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

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

Wednesday, October 4, 2017

Dr. C prescribes Viread

I had my latest appointment with Dr. C last week.  Dr. C is my ME specialist doctor, who I've written about under the Equilibrant Label in this blog.

Viread

Dr. C prefers to treat ME primarily with oxymatrine, and secondarily, he prescribes various anti-viral prescriptions.  Lately, he's been prescribing the anti-viral drug Viread (tenofovir).  He states that about 1/3 of his ME patients who try Viread have experienced improvements.  In a few cases, the Viread patients have achieved remissions, but this is the exception.

Viread was developed and approved to treat hepatitis B and HIV.  Prescribing it to ME patients is an off-label use.  It can be toxic to the liver if used for years, and so Dr. C insists on regular kidney function tests for those who are going to try it.

I agreed to try it.

Unfortunately, however, I didn't think through my plans during my appointment, otherwise I would have suggested I delay taking Viread.  I recently started taking a fairly high dose of Valacyclovir to deal with chronic Epstein Barr Virus (EBV) -- 1G 3x/day.  At this time, I don't want to add another drug that could tax the liver and/or kidneys at the same time.  The higher dose of Valacyclovir is supposed to last 3 months, at which time I'm supposed to return to a maintenance dose.  My plan now is to start Viread after I go back to the maintenance dose of Valacyclovir.

Lab Results and Pancreatitis 

Yesterday I received the results of another set of blood tests given last week.  Yet again, my IgM antibodies for EBV were very high (about 6 times more than the upper limit of the reference range.)  IgG antibodies were of course very high as well.  This marks the 4th such positive test dating back to January.  

The blood sample was given within a week or two of starting the increased dose of Valacyclovir, so I'm still hopeful that the Valacyclovir will help bring this condition under control.  It is really starting to worry me.  Chronic EBV infections can lead to cancer and organ failure, among other serious health problems.  I need to find an effective treatment.  Health-wise, I'm still able to bring myself into work each day, but I have no energy for anything else.  

In the last week of July, I came down with pancreatitis (inflammation of the pancreas), which is probably related to the chronic EBV infection.  I've told both of my ME doctors, Dr. C and Dr. M, about this but they didn't seem too concerned.  Dr. C palpated the area and didn't say much about it other than it's a common symptom for people with ME and he's surprised it took this long (about 6 years) for me to develop this symptom.   

Today after a particularly fatty lunch, the pain in my pancreas (and to a lesser extent, through my abdomen) got much worse.  I decided to see my GP about it and perhaps ask for some imaging.  This is probably unlikely to lead to any helpful treatments, but I want to rule out any serious problems.  Most likely, this will end up being just another symptom that gets added to my rotating list of ailments.  

5 comments:

  1. Thanks a lot for sharing all this. Wish you the best!

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  2. Hello,

    I started with low dose Viread(/tenofovir) built up to full dose to tolerate it.Then added Isentress(/raltegravir) half dose built up to full dose to tolerate it.Combined those with Kaletra(/lopinavir-ritonavir) with full dose as was ARV treatment experienced by then. Added the meds when felt time was right and if felt they needed some help to maintain the effect. You feel jolts of upward improvement as time goes on. Easy to know/feel as time goes on when to increase/add other ARVs. Very much worth sticking it out, going slow and adding ARVs. Important not to take the full dose if intolerant initially and also important not to give up and then to go ahead and add the next ARV. These meds are made to be taken together.

    Myalgic Encephalomyelitis sufferer who had been ill for 20 years (50%ish on Bell scale)but now in full remission(97-100%ish) after 4 years on HIV-Aids antiretrovirals. VO2max at the same RER is the best measurement of improvement due to ARVs if you do not exercise/train in between the VO2max's performed once a year as improvement can only be down to the ARVs in that case and not to exercise..

    Good luck to you all.

    XMRV Mikovits/Ruscetti was not the XMRV Silverman all the negative teams looked for. It was a very clever decoy. We are not dumb. Thanks to Judy+Frank. We are not crumbs.

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    Replies
    1. Thanks for sharing this information about ARVs.

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  3. Hi Quixotic : My M.E. Team,

    My name is Anuj Agarwal. I'm Founder of Feedspot.

    I would like to personally congratulate you as your blog Quixotic : My M.E. has been selected by our panelist as one of the Top 50 CFS Blogs on the web.

    https://blog.feedspot.com/cfs_blogs/

    I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 50 CFS Blogs on the internet and I’m honored to have you as part of this!

    Also, you have the honor of displaying the badge on your blog.

    best,
    Anuj

    ReplyDelete
    Replies
    1. Thank you Anuj, I appreciate it. I'm very honored.

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