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Gingergrrl's Journey with Famvir

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Jul 31, 2014.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Gingergrrl for what its worth, what i have found on antivirals is that although i have improved i still crash, but not as hard or as often so recover much quicker from these and this improves over time. I think we just have to keep plodding along, as if we have a choice lol. But along the way just continue to keep investigating other avenues also and keep trying to find those little things that can give u a few % improvement here and there.

    I cant really comment on the methylation stuff as i have never really had any positive or negative from them other then some help with b12 injections in the past and currently trying them again now.

    good luck,
    keep up with the updates as they may help others down the track learning from your experience as well as yourself.
    cheers!!
     
    Adlyfrost, zzz, Gingergrrl and 4 others like this.
  2. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    This illness f** ks our minds more than our bodies.
     
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  3. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @zzz I wanted to tell you that everything you have written to me has been incredibly helpful, more than you will ever know. I tend to ask a million questions, and you provide very thorough answers, so we are a perfect match! I am going to send you a PM (not today but soon when I am more alert) b/c I want to ask you more about many of the topics you have mentioned including Zantac, Magnesium, Florinef, Cardiac issues, and I could go on and on but don't want to completely derail my own thread!

    Also, @zzz, I wanted to clarify that I have never taken SAM-e as a supplement but was commenting from @Sushi's post that when she said that over-methylation can lower the natural amount of SAM-e, that made a lot of sense to me. I actually am feeling significantly better today and although it took three days, I feel that I am past the over-methylation experience and no longer feeling depressed or experiencing the horrible agitation or mood swings. I feel hopeful again that my treatment is back on track. But the over-methylation experience was incredibly scary and I hope to never go through something like that ever again.

    I also wanted to ask you why you were up until 6:00 am and hadn't eaten dinner yet?!!! I noticed you are in Oregon so we are in the same time zone. Is your sleep/wake cycle reversed? I hope you were able to eat and get some sleep and thank you again for all of your amazing feedback. I am going to compile all my questions for you for later on a day that we are both more awake! Thanks again.
     
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  4. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @heapsreal Thank you and I was starting to notice the same thing- that with Famvir, I could do more activity and recover quicker. I was off of Atenolol for about eight days and did not have the tachycardia or shortness of breath and felt about a 10-20% improvement overall (in less than one month on Famvir!) I believe that today is Day 30 on Famvir but I have my notebook in the other room.

    That is why the over-methylation debacle was so upsetting to me b/c I felt I had ruined all my progress. So I was back on Atenolol for three days but did not take it today (with my doctor's approval) and was okay again. I am still incredibly fatigued from the over-methylation incident but otherwise, today was okay.

    Can I ask what dose of B-12 shots you take and how frequently (if you are comfortable sharing?)

    Also, thank you for encouraging me to keep posting the updates and I really hope that they will help other people down the line who are considering Famvir, Methylation, or any of the things I am attempting to do. They are helping me to track my progress as well.
     
    Last edited: Aug 29, 2014
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't know if over-methylation can lower SAMe, just that SAMe is one of the primary nutrients involved in methylation, so if methylation is thrown out of balance, the level of SAMe may be affected. The ratio of SAMe (S-adenosyl-L-methionine) to SAH (S-Adenosyl-L-homocysteine) is very important.

    Sushi
     
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  6. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Although I don't know anything about the science behind it, I know that SAM-e is a good supplement for depression and I suspect when my methylation got totally out of whack that it messed up SAM-e and all my neurotransmitters in the process :nervous:. But, I feel like I am getting back on track now and very grateful for this!
     
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  7. zzz

    zzz Senior Member

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    Sounds good! I'll look forward to hearing from you.
    Yes, to me too, now that you've clarified it. @Sushi's recent post clarified this even more; she knows a lot more about this subject than I do.
    Excellent! The fact that you recovered within three days would seem to be a good sign; @Sushi mentioned that something like that could take more than a week for her to recover. But then she recovers, and continues to progress. So you seem to be pretty resilient, which would bode well for your continued treatment.
    Well, recently I've been getting to bed around 10 and getting up at 6. :)
    Unfortunately, that's 10 a.m. and 6 p.m. :( So yes, I guess you could say my sleep cycle is reversed. It tends to reflect my general state of health, and my recent trauma knocked it out. I should gradually be able to move it back, though.

    And now to get back to some earlier posts...
    There are many things that can cause tachycardia, so it's not possible for me to make a general statement here.

    For many people with ME/CFS, tachycardia is caused by low blood volume. Low blood volume is a type of anemia, and anemia is a well-known cause of tachycardia. It's the body's way of trying to make up for the lower number of healthy red blood cells by increasing the rate of blood flow. This is the type of tachycardia that I've always had, and magnesium does not help it.

    However, a magnesium deficiency can also cause tachycardia, regardless of the state of your blood volume. So if you have a magnesium deficiency and tachycardia, taking extra magnesium can either reduce the tachycardia (if there are other factors contributing to it) or eliminate it entirely, if the magnesium deficiency is the only cause. How do you know if you have a magnesium deficiency that is causing part or all of your tachycardia? There are various types of tests, but the best test is the sublingual magnesium test, where magnesium is measured in mucosal cells obtained from under the tongue. There are various companies that do this type of testing.

    Although this test is quite good, I am somewhat wary of this type of test in general. It will tell you accurately where you are in relation to the normal range, but that's the normal range for normal people. No one has done a study of what the normal range is for PWME, i.e., how much magnesium we really need. Based on the very positive response to magnesium by injection or magnesium by nebulizer by most people with ME, it's very possible that we need a lot more than healthy people. The best way to find out is if you can get your doctor to give you an injection of magnesium in the office. If it's helpful, you'll feel it immediately. Be sure that some sort of anesthetic is injected with the magnesium. Dr. Cheney's procedure is as follows:
    Dr. Cheney's patients have reported that indeed, when given in this fashion, the injection is virtually painless.
    For me, I have always been this way when it comes to writing. It's sort of a perfectionist thing, wanting to cover everything precisely and accurately. What I notice about cognitive dysfunction is that my attention tends to wander a lot, and it's a lot harder to remain focused than it used to be. One result of this is that it takes me a lot longer to do things than it used to because I get distracted easily. This seems to be very common in PWME. Dr. Goldstein characterizes this class of illnesses as a problem with sensory gating, where the brain fails to properly separate salient information from nonsalient. In other words, he says, our signal to noise ratio is lower than it should be. This is not only for our thoughts and conscious sensory perceptions, but also in the way the brain processes input from our various bodily systems. The various intricate feedback loops that normally keep everything running properly just break down, to various extents and in various ways in various people. This makes a lot of sense to me.
     
    Last edited: Aug 30, 2014
  8. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @zzz Thank you for the vote of confidence and in some ways I feel resilient and in others just the opposite. I was able to go out to dinner w/my family last night and felt pretty good but then had nausea/stomach pain which kept me up most of the night and now my shortness of breath is back. I have not deviated from my restricted diet in 3 mos (even in restaurants) but I think what happened is that I took all my supplements much later at night b/c I didn't have them with me at dinner.

    I take some natural anti-virals (besides Famvir) and one of them is Monolaurin which is very hard on the stomach so taking it later at night w/o food must have caused me problems. I have no idea why my shortness of breath is back (when it was gone yesterday) and the exercise echo test was normal so I just try to remind myself that it is either autonomic or just part of the CFS and not to worry.

    Sorry to hear that your sleep cycle is reversed and hopefully you are sleeping now! Hopefully you have recovered from the contact lens trauma and getting back to your normal baseline (or even better :)!)
     
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  9. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @zzz I wanted to tell you that I tried the Zantac this evening for the first time. I had been waiting to try it when there were no other new variables but today I had so much stomach pain/nausea that it seemed like a good day to start. I had been chewing ginger gum and other stomach remedies all day to no avail and my stomach is now great about an hour after the Zantac!

    I just wanted to clarify with you, I know that you said that Dr. Goldstein used it for active mono (which I had about 2.5 yrs ago.) Did he also use it for chronic or re-activated EBV and if so, what did his patients notice and how long did they take it? I know you said to take it 2x/day but for how long? If it is going to do something (for the EBV) when would I expect to notice? Sorry if you already explained all this!!!!
     
  10. zzz

    zzz Senior Member

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    Excellent! There are three main possibilities here:
    1. Your stomach problems were due to excess stomach acid, and Zantac was simply doing what it's advertised to do - reducing stomach acid. This normally takes effect in about an hour, which is what you experienced, so this seems rather likely. Did your other stomach remedies include antacids? If not, then this is the most likely explanation, but if you took antacids with no effect, the antacid action of Zantac would not be expected to help either.
    2. Your stomach problems were due to an EBV flare, and Zantac stopped this. One hour seems a bit fast for this type of action, although Dr. Goldstein said the the antiviral effects of Zantac could be felt anywhere between one hour and one week after starting the treatment.
    3. Your stomach problems were due to an EBV flare that was accompanied by excess stomach acid, probably in some sort of causal relationship, and Zantac worked on both. If some of your other treatments included antacids that didn't help, then I would think that this is the most likely explanation.
    Other than mono, he used Zantac for CFS, and the cases that responded probably did have an active EBV infection, though he doesn't actually say this. However, he started treating CFS when it was still known as Chronic Epstein-Barr Virus, and his rationale for treating CFS with an H(2) blocker such as Tagamet or Zantac was originally that he thought (along with many other people at the time) that the illness was caused by EBV. Twenty percent of his CFS patients improved on Tagamet or Zantac, so he continued using these even after it became clear that CFS was not just an EBV infection. It seems likely, though, that the 20% of his patients that improved did have an active EBV or VZV infection. (Dr. Goldstein found that Zantac worked equally well for VZV.)
    From Dr. Goldstein in Betrayal by the Brain (p. 153):
    Later, in a case report, Dr. Goldstein makes it clear that Zantac usually needs to be taken permanently for CFS. This is most likely because EBV, like all herpes viruses, is never completely cleared from the system.
     
    Last edited: Aug 31, 2014
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  11. knackers323

    knackers323 Senior Member

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    Anyone know why famvir can cause stomach pain?
     
  12. zzz

    zzz Senior Member

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    Various gastrointestinal problems, including abdominal pain, are known possible side effects of Famvir. This is listed in the prescribing information, but as is usual for adverse drug reactions, the cause is not discussed. In many cases, it isn't known.
     
    Last edited: Sep 1, 2014
  13. knackers323

    knackers323 Senior Member

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    Yep I read that too @zzz. Do you know if famvir has immune modulating effects?
     
  14. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I wanted to post an update as I am now on Day 34 of Famvir (and day 10 at the increased dose.) Unfortunately I am not doing well today at all although I do not believe it has anything to do with the Famvir which I still feel is helping me.

    I did a fasting blood test this morning for Dr. K and had to get up early and it was a lot of vials of blood! He was testing me for catecholamines and all sorts of other things he wants to rule out (due to my over-methylation incident) as well as re-check my thyroid. Until the tests are back, I've been advised not to take my Armour Thyroid which I think is also making me more tired.

    This morning I had shortness of breath, extreme fatigue, and could barely walk so my husband drove me to the Lab (and last time I was well enough to drive myself so it felt like another set-back.) I got re-tested for the third time for the Clamydia Pneumoniae Panel. At my first appt at OMI, Dr. K felt I had a false positive IgM to this test. So at my follow-up appt two weeks later, he re-ordered it but the lab completely missed it and did not run it even though ordered. So, when I went for my first Famvir labs in LA, he again order the CP Panel but they ran CMV by mistake!!!

    Today, I told the lab that I did not feel I should be billed for a third time due to an error on their part. They showed me as they entered the code in the computer (and it was correct this time!) but I still had to pay if my insurance will not cover it. I agreed b/c this is the one test from my original testing at OMI that we still don't know the answer to. On a positive note the other test that they re-did, Parvo IgM & PCR, was completely negative so it is now ruled out. This was a relief to me b/c Parvo could cause heart problems which had initially scared me.

    Sorry I have gotten so off track in this post! What I wanted to report is that all day I have been extremely weak & fatigued and after the blood test, when I stand up from bed or chair, my HR is going up to 130 or higher so I took Atenolol after about two weeks of not needing it (which feels like another set back.) They took seven vials of blood and I had not eaten and barely drank any water so this could be part of it. I am now finally taking my supplements, electrolytes & drinking Nuun.

    Dr. K said that I might feel worse after the increased dose of Famvir (which I do) but not sure how long it will last? In general I tolerate the Famvir very well and feel that what screwed me up is the exercise echo. I re-injured the tendon in my right arm causing significant on-going pain and feel like the entire right side of my body is out of alignment but I have not been well enough to make it to the chiropractor. Then the over-methylation incident messed me up overall.

    Sorry that this sounds like one big, long complaining rant and I don't mean it to be! I am just so impatient to get better and feel like I keep having all these set-backs that get in the way. Tomorrow I will be doing the 24-hour urine test for catecholamines (and a bunch of other stuff- I forget all the names) so I will not be able to leave home but that is probably a good thing and will force me to rest.

    Thank you to everyone who is following my Famvir thread who are still awake after my long post! :sleep: :sleep: :sleep:

    And @knackers323, I haven't really had any nausea from Famvir. For me it causes headaches and occasionally facial pain or pain under my ribs. I can take it with or without food, it doesn't seem to matter. You also asked if it has immune modulating effects and I really am not sure. I suspect though that @zzz or @heapsreal will know the answer!
     
  15. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I am now on Day 43 of Famvir (still at dosage of 500 mg 3x/day.) I finally got the results of some blood tests but the 24-hour urine test results still pending. The good news (after a lot of confusion!) is that the Chlamydia Pneumonia (CpN) test is negative.

    The catecholamines blood tests are from my own interpretation and I have not spoken to my Dr yet. But on the paper from the lab, the epinephrine and norepinephrine are within the range but the dopamine was so low, they couldn't measure it. It said, "See note" which said, "Results are below reportable levels for this analyte which is 10 pg/mL." Does anyone know how to interpret that? Is low dopamine bad? Also, the results report ranges for both supine and upright, but I was sitting for all tests so not sure how that applies?

    My thyroid results were normal (TSH 2.0) b/c I had been on Armour up until the over-methylation fiasco. I am now back on Armour (after two weeks off) and hoping this means my Dr will say that I can re-start the methylation supplements (but at the much lower dose that everyone helped me to calculate in another thread!)

    I will be having a consult tomorrow morning with a cardiologist who specializes in autonomic issues (referred by my cardiologist.) I had to postpone this appt twice but am planning to be there tomorrow no matter what. I already take Atenolol and Florinef but hoping he can figure out something for my shortness of breath with the slightest exertion and tachycardia/POTS episodes. Yesterday even with the Atenolol, my HR went up to 126 when I stood up which is getting so old and annoying for me :mad:.

    The last few days I have had a return of what I call the "Sickly fatigue" :ill: in which I feel feverish, hot/freezing (but temp still below normal), and overall like a mono type fatigue. This had been gone for weeks and I am wondering if I am going through some kind of die-off reaction with Famvir? I know there is no herxing with anti-virals but maybe it is some kind of die-off or detox as the EBV and VZV cells are dying? At least that is my hope!

    Lastly, my husband ordered me a light-weight foldable wheelchair on Amazon today. We both resisted getting one but there are some up-coming events at my step-daughter's school and I am not sure how I could do the level of walking required to the different classrooms without a wheelchair? I can only walk very short distances at a very slow pace. I e-mailed the school to inquire if the bldgs have an elevator vs. stairs and how much walking might be needed. I kept it vague and just said that I had a current health issue which limited my walking.

    Thanks again to all who read this for all your feedback and support :hug:
     
  16. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I wanted to give an update re: Famvir since I have not posted in this thread for over a month. I found out today from my CFS doctor that my EBV "early antigen" titers have gone down which I thought was good news! Prior to Famvir when they were tested back in Feb and July, they were going up. I don't know the actual numbers but hope to get the results. He wants to increase my Famvir from 3x/day to 4x/day soon but not yet (and I am okay with this new plan.)

    Overall, I am feeling less fatigue and the sickly fatigue is gone. I was able to go to an event at my step-daughters school yesterday and out to dinner (with the wheelchair for longer distances.) My main problems remain autonomic and I am in the process of many medication changes to try to increase my blood pressure and blood volume.

    My new cardio and my CFS doctor were finally able to speak on the phone yesterday which I was thrilled about! They are in agreement that my cardiac issues are not due to cardiac causes and are due to severe dysautonomia. Even my angina episodes (shortness of breath and chest squeezing/tightness) they think are a type of spasm of the smaller vessels (similar to microvascular angina) due to low blood pressure and blood volume which could "self correct" as I get better. At least that is what I am hoping and praying for!

    I also learned that my lab result for vasopressin is undetectable (the range is 1.0 to 13.3) and mine was less than 1.0. My CFS doctor wants me to try a low dose of Desmopressin and I am going to start a new thread later today to ask you guys some questions and get feedback about this as it is new for me.

    Thanks again to all who are following and supporting my journey with Famvir and treatment.
     
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  17. Sidereal

    Sidereal Senior Member

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  18. RUkiddingME

    RUkiddingME Senior Member

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    Great news! Glad you are seeing improvement with the Famvir!:thumbsup:
     
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  19. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Sidereal Thank you and I will revive one of the old threads on desmopressin instead of creating a new one. I will read them and do some research before starting this med as I have a lot of questions and concerns.

    @RUkiddingME Thank you and I was almost afraid to post it and jinx anything. I really think I am feeling better and able to do more because of the Midodrine although I am hoping that the Famvir is helping too since the EBV early antigen test went down. But the acute change in my opinion is due to adding Midodrine and stopping Florinef (which never helped me.) I want to hear how you are doing, too, and look forward to your next blog update!
     
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  20. RUkiddingME

    RUkiddingME Senior Member

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    It haven't updated my blog in the fear of jinxing my progress as well! Lol Will update soon! :). I have always wanted to try midodrine. I wish I could convince someone to try me on it. My heart goes above my anaerobic threshold all the time. Just putting bread in toaster I'm up 110. I think that's what keeps me from being able to walk any distance. Best of luck to you Gingergirl
     
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