INDEX
Overview: HHV-6 Foundation.
The HHV-6 Foundation in a non-profit entity founded by Kristin Loomis and Annette Whittemore in 2004 to encourage scientific exchange between scientists and to provide pilot grants for promising scientific and clinical research.
To support efforts to develop better laboratory tests that can differentiate between chronic active and latent infection is the first priority of the Foundation. Since this virus can retreat to the brain and other tissues and disappear from the serum, finding a sensitive diagnostic tool is a challenge. The Foundation is working hard to promote efforts to develop better techniques.
To encourage efforts to find antiviral compounds that are appropriate for long-term use is another important priority for the Foundation. The Foundation has supported several in-vitro studies of antiviral efficacy at both commercial and academic laboratories, including a comprehensive screening done for us at the Rega Institute in Belgium and the Laboratory of Virology at the University of Paris in France.
A large international conference every other year is sponsored by The Foundation which also encourages collaboration between scientists. Our 2006 International Conference on HHV-6 & 7 in Barcelona was attended by 165 scientists from 19 countries. The Foundation supports basic research by funding pilot grants and has funded a dozen grants to date. (See Research Grants Awarded) These awards allow investigators the seed funds to gather preliminary data in order to apply for larger grants.
The Foundation maintains a repository of patient samples and valuable reagents that scientists need for research (purified virus, monoclonal antibodies, cell lines, etc.)
Dharam Ablashi, co-discoverer of the HHV-6 virus and veteran of the National Cancer Institute, is the Institute’s Scientific Director.
Kristin Loomis, a graduate of Harvard Business School, serves as the President and Executive Director.
NOTE:
Enteroviruses comprise 3 families of human viruses:
Cocksackievirus, echovirus, poliovirus.
They can infect the brain, spinal cord, respiratory tract, muscle and gut cells.
HHV-6 Overview,
http://www.hhv-6foundation.org/overview.html
Human Herpesvirus 6 (HHV-6) is an immunosuppressive and neurotropic virus that can cause encephalitis and seizures during a primary infection or when reactivated from latency in immunosuppressed patients. New research suggests that HHV-6 may play a role in several chronic neurological conditions including MS, mesial temporal lobe epilepsy, status epilepticus and chronic fatigue syndrome (CFS-ME). .. HHV-6 was discovered in 1986 in AIDS patients with cancer and lymphoproliferative disorders.
HHV-6A is the strain most likely to be found in MS, CFS and AIDS and cancer patients.
HHV-6B causes roseola, febrile illnesses and encephalitis in infants and reactivates in transplant patients, causing complications such as encephalitis, pneumonitis and liver failure. HHV-6B infects close to 100% of children by the age of two, causing mild flu-like symptoms and rash in some, but occasionally progresses to high fever, encephalitis and seizures. In most cases, the virus goes into latency. However, in patients with impaired immune function, the virus may persist in its active state at low levels for years.
While it is generally known that HHV-6 causes roseola and occasional seizures and encephalitis in infants, most physicians do not realize that HHV-6 can persist in a subacute form causing CNS dysfunction. HHV-6 can also cause selective immune suppression and alterations in cytokines that make it more difficult for the body to fend off cancer, intracellular pathogens, viruses and mycobacteria. Finally, HHV-6 has potent transactivating properties that cause it to stimulate other viruses, such as EBV, CMV and HHV-8.
Unfortunately, chronic HHV-6 infections are notoriously difficult to detect with current diagnostic tests. Molecular assays (DNA PCR tests) are useful for acute infections but are not sensitive enough to detect chronic infection because the virus remains active only in the tissues (often the central nervous system). This means there is very little free virus circulating in the serum. Serological assays (tests that look for antibodies instead of virus) are more sensitive but it is difficult to differentiate between active and latent infections since these antibodies fall gradually after an infection and can persist at high levels for several years before falling to lower levels. Also, serological assays cannot differentiate between the A and B variants.
In spite of the fact that these antibody tests are imperfect, elevated antibodies may be a patient’s only clue that a chronic infection is ongoing in the CNS, cardiac or other tissues. While an HHV-6 titer of 1:1280, 1:640 or 1:320 in a child or adolescent might be perfectly normal, a titer of this level could be a sign of chronic infection in an adult with clinical symptoms. (See Testing).
HHV-6 is the most common cause of mental confusion in post-transplant patients.
HHV-6 limbic encephalitis occurs in approximately 4% of transplant patients resulting in intermittent confusion, poor coordination, flat affect and somnolence.
HHV-6, especially the A variant, can also cause immune suppression.
Recent studies indicate that HHV-6 alters immune function by selectively blocking dendritic cell maturation and IL-12 p70 production (Lusso 2005). HHV-6 can cause an elevation in cytokines such as IL-6 contributes to encephalopathy in these patients. (Enoki 2006)
While HHV-6B is spread through saliva, the mode of transmission for HHV-6A is not known since it is generally not found in the saliva. In the US, most transplant patients (approximately 97%) reactivate with HHV-6B. In central Africa, however, 44% of infants are found to have variant A.
Little is known about the epidemiology of HHV-6A, an infection that is typically acquired later in life. HIV co-discoverer Robert Gallo calls HHV-6A a “progression factor” that speeds the course of an HIV infection to AIDS. Noting that the two “strains” are different enough to be considered distinct viruses, Gallo has proposed that HHV-6B be renamed HHV-9. (Komaroff 2006)
HHV-6 in CFS
http://www.hhv-6foundation.org/hhv6cfs.html
HHV-6 is an infection that can persist in the brain tissue long after the primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood. Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests, ...
.. one of the best tests for active infection may turn out to be .. the widely available and relatively inexpensive HHV-6 IgG antibody IFA test, using a high cutoff. While an HHV-6 IgG titer of say 1:640 might be perfectly normal for a 4 year old, or a teenager just over a bout of mononucleosis, it is not common in a 45 year old, and could be a sign of active infection. (IgM titers are rarely positive except after the primary infection. One study of CFS patients found that elevated antibody titers do correlate with active infection by culture. (See Testing for HHV-6)
Ultimately, it may be impossible to find direct evidence of the virus, and the only way to prove if an association exists is to treat for virus to see if the patients get better. This is exactly what infectious disease specialist Jose Montoya, MD from Stanford University did with 12 patients he treated for long standing fatigue and elevated antibody titers to HHV-6 and EBV. He established a high cutoff and then treated these patients with a strong antiviral; an astounding 75% improved dramatically. Some of these patients had been sick for over 10 years. He is now planning a placebo-controlled trial.(filled and active, 2008-09)
Most physicians are reluctant to use a strong antiviral without certainty that the virus is active. Antibody levels can remain elevated for years after the primary infection and in some cases, merely indicate a healthy response to a past infection. Montoya reasoned, however that since 97% of us have had our primary infection with HHV-6 by the age of two, highly elevated antibody levels in an adult could mean active disease. ...
Efforts to establish an association between HHV-6 and CFS have been complicated by the fact that several studies have been published using tests that don’t differentiate between active and latent infection. ...
In all, there have been 27 published studies on the association of CFS and HHV-6.The results vary according to whether or not the study used an assay that could differentiate between active and latent virus: ...
..the number of patients in the studies that have found an association between CFS and active HHV-6 infection (717) is much larger than the number in studies that have failed to find an association (48). (Komaroff, 2006).
When the most sensitive testing method was used, a test that measures antibodies to "early antigen" (EA) protein that is produced only during active infection, the evidence is strong for a role for HHV-6 in CFS: ...
CDC epidemiologist Dr. William Reeves conducted the study that did the most to dampen enthusiasm for research into the role of HHV-6 in CFS in 2000. He looked at latent virus in the cells by PCR and found no difference between 26 patients and 52 controls. This assay could not differentiate active virus in a patient from latent virus in a healthy control. ...
The “early antigen” antibody test is not available commercially, but the HHV-6 Foundation has been working diligently for the past two years to try to get this assay into production. Nested PCR is available in one laboratory. (See Testing)
Viruses have long been suspected .. Many investigators have reported enteroviral in CFS (Cunningham, 1990; Gow 1991, 1996; Bowles 1993; Clements 1995; Richardson, 1995; Richardson, 1995; Soteriou, 1996). Also, a number of studies have suggested that parvovirus can produce CFS (Kerr 2001, 2002; Matano, 2003).
.. found that post-infectious fatigue syndrome was present in 12% of the patients six months after their acute infection.
.. antiviral pathways are activated in CFS patients (Suhadolnik 1997, Gow 2001). Gene expression profiling has found an up-regulation of mitochondrial translation initiation factor EIF4G1, which is consistent with persistent viral infection (Kerr 2005).
CFS has been associated with reduced NK cell activity (Siegel 2006), Klimas 1990) , reduced TH1 cell activity and activated TH2, findings consistent with long-term viral infections. (Patarca 2001)
Viral infections reduce blood fatty acid levels, which are reduced in patients with CFS. If the body’s ability to synthesize essential fatty acids is impaired by chronic virus, cell membrane function could be affected which would explain many symptoms of CFS (Puri 2006).
..
antiviral treatments (Ampligen, isoprinosine, beta interferon, valacyclvir, valganciclovir) have been found effective in small studies (Strayer, 1994, Newport Pharmaceuticals; Lerner 2001, Lerner 2006,; See, 1996; Montoya 2006).
Good Doctor List., 2008-09-13
from patient submissions on the board.
Dr. Graeme Shaw in Los Gatos (not to far from Dr. Montoya at Stanford), who treats chronic health conditions and does some alternative medicine. .. Valcyte treatment .. is all for it because he had a patient who he was unable to help but who was later cured by Dr. Montoya.
Dr. Paul Dunphy at the San Francisco Preventive medical group.
He is also an alternative doc who treats chronic conditions. .. agreed to treat me with Valcyte after reading Dr. Montoya's study.
Dr. Kent Holtorf (or one of his associates) at the Hormone and Longevity Center in Torrance, CA claims to have experience using Valcyte. I saw Dr. Holtorf for CFS back in 2004, before anyone had heard of using Valcyte. I had a mixed experience with him. I was delighted that I finally found a doctor who would be aggressive about treatments to make me better. However I didn't like the fact that he talked a mile a minute, the appointments were over way too fast and he prescribed me one drug after another, each one crazier than the last, like I was a guinea pig. His appointment manner and treatment approach may have calmed down now that he has other doctors working with him, I don't know. The clinic is a 50 cent bus ride from LAX.
Dr Joe Brewer in Kansas City, MO, ... He does antivirals and treats for hypercoag and is also big on antioxidants and lots of other supplements. .. He put me on transfer factor, which helped. He wouldnt'; put me on valcyte ... cos he said he didnt' use it on anyone who hadn't had a family. Fertility issues.
Rich Van Konynenburg's work.
If I wasn't treating the methylation cycle block, I would still be a basket case. .. IT's a long slow, arduous road, but his protocol (which is adapated from Amy Yasko's ) is working.
Dr. Zuzana Foster, a rhemotologist in Walnut Creek.
She has been wonderful from the beginning to end. She is working with Dr. Montoya and based on out preliminary results, she is willing to start me on Valcyte in about a week. Two wonderful things about her. First, she was willing to to research on her own after I told her about the study. Right now, she is so excited about Dr. Montoya's work, she almost can't contain herself and she wants to know if it is something that can help her other CFS patients. At first we ordered a different test than what Dr. Montoya likes, but no matter, the HHV6 and EBV results were off the charts and she is sure the results from Quest Labs will be high as well. Because these are recommended by Dr. Montoya, my HMO is paying for everything.
Dr. (Rochelle) Shah:
I saw Dr. Shah at the Holtorf Clinic in California remotely via phone from Seattle for almost a year. She is knowlegable and a good doctor, though very busy. I believe she recently underwent a lawsuit as she suddenly pushed non-litigation paperwork before appointments and refused to prescribe Valcyte after 11 months of working toward that plan (first 6 weeks of Valtrex, then 12 weeks of Immunovir). Dr. Shah and the Holtorf Clinic doctors are very knowledgeable about CFIDS and work to address symptoms with supplements, hormones, etc. as well as address underlying infectious etiologies. I would recommend the clinic, but with reservations as 1) they do not accept insurance and are very expensive; 2) they are very busy and do not remember you personally; 3) Dr. Shah is no longer prescribing Valcyte to remote patients - though she suggested the other docs there would. They do testing through Quest, have their own in-house compounding pharmacy for things like T3, and also ship the Tietelbaum supplements.
A spin-off from the Holtorf protocol, the Tietelbaum clinics "Fibromyalgia & Fatigue Centers" are similar in streamlined protocol, but in my experience that is all the doctors do: follow protocol. In addition, as mentioned before, these clinics are a business and it is very obvious. They push weekly IV therapies that will put some spring in your step but are not a lasting solution (especially at $150 a pop not billable to insurance). Since Dr. Shah refused to prescribe Valcyte, I switched to the F&F clinic in Seattle (Bellevue) and am now seeing Dr. Eng, who is not a competent doctor, but does prescribe Valcyte. From her I got my 6 month Valcyte prescription and 6 month standing order for lab tests. I get the results faxed to me and have the doctors I work with check the results as I do not trust Dr. Eng.
All in all, YOU ARE YOUR OWN DOCTOR.
This is something anyone who has lived with CFS will attest to. It is very much worth searching for a good doctor, but even when you are dealing with clinicans who are leaders in CFS, you still have to educate yourself to the utmost degree with the latest information (as hard as it is with brain fog) and structure your own recovery agenda. Use these doctors as tool to do so, but ultimately YOU are the one who will make it happen. You know your body. You have to continue to pay attention to it and make note of what is working. Don't roll over and expect the right doctor to make you better. I see so many people doing this and giving in to CFS "management" instead of pushing for a cure. Really, if it's going to happen, YOU have to make it happen. The medical community simply doesn't know enough to have easy answers yet.
DR. TEITELBAUM REPORTS 70% SUCCESS RATE WITH VALCYTE
I take EVERYTHING this salesman/businessman/doctor says with a HUGE GRAIN OF SALT, but in his latest e-mail newsletter Dr. Teitelbaum claims that his Fibro and Fatigue Centers have now treated a whopping 100 patients with Valcyte and that 70% have had a "dramatic recovery":
"We are very excited about recent research by Professor Montoya which showed that a group of CFS patients with evidence of chronic viral infections with HHV 6 virus improved dramatically with 6 months of the new antiviral Valcyte. Our experience now with 100 patients who have gone through the Valcyte treatment at the Fibromyalgia and Fatigue Centers has shown that ~ 70% of these have improved dramatically. Some that I've talked to have considered themselves to now be healthy. I think this treatment is a dramatic leap forward for a significant subset of those suffering with CFS and Fibromyalgia. See Natural Immune Boosters and Antivirals."
.. as is usually the case with Dr. T there are precious few details and endless shameless sales pitches for his supplements and Fibro and Fatigue Centers.
Valcyte (valacyclvir) use, treatment, cautions,
2008-09-13 --- from patient submissions on the board.
Valcyte is very toxic and the entire process stressful, and, for me, i became extremely ill and needed the comfort of knowing I made the right choice.
He wouldnt'; put me on valcyte ... cos he said he didnt' use it on anyone who hadn't had a family. Fertility issues. ..
It seems like there is a significant sub-group of people with CFIDS that are resistant to current therapies (Valcyte included). -Valcyte, Nexivir, Ampligen -it seems like two criteria emerge with these treatment failures and those are: 1. people who got chronic fatigue gradually (gradual onset) and 2. people who have had CFIDS for a long time. ...
I have Premera, which is part of the Blue Shield network, and they are paying for nearly all of my Valcyte (my insurance report showed it cost them a little over $2,400 per month). I pay my $20 copay for each month's renewal. I called Premera before getting the prescription to see if they would pay and the girl I talked to looked it up in their system and said it was a covered drug and there would be no problem. I simply took my prescription in and had it filled. Premera never asked for diagnosis codes or justification - just paid for it! It's nice that my insurance is finally paying for something! ..
Valcyte has definitely taken me out of commission for 2 of the 6 weeks I've been on it (the 1st and 6th). The most debilitating part has been severe brain and spine pain which are unresponsive to meds (though out of desperation I discovered that marijuana works well). During the 1st and 6th weeks the pain has kept me sedentary because moving hurts. My boyfriend cooked me meals and I parked myself on the couch with books and movies. Aside from those 2 weeks the pain and fatigue has been managable and I have worked 32hr weeks and cooked for myself...
I took Valcyte for a year and, after an initial partial recovery at the six-month point, fell back to my pre-Valcyte level. When it became clear that it wasn't going to work, Dr. Montoya told me to stop taking it. ..
I get mine through Medco, which is the mail-order pharmacy.
It's $35 for a three-month supply this way. If I go to the pharmacy (such as CVS. RiteAid) it's $1200/month. Unbelievable, huh? See if your program has a mail-order option. I have Blue Cross, but it is a federal employee program, so that might be why we have the mail-order option. ..
My Blue Cross Blue Shield paid $1100, leaving me with $875 to pay - per month.
I contacted Roche, the maker of the drug, and this year I fall just below their cutoff point of $30,000 per year income to receive assitance paying for the drug. I don't know how much they will pay, they are sending me an application after a short phone interview. ..
I had herpetic keratitis (hsv-1 infection of the cornea/eye) when I first went to see Dr. Lapp, so I was already being treated with Valtrex for that. My EBV titers were still 1:20, even on 1000mg Valtrex 3x/day. I am happy to report that I just got my test results, and my HHV-6 titers have gone from 1:640 to 1:80 after 9 months on Valcyte and Nexavir. .. it would appear that both the HHV-6 and the EBV are not active. ... I'm still convinced that I have the chromosomally integrated kind of HHV-6, because as soon as I stop taking Valcyte, the spinal pain and pain in the hair follicles returns, so I will need to be tested for that when I go off of the Valcyte in three months. I'll also be sure to do the variant testing, since I'm pretty sure I have the A variant, since that it the one that goes after NK cell function, but we'll see.
Take Care,
-Jessica
gangcyclovir ... is the IV form of valgancyclovir
EBV and Enterovirus infection in the
RNA expression of CFS/ME patients.
http://www.cfids-cab.org/MESA/Kerr-5.pdf
.. One of the most important viral triggers of CFS/ME is EBV, and this virus very likely plays an important role in perpetuation of disease, because it is reactivated by stress [30]. Within the gene signature identified in this study, the following 12 human genes that we found to be upregulated in patients with CFS/ME have been shown elsewhere to be upregulated, either directly or indirectly, by EBV infection: NFKB1, EGR1, ETS1, GABPA, CREBBP, CXCR4, and EBI2 [31]; HIF1A; JAK1; IL6R; IL7R; and PIK3R1.
A particularly interesting gene is EBI2, which was upregulated in 55% of patients with CFS/ME, one of whom was a 26-year-old woman with CFS/ME triggered by laboratory-documented EBV infection 10 years earlier. The EBV genes BRLF1 and BZLF1 mediate the switch from latent to lytic phases of EBV infection, and during this process they transactivate many human genes. It is interesting that BRLF1 was identified as being overrepresented in the transcription factor analysis and that IgG specific to the Zebra protein (the BZLF1 gene product) has been reported previously in patients with CFS/ME [32].
Enteroviruses are another very important viral trigger of CFS/ME [33].
Upregulation of EIF4G1 transcript variant 5, which was found in this study and elsewhere [8, 13], is targeted during infection by various viruses, including enteroviruses, to subvert cellular machinery for the production of viral proteins. ..
Byron Hyde: Handbook of CFS
VIRAL CAUSES OF ACUTE ONSET ME OR CFS.
Thousands of physicians in North America, Europe, and Austral-Asia have expended considerable funds to study the possible viral causes of ME/CFS. Some physicians have their pet theories, but none has been proven to be correct. Viral antibody tests are a particular waste of time and money since all humans are a virtual bank of hundreds if not thousands of viruses, some of whose antibodies are reactivated with a wide range of viral challenges. Only in epidemic situations where a rising viral antibody titer can be captured is it worthwhile to do antibody tests.
Since acute onset disease has an incubation period of 4 to 7 days, usually at the lower limit, it makes little sense to ruminate about herpes virus 6 with an incubation of approximately 10 to 12 days or EBV with an incubation period of around 40 days. Even with a positive SPECT as a marker, we have not found a consistent viral cause. But having said this, I should add that we have never found any chronic viral infection by PCR on any patient with definite gradual onset CFS.
In acute onset ME patients with clear SPECT changes, however, we have had positive enterovirus PCR in about 10% of these patients for up to 3 years post-illness onset. The enterovirus that we have found has often been a new, nonlisted enterovirus similar to ECHO 25. This positive finding begins to drop at 2 years, and we have not found an elevation after 3 years. We have not found this virus in normal healthy controls with the exception of two normal patients who had received massive blood transfusions.
Another curious feature is that many acute onset ME patients have incredibly high polio 1, 2, or 3 antibody levels. They obviously do not have polio, but perhaps some of the viruses that cause acute onset ME are similar in nature to poliovirus. Even so, 10% of acute onset illness represents about 5% of the total number of ME/CFS cases. If it is an answer, it is only a partial answer at best. Enterovirus PCR is also very difficult to perform and many North American labs do not have the experience to perform this test accurately. ...
Dr. Paul Cheney, MD, PhD's Sept 2006 Talk in Texas.
http://www.cfids-cab.org/MESA/Lerner.html#Cheney
posted by jstefl, Link URL updated, 2008,
View streaming video: http://www.cfids-cab.org/MESA/CFS_Dist.htm
Purchase 2-DVD set: "CFS: The Heart of the Matter"
--- US $16 -- http://www.dfwcfids.org/videos/video200609cheney.shtml
a three hour talk ...
Began treating CFS-ME patients in Lake Tahoe over 20 years ago.
CFS patients often have
- a supernormal left ventricle squeezing pumping function.
- diastolic irregularities in which the heart does not FILL adequately.
- Grade 1 diastolic problems and seldom die from heart failure.
- Energy problem affecting the mitochondria in the heart.
- NOT a regular form of cardiomyapathy.
- Field of diastology in cardiology (new) applies to CFS-ME
- Squeezing down so hard (to try and get ALL the inadequate quatity of blood out) on gut blood during pumps can produce capilliary leakage for leaky gut syndrome, pushing metabolic toxins from colon into blood, overcoming liver, further depressing cardiac output, reducing cognitive effectiveness (brain/memory fog), dreadful feeling, mood disturbances (yet 40% have NO evidence of ANY psychological problems or depression).
- Lowered cardiac output predictably produces psychological CNS dysfunctions.
- continuing to work feel much worse than those who stop, yet,
- found a dynamic pattern of greater degradation after exertion, can't do ..
- affected skin, temperature regulation, ...
- awareness of loss of abilities begins 3 months after a viral infection.
- an immune system which cannot get the benefit to the need, because blood pressure and flow are too low.
- genes OK yet gene expression abberated by phenotype due to stress
- to overcome the phenotype compensatory pattern, up to a year delay**.
- better recovery potential during the first 2 years
- less recovery potential the longer they are ill
- poor breath holding ability for 50%, forces haemoglobin to release oxygen into cells, yet the cells either don't functionally receive or use the oxygen to produce energy.
- average 4 litres per minute blood flow
- sacrificed skin after gut through lack of cardiac output (3 litres/min)
- thyroid down regulates to conserve energy and pours T4 into urine.
- low blood pressure 90/60, 50% output, commonly
- not died yet live in agony
-
NON-CFS cardiomyopathy:
- 75% of Grade 2 diastolic problems usually die within 5 years.
- Dr. Cheney had Grade 2 and had to have a transplant.
- Improved cardiac function improves all other organ functions.
- Grade 2 often develops after an acute viral infection.
- Vasomotor improvement, pain reduction with drugs.
- More ATP energy is required for Relaxing. **
- Early filling equivalent to flushing CA out of cells
- A trigger uses little energy to begin the filling of the heart.
- Takes more energy to push the water into the dam pond, so, that it can rush down (pumping)
through the penstocks and turn the turbines, e-wave suction dilation of the blood into the left venticle.
Dr. Cheney has a cardiac insufficiency hypothesis.
He feels that a viral infection in your heart reduces your cardiac output, which in turn leads to virtually all other problems. ...
.. Two years before my CFS hit, I had a cardiac event, but was told not to worry about it. After my CFS started, I had major cardiac exams two years apart. On both occasions, My cardiologist initially thought my situation was very serious, and hospitalized me immediately. After thorough testing, she found no problems, but could not explain why my blood pressure had fallen to 80/50. After the second event, I was put on Midodrine to boost my blood pressure and sent on my way. It seemed really unusual to me that there was no reason for my low BP. I was told that this was normal, and not to worry about it.
Dr. Cheney states that the Parvovirus and HHV-6 are the two most common viruses found in the heart. That would explain why Valcyte only works for some.
I believe that viruses have been accumulating in my heart tissues for many years, and that because I was quite active, I was in a position to give up some cardiac output without serious consequences. It is very easy to rationalize a loss of energy when it happens over a long period of time. You chalk it up to aging, work, or whatever. It is interesting to me to read how so many sufferers were very active people before their problems began.
My best guess is that the CFS was triggered when the capillaries in my colon began leaking. This opened the floodgates for all sorts of bacterial and viral infestations. I have since had the right side of my colon removed.
Dr. Cheney explains the " tired but wired feeling", why women suffer more often, why cardiologists don't find the problem, and many other things. At the end he outlines his treatment procedures. Since this talk is two years old, he doesn't mention Valcyte, but does have some ideas that have helped me a bit.
Since I have been on Valcyte, I have taken my BP and pulse daily. I didn't know what to expect, and since I was on a blood pressure increaser, I wanted to make sure it didn't go too high. The first thing I noticed was that my pulse and BP seemed to stabilize. Before Valcyte, my readings were all over the map. My pulse varied between 60 and 95. My BP systolic pressure varied 25 points or more. Now, my pulse is 62 plus or minus a couple, and my BP is 110/60 plus or minus a couple. I am still on the Midodrine. I have also noticed that the area of redness in my throat has diminished by half or so.
..Drs. Peckermann and Natelson have also done research in this area.
Immunovir.
Singular post on Board, by Rochelle, Jul 15, 2008
I am surprised to see very little written on this forum about Immunovir.
It is an immune modulating drug that induces natural anti-viral activity, so I will post this in both anti-viral and immune modulating forums. I'd like to share my success with it:
I developed CFIDS after contracting EBV 4 years ago.
I had no success with a course of Valtrex, so Dr. Shah (from the Holtorf Clinic) put me on Immunovir.
It is an immune-boosting drug that has been around for a long time and is very safe (just drink extra water to flush increased uric acid). For reasons not known to me, it is not FDA approved for use in the US, though it is used routinely for Herpes infections in Europe and Australia. You can read about it online - sometimes spelled with only 1 "m" Imunovir, so search for both.
Anyway, I began taking Immunovir in November 2007 and promptly experienced about 4 weeks of what I believe was Herxing. I don't even remember those weeks. (I am currently on Valcyte and my Herxing now is nothing like it was on Immunovir.) I stayed on it for 12 weeks (I think ... maybe longer). I experienced a (thus far) permanent improvement from this drug.
It's hard to classify, but I would say I made an overall 10% improvement that has been lasting since January 2008. My boyfriend insists that it made a significant difference. He says that since then I don't fall asleep on the couch whenever I sit down. My wakefullness has improved (though my cognitive function not much). Since January, I do not go directly to sleep when I get home from work. I'm tired, but I have a few more hours of energy to make dinner and watch a movie. Also, I am not desperate for a nap in the middle of the day. It seems that 12 weeks of Immunovir has chipped the edge of the intensity of my fatigue and improved my quality of life - without fluctuation, for over 6 months now.
Immunovir (Isoprinosine).
Sources and Recommended Dosages for CFS
http://www.anapsid.org/cnd/drugs/isoprinosine.html
Paul Cheney MD (Balance the Th1/Th2 Immune System) and other CFS doctors recommend their patients take a product called Immunovir. Immunovir is not only very expensive, but it has to be ordered from Ireland, so it takes a while to get it.
According to Cheney, this medicine works best when you use this "pulsing" treatment of two months on, one month off, and the different amounts each week during the months that you are taking it, rather than taking it at the same dose all through the "on" months, or at the same dose continuously for six months. It may be that all immune modulators work like this, working better and for longer periods of time when they are pulsed.
Newport Pharmaceuticals - Markets both Imunovir and Isoprinosine
Dublin, Ireland
Ph. 353-1-890-3011; Fax 353-1-890-3016
www.newport-pharma.com
Immunovir is isoprinosine.
For patients in North America, there are some closer sources of for this immune modulator.
Outside of the United States, is is also sold as Inosine Pranobex, and Inosine.
In the U.S., isoprinosine may also be ordered from:
Pharmacia Sucre, S.A.
San Jose, Costa Rica
Ph. 506-00-233-6380,506-223-1715; Fax 506-00-233-9869
(There is no area/city code for Costa Rica so you may not need to dial the 00)
newportp@sol.racsa.co.cr
http://www.edenia.com/medical/sucre/Isoprinosine.htm
Isoprinosine is a nucleoside, one of the basic compounds comprising cells. It is a precursor to adenosine, an important energy molecule, and plays many supportive roles in the body, including releasing insulin, facilitating the use of carbohydrate by the heart, and, potentially, participating in oxygen metabolism and protein synthesis.
Isoprinosine is found in Brewer's yeast and organ meats.
Heat or moisture may cause the medicine to break down ..
Immune stimulants.
Zadaxin
(boosts cellular immune response; must be ordered from overseas with a prescription)
Proboost Thymic Protein
(similar to Zadaxin; packet of powder that is put under your tongue; boosts cellular immune response)
ImmunExtra
(replaces PineExtra - potent immune stimulant that speeds maturation of dendritic cells)
Immunopro
(whey protein with antiviral and immunomodulatory effects)
Russian Choice Immune
(reported to be a potent probiotic with system effects)
Echinacea (boosts immune response)
Leucozepin
(Chinese herbals that boost immune response, K cell production - used mostly for cancer patients)
Olive Leaf Extract
Fucoidan
http://www.vrp.com/articles.aspx?page=LIST&ProdID=2254&zTYPE=2
Burdock
http://www.herballegacy.com/Light_Medicinal.html
Pine cone extract:
stimulates dendritic cells, the most potent antigen presenting cells of the immune system.
... every immune booster I take makes me sicker. I have spent thousands of dollars trying the newest and greatest of the immune boosters (those on the list above) alll to no benefit. So, I have stopped just about everything but the Valcyte. I hope and pray that after 6 1/2 months on the drug I will start to improve one of these days.
The Lightning Process, Adrenaline excess.
Graziella Dinan 17th October 2007
john.dinan@blueyonder.co.uk
Hi, my name is Graziella and I'm writing from London, England.
I've been involved very closely with CFS: my husband John was a sufferer for two years; fifteen long months of which were spent in bed. He had CFS in one of it's most chronic forms: unable to sit up for more than 6 minutes unsupported, he spent most of the day lying flat in bed. He is a young man of 47 with two small children, the impact on our family was devastating. As you might of noticed I mention his CFS in the past tense and that is because I can safely say that he is not a sufferer. Seven weeks ago and still very ill, he received a very exciting form of treatment called The Lightning Process. After undergoing treatment for 3 days he was able to get up and walk a good half mile along the beach near to where he had undergone the treatment. I can almost hear the groans - not another miracle cure for CFS!! Well, we were extremely sceptical but I thank God every day that we were fortunate enough to have been told about the treatment, without it my husband would still be in bed now.
We learned during the treatment what causes CFS and how this brings about various symptoms. First and foremost CFS is an over production of adrenaline. This is what causes your symptoms: the muscle aches in your arms and legs, the brain fog, heart palpitations, sleepless nights, neck pain: the list is as long and as individual as you are. CFS sufferers produce adrenaline in an endless loop; whereas, normally, your body would dispel it in a matter of seconds. Why is this?
Well, in the CFS sufferer the brain has become hard-wired to produce adrenaline. We don't know exactly why some people's brain's become hard-wired, but they do. It is usually very highly driven individuals: so much for CFS sufferers being lazy! This hard- wiring of the brain is the key: the individual produces adrenaline resulting in the CFS symptoms as the CFS symptoms worsen so the patient becomes focused on the illness and the illness itself starts to spiral out of control: the more adrenaline produced as a result of being concerned about your illness the more ill you become and down you go to lower and lower levels. Who wouldn't be concerned about heart palpitations or not being able to hold your neck up? Especially when your doctor can't tell you why this is happening to you or give you any effective treatment.
In the worst cases I have heard of sufferers who end up in bed for years, some so ill they cannot tolerate sound or light and have to fed by relatives. I can also tell you that patients as ill as this have undergone the Lightning Process and are now well.
What about viruses?
There is strong evidence to suggest that CFS is linked to a virus and yes if you speak to the majority of CFS sufferers they mainly say that they think their illness was 'triggered' by a virus. My husband did have a very bad virus at the beginning of his illness and he underwent extensive tests at a virology department. Nothing came back positive. We are very grateful to the doctors who did these tests: there are several illnesses that present as CFS (e.g. Lyme's disease) but are in fact something else and must be ruled out before safely saying a patient has CFS. So, why did my husband contract a virus? It is our belief that the virus is not the cause of the CFS but the other way round: that because the immune system is suppressed by the adrenaline in one's body the CFS sufferer becomes susceptible to viruses.
How do you stop the adrenaline loop?
This is where the Lightning Process comes in.
You can train your brain to stop producing it by setting up a new neural pathway. In a relatively short period of time the old pathway - which has been hardwired to produce adrenaline dies away and the new pathway becomes effective. This is done through neuro linguistic programming.
... Focusing on your illness is the very worst thing you can do: you will definitely produce more adrenaline and don't whatever you do keep a diary of your illness!
The lightning process does work but it is up to you as to how effective it is.
It is a training process which you use to bring about a physical change in your brain. On my husband's course there were three other CFC sufferers: they all had similar positive outcomes. Our story is one with a very happy ending, my husband walked our little boy into school on his first day - something I thought I would never see. What was my little boy's biggest moment this year? When his father could pick him up in his arms for the first time in two years.
So what do the medical profession think of the Lightning Process?
Well you will be very pleased to know that the National M.E. center at Queen's Hospital in England have started trials with their patients. The Lightning Process has come to their attention.
Professor Findley who has worked tirelessly in this field for many years and Gerri de Vries who works closely with him have made great strides in treating chronically sick CFS sufferers. Finally, just a word of thanks to Amir Norris who treated my husband and Phil Parker who created The Lightning Process.
We are happy to answer any questions.
Please e-mail us at john.dinan@blueyonder.co.uk
I would also like to thank Susan Tuthill for bringing Kristin Loomis and this web site to our attention: anything we can do to help others fight CFS is of the highest priority to our family. We know only too well what a devastating and frustrating illness CFS can be and we sincerely hope that others will discover the path to recovery.
The Lightning Process by Phil Parker.
Dr. Jose Montoya's protocol.
http://www.vicd.info/
I am currently on bicillin for Lyme, as well as Valcyte for EBV and HHV-6.
In addition to bicillin my Lyme doc also wanted me to take diflucan, followed by zithromax.
I asked Dr. Montoya about this on my last visit. He said it was alright to continue with bicillin during my Valcyte treatment, but urged me not to begin diflucan or zithromax (or anything else) until after I finished with Valcyte. One reason was that he did not want to place too much burden on my liver. If that happened he said I might have to stop all the drugs - including Valcyte - for a period of time, which would put us back to square one in my treatment. ...
Drs. Jose Montoya and Andreas Kogelnik of
Stanford Hospital Infectious Disease Clinic.
The trial (now ongoing) will enroll 30 patients and is expected to start in the spring of 2007. The HHV-6 Foundation has supported this group to initiate and design the trial and Roche Pharmaceuticals, the manufacturer of valganciclovir, has agreed to fund the study in full. This trial was precipitated through a preliminary study conducted by Drs. Montoya and Kogelnik announced at the 2006 HHV-6 & HHV-7 Conference in Barcelona which reported the successful response to antiviral treatment experienced by nine out of 12 (75%) of patients chronically infected with human herpes virus 6 (HHV-6) and Epstein-Barr virus (EBV) and who were suffering from debilitating fatigue for more than one year (median 3 years, range 1 to 8 years).
In these patients antibody titers dropped four fold suggesting (a) these patients had active infections (b) elevated antibody levels can be a useful indicator of active infection in some patients and (c) a subset of patients with CFS and elevated antibody levels to HHV-6 and EBV may have an illness that is caused by reactivation of these viruses, and that is responsive to valganciclovir therapy.
Supplements to reduce symptoms.
.. virus cause "mitochondria damage' when they invade the cells.
There are even tests you can take for virally induced mitochondria damage.
It usually shows up after many years.
Start with a Urine organic acid and a blood Amino Acid test .. readily available.
We when to San Diego Metabolic diseases lab for the more refined test.
Vitamins CoQ10 Zinc .. help the cell continue to produce energy.
There a formula called a mitochondria thingytail you can find on line. ..
2008-09-xx NEWS
Finally, HHV-6 has an ICD-9 code!
Three years ago the HHV-6 Foundation proposed to the CDC Committee that they establish new ICD-9 codes for HHV-6 & 7 infections as well as one specific for HHV-6 encephalitis. Not only did they agree on HHV-6 & 7, they added HHV-8 as well. Please make a note of the following ICD-9 codes:
HHV-6 infection: 058.81
HHV-6 encephalitis: 058.21
Conference Report
The 6th International Conference on HHV-6 & 7 and
satellite conference on Viruses in CFS held in Baltimore June 19- 23rd
were very successful, with over 230 scientists and clinicians in attendance.
"
The International Classification of Diseases,
9th Revision, Clinical Modification" (ICD-9-CM),
Sixth Edition, issued for use beginning October 1, 2007
for federal fiscal year 2008 (FY08).
The ICD-9-CM is maintained jointly by the
National Center for Health Statistics (NCHS) and
the Centers for Medicare & Medicaid Services (CMS).
Health Surveillance and Epidemiology Division,
Centre for Health Promotion, Canada
code listing last updated: 2005-06-10
The 6th International Conference on HHV-6 & 7, June, 2008,
Summary Lay Report, pdf, 5 pages.
http://www.hhv-6foundation.org/Baltimore-HHV-6-Lay.pdf
HHV-6:
- infects a cell by attachment to a receptor on CD46, on a lipi raft.
- are assembled on multi-vesicular bodies (MVB) bubbles.
- proteins particular to it are U94, IE 1 and IE 2.
- multiplication escalates if other Herpes are present.
- can integrate with DNA, sperm/eggs, to be inherited.
- only in CIHHV-6 is it in every cell of the offspring.
- is disrupted by Valganciclovir or foscarnet in CIHHV-6 persons.
- is a cause of Encephalitis, sometimes.
- is associated with MS Multiple Sclerosis presence.
- in the CA1 region of the hippocampus triggers temporal lobe epilepsy.
- is encouraged by immune suppression drugs and herbs.
- can be triggered by drug allergies to result in thyroiditis, diabetes.
- is found in weakened heart muscle & inflamed arteries.
Conference on Viruses in CFS, June, 2008,
Summary Lay Report, pdf., 4 pages.
http://www.hhv-6foundation.org/Baltimore-CFS-Lay.pdf
Persons with CFS-ME experience more often than other people ..
- PIFS (Post Infection Fatigue Syndrome).
- Weaknesses in genes affecting inflammation (cytokines) interferon-y and interleukin-10 permit more severe infections which trigger or accompany CFS-ME breakout.
- Active HHV-6 infections.
- Inactive HHV-7.
- EBV provokes cytokine production which mirrors CFS-ME symptoms.
- an active Parovirus infection during heavy stress.
- Enterovirus RNA.
- Borna disease virus in found in up to 10% of CFS-ME patients.
--- It affects the limbic system, and is more often in horses, cats, dogs, cattle.
---- Amantadine, drug, may remedy it.
- Human endogenous (inheritable) retrovirus K-18 (HERK-18) provokes ..
- Neuroendocrine polymorphic (mutated) genes.
- 88 (white blood cell) genes are uniquely expressed.
- Distingishing immunological measurements found:
- increased numbers of activated (white) T-cells, eosophils;
- * impaired function of t-cells and natural killer NK cells;
- TH2 cytokine shift;
- increased levels of inflammatory cytokines;
- reduced amounts of molecule CD26;
- increased amounts of molecule NPY.
- Most people have inactive HHV-6 infections.
|