posted
Is this the cure for ME/CFS? By JEROME BURNE, Daily Mail 11:33am 16th May 2006
A drug used to treat herpes infections has produced a dramatic improvement in patients severely affected by ME, or fatigue syndrome. Sufferers who for years had been unable to leave their homes now report being able to resume normal life.
This is a remarkable result for a treatment for this complex and controversial disorder that is thought to affect as many as 240,000 people in Britain and for which there is no cure.
A herpes drug may improve patients with chronic fatigue syndrome The results, reported at a scientific conference earlier this month by Professor Jose Montoya of Stanford University in California, involved 12 patients who had been given the powerful drug valganciclovir, which targets the human herpes virus (HHV-6). Nine of the patients experienced a great improvement. One of Montoya's cases was onetime champion figure skater Donna Flowers, now aged 50 and working as a physiotherapist, who lives in California's Silicon Valley.
"Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter," she says.
"I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year-old twins."
However, she is now back at work, treating young Olympic hopefuls, the nanny has gone and she's just started ballet lessons.
'Soaring energy levels'
"When Donna came to see us, her energy levels were around 10 per cent of what she considered normal,' says Montoya. "Today, she is functioning at 90 per cent."
One patient who could barely walk around the block is now cycling three hours a day, while another who could not even get down the stairs to breakfast is now up every day at 7am.
The professor reported his findings at a conference on the HHV-6 virus, which was held in Barcelona earlier this month.
While it's well known that some patients with CFS have signs of various viral infections, this is the first time that treating one of the viruses has been shown to be so effective.
"I was amazed by the results," says Montoya, who runs the infectious diseases clinic at Stanford. "Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system.
"I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load.
"I'd hoped it might help a bit, but I didn't expect the results to be anything like as dramatic. It was pure serendipity."
'Careful monitoring'
Valganciclovir is licensed to treat HHV-6 infections of the eye, which can affect transplant or cancer patients with severely weakened immune systems.
HHV-6 is not the same as the herpes virus responsible for cold sores. Most commonly, it causes roseola infantum in children, who get a fever and a rash.
"I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it," says Montoya. "It can have serious side-effects including anaemia, so you have to monitor patients very carefully. But so far none of the CFS/ ME patients have reacted badly to it."
All the experts agree that a lot more research will have to be done before valganciclovir can be widely used as a treatment.
"There is a long history of linking CFS/ME with some sort of viral infection," says Charles Shepherd, a medical advisor to the charity Action For ME.
"About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled."
Montoya agrees: "These were individual cases and it is always possible the results were due to a effect," he says.
However, that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement.
"That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference."
The possibility that valganci-clovir could eventually provide an effective treatment for some cases of CFS is just part of a wider picture. Over the past year, genetic research has provided a new understanding of the disease that could eventually lead to new therapies.
For years, the conventional view has been that there is no known cause, no way to diagnose it and no effective treatment.
Some doctors and health workers believe it is the result of social and psychological factors -- and best treated with psychotherapy and exercise.
Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.
"Anti-viral drugs such as valganciclovir may be allowing it to re-set itself."
Hooper was one of the speakers at a conference in London for ME Awareness Day on Friday. Another speaker was Dr Jonathan Kerr of St George's Medical School in London, who recently published groundbreaking work on the links between genes and CFS/ME.
"We've found that the genes in patients' white blood cells -- a key part of the immune system -- are switched on and off in an abnormal fashion," he says.
The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned.
What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research in Britain. The bulk of the funding has gone to the psychological approach.
posted
Thanks for posting this. Have not tried it. Was researching Th1 immune response in Lyme last night and found a very interesting article. Discusses balancing the immune system in a similar fashion to the way the drug in the article is theorized to work.
The article I found is written about CFS, but could equally apply to Lyme patients. Lots of good info regarding glutathione, G.I. function, detox, immune system etc. A very long article -- see first 21 of 32 pages at site.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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WildCondor
Unregistered
posted
Remember the BS diagnosis of CFS is just a cluster of symptoms labeled a syndrome because no cause has been found, or there are multiple causes going untreated. Active viral infections can be part of a fatigue-dominant condition, however, the viruses like HHV-6, EBV, CMV etc, tend to go back to dormancy after treatment fot Lyme and co-infections with antibiotics. Run on sentence but you get the point! No idea about the new antiviral, but I did use ganciclovir for a long time for Chronic Viral Syndrome/Stealth viruses and it did NOTHING. The whole time I thought I had CFIDS, I had Lyme, and only when I began Lyme treatment did I begin to feel better.
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bettyg
Unregistered
posted
Tempe, very interesting article.
Could you add the med name, valganci-clovir, to the topic line by editing/PENCIL icon?
Many of us do searches for info using the topic lines; by adding it here, when we type that name of med in, it should appear.
Thanks for good article and editing topic line! My extensive lab testings recently showed I have active HHV-6 and EBV, epstein barr virus, still showing up 37 yrs. after I go it!?
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
tempe, thanks for this info..My daughter has so many medical issues but she also has HHV-6 and has not been retested.
She was on Valtrex for quite some time and the Dr felt that would take care of it but now I wonder if her continued fatigue indicates it is still one of many players.
And I am not sure if the test even indicates if the virus is gone. I did also notice that it has some side effects which may not make it a good choice for us..But will follow this info.
Posts: 2360 | From SE PA | Registered: Mar 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Valcyte may cause cancer. Valcyte causes cancer in animals. It is not known if Valcyte causes cancer in people.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Ummmmm...altering the body's chosen immune response might not be a good thing.
Did ANYONE read about Humira in the news yesterday?
This drug works by reducing, to a great degree, TNF alpha, a proinflammatory cytokine in the TH1 pathway.
The "side effects" which have been known and indicated on the package insert..include TB and cancer.
Let me quote from the news release:
"The researchers analyzed data from nine studies comparing Humira or Remicade with placebos and pooled the results.
There were 29 cancers in 3,493 patients who had received at least ONE dose of either drug, compared with three cancers in 1,512 patients on placebos.
Serious infections occurred in 126 patients on drugs and 26 on placebos. They included pneumonia and cellulitis."
First...figure out exactly HOW it is working and then weigh the risks.
Feeling better does NOT equate with BEING better.
Keep in mind...MANY pathogens (disease causing germs...viral, bacterial, etc.) follow the glycolysis pathways (germs like sugar as much as we do!)...and others follow both the glycolysis AND cholesterol pathways.
MS could have...as a cause...different pathogens triggering a similar set of symptoms.
A few days ago on the phone, Tincup told me some LLMDs are finding MS+Lyme patients are co-infected with salmonella.
Bb causes too much LDL cholesterol to be made. Whatever is causing MS is destroying cholesterol, specifically destroying the myelin sheath which IS cholesterol that insulates our nerves.
The question is: WHY is TNF alpha being OVERPRODUCED? It goes down to the ROOT of the problem.
Mg low-> calcium influx-> TNF alpha -> angiotensinII -> angiogenesis (formation of new blood vessels...new circulation around a problem area).
TNF alpha and angiotensin II are PROTEINS...acidic. They are trying to help to clear an infection. So is CEA and PSA...cancer markers...proteins trying to help us out.
Before you put a stop to TNF alpha, better look closely at this:
Benefits of TNF alpha:
1. ``as more people are treated with TNF inhibitors over longer periods of time, tumor risk may become more pronounced.'' (May protect us from tumors.)
3. ``one mechanism of action of TNF-alpha ...on thyroid FRTL-5 cells is to inhibit calcium entry.''
PMID: 10092616
4. ``is actually a potent modulator of neurotransmitter interaction.'' hdlighthouse.org/see/immune/tnf.htm
5. ``the body does use tumor necrosis factor-alpha (TNF-alpha) to acutely fight infections. If patients are showing any sign of infectious disease, drugs such as Enbrel (that inhibit the effects of TNF-alpha) are temporarily discontinued.''
7. ``generally the level of TNF increases with aging. Lactic acid and unsaturated fats and hypoxia stimulate increased formation of TNF. Estrogen increases production of nitric oxide systemically, and nitric oxide can stimulate TNF formation. When oxygen and the correct nutrients are available, the hypermetabolism produced by TNF could be reparative (K. Fukushima, et al., 1999), rather than destructive.''
8. ``TNF-a is a molecule responsible for activating and proliferating cells of the immune system as well as protecting the body from abnormal cell growth.'' (same source as #7)
9. ``Activity of TNF-a is associated with inflammation, cytotoxicity (destruction of abnormal cells) antiviral activity, and the proliferation of immune cells.'' (same source as #7)
10. ``modulate cell proliferation and cellular calcium homeostasis.''
(If you go to the above website, please note the mention of spingolipid metabolites and keep this in mind: syhingomyelinase is Mg dependent)
PMID: 9195931
11. ``the level of TNF-alpha directly or indirectly regulates the production of borreliacidal antibody''
PMID: 12522038
12. ``The increased bone resorption may be due to an increase in TNF-alpha'' PMID: 14704297
13. ``no detrimental effects on normal neurons and can protect neurons when present in neuronal cultures during in vitro ischaemia...Once TNF's removed, neuroprotection is lost.''
14. ``TNF- a also causes production of sphingosine which can directly block the release of calcium from the sarcoplasmic reticulum and therefore depress cardiac contraction.''
15. ``suppression of insulin action in the liver resulting from TNF-alpha mediated suppression of tyrosine phosphorylation'' Gastroenterology 2004; 126: 840-848,917-919 (Keep in mind insulin ACTIVATES PFK which Bb is dependent on.)
16. ``Total elimination of the TNF-a cytokine apparently creates a less hostile immune environment...Although `Chronic-lyme' is a lympopenic disease, chronic lyme patients do not usually form sarcoid granuloma. Borrelia burgdorferi appears to be a pathogen with insufficient lympopenic activity to proliferate sarcoid granulomas on its own. However, together with other pathogens, it is frequently found as a component of sarcoid inflammation.''
17. ``the level of TNF-alpha directly or indirectly regulates the production of borreliacidal antibody''
PMID: 12522038
18. ``Polymerase chain reaction analysis indicated a protection rate of 95% in mice receiving tumor necrosis factor (TNF)-alpha.''
PMID: 8537658
19. These results are in line with previous experiments using cells of the adaptive immune response, indicating that strong T helper type 1 (Th1) proinflammatory responses might be associated with a
successful resolution of Lyme disease.
PMID: 15958074
What is the underlying CAUSE of the increase in TNF-alpha?
1. "CONCLUSIONS: These data demonstrate a relationship between angiotensin II and intracellular magnesium and calcium. In hypertension, angiotensin II-stimulated calcium responses may be related to simultaneously decreased intracellular magnesium concentrations."
PMID: 8390527
It appears:
(1)Mg ++ charge levels low -> increase in Ca ++ charge (not good) -> stimulates TNF alpha -> angiotensin II)
2. ``In severely Mg deficient rodents, it was found that there were greatly increased plasma concentrations of inflammatory cytokines.''
3. ``Severe Mg deficiency changed mineral homeostasis, induced membrane damage, increased lipid peroxidation and cytokine concentrations and reduced immunocompetence.''
PMID: 9558736
4. ``During the progression of Mg deficiency in a rodent model, we have observed dramatic increases in serum level of inflammatory cytokines.''
PMID: 1384353
5. ``Bone loss induced by dietary magnesium reduction to 10% of the nutrient requirements in rats is associated with increased release of supstance P and tumor necrosis factor-alpha.'' J Nutr. 2004 Jan;134(1): 79-85
6. ``Visual defects are common in surviving preterm infants. Increased levels of harmful neurochemical mediators that have been reported in these conditions include oxygen free radicals, excitatory amino acids, tumor necrosis factor-alpha (TNF-a) and in thromboxane A2 (TXA2) which are aggravated in magnesium deficiency and may be ameliorated by magnesium.''
7. ``An increased production of nitric oxide and of various inflammatory peptides - such as substance P, CGRP, and VIP - is observed in Mg-deficient rats.''
8. ``Magnesium (Mg) plays an essential role in fundamental cellular reactions and the importance of the immuno-inflammatory processes in the pathology of Mg deficiency...A significant increase in TNF alpha plasma level was observed in Mg-deficient rats compared to rats fed the control diet.''
PMID: 9989243
9. ``Patients with multiple EM lesions had greater symptom scores and higher serum levels of IFN-alpha, TNF-alpha and IL2 than patients with solitary EM.
PMID: 12928420
10. ``Magnesium deficiency resulted in upregulation of the immune system via TNF-alpha.
Bottom line: Mg low -> too much TNF alpha (acidic protein), drives Mg and other minerals lower -> more TNF alpha.
Vicious cycle.
Now...problem. The ATP pumping mechanism is not working. ATP pumps Mg INTO the cells. It looks as though Bb is causing the rapid ATP->ADP which stimulates PFK...triggering glycogen to enter the cell. PFK is phosphofructokinase...phosphorus, fructose (a sugar)...see?
Once again...will AZT...which appears to have the SAME chemical formula, but not 3-D structure as ATP work? Can our bodies breakdown AZT into its individual molecules...10 carbons, 16 hydrogens, etc. and re-arrange them to make additional ATP which would then drive Mg back into the cells, once again making Mg-ATP...which IS capable of INactivating PFK...forcing then the switch from glycolysis (sugar for energy) back to the better route oxidative phosphorylation route (using oxygen to make much more ATP...healing for us..not good news for Bb).
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
After rereading some material from Dr. C he mentions that in many borreliosis patients, HHV6 has actually been cultured{grown} out of their blood, including some of his own patients. That is the ultimate proof{gold standard} that they have the infection.
So this treatment could hold promise for some patients.
[ 18. May 2006, 07:23 PM: Message edited by: jarjar ]
Posts: 805 | From Utopia | Registered: Feb 2006
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Interesting thing is, the "responders" in his study had incredibly high EBV and HHV6 titers. Those of us who test positive for those viruses but with lower titers may not see the same results. It does appear to be a drug with lots of bad side effects.
I have had very good response from another antiviral, Imunovir, which has to be ordered from Canada. (If you put "cheney" and "imunovir" into google, you'll get some articles about its Th1 boosting capabilities.) It is extremely safe, in use for decades in Europe and elsewhere. Makes a big difference in my energy levels and gets rid of my perpetual sore throat as well.
Posts: 47 | From California | Registered: Feb 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
wondered if anyone had any updates on this treatment with Valcyte or a similar anti-viral.
Did it resolve your symptoms of fatigue & mind fog?
Can a viral condition such as EBV or HHTV6 be cured permanently or just toned done by these anti-virals?
Last post in June.
Thanks Dana
ps: sorry to sound paronoid but does the medical community grab this one med (anti-viral) & treatment because they don't believe in chronic lyme and treatments...but are maybe willing to believe in CFIDS?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
^ The medical community hasn't really grabbed onto chronic fatigue as an infectious disease either yet. Although they may be closer with that than with Lyme disease. Dr. Montoya said that he and his colleagues are hoping to prove this and change the way people think about chronic fatigue, and even change the name of the illness.
This step will help with things like Lyme disease. Not all CFS people have Lyme disease. For Lyme disease, it will help if Dr. Montoya sees more patients coming in with tick bite and rash history, so it might one day click something in his mind (as he is probably one of the few infectious disease doctors at a world-class academic institution that is possibly open-minded).
So, SF Bay Area folks, consider trying to see Dr. Montoya!! Even though he's not thinking much about Lyme disease right now. If you have CFS symptoms, and/or high HHV-6, EBV, CMV, or Parvovirus titers, he might be interested and offer to treat you with valgancyclovir for the herpes viruses, or another antiviral for the parvovirus. Then if he hears more about ticks and rashes, he might start connecting things.
The thing is, these docs need to think more about bacteria, and the Lyme docs need to think more about viruses.
I think the main reason they don't grab onto the Lyme stuff is the lack of good test results that "prove" something. (From labs that they believe in.) For this CFS study, they have "proof" of high virus titers from labs they consider reliable, so they are able to grab onto it better.
Posts: 98 | From San Francisco | Registered: Oct 2006
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Just read your post about Dr. Montoya. He is NOT open-minded about Lyme disease at all. I wish it wasn't so! In fact, he and the entire clinic have a very clear biased position on Lyme. Their belief system at this point is that Igenix is a bogus lab, and most Lyme patients are "misdiagnosed" - when in fact they have CFS or other issues. The first thing I received from the clinic a few years ago after returning from CT. and presenting with a CDC positive WEstern Blot was a hand-out on all the possible reasons why one might get a false positive Lyme test.
Having said that, I think he is a wonderful man and wonderful dr. and I'm excited for the work he is doing on CFS. I do know that several Lyme patients are enrolled in the study, hopeful that it will help. I am hoping greatly that they will keep track of those with the Lyme diagnosis and see what their outcomes are compared to the more 'straight' cases of CFS. It could be very valuable information!@!
Posts: 364 | From California | Registered: Sep 2005
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Just read your post about Dr. Montoya. He is NOT open-minded about Lyme disease at all. I wish it wasn't so! In fact, he and the entire clinic have a very clear biased position on Lyme. Their belief system at this point is that Igenix is a bogus lab, and most Lyme patients are "misdiagnosed" - when in fact they have CFS or other issues. The first thing I received from the clinic a few years ago after returning from CT. and presenting with a CDC positive WEstern Blot was a hand-out on all the possible reasons why one might get a false positive Lyme test.
Having said that, I think he is a wonderful man and wonderful dr. and I'm excited for the work he is doing on CFS. I do know that several Lyme patients are enrolled in the study, hopeful that it will help. I am hoping greatly that they will keep track of those with the Lyme diagnosis and see what their outcomes are compared to the more 'straight' cases of CFS. It could be very valuable information!@!
Posts: 364 | From California | Registered: Sep 2005
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posted
^ I know. I wouldn't be surprised if he weren't as open-minded about CFS before his first patient 3 years ago either. That antiviral success for CFS was by luck, chance, not what was expected.
Yes, if he starts seeing patients with initial flue, EBV, and HHV-6 who don't respond to the antiviral, then he might start thinking about other infectious agents. If those happen to be the ones who were bitten by a tick, and he has that data, maybe just maybe something will come out of it.
Posts: 98 | From San Francisco | Registered: Oct 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
prior to my lyme dx a MS doctor who "founded LDN" put me on 4800mg a day of acyclovir (yes, 4800). Thought the herpes virus was triggering the MS immune response.
Did well for awhile (two years) but joint pain, swelling manifested.
I think the LDN helped immune system wake up and the antiviral helped my immune focus on the lyme bacteria, and thus my lyme stuff came out. (just my thoughts)
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks dmc
for sharing your experiences on acyclovir
Wow that seems like a whopping dose. The average dose as I read from previous posts on valcyte is 450 2XD> I am assuming at this time the 2 anti-virals are similar?
I am wondering too about your feeling breifly better if maybe the anti-virals are not enough to knock out the infection all togeather...like some abx are with bb.
I also wondered if the mounted immune response by the anti-virals may back fire on lyme symptoms as well?
Thanks so very much again for sharing and hope you are feeling better
Hugs & healing Dana
ps: I am so sorry I put in my last ps question on my last post-I really did not want this thread to wander off topic -sorry
I just wanted an update on from lyme patients those who have tryed the anti-virals.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I just re-read the link given on a previous post on HHV-6 virus & testing. It explains how it is almost impossible to get an accurtae test result from anyone who has a chronic presentation.
After the incial infection- which is in the blood stream only within the first 2 weeks...then it seems to reside in the CNS.
Problem is most people when they are children are expossed to this virus . Most of the general population has some anti-bodys in their blood stream & it seems they are saying it is very unlikely to be able to show weather this is an active infection or past exspoure.
So where does that leave people who may want to try this anti-vitral? If their blood test does not show a quote "active infection" how can doctors & patients treat HHV-6.
posted
Annekke wrote: "I do know that several Lyme patients are enrolled in the study, hopeful that it will help"
This beyond makes me angry unless they disclose they've already been diagnosed with Lyme. IMO these people are very selfish because this little study can lead to larger studies funded by big Pharma.
However, if they get in the study and have the criteria and don't respond they just ****canned the whole thing. Montoya will lose interest and so will big Pharma.
Come on guys, all I ever read about is how bad LD's are treated and how unfair things are and now people are entering into a study they have no business entering into for their own selfish reasons. Unbelievable. I will take action immediately and hopefully this can be undone.
Posts: 52 | From California | Registered: Aug 2005
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posted
I'm guessing if there was a $1.3M (i.e. miniscule) funded trial for some kind of Lyme treatment, the bitties on here would be up in arms if say people with MS snuck their way in, but since it's Lyme, that makes it okay to enter into a study that may help a significant subset of another illness altogether even though the results of the study will probably be skewed.
Tell me there is one person on this board who objects to Lyme patients enrolling in a study for CFS patients, please. Anneke, tell these people you know they are slime. If they want to try Valcyte, let their own brilliant Lyme doctors prescribe it for them!
Posts: 52 | From California | Registered: Aug 2005
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posted
^ I would hope that the study is designed to somehow account for possible other coexistent diseases. Because, some of the people may not even know if they have something else like Lyme disease. At the same time, some of the people who think they have Lyme disease might actually be suffering from the EBV/HHV-6 instead.
Yeah, research money support is one thing. Hopefully not everything depends on one study. Hopefully if at least some percentage of people respond dramatically, that will be enough to do further research.
Posts: 98 | From San Francisco | Registered: Oct 2006
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posted
It's much more than that Grace. I'm sure these people will be asked to complete a questionnaire and one of those questions will be "Are you currently taking any medications?" "If yes, what?"
Do you think they'll be honest if they're on antibiotics for Lyme disease? Of course not because as Anneke pointed out, these people are enrolling "hoping it will help out."
Valcyte is relatively new and there is no way to know what kind of interaction it will have against the various antibiotics people here take. There is a decent chance if Lyme patients ON antibiotics enter the study the results will be flawed.
In addition, as you know, Valcyte can be very toxic. Lyme patients take toxic antibiotics which together with Valcyte can affect the blood markers which will be monitored during this study. What happens if say five entrants have to terminate treatment due to leukopenia?
To be honest, any person who makes that trial and is on antibiotics, pain killers, whatever is a complete fool. I hope they don't make the final cut.
Posts: 52 | From California | Registered: Aug 2005
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posted
^ uh, yeah, it would be pretty foolish to take any other medications along with the valcyte. yeah, i wasn't reading into it as lyme patients deliberately fooling the study to get some free meds.
Posts: 98 | From San Francisco | Registered: Oct 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
HiSemi-retired
Please let us know how you make out on your valcyte. I did some reading on it & just wanted to add it will be a very good idea to get a regular CBC and liver panal done while on treatment. It can effect your blood count & liver functions.
Good luck with your treatment and hope you can kick the fatigue!
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I sure wish you all the best as you begin the antiviral treatment. I can understand your anger about some Lyme patients being in the study, but I don't think their motives are necessarily bad at all. I think many, many chronically ill patients are quite confused - as are their doctors - about what is the primary cause of their symptoms.
If you had a consult with the 'esteemed' Stanford Inf. Dis. Clinic, and they told you that Igenix is bunk, and your viral titers are the real cause of your symptoms, it would be very easy to believe that and hope the antiviral will help. And the thing is... they may indeed be right!! Not right about Igenix, but right about the viral infection being the cause of symptoms primarily.
I don't blame these patients at all - they have been upfront with the clinic. And, like all of us who are chronically ill, are desparate to GET WELL AGAIN!!!
Anneke
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