Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, September 13, 2012

Summary of 3rd Visit with Dr. C

I had my third visit with Dr. C yesterday.  I reported that the Equilibrant has undoubtedly helped me feel better by about 5% on my personal rating scale.  The increase may have been even more significant if I hadn't used the resulting increase in energy to engage in additional activities, leading to crashes.  But all in all, my crashes seem to be shorter and less severe on the combination of Equilibrant and ImmunoStim.

The Inosine experiment, however, was a failure.  For three weeks, I tried taking 2 Inosine tablets, 2 times daily, and I saw no improvement.  This wasn't a surprise, as apparently only 40% of the approximately 70 patients who tried Inosine with Equilibrant saw any additional improvement.

Amantadine

Our next step is to try a drug called Amantadine, which is currently FDA-appvoved for Influenza and Parkinson's disease.  Dr. C only recently began using it for ME patients, but he has seen some encouraging initial success after trying it on 20-30 patients.   

In a prior post, I wrote a brief preview of Amantadine based on what Dr. C described in my previous visit.  The gist of it is that Amantadine is supposed to prevent the double strand RNA viruses (enteroviruses) from replicating.  It does this by blocking the virus from contacting the ribosome inside the cells, by interfering with the internal ribosome entry sequence (IRES).  Dr. C explained that it is like blocking a key from its corresponding keyhole, thereby preventing the replication process from being turned on.  

Side effects of Amantadine, according to Dr. C, are minimal.  Any side effects reported were in "older patients" (not defined), and included slight cardiac arrhythmias.   

I'm supposed to take Amantadine for one month.  If I haven't seen any improvement after a month, I'm to quit and move on to the next drug...

Epivir

Epivir is an antiviral that was originally used to treat HIV patients.  HIV patients often initially experienced significant improvement with Epivir, but the virus would then adapt to the Epivir after a year and the drug would lose it's effectiveness.  For this reason, it was later used in combination with other antivirals to have a more long-lasting benefit.  Dr. C believes it can have a more long-lasting benefit for PWME's as well, even without combining it with another drug.

Dr. C states that Epivir is a fairly safe and non-toxic drug, with few significant side effects being reported.  The side effect known to Dr. C, lactic acidosis, is theoretical - Dr. C has never seen a patient who actually experienced it.  

Dr. C's studies have shown that Epivir can be effective when combined with Equilibrant for some patients, and when combined with Inosine for others.  It works in about 30% of the patients for whom he has prescribed it.  When it does it work, it seems to work quite well.  

Dr. C related several anecdotes in which patients had very good success with Epivir, including a story of one patient who was apparently brought back to nearly normal functioning by a combination of Epivir and another unspecified antiviral (Valcyte?)  Dr. C cautioned however, that Epivir is not something that normally cures patients...in other words, if a patient improves and then stops taking the drug, the virus will come back just as strong as before.

Looking to the Future

Dr. C stated that if these two options don't work, then he will be "close" to running out of tricks.  However, he is hopeful and excited about a class of drugs currently in development by the drug companies for the treatment of Hepatitis C.  When I asked why he believes that a drug for Hepatitis C would be effective for ME/CFS, he explained that Hepatitis C is also caused by a double-strand RNA virus (enterovirus), thus any research on drugs developed for any other enteroviruses should help PWME's.

Dr. C noted, however, that a fresh wave of politics and in-fighting between the drug companies is delaying the development of these drugs.  Apparently one drug company holds the secret to 1/2 of the magic formula, and another drug company holds the secret to the other half.  Both companies have figured out that if they combine their recipes, they can produce a very lucrative drug. But so far they have not been able to agree on which of the two companies will produce the drug and how they will share the profits.  


24 comments:

  1. I love these posts, absolutely invaluable. I'm always looking for new treatments to try and it's great to have detailed personal experience to help me decide on the paths to take.

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    1. Thanks Greyson, I'm glad that someone is getting some benefit out of these, LOL. I usually don't write very detailed reports after visits to my original ME/CFS specialist (Dr. W) but since Dr. C is widely respected, I thought it might be of interest to other patients to hear what his latest treatments and theories are.

      I hope you are doing well. I'm off to check in on your blog....

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    2. About halfway through a post on TMJ. Looks interesting so far, but these posts take a lot of time!

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    3. I heard that! TMJ is an issue for me too, so I'm looking forward to reading that.

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  2. Hi, Patrick -

    I am behind on blog reading - will have to look back to see how you managed the wedding :)

    I have never heard of Equilibrant - will have to look that one up.

    Inosine is a generic version of Imunovir...is that right? My son and I have had good success with Imunovir. I heard most experts recommend 6 pills a day. That was too much for me - actually makes my immune sytem symptoms increase a bit (sore throat, aches), but I do very well on between 2 and 5 pills per day. I have to take them before about 3 pm or I am too stimulated to sleep. I also need to space them out evenly during the day, rather than 2 at a time as recommended - again if I take too much at once then the immune systems increase again. Also, you are supposed to vary the dose - one week with 5 a day, one week with 2 a day, even taking none at all for a week (or Cheney recommends taking a month off occasionally). In fact, I am doing my week off this week...and it is killing me! I definitely feel much better on it.

    Well, I just wanted to share my experience.

    The other two things that have helped me most are low-dose naltrexone and beta blockers.

    Good luck in your continued search for what will work for you!!

    Sue

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    1. Thanks Sue. I replied on your blog.

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    2. I saw both replies, Patrick! I try to click the subscribe to comments button if I leave a comment that asks a question...but I don't always remember, so I appreciate the note on my own blog!

      Anyway, I think that inosine is a generic and slightly different version of Imunovir which is inosine pranobex. Imunovir is the brand name and yes, it does require a prescription. Dr. Levine prescribes it for me. It is not sold in the US (just because it has never gone through FDA approval for political reasons, not safety reasons) but it is manufactured in Ireland and distributed through a pharmacy in Canada - it's been used safely for decades in Europe and Canada. And, yes, I pulse the dose...oh, guess I mentioned that above. Thanks for the info on Equilabrant!

      Here's info on imunovir:
      http://www.rivexpharma.com/products_imunovir.html

      Oh, and it costs $100 a box (how long it lasts depends on how many you take, obviously - I think there are 100 pills in a box) - you only take it 5 days a week and take a lower dose some weeks so it's not as bad as it sounds. My insurance reimburses me for 76%.

      Sue

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    3. This is great information, Sue. Thank you so much!

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    4. Patrick -

      At our local support group meeting on Saturday, I got a little more info. I confirmed that, yes, inosine is slightly different than Imunovir (inosine pranobex), and that Imunovir does work for some people for whom inosine didn't work. I guess it is a matter of trial and error, just like everything else in this illness!

      So, it may be worth a try. Imunovir is definitely helping both my son and I - we took a break last week (as you are supposed to vary the dose to keep it effective), and we both noticed its absence. I am so glad to be back on it this morning!! Loving the energy and motivation I feel - more like "the real me."

      Sue

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    5. Thanks Sue. I'm going to ask my doctor for more information about Imunovir next time. There are so many things to try, but Imunovir is near the top of my list. I don't want to get to day when I run out of options and I'm still not improved! LOL.

      Take care,

      Patrick

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    1. You are correct, thanks Jeannette. It's been removed.

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    2. This comment has been removed by a blog administrator.

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    3. No problem, Jeanette. I sent you an email, but then deleted your post above with your email address because there are spam bots that trawl the internet for email addresses. Didn't want you to start getting a lot of spam!

      Take care.

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  6. Hi Patrick,

    I wanted to learn a bit more about the NKC test you took. Do you know if this is something "mainstream" doctors will run? Or is this something I would need to seek some sort of alternative practitioner to run the test?

    Thanks!

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    1. Hi Greyson,

      It's my layman's understanding that the NKC test if a fairly new assay, and is not yet widely used by mainstream doctors. Normally only CFS specialists order them, and even then, not all of them are aware of it. Also, some posters on PR believe that only Dr. Klimas in Miami knows how to perform this test properly.

      One of my doctors says that the medical community hasn't yet agreed on the standards for how this test should be performed and what the reference ranges should be, so it would be of limited value to compare your results to say...another person's results from another lab. BUT, it can be useful to track your own progress over time as long as you get the test from the same lab each time.

      I'm not sure if that answered your question. Regards,

      Patrick.

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  8. Hi Greyson,

    This is a tricky test because it has to be performed very soon after the blood was drawn. Focus Labs (both LabCorp and Quest Diagnostics outsource this test to Focus) doesn't always do that and so, the results are sometimes not reliable. UNEVX used to do this test, but they just stopped providing any kind of testing altogether. From my experience, they had huge quality control issues. I once had my blood drawn both for Focus and UNEVX just two days apart. Focus came back at 9 and UNEVX at 197. They used the same reference range (8-170). Probably neither test was accurate based on how I was feeling. Certainly, 197 was completely off.

    I think natural killer cell function is a great bio marker for us. Finding a reliable lab to test for it is the problem.

    Jeannette

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  9. Good to know about the NKC test Jeannette and Patrick. Thanks so much:)

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  10. Hi Patrick - I just found your blog and have enjoyed reading your accounts of your Dr C visits very much - they mirror my experience except that we have slighlty different order to our medications - I have just come off Epivir and will start Amantadine in about 3-4 weeks - once I have had time to wash out... unfortunately Epivir did nothing for me - I think the Equilibriant and Inosine have made a very small difference mainly in my crash recovery times - I certainly got flu like after starting each! - so I have continued taking them... tho as I am v sensitive to dose only one tablet each per day..

    Anyhow I just got back from seeing Dr C (last Friday) and he mentioned that he has something else in the works tho I think he said it is not ready for prime time yet... so do not worry - he is clearly still coming up with ideas on ways to help us! Sorry I cannot be more specific but I travel a long way (almost 400 miles) to see him, and am probably a bit more incapacitated than you as I cannot work at all (due to physical and mental fatigue) and rarely leave the house - tho I can if I need to - obviously! As you can tell I get distracted easily too which can make any dr visit a challenge to remember all thte details. Dr C v kindly writes down the main to do's for me!

    Please keep us posted on the Immunovir if you try it (I am going to try to figure out how to follow your blog!)

    BTW I became sick with flulike symptoms in a perfect storm of a very long stressful period of my life, together with a trip where I drank untreated water from Glastonbury well in the UK (an ancient holy site for 1000's of years!) I also have autoimmune susceptibility...

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    1. Queserah, I'm sorry it's taken so long to respond. My neuro symptoms are acting up and I just haven't felt like myself lately. Anyway, Thank you so much for getting in touch. Always good to compare notes with another Dr. C patient. I will definitely let you know what he has in store next.

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