit replication of multiple different murine leukemia viruses. However, the 50% inhibitory concentration of calcium elenolate required is impossibly high. Its still possible that lower concentrations over an extended length of time would be helpful though.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC429361/?page=1

Certainly some people with CFS have reported improvement with OLE, might be something to it.

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Marnie
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Viruses do not have cell walls like bacteria.

I wonder if viral proteins could be present as a tiny part of bacterial outer cell wall proteins (long chains of amino acids) and when the bacteria are destroyed, a protein chain - tiny one made from amino acids - remains.

In other words can a bacterial infection -> an ongoing viral infection?

I've often wondered if HIV is "part of"/remaining part of the original syphillis spirochete.

I wonder if the genetic sequence of the proteins in HIV match a tiny portion of the genetic sequence of any proteins in s. spirochete?

The S. spirochete is actually much more complex than Bb.

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m0joey
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If the genetic sequence of HIV or MLV matches a tiny portion of the genetic sequence of s. spirochete, that would be interesting in an evolutionary sense but it doesn't not really suggest that the viral proteins are part of the outer cell wall proteins. There are many viruses and many bacteria that have similar genomic sequences. The retrovirus that DeFreitas found has 1 out of 4 identical genes to HTLV-2. Heck we share 98% of our genome with monkeys.

A much more sensible way would simply be to have researchers look for this. Considering that DeFreitas actually saw the retrovirus inside the mitochondria of our cells under a microscope 20 years ago, if this retrovirus is attached to any part of any bacteria, Dr. Mikovits and company should be able to plainly see this.

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D Bergy
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Another study that implicates the murine norovirus and Crohn's disease.

If you have symptoms of Crohn's and Lyme, you may want to consider this as a possibility.

http://www.the-scientist.com/blog/display/57509/

I have Crohn's, so this was of particular interest to me. It also fits in nicely with what i have deduced about the cause of the disease.

Dan

Posts: 2917 | From Minnesota | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
sparkle7
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I'm not sure if something that is anti-viral is also anti-retroviral (re: olive leaf extract). Also, sometimes it's better to take the whole plant because it has added chemical constituents which may be more useful overall. (?) Each plant is different, though.

Some other anti-viral supplements are monolaurin & lactoferrin. There are probably more herbs but I can't think of them off the top of my head right now. I believe that the CFS doctor - Dr. C is recommending artemesia + some glandular type extracts.

Perhaps, a few different herbs would work better since they may have a synergistic effect.

Interesting article, Dan. I'll have to read it more thoroughly later.

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springshowers
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Who treats viruses actively while trusting Lyme.
?

Seems like CFS and FMS and ME patients and doctors are on this subject way more than lyme community.

Anyone ever taken equilibrant ( oxymatrine )
?

Posts: 2747 | From Unites States Of America | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
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