Bringing the Heat: An ME/CFS (Chronic Fatigue Syndrome) Blog from Phoenix Rising

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Bringing the Heat: An ME/CFS (Chronic Fatigue Syndrome) Blog From Phoenix Rising

Chronic Fatigue Syndrome: A Novel ¨C A Review

A Fibromyalgia Doctor Steps Out: Dr. Dantini on Antivirals for CFS and FM

The Long Road: ¡°Chronic Fatigue Syndrome: A Novel¡± Author Returns to ¡®Health¡¯

XMRV Buzz ¨C the Infectious Pathogens Meeting¡­A Signature of Human Infection Found?

Chronic Fatigue Syndrome: A Novel ¨C A Review

Posted: 03 Apr 2011 12:06 PM PDT

¡°And it all began just one year from today¡±¡­. So begins Abbey¡¯s classic subversive ecoclassis ¡°The Monkey Wrench Gang¡± focusing on a gallant but quirky group of environmentalists that band together to stop the ravages of big Coal in the Southwest.

Caroline ¡¯s gripping portrayal of a small communities fight for health (and justice) in the face of a mysterious disorder in ¡°A Chronic Fatigue Syndrome Novel¡± is not far removed from Abbey¡¯s creation. When the local country doc, Alistair, goes searching for answers she stumbles into a shadowy and even, at times, dangerous world of tainted government agencies and big corporations doing what they need to do to ensure their bottom line is met. Soon she and her band of compatriots are banding together to defend their health, properties and livelihood.

True or not it doesn¡¯t take much to dream up government officials ¡®colluding¡¯ with insurance companies to keep the lid on a million person tinderbox. Something, after all, (inertia? fear? lack of leadership? money??¡­take your pick) must explain the federal government?s strange unwillingness to even to begin to treat ME/CFS seriously for so long¡­ Conspiracy buffs heads will wag furiously as they read this book; others will probably furrow their brow and think bit more¡­

Where ever you stand on the ¡®reason for government neglect?¡¯ question, ¡®Chronic Fatigue Syndrome: A Novel¡¯ is sure to delight. A quick moving tale it¡¯s an entertaining introduction to a disorder a lot of people just don¡¯t know about. A nice blend of science and passion, it¡¯s just about the right length, and it¡¯s got a catchy story (people who aren¡¯t who they say they are, there¡¯s a love story, a death, a show down¡­.and even just as in Floyd Skloot¡¯s CFS novel, ¡®Patient 002¡ä a helicopter scene). Carol writes with the conviction of someone who did find an answer and now wonders, why it took so long.

¡°Chronic Fatigue Syndrome: A Novel¡± is an eye-opening entree for the uninitiated and a rousing read for those in the know. Highly recommended.

Caroline¡¯s ME/CFS Story: A Long Round- an ME/CFS Author Returns to Health

Chronic Fatigue Syndrome: A Novel¡± Website

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A Fibromyalgia Doctor Steps Out: Dr. Dantini on Antivirals for CFS and FM

Posted: 03 Apr 2011 12:00 PM PDT

Caroline ¡¯s gripping novel ¡°A Chronic Fatigue Syndrome Novel¡± portrayed a small communities fight for health (and justice) in the face of a mysterious disorder. When the lead character went searching for answers she stumbled into a shadowy and even, at times, dangerous world of tainted government agencies and big corporations doing what they need to do to ensure their bottom line is met.

Caroline herself has been looking for answers for decades and her fight, fraught with misdiagnosis, confusion and even doctor neglect, has been every bit as tumultuous. Unlike many people with ME/CFS, however, it does have a happy ending and the reason for that is Doctor Dantini.

Caroline¡¯s ME/CFS Story

Carol¡¯s treating physician, Dr. Dantini, demonstrates how large and diverse the CFS/FM universe is. A Florida physician treating FM and CFS with antivirals since the late 1980¡äs, with a book ¡°The New Fibromyalgia Remedy¡± out in 2008, and a website touting the viral causes and treatment of FM (and CFS) ¨C I was kind of astonished I?d never heard of him.

His website states that ¡± He specializes in the treatment of viruses that cause fibromyalgia(FMS)and chronic fatigue syndrome(CFS)¡± and that ¡°The advantage in diagnosing the viral cause of fibromyalgia(FMS)and Chronic Fatigue Syndrome (CFS) leads us to a logical course of treatment based on laboratory diagnostics.¡±

As he relates in his story Dr. Dantini had classic gradual onset FM/CFS. An ear nose and throat specialist and surgeon he slowly got more and more tired. First he put a couch in his office so he could take naps. Then he began getting headaches, night sweats and irritable bowel symptoms and his muscles and joints felt heavy, weak and painful. The worst for him, though, was the exhaustion. He tested positive for herpesviruses and six months of high dose antivirals and watching his food allergies left him healthy again.Now he runs an ear nose and throat and FM/CFS clinic. His treatment protocol consists mostly of antivirals and allergy treatments. His website states his fibromyalgia protocol doesn?t work for everybody but has an 80% ¡®success rate¡¯.Survey - In a survey of 25 patients in his book the treatment duration ranged from six to 17 weeks. Their year of onset ranged from 1975 to 2003.Their average self-reported ¡®health score¡¯ at the start (1-10) was 1.92 and at the end was 7.64. Although Dr. Dantini reported that younger was better the one person with a 1975 onset went from a 1 to a 9 and a person with a 1980 onset went from a 2 to an 8. Four out of the 25 improved little or at all.

In his book he states that once food allergens and viruses are treated 75% of his patients ¡®respond fully¡¯; their energy levels return to normal, their pain is gone (unless they have a pre-existing condition), their ability to sleep and concentrate improves and they are able to stop their pain and anti-depressant medications.Outside of the Box Viral Testing and Treatment

Physicians are taught that IgG results have no bearing on whether an infection is active or not but Dr. Dantini, Dr. Lerner and Dr. Montoya. All believe that very high IgG levels in the presence of illness often do reflect an active infection. Dr. Dantini believes antibody titers about 4 times what is considered normal ¨C reflect an active infection in a person with the symptoms of ME/CFS/FM.

Antibody

Normal

Dantini ¨C Positive

EBV IgG

..91

3.64

EBV IgM

..91

3.64

EBV Nuclear Antigen

1:10

1:40

EBV Early Antigen

1:10

1:40

CMV IgG

1.09

1.36

CMV IgM

1.09

1.36

These doctors diverge from other physicians on duration of antiviral treatment needed to be effective as well. Most herpesvirus infections in the population are quickly staunched using short courses of antivirals. Check out the prescribing information for Valtrex (valacyclovir) for genital herpes (1 gram twice daily for 10 days), herpes zoster (I gram 3/¡¯s daily for 7 days) and CMV retinitis (900 mgs of Valcyte 2x¡¯s/day for 21 days. ). Most doctors quail at the idea of taking high levels of these drugs for months or a year or longer. Why, they ask, would Valtrex be able to quickly stop a very visible and painful infection but not inhibit a silent one that has no visible effects? Dr Dantini focuses mostly on famciclovir (Famvir) and valacyclovir (Valtrex) and uses ganciclovir (Centovene) and valganciclovir (Valcyte) less, because of their side effects.

He notes that dosage varies but they generally need to be higher than is used to treat fever blisters and genital herpes and he tends to use similar doses to those used to treat herpes zoster (I gram/3¡äs daily). If there is no response he gradually increases the dosage.He does not claim to have found the whole answer to FM/CFS but does believe these usually overlooked viruses play a large role.

HERPESVIRUS ME/CFS SHORT OVERVIEW

Anecdotal Information - This is all very encouraging. It¡¯s clear that herpesviruses play an important role in a subset of people with ME/CFS but the field is clearly in flux and in the need of robust studies.

Dr. Dantini reports that 75% of his patients have increased herpesvirus (or other pathogen) titers and about 75% of them respond very well to antivirals (and the removal of food allergies). Dr. Lerner asserts that high percentage of his patients have them and has produced several studies suggesting the significant benefits antivirals can bring. Dr. Montoya has had excellent success with some patients and not with others.

Dr. Chia, on the other hand, appears to find more enteroviruses than herpesviruses and Dr. Natelson reports he rarely finds herpesviruses, Dr. devotes little attention to them in his book (On Hope and Healing) ¨C and uses transfer factor to treat them rather than antivirals. Dr. Cheney focuses more on enhancing the ¡°terrain¡± than in chasing pathogens.

Studies - The HHV6 Foundation has produced an overview of past studies which suggests that almost 47% of people with ME/CFS may have an active HHV6 infection. When more sensitive tests were used the percentage was closer to 60%. Last year a Kerr study reported a much higher degree of EBV activation in ME/CFS patients relative to controls but a Lloyd study did not find increased levels of any herpesviruses.

On the treatment end the small Kogelnik Montoya study in 2005 had astonishingly good results with a significant number of people showing dramatic results but the followup placebo controlled blinded study (not published yet) was less successful. Dr. Lerner has done the most work in the field and has promising results but some researchers have critiqued his study design and statistics.

What is really wanted and needed in this field are successful placebo-controlled, double blinded studies. Montoya¡¯s followup study was supposed to be that study but it¡¯s less successful results plunged Dr. Montoya into a intensive analysis of the results, dose, patient characteristics , etc.. He appears to have figured some things out and will reportedly release the study findings in the near future.

Responders and Non-responders - I asked Dr. Dantini if there are people with high antibody titers who do not respond to antiviral treatments.

¡°Yes, I¡¯m still working this out¡­.the antiviral treatment interferes with the replication of the viruses. However, for the actual destruction of the viruses the immune system has to step in, so if you have individuals that are so down that they can¡¯t help immunologically then the effectiveness of the medicines is marginal.¡±

¡°I have people that I¡¯ve treated for 6 months to a year and they¡¯re gradually improving but it?s at a snails pace because they were so sick to begin with; most of these people were bedridden, had high doses of narcotics just to control pain.¡±

On the other he has people who, like Carol, respond very quickly..¡±I have people who respond in 3-4 weeks but they¡¯re usually people who have not been sick for a long time and they¡¯re young? Young is a big deal.¡±

Dr. Montoya¡¯s Stanford website notes that from 30-40% of patients with elevated titers do not respond to even long term anti-microbial treatments. Dr. Lerner¡¯s recent study suggests that many of these patients may have other, undiagnosed infections such as Borrelia burgdorfii (Lyme Disease) and he proposes treating those infections could make the difference.

Non-infected group - Pathogen detection, even in this day and age, is still riddled with questions that make it difficult to assess how large the size of the non-infected group of ME/CFS patients is. Dr. Lerner and Dr. Dantini report that a large percentage of people with CFS or FM meet their criteria for infection. Hopefully the Lipkin/Montoya study which is looking at all known mammalian viruses ¨C will provide a firmer answer to the question of pathogen frequency in the blood.

The rubber meets the road when we talk about treatment efficacy in the ME/CFS community at large. Dr. Lerner and Dr. Dantini report higher rates of treatment success than the soon to be released Montoya study will report.

Dr. has been reported to state that in his experience somewhere around 30% of people with ME/CFS will respond to antivirals, which is ¨C assuming a 60-70% positive rate and the 30-40% non-response rate Dr. Montoya reported ¨C fairly close to Dr. Montoya¡¯s report. Dr. Lerner and Montoya would posit higher response rates and Dr. Lerner would note the importance of attending to non-herpesvirus infections as well.

Many questions - More clarity will require rigorous studies but there is some common ground; all these physicians appear to agree that high IgG titers can be indicative of an active infection if illness is present. They are a minority in a medical community which appears to focus on the fact that healthy people can have quite high IgG antibody levels as well.

There are too many other outstanding variables to suggest a consensus exists in other areas. Dr. Montoya believes an elevated viral antibody titer may be an indirect clue to the possibility that a virus is related to a patient?s CFS, but he is not clear as to what the threshold is and his threshold is different from others (e.g. EBV early antigen (EA) ? 160 and/or HHV-6 ? 320). Dr. Lerner appears to focus on specific antibody tests that others do not Both Dr. Montoya and Dr. Lerner look for pathogens other doctors don?t appear to look for or haven¡¯t found(herpes simplex). Dr. Dantini, for instance, does not look for HHV6.

There is even the question of which laboratory to use and the need to assess the laboratory¡¯s results; i.e., is it consistently reporting higher or lower than normal antibody titer levels? Montoya?s site states, ¡°Antibody tests vary from laboratory to laboratory. The laboratory director of the lab that does your test should be able to tell you how your values compare to the median of a normal population. The laboratory director should have these statistics from studies done to license the test.¡±

Dosing and duration could be issues as well. Some people respond to one antiviral better than another. One person with ME/CFS had a moderate response to high levels of Valtrex but then responded very well to Valcyte ¨C but only to high levels of that drug. Some people respond very quickly to drugs and some take much, much longer. Of course there¡¯s the potential role Ampligen could, if it¡¯s ever approved, play.

As part of their Research Initiative, the CFIDS Association has proposed creating standards for testing and research in order to decrease the obfuscation and put ME/CFS researchers on the same playing field. The pathogen research/treatment arena would be a great place to start. Given the plethora of results from several different sources the field shows real promise but needs a great deal more study to sort the different variables out.

More drugs are on the way - Dr. Dantini reported that the herpes virus drugs are all generic now and that wonderful incentive called the ¡®profit motive¡¯ has prompted drug companies to start working on new drugs. They are definitely needed. Some patients are simply too ill to take the current drugs at the levels and for the time needed; they can make progress but have to cut back to less than effective doses when side effects flare up. Newer, more effective drugs could mean lower doses and thus lower side effects. Better drugs could get at the infections buried deeply in the body more quickly thus cutting out really long (and expensive) drug protocols. They couldn?t come too soon for some of these patients.

Food Allergies ¨C a Hidden Menace?

Hidden, often delayed, allergies to foods have not gotten much play in the ME/CFS Community but some doctors are convinced they play a major role not just in CFS but in many other disorders. In his book The New Fibromyalgia Remedy, Dr. Dantini states that in his experience, ¡°identifying and removing food allergens can alleviate many chronic degenerative disorders? and related that his arthritic knee that appeared destined for a knee replacement cleared up completely after he removed food allergens from his diet.

In his book On Hope and Healing, Dr. writes that ¡°many autoimmune diseases have a food allergy component¡± and that ¡°In my experience, food allergy is one of the most commonly overlooked causes for a wide variety of conditions. ¡±

A Black Science - Some allergist are clear about how destructive food allergens can be but they?ve gotten no support from medical research funders in the U.S. Dr. Dantini said

It¡¯s a black science because we have by arbitrary definition decided that, in the United States, there is no other allergy to anything you eat other than IgE which means with peanut allergy you get hives or anaphylaxis. There¡¯s no research going on in the US. Most of the research going on is in Scandinavia or Italy.?

He believes hidden food allergies account for about 30% of his patients¡¯ symptoms. His guess is that they arise when damaged intestinal walls (leaky gut) allow food proteins access to the bloodstream -where they prompt an immune defense. In this scenario, any food you eat regularly could prompt a strong immune response.

Viral connection - What does Dr. Dantini think causes the leaky gut? An overactive immune system caused by a virus, bacteria, yeast or protozoa or some other uncontrolled illness. He noted that some people have allergy and health problems since birth ¨C apparently because of an impaired immune system ¨C or an infection but many others don¡¯t fit that mold.

When I find an individual who doesn¡¯t have that kind of a progression; i.e., they haven¡¯t had an allergy symptom from what I can identify and all of a sudden they begin having these kinds of problems, there has to be a reason for that. Very often they¡¯ve contracted one of these viruses and it¡¯s hyped up their immune system to the point where they¡¯ve started to develop sensitivities to things in their environment.

Things get worse and worse until they take up a life of their own and if you don¡¯t deal with those issues they don¡¯t get totally well. I think the way to look at this is that you have a chronic infection?whether it be viral or bacterial or protozoan and your immune system is trying to fight it off and it¡¯s not able to effectively do it so it keeps gearing up if you will¡­it¡¯s like being in a Prius with a stuck accelerator. You¡¯re accelerating down the expressway and you can¡¯t stop it and your immune system gets more and more aggressive and after a couple of years your environment becomes toxic.

Treating the underlying infection and the allergies they¡¯ve developed allows their immune system to calm down. I asked, ¡°If you treat the underlying infection do you still have to treat these sensitivities or will this over-response to the environment go away?¡±

He said he treats both but that if you wait long enough it will all go away, (although) it is a long process, and that the fatigue problems will probably disappear first. If, for instance, a person has IBS and CFS ¨C since IBS symptoms are often triggered by food allergies he said the fatigue problems will disappear first and the IBS symptoms will remain for a while .

Dr. Dantini Video on Food Allergies and Leaky Gut Syndrome

Other Issues

Stress - What about the stress issue? Particularly with EBV ? which has been shown to reactivate with stress even in healthy individuals, the stress issue will always come up. Although he had been burning the candle at both ends, a single stressful event didn?t appear to trigger Dr. Dantini?s FM/CFS initially. After apparently fully recovering, though, he relapsed after a stressful event (death of his father-in-law). Once he went back on the antivirals he returned to health. In fact, he has had several relapses following stressful events; each time antivirals have returned him to health. If his health starts acting up again and his CFS symptoms begin to return he takes a short course of antivirals. What about stress? He said

¡°I hear it all the time. At that point in my life I was teaching, I had two offices, I was operating at three different hospitals. I¡¯d be up at five am, operating at 7:30, and then off to one of my offices.¡±

He noted, though, that the disease cause far more stressors than anything that happens to people before it.

¡°the disease generates so much stress. If you can work and can¡¯t pay your bills and you¡¯re bedbound and you?re trying to get disability ¨C that¡¯s stress!?Stress in this disease is generated by the nature of the disease.¡±

Methotrexate? ¨C Carol had benefitted from methotrexate and she had had CFS for decades and her recovery was astonishingly rapid (six weeks) (She is still on the medication over a year later). I wondered if the methotrexate/Famvir combination was a particularly potent one. He was not, however, a fan of using methotrexate for most patients.

¡°Methotrexate suppresses multiple levels of your immune system. If you take an immune suppressant like high dose steroids or Humera or methotrexate it will tend to make you feel better but is it the way to treat this? I don¡¯t think so. I think treating any autoimmune disease with a chemotherapeutic agent is conceptually a bad idea.¡± The potentially serious side effects were another issue as well.

The Auto-immune Side - With all the immune activation I asked him about the auto-immune problem, and he said, I¡¯m starting to look at this from another perspective? When someone with rheumatoid arthritis or lupus comes in and will consent to viral test he said that ¡°curiously enough about the same percentage that have them in fibromyalgia have them in these diseases.?

These disorders are on the increase and no one knows why. I¡¯ve been in practice now for almost 40 years. When I was in practice my training was in large hospitals and we saw a lot of stuff. You had to look long and hard..maybe you wouldnt see someone with lupus for months. We thought of them as curiosity diseases¡­they were an oddity, They aren¡¯t any more.?

He suggested that increased communication and traveling has allowed the viruses that cause these disorders to spread. He also believes the reason outbreaks seem to be rarer now is that the viruses are simply everywhere.

Dr. Dantini¡¯s Website

Caroline¡¯s ME/CFS Story

Food Allergy Strategies

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The Long Road: ¡°Chronic Fatigue Syndrome: A Novel¡± Author Returns to ¡®Health¡¯

Posted: 03 Apr 2011 10:59 AM PDT

Caroline ¡¯s gripping novel ¡°A Chronic Fatigue Syndrome Novel¡± protray¡¯s a small communities fight for health (and justice) in the face of a mysterious disorder. When the lead character goes searching for answers she stumbles into a shadowy and even, at times, dangerous world of tainted government agencies and big corporations doing what they need to do to ensure their bottom line is met.

Caroline herself has been looking for answers for decades and her fight, fraught with misdiagnosis, confusion and even doctor neglect, has been every bit as tumultuous. Unlike many people with ME/CFS, however, it does have a happy ending and such provides Unlike many people with ME/CFS, however, it does have a happy ending and such provides hope.

It is also a fascinating story about a confusing illness that skirts the boundaries between diseases putting the patient in a kind of medical limbo and a tale of how a patient bucked the traditional medical system and was greatly rewarded by doing so. Caroline is not completely well but she is greatly improved. Would that all stories turned out this way.

A Long and Winding Road ¨C Caroline now believes she has had ME/CFS for many years but that would notion would come as a shock to many of her doctors over the years. Her health troubles started early with a diagnosis of rheumatoid arthritis (RA) at eight years of age. In some ways it¡¯s not surprising RA could be mistaken for CFS. RA is, after all, not a particularly easy disease to diagnose, fatigue is common and her rheumatoid factor was high but she would never exhibit some of the more obvious signs of RA. Doctors would remark, decades later, on what great shape she was for an RA patient ¨C no swollen hands..no joint dysfiguration.

It¡¯s interesting that the onset of rheumatoid arthritis, fibromyalgia and ME/CFS are sometimes associated with stressful events (infection, trauma, etc.) and Caroline noted that stressful events could set her back even when she was healthy ¡°My parents tell me that every time I had a stressful situation, afterward I would sleep forever. I was a musician and after a performance or concert I would sleep for days, they said.¡±

A Switch Goes On ¨C Still she was for all intents and purposes healthy. During her second pregnancy, however, she developed restless leg syndrome (in retrospect a clear suggestion she might fit in the FM/CFS spectrum), which disturbed her sleep and impaired her ability to relax and heal.

¡°I distinctly remember in my third month of pregnancy with my second child I developed restless leg syndrome and at the same time stopped being able to sleep soundly. For the next eight to 10 years I never had refreshing sleep. I always said I didn¡¯t have an off switch. During that time I was healthy in every other way and I ran,did weight lifting, played tennis, etc. on a regular basis.¡±

And Then Goes Off - But following a series of stressful events it was almost as if an overloaded circuit broke and her health shifted suddenly and dramatically.

¡°After a couple of particularly stressful events I remember the exact day I fell asleep reading a book. I woke up amazed that the sleep was so deep. Little did I know I would be sleeping the next 10 or so years non stop¡±.

It was if a dike broke and her health cascaded downwards.

8¡åI became sicker and sicker so that I barely could get out of bed after that. I would wake up to feed the horses and go right back to bed. Some days it was all I could do to feed the animals. My children were older during this time and did a lot of the chores. They didn¡¯t like it one bit. ¡±

Through it all she was still able to work from home. ¡°It was a huge struggle. They cut my pay but didn¡¯t fire me, although it was close. The Family Leave Act is probably what saved my job as did the fact that I had worked for the company a long while during healthy times and they saw the difference.?

Like many people with CFS she had her better days and her worse days.

¡°A lot of the years of sickness is a blur. A bad spell would pass and I would run around trying to do all the chores, etc. I hadn¡¯t done during the bad spell and then it was back to bed. That happened a lot. A lot, a lot¡±

Two of her last five years bedbound at times and she was plagued by some bizarre and troubling symptoms.

¡°I would be lying there and my whole body would flip up into the air¡±. An EEG with a strobe sent her into a seizure. MRI¡¯s showed significant brain lesions indicating some demyelination had occurred (yet she did not have MS). She was twice diagnosed with spinal viral meningitis and once was hospitalized. Her blood pressure was up and she?d been on antidepressants for years.

Decades of Mis-diagnosis ¨C Pay Off? ¨C All through it her symptoms were believed to be due to rheumatoid arthritis (RA) and viral meningitis. The RA diagnosis turned out to be a double edged sword; while it turned out to be inaccurate it did legitimize her in the eyes of the medical world ¨C allowing her to afford MRI?s and pathogen and other tests that would have been difficult with a diagnosis of CFS diagnosis. She noted ¡°if you get diagnosed with CFS you¡¯re screwed because they won¡¯t pay for anything but I was able to get MRI?s and the virus tests? In fact, to this day she¡¯s never been formally diagnosed with CFS.

Her rheumatologist wondered why a drug was helping her ¨C and that pushed Caroline to do some digging. Carol knew she had two viruses ¨C CMV and Epstein-Barr and found research indicating it was being used to treat a cytomegalovirus, another herpes virus.

It turned out that her titers to two herpesviruses were high.

150 > EBV Early Antigen IGG600 >EBV Nuclear AG ?750 EBV IGG Titer10 EBV IGM Titer.68 Cytomegalo Virus IGM13.20 >Cytomegalo Virus IGG

A viral trigger for RA has been proposed for many years and, Epstein-Barr virus, HHV-6 and parvovirus B-19, interestingly enough, are all candidates. RA patients often have increased antibody titers to EBV, increased levels of EBV infected B-cells, very high EBV DNA loads in their PBMC¡¯s, impaired EBV specific T-cell function, etc. In fact there is a good deal more evidence implicating EBV in RA than in ME/CFS but researchers are unsure if EBV activation causes RA or if it is caused by it or the other autoimmune disorders it appears reactivated in such as Sjogren¡¯s Syndrome and lupus

Caroline¡¯s rheumatologist had no interest trying antivirals out on her but she thought otherwise. She said ¡°I thought, maybe it is a virus problem and I flew down to Florida to see Dr. Dantini who¡¯d written a book about curing fibromyalgia with antivirals. He sees fibromyalgia and CFS as two sides of the same coin, one is the pain side and the other side more cognitive and fatigue. He also believes that rheumatoid arthritis and almost all autoimmune disease will be viral in the long run¡±.

She started Famvir (famciclovir) ¨C 500 mgs/3 x¡¯s day in April, 2010 and is still on it. (Dr. Dantini also uses to fight valacyclovir (Valtrex) to fight herpes viruses and sometimes valganciclovir (Valcyte) and ganciclovir (Cytovene). Early on it was tough ¡°the very first thing that happened was that I got so much worse that I couldn¡¯t get out of bed for a week? She hung in there and once that was past she had a very, very quick response to the drug stating she quickly began to feel like a new person. It wasn¡¯t six weeks and I was so changed that people were like ¡®what happened to you¡¯?¡± The difference for her has been ¡®night and day¡¯.

When I noted my tendency to have emotional /physical reactions to the littlest things she noted that that her oversensitivity to events had just dropped away. ..and she was no longer on antidepressants. ¡°From the time I started taking the antivirals I just gradually stopped taking them and stopped taking them and forgot to take them (laughs) and now I don¡¯t take them¡±.

Her symptoms have largely disappeared and her blood pressure is back to normal as well. She¡¯s not completely well; if she works too hard or gets emotionally upset ¨C she¡¯ll have a setback ¨C but her definition of ¡°working too hard¡± has changed dramatically. She said she just went through a period in which she worked 12-15 hours a day for two weeks (and then she did crash ¨C but who wouldn¡¯t.).

Careful About Exercise - She¡¯s being very careful about physical exercise. ¡°I have not tried running since going on antivirals. However the first thing I did when I started feeling better was to go lease a horse. I can ride horses as long as it doesn¡¯t step over the threshold into anaerobic and I can do heavy lifting and shoveling like cleaning stalls.

Caroline had an amazingly speedy response ¨C many people on antivirals take up to a year to really see results but she wasn¡¯t only taking Valganciclovir, however, in Caroline¡¯s twisted journey through the American medical system she had picked up an unusual drug ¨C methotrexate ¨C that is rarely prescribed for people with ME/CFS.

A Piece to Her Puzzle? ¨C Caroline began taking methotrexate for her ¡®rheumatoid arthritis¡¯ in June 2005 and it remains a key part of her treatment protocol. Methotrexate is a powerful enough chemotherapeutic drug for her doctor to call it ¡®skull and cross-bones¡¯ medicine because of it¡¯s ability to ¡®take out anything¡¯. It can have significant side effects but she improved significantly on the small doses she was taking.

She said ¡°When I started the methotrexate I was much more functional and while I wasn¡¯t setting the world on fire, I wasn¡¯t close to being fired anymore either. If I don¡¯t take it I go significantly downhill. The methotrexate brought me into the world of the living and the viral medicine put me over the top into being a healthy, normal human again? which brings up the question could some people who are not responding particularly well to antivirals missing a key ingredient?- methotrexate?

(We recently heard about methotrexate in conjunction with the Swedish Rituximab trial. Carol tried Rituximab for her ¡®rheumatoid arthritis¡¯ and had fared poorly on it associating it with significant cognitive declines she experienced while on the drug. She called the drug ¡®bad news¡¯ and said ¡°I¡¯ve never been the same since¡±.)

Methotrexate targets rapidly dividing cells which may be why it¡¯s been used to turn down the over-reactive immune response in autoimmune disorders. Low doses of methotrexate have been shown to be very effective in managing (not curing) rheumatoid arthritis, Crohn¡¯s disease, and psoriasis. In these disease methotrexates inhibition of the enzymes involved in purine metabolism appear to play a role. This causes adenosine to accumulate and which inhibits IL-2 expression ¨C suppressing T-cell activation and turning down the immune response.

Interestingly, most of the interest around methotrexate and herpesviruses revolves around whether it might increase viral loads and several cases of EBV lymphoproliferative disorders have been linked with methotrexate therapy. Several studies, have suggested, however, that methotrexate does not result in herpesvirus activation.

New School- After her many years of misdiagnosis Carol is now surrounded with antiviral friendly physicians. Her DC physician Dr Ang , a family practitioner, HIV specialis. http://www.qstreetmds.com/ also believes in antivirals. She noted that he treated a woman with fibromyalgia who was bedridden for two years and is able to get up and around now. She reported that Dr. Ang believes that within five years antivirals will be standard treatment for these disorders.The Ghosts of Viruses Past - We did miss one surprising turn in Caroline¡¯s journey. According to most medical professionals she shouldn?t have been taking antivirals at all. In fact, the vast majority of them never would have prescribed them to her. Her high antibody titers were to ¡®memory¡¯ or IgG antibodies?-(what she called the ¡®ghosts of viruses past¡¯? ) not the antibodies believed to indicate an active infection?You would be very hard put to find a doctor who would put you on antivirals because of these tests.

Times may be (slowly) changing, though. These are precisely the antibodies Dr. Montoya is looking at in ME/CFS. From the CNID Website

IgG antibodies to the viral capsid antigen develop 2 to 4 weeks after onset of the initial infection and then persist for years, at gradually declining levels. Drs. Montoya and Kogelnik at Stanford have found that patients with elevated antibodies to VCA IgG and HHV-6 antibodies respond to antivirals, and the VCA titers dropped significantly with treatment, suggesting that elevated VCA titers represent active infection.

This test is not definitive because many healthy adults can have high antibodies as well but they believe that a high titer in a 45 year old means something very different from a high titer in a 20 year old.

Old School ¨C When Caroline showed up ¨C nearly well ¨C at her rheumatologists office that disconnect was too much for her Dr. to take. Faced with a logical impasse, instead of congratulating Caroline on her return to health and trying to incorporate this seemingly paradoxical information into her understanding, Caroline¡¯s doctor reacted angrily.

¡°She stated that I didn¡¯t understand what I was reading and there wasn¡¯t any possible way for me to understand since I don¡¯t have the training to understand the research it was horrible. I finally told her you do your patients an injustice by not thinking about this?¡±

Although it took her decades to find the right doctor Caroline was lucky in how quickly she responded to antivirals. The fact that her high Rheumatoid Factor reading has returned to normal after decades of being high suggests that viruses were behind her health troubles from the beginning. Her body was probably able to keep them mostly under control but her second pregnancy cracked open the door and a combination of stress and sleep problems appears to have blown it open throwing her into an amazing downwards spiral that concluded in several attacks of spinal meningitis, brain lesions and her full body spasms.

Perhaps most astonishing was her ability to quickly return to mostly normal health using antivirals. Many people with ME/CFS either don¡¯t have the opportunity to try antivirals or don¡¯t respond as quickly if they do but Caroline presents a tantalizing case of why this avenue of research and treatment needs much, much more attention.

The Dark, DARK side of Medicine

At one point in the book Caroline described a horrifying process some insurance companies used to deny claims. I fervently hoped it was fictional but it wasn¡¯t. She reported that a ruling (which UNUM is appealing) a Judge found that UNUM changed their claims units into ¡®profit centers¡¯ and that employees are paid according to their effectiveness at denying claim and that people with CFS, GWS, FM are denied the most often. She said 6% of UNUM¡¯s claims at one point were due to people with CFS, GWS and FM type patients and it¡¯s down to less 1%. That¡¯s the result of giving their employees interest in not accepting these claims ¨C to find any way they can to wiggle out of them.

¡°There is a vicious circle at work here; insurance companies won¡¯t pay for many patient¡¯s tests ¨C which means they have to come up with their own money to document their disorders. Many, of course, cannot -making it difficult for them to get the viral tests or MRI¡¯s needed to document their disability or provide proof for their antivirals. Here is where the inability to come up with a biomarker comes in?No biomarker means a problematic diagnosis and a big wedge the insurance companies can use to manipulate claims.

Insurance companies pay people to go to medical conferences and talk about the rising psychological aspects of CFS. I wondered about the low rate of funding at the CDC. Their own papers show high prevalence rates and high economic costs from CFS ¨C yet the funding remains pitiful. One has the sense they¡¯re throwing as little money at the disease as they can get away with. She didn¡¯t know why CFS funding was due to an entrenched bureacracy that just didn¡¯t care or if something else was going on but she did try to get disclosure papers for Dr. Reeves and failed. It wasn¡¯t due to a coverup at Reeves level; there¡¯s apparently a systemic problem with doing disclosure at the CDC ¨C something Senator Grassley is investigating.

The lack of disclosure goes further than that in the federal government. The federal government is supposed to do disclosure on the members of different committees but it¡¯s all kept internal ¨C they are not open to the public. (The only way she got Sharpe?s disclosures was because he worked for the American Psychiatric Association and they require disclosure! If not for that- there would be no information. )

The book suggests that there are researchers that have more to gain from having ME/CFS being labeled as a psychological disorder than personal prestige. Besides the obvious desire to be proved right and the financial benefits that accrue from that, I asked her if there are researchers who derive direct financial benefits from ME/CFS being seen in this way?

She reported that Sharpe, one of the primary authors of the 1994 Fukuda Definition, has been paid by insurance companies on three continents. She said ¡®Was he involved in that in 1994? I don¡¯t know the answer to that ¨C all I know is that today he¡¯s involved in UNUM (the largest disability company in the world) and that he¡¯s been used as an expert witness against CFS patients by law firms across the UK?. (You can see the disclosure forms on Sharpe on Carolines website).

Simon Wessely was not a co-author but he is cited five times in the 1994 definition. He get¡¯s funding from these charitable foundations but these aren¡¯t your ordinary charitable foundations; these charities are getting their money from a string of psychiatric hospitals in the UK.

Simon Wessely has also has worked with UNUM and wrote a report stating that doctors colluded with patients and made up information to get people to have disability.

Dr. Dantini: An FM Doctor Talks ¨C Treating FM and CFS with Antivirals

Chronic Fatigue Syndrome: A Novel ¨C a Book Review

Chronic Fatigue Syndrome: A Novel ¨C the website

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XMRV Buzz ¨C the Infectious Pathogens Meeting¡­A Signature of Human Infection Found?

Posted: 03 Apr 2011 10:11 AM PDT

I missed the meeting and the video is not up yet but got Dr. Mikovit¡¯s slides and provided a summary as well. (This is a little late but we¡¯ve had trouble posting to the website lately). The high point of Dr. Mikovits talk was her report of finding an human signature of infection in her XMRV samples.

Dr. Mikovits slides clearly state that XMRV is not an endogenous retrovirus but a new human virus but there appears to be a little twist (?) as one of her opening slides now states that ¡°How XMRV got into humans is unclear¡± (or did I just not pick that up before?). The slides quickly move from the opening paper to the Lo study, noting besides its results, that they have been unable to produce evidence of an infectious virus. (That, of course, is what we believe they are trying to do now ¨C either by growing the virus or showing that it is integrated into human DNA.)

Genetic Variability ¨C Then comes genetic variability ¨C a very important topic at the moment, The Lombardi paper stated that the gag sequences were basically identical to each other and to all published samples but here Dr. Mikovits states that further analysis shows more variability and in the next slide she shows how ¨C the same patient can have more than 1 ¡®XMRV¡¯ infection; one of which was not picked up by the first PCR assay. notes that 30% of ME/CFS patients have more than one strain.

Finding A Signature of Infection ¨C Then she presents a simple but seemingly compelling answer to the contamination question. Researchers know that the APOBEC enzymes in human B and T-cells switch out amino acids in XMRV rendering it unable to replicate (in T-cells). Right now a good chunk of researchers appear to believe that XMRV is a laboratory creation that got into human samples but not humans. Geneticists are arguing that low variability in XMRV indicates it is not in humans¡­but what about a more direct measure? What about showing that the XMRV in your sample bears evidence of being altered by human enzymes¡­..ie the APOBEC enzymes?

Finding sequences that are consonant with APOBEC editing is like picking up a signature indicating that XMRV has been in a human body. In the next slide she shows evidence of just that; ¡®hypermutation¡¯ of XMRV sequences found in B-cells taken from human samples¡­.! Dr. Mikovits focused on APOBEC editing almost a year ago noting that Grooms finding that such was going on enabled them to adjust their testing to better pick up XMRV. There are so many factors in XMRV that it¡¯s hard to know how any one will play out but on the face of it makes sense that any XMRV that shows evidence of APOBEC editing should have infected humans at one time. It appears to be a strong argument that XMRV she has found has infected humans.

Then she shows that B-cell lines in humans can carry versions of XMRV that have been altered but can still replicate. That¡¯s a big deal because other than the prostate nobodies been able to show a place where XMRV replicates. It¡¯s also intriguing given the fact that EBV replicates in these cells as well and with the interesting study on Rituxumab (B-cell inhibitor) going on in Norway.

She then states that the challenge is to develop assays that can pick up all strains of XMRV. Of course the big problem is for the WPI has been other researchers almost complete inability to pick up the first strain ¨C the one the WPI readily found in their original study ¨C and which presumably did not exhibit APOBEC editing. If the research world could find THAT strain they would surely look for other strains.

Satterfield argues that recent assays should be picking up more strains of XMRV and MLV¡¯s than ever. In an interview he notes researchers have antibodies to every protein and because of that they should be finding more strains of XMRV and a higher prevalence of XMRV than the Lomdardi study did. The most basic problem remains the inability of independent labs to find XMRV at all.

On the other hand ¨C Dr. Mikovits finding of a signature of human infection in her samples seems quite compelling¡­.

Antibodies - The next couple of slides show that antibodies to a variety of MLV protein detect XMRV ¨C something some studies disagree with. Later studies, of course, are using antibodies to XMRV ¨C not to MLV¡¯s; two recent studies have not found antibodies to XMRV itself in people with CFS. On the next series of slides Dr. Mikovits points to new XMRV specific antibody tests under development and the detection of XMRV in a number of patients with cancer (leukemia, lymphoma) and blood borne diseases. She also reported that their new culture tests are much quicker (4-18 days vs 21-42 days)than their old ones and discussed the DERSE test and the INTERCEPT virus removal system for the blood.

¡¯s Overview ¨C In his overview notes that Dr. Mikovits has found high levels of viral proteins in patients.

added a number of interesting points:

All 60 cell lines at the WPI have been tested for XMRV and are not contaminated.

Patient contacts including caretakers have higher risk of XMRV so this might be considered as a screening criteria for blood donations.

A question about XMRV transmission noted that an implication of CROI is that XMRV might be airborne. This is being investigated, but is not proven.

Mikovits is talking to Dr. Lerner about XMRV and herpes virus interactions. (No surprise there given the finding that XMRV is in B-cells.)

Mikovits describes ME/CFS as an Acquired Immune Deficiency.

A new high security lab may enable research they have not been able to do so far.

It was confirmed that Chronix have indeed claimed to have found fully integrated XMRV in ME/CFS, including flanking DNA on both sides of the virus.

Pathogenicity is not proven. However, it is suspected that antivirual methylation might be removed by epigenetic factors including those induced by the virus itself.

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