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Update on Antiviral Medication and Comprehensive CFIDS Management – Notes from the Field

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Dr. Guyer is a family physician and Director of The Advanced Medical Center in Indianapolis, Indiana,* where patients are offered a unique blend of traditional and integrative therapies for ME/CFS, Fibromyalgia, and a number of other health-related problems.

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Antiviral medications have generated considerable scientific attention in the primary and adjunctive treatment of CFIDS and FMS – in the subset of the population with a viral component as part of individual etiology.

Through the years, I have noted a few good additive results with medications such as FamvirTM, ValtrexTM, and occasionally AcyclovirTM and AmantadineTM. Over the last year, thanks to the work of Dr. Jose Montoya at Stanford University, I have found that ValcyteTM offers another option that can really be the proverbial “icing on the cake” for many afflicted with CFIDS. Like other clinicians, my own experience with antiviral medications is that they are often very helpful with occasionally dramatic benefits, adding another viable alternative to the landscape of treatment options.

Some years ago, I had doubts that antiviral meds could add significantly to the management of CFIDS. Retrospectively, the doubts stemmed largely from becoming accustomed to observing good results with therapeutic strategies I was already using.

On many occasions, I have noted that comparatively simple treatments often deliver extraordinary results – Transfer Factor,1 oxidative therapies, Intravenous Vitamin (IV) therapy and vitamin B12 shots, to mention a few. Obviously, no protocol represents a “one size fits all” strategy. Clinicians are still required to find unique treatment strategies for unique patients.

Recently, I followed two male high school students who were very physically active prior to development of severe cases of mononucleosis. Following the episodes over the next six months, I noted that both students exhibited the classic findings of CFIDS. Both also responded almost immediately to a cocktail of IV Therapy, Transfer Factor and broad-spectrum nutritional supplementation. One patient eventually competed in an international martial arts competition in Germany, while the other returned to twice daily football practice in the heat of the Indiana summer – a challenge even for those without CFIDS!

In addition, my earlier opinions were based in large part on not observing impressive results with antiviral medications – at least not as good as I came to expect from other therapies.

Along the way, a good friend – Kristin Loomis, who in addition to being very knowledgeable is also the Executive Director of the HHV-6 Foundation – encouraged me to continue to give antivirals a try. I must say she, as usual, proved correct. Last year, she introduced me to the research of Dr. Montoya2, a Stanford infectious disease specialist; and since then I have seen often very good success with Valcyte.

In 2007, we began collecting data on the results of adding Famvir and Valcyte to individual treatment plans as clinically warranted. The formal results will be presented at the International College of Integrative Medicine meeting in Nashville in March 2008. In the meantime, I want to share observations that I have made over the last several months on very intriguing clinical findings that include the broad array of subjective improvements patients report while on antiviral therapy.

n One interesting case involves a gentleman undergoing treatment for bipolar disorder for years. During his last office visit, he remarked that since starting Valcyte not only did the CFIDS symptoms reduce substantially, but he also noticed more motivation – for example, mowing the lawn and enjoying it, something he had not done in years. The patient reported that his lithium dose was reduced from 1200 mg daily to 300 mg daily.

n Others have reported a restored sense of joy and humor – feelings absent for years, in addition to improved libido, decreased anxiety and depression, improvement in asthma and allergic symptoms, positive clinical changes in autoimmune disorders such as Crohn’s Disease, rheumatoid arthritis, and even one case of rare ALS type progressive motor neuron disease.

As our clinical experience demonstrates, our evolving understanding of the pervasive role viral activity in human health expands. We are beginning to understand that chronic viral activity may be present in the population at levels higher than previously assumed and not just involved in the etiology of CFIDS.

Can we predict which patients will do well with antiviral therapy?

Overall, it would appear that patients who fare better have a classic “viral” provoke history – i.e., they had a case of a “viral-like” illness, never got better, and over time keep going downhill. Duration of symptoms may be six months or 20 years. I have observed a few cases where these symptoms started after receiving a vaccine, such as the flu vaccine, and another case that appeared to begin after receiving a tetanus vaccine. In addition, patients will have consistent lab findings, including: depressed natural killer cells, low adrenal function, hormone deficiencies, elevated RNase-L3 levels, and elevated viral antibodies to Human Herpesvirus Six (HHV-6), cytomegalovirus (CMV), Epstein-Barr virus (EBV) and occasionally other viruses.

As a rule of thumb, individuals who experience milder symptoms of shorter duration [accompanied by elevated levels of] IgG (Immunoglobulin G) to EBV seem to do well with Famvir. However, patients more severely affected for a longer duration with antibodies more skewed to HHV-6 or CMV will often need Valcyte.

Younger individuals with shorter duration of symptoms tend to get better faster, while people over 40 or those with several years of symptoms may need a few months to start getting back on track. Often even after six months of Valcyte or Famvir, we will maintain some individuals on a low dose of Famvir or Valcyte in the 50 mg range (a dose we compound because it is not commercially available).

Another important issue is the necessity to take a comprehensive view of CFIDS.

Often, physicians desire to treat CFIDS simplistically like we might address a sore throat – one cause, one solution. Undoubtedly, theories come and go relating to CFIDS, but in my experience, physicians who get optimal results evaluate all contributing factors, listen well, and integrate therapeutic support strategies to address contributing issues, such as: adrenal dysfunction, sub-clinical hypothyroidism, neurotransmitter imbalances, nutritional deficiencies, endocrine problems (depleted levels of DHEA, growth hormone, testosterone) – to name a few.

In my experience, taking a more comprehensive approach accelerates the process of restoring health, while simultaneously diminishing the likelihood of feeling exhausted, depleted and miserable while taking antiviral medication.

The inclusion of antiviral therapy in CFIDS has in my experience been a great addition. Like any stand-alone therapy, it may not offer the big difference we want to see; however, when combined with other supportive therapies, it offers a giant step forward in restoring wellness in individuals with CFIDS.

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* The Advanced Medical Center in Indianapolis, Indiana, was founded in 1997 by Dr. Guyer. New patients are welcome. For more information, including glossaries explaining some of the therapies, nutritionals and tests mentioned, visit http://www.daleguyermd.com (where you will need to download flash player) or call (317) 580-9355. To listen to a detailed lecture on CFIDS/FMS, log onto Dr. Guyer’s website.

1. For more information on transfer factor, see recent articles in the ImmuneSupport.com Library such as “Transfer Factor and the Importance of a Healthy Immune System” by Aaron White, PhD, author of the highly rated new book A Guide to Transfer Factors & Immune System Health.

2. To learn more about the HHV-6 Foundation, research relating to HHV-6 in ME/CFS, and Dr. Montoya’s continuing Valcyte research at Stanford, go to the HHV-6 Foundation website.

3. RNase L is part of the body’s immune defense. When activated it puts a cell in the antiviral state – highly resistant to viral attacks, and ready to destroy viral RNA and ‘commit suicide’ if infected by a virus. For more about RNase L anomalies in ME/CFS patients, see “Dr. Kenny De Meirleir’s Breakthrough Research and Recommendations for CFS Testing & Treatment”

Note: This information has not been evaluated by the FDA and is not meant to prevent, diagnose, treat, or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.

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11 thoughts on “Update on Antiviral Medication and Comprehensive CFIDS Management – Notes from the Field”

  1. 01jean says:

    I TAKE ALOT OF ANTI VIRAL MEDICATION FOR CFIDS. I TAKE 1/4 FAMVIR. I HAVE TRIED VALCYTE I OFTEN TAKE RELENZA, FLUMADINE AND A PINCH OF TAMIFLU. MY PROBLEM IS THAT VALCYTE OR A WHOLE FAMVIR OR EVEN A WHOLE TAMIFLU CAUSE SUCH A MASSIVE DETOX THAT I CANNOT TOLERATE THEM. I USE A HOST OF HERBS, DHEA, HGH, THYROID, B12 AND ISOCORT (NATURAL CORTISONE) TO KEEP GOING. JEAN

    1. AndyTheJaw says:

      Whilst I am in the UK, with M.E. for nearly 23 years, I have found that the major element with viral infections has been the relapse if I have an acute viral infection. However, if I then use appropriate antiviral drugs as early as possible, the relapse is blocked. As to the antiviral drugs used, noting that the names in the USA may be different, they are as follows: –

      Ribavirin
      Symmetrel (Amantandine Hydrochloride)
      Imunovir (Also known as Isoprinosine, and Inosine Pranobex)

      Al three are used at the same time, where Ribavirin and Amantadine have an amplified antiviral effect when combined, particularly in dealing with Influenza. As to Isoprinosine, this has its main benefit through assisting the immune system rather than any direct antiviral effect.

      As to other infections, I did have Human Herpes Virus 6 as a chronic problem, but two months of using Isoprinosine cured that problem. As to using antiviral drugs over long periods, no benefit. Perhaps the chronic, intractable innsomnia is the major blocking element to getting better, where there are simply no drugs strong enough to even touch this issue.

      Andrew Porter

    2. NastyCFIDS says:

      I actually went to Indiana to be treated by Dr. Guyer with two i.v. antiviral medications, including Valcyte. On top of spending $15,000 on the trip and the treatment, I came back feeling way worse than when I went to see Dr. Guyer. He claims great results from his treatment, but I think it is unethical for him to be profiting from patients who are desperate to get well when the treatments that he uses are not adequately documented to be successful and safe at this time. I am anxiously awaiting Dr. Montoya’s further study of this issue!

      1. stschn says:

        I see Dr. Montoya and did 6 months of Valcyte and am now on Acyclovir. I have experienced a lot of cognitive recovery and after 21 years with this DD I’ll take any thing I can get and be happy with it. Were the side effects of Valcyte HELL oh yes but I would do it again. I also found that I couldn’t tolerate Valtrex so am now on Acyclovir with no problems.

      2. CFIDSRecovery says:

        I am sorry to hear about someone not getting better after visiting Dr. Guyer. But after reading the tone of the post I felt I had to post about this. I had CFIDS for 12 years (quite severe) and, believe me, their was no doubt about the diagnosis. Dr. Guyer worked patiently with me for over 2 years trying anything that might help (including many of my suggestions) and I slowly recovered to where I can do most of what I could before (basically went from 80% disability to 20% disability) Famir was a very important factor in the treatment. I also took doxyclycline every day at the same time and I seemed to need both. Unfortuately, the treatment takes time so going to see him for a few days would only be a start and it is not at all uncommon to feel worse for some time before feeling better. You really have to stay the course. In any case, rest assured that Dr. Guyer is very reputable, ethical, and caring. This is a tough condition to treat and he knows as much as anyone about how to treat it. It is an unfortunate fact of life at this point that insurance companies won’t reimburse a lot of what is needed for CFIDS which is the reason for the high cost to patients. I am convinced that they would SAVE money by paying for aggressive treatments like what Dr. Guyer offers rather than paying bills for visits to doctors who can’t help (and expensive tests that show nothing) for years on end.

    3. llbartist says:

      Hi! Great to read your post. I am seeing Dr. Montoya at Stanford and have been on Valtrex since June 25, 2007. I am on 1 gram per day now and still have a hard time functioning – lots of naps. Started on 3 grams for 3 weeks, then 2 grams for 3 weeks and now 1 gram to complete total of six months. Have you used any of the antivirals at high levels? I agree, the detox was HORID, but am hoping it is worth it.
      What herbs do you use? Is there another thyroid test besides TSH, T3, T4 that you have had? What kind of thyroid supplement are you on? I take Levothroid. What test do you have done to check your DHEA level?
      I guess we are all in this one together – experimenting and trying to figure it out. Thanks for any help! Lynn

    4. 01jean says:

      Hi Lynn, I taske cytemel 10 mg-5 2x day and I take more dhea than most doctors have heard of 65-75 mg day and i take armour thyroid 30 mg am and 15 lunch. The dhea I divide too 50 in am and up to 25 mg more when my heart is not irritated from toxins. I also take injectable growth hormone. I don’t use antivirals at high levels cause it just causes me to crash. I do mix flumadine with one dose of relenza often for flu type symptoms and sometimes just take one or the other. The valtrex just caused a hugh detox and I couldn’t handle the chronic fatigue or detox so i tried a smaller dose and couldn’t handle that either. The only thing i can handle is 1/4 dose of famvir but I also take specilty herbs for chronic fatigue like isatis folim and huzang (chinese) very often. I also take homeopathic antivirals and plenty of antiviral herbs and muscle herbs… which I get thru a talented acupuncturist who specializes in dosing the herbs and supplements to the patient not just generalizing. Well I’m still searching so let me know if you hit upon something great. Jean

    5. llbartist says:

      Thanks so much for the info – it is greatly appreciated. I am seeing Montoya on Tuesday and want to ask him about Famvir, flumadine and relenza, as well as getting a test for the DHEA level. I will let you know if I learn anything. Thanks again! Lynn

  2. stuff22 says:

    To Everyone,

    Please beware that this article while trying to provide relevant information has glaringly omitted RELEVANT INFORMATION. There are excruciating serious side effects associated with antivirals such as Valcyte. One only has to peruse the message boards on this site to get a general idea of the potency of these antivirals.

    I post this not as a deterrant to using Valcyte, Famvir, etc but to make people aware that this article contains a positive bias. Valcyte has been proven to work in a tiny population of patients so far. Larger trials are ongoing by Dr. Montoya but no definitive proclamations about its efficiacy can be made at this point.

    Please do your own research while consulting your doctor.

  3. baras says:

    post veru interesting
    canadian

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