Valtrex and Heel Pain

Discussion in 'Fibromyalgia Main Forum' started by viralfree, Oct 9, 2008.

  1. viralfree

    viralfree New Member

    Hello -

    Have any ME patients taking Valtrex (or Valcyte) been experiencing intense foot pain or heel pain?

    When i was on Valcyte i had pain on the bottom of both feet. It mostly subsided after the intense viral die off phase. Once off the Valcyte I started having heel pain.

    Now that I'm on Dr. Lerner's Valtrex protocol, working up to 4gr daily, I've been experiencing intense heel pain, and by evening my gait is more of a hobble. A podiatrist prescribed 75mg Lyrica, but it has yet to make a difference.

    Suggestions and/or reassurance is most welcomed.

    Thank you,
    VF

    Oct. 30 update: I finally found relief, from Naproxen, 500mg BID. It's believed due to inflammation, similar to that experienced by Lyme patients. I also am treating a bacterial infection.

    [This Message was Edited on 10/31/2008]
  2. SpecialK82

    SpecialK82 New Member

    Hi there, sorry to hear of your pain. I am on Valtrex with Dr. Lerner (6 weeks) and haven't experienced any foot pain as of yet.

    Hope you find something that can help!!

    Kristina

  3. viralfree

    viralfree New Member

    Thanks Kristina,

    Have you experienced an intensity in any/all of your symptoms, now that you're 6 weeks into Dr. Lerner's protocol?

    VF
  4. SpecialK82

    SpecialK82 New Member

    Oh yes, definite increase in fatigue and muscle weakness. He told me those symptoms would be worse for the first 2 -6 weeks, I'm at 6 1/2 weeks and I still feel lousy.

    It's a little scary doing a treatment that makes you feel so much worse at first, I'm praying that it will turn around here any day.

    Interestingly, most other people on this board didn't seem to get noticeably worse when first taking Valtrex. I have very high titers to EBV (the highest I have seen on here, 1:10,240) so that may be why it's bad for me, I don't know.

    I am having some bad abdominal problems with the Valtrex though - heartburn, bloating, some stomach (gas) pain. I keep hoping that it will settle down but it hasn't yet.

    Kristina




    [This Message was Edited on 10/10/2008]
  5. viralfree

    viralfree New Member

    Hi Kristina,

    Upon my first Focus blood tests I had the same EBV titer as you, along with titers noting an active infection. But I also had very high HHV6,hence that was treated first in hopes that would also control the EBV.

    Over the course of 15 months my EBV bounced around, never lower than 1:2450, with an active infection 4 of the 7 tests. Fortunately, the Valcyte did wonders for my cognition and other Hypothalamus functioning. And my fatigue cut in half or better, but still not good enough for mainstream function or to work. Thus, Lerner's protocol, and one for a bacterial co-infection.

    For your stomach, you might try adding a little sodium bicarbonate to your drinking water. Or only drink Evian or Fiji, both pH 7.5. This might help to settle your stomach.

    I wish you success with your healing and thank you for your input.

    VF[This Message was Edited on 10/10/2008]
  6. SpecialK82

    SpecialK82 New Member

    Well it sure is comforting to hear from another high EBVer!

    That's terrific that your titers went down so much with the Valycte, and I assume your HHV6 was much improved as well?

    People here seem to continue to improve post-valcyte (6 months - 1 year out at least) so you should do really well now.

    Are you seeing a direct correlation with your titers (either HHV6 or EBV) and the way you feel? In otherwords, when the titers are down, do you feel better? Is there a lag time to feeling better?

    How long have you been on the Valtrex?

    I'm so excited for you that you are seeing real improvement!
    That must feel so good to look back on all the months of treatment and know that you are moving in the right direction :)

    Can I ask how long you were ill before you started on the AV's?

    Thanks so much for the suggestions for my stomach, I hadn't thought about sodium bicarbinate - I will definitely give that a try!

    Kristina
  7. viralfree

    viralfree New Member

    Hi Kristina,

    My form of CFS has been progressive, relapsing/remitting, commencing in my teens; likely undiagnosed mono. So it's been many, many years. The past 10yrs have been very difficult with a variety of meds keeping me pumped, until I became bed-ridden in 2005. It was not until February of 2007 that i was diagnosed with CFS, actually, Post-Viral Fatigue Syndrome or as Dr. Montoya calls it, Viral Induced Central Nervous System Dysfunction; quite apt given my high anxiety (along w/the other relevant symptoms). A big miss by the medical community! By the time Valcyte came along i was extremely ill.

    My titers levels do not reflect the way i feel. My HHV6 was as high at the end of 9 months as the beginning of treatment, however, they did decrease during treatment. Same with my EBV, up and down, ending with active EBV, yet the IGG at month nine was down to 1:2540.

    I have continued to see cognitive improvement. With the addition of Valtrex, my mood keeps getting better. All hypothalamus related functioning continues to improve.

    The Valtrex is definitely keeping me in a low energy place. For one month i was off all meds and felt super; still not able to be really active. Now it's back to plenty of rest, daily naps, long sleeps. My mind is active, it's my body that needs repair.

    I'm also on anti-biotics for a bacterial co-infection.

    Like many doctors who treat based on symptoms, i've become less focused on titers and more on how i feel. I've learned to modulate activities and rest as needed. I'm now only at 3gr Valtrex, in a few days it will be 4. I can feel it's impact, as my body requires more rest.

    BEst to you on your healing path, and yes, it is great for so many of us to be responders!

    VF
  8. SpecialK82

    SpecialK82 New Member

    Sorry to hear of your difficult journey - thank God you finally have a diagnosis and a good doctor!

    I guess you are having the same energy drain with Valtrex that I feel, hopefully that means its working on something!

    Looking forward to hearing your progress. I hope that you can get that heel pain figure out.

    Kristina
  9. viralfree

    viralfree New Member

    thank you, and the best to you on your healing journey too.

    VF
  10. frostymocha

    frostymocha New Member

    I feel like jumping out of bed and crying with joy to find others on Valtrex for these viruses. Can I tag you as friends? I've been on the HHV6 boards, the Herpes boards, you name it but .... I was the only one with this combination of viruses and going to Dr. Montoya following this protocol. I didnt know there was also a private Dr following this as well (Dr. Lerner).

    OK - deep breath - really I am so excited -

    I have high titers for all these viruses
    CMV -12.7
    EBV EA - 160
    EBV VCA - 1280
    HHV6 - 320
    HSV1 - 1.67
    HSV2 - 2.05
    VZV - 64

    All of my levels went UP after 6 weeks on the Valtrex except for the VZV which went down dramatically but..... mentally I improved beyond belief and still feel so much better.

    Physically, I am not nearly as tired but I have all kinds of neuro issues that are painful and make it hard to do stuff and I am on quiet bed rest to see how much of these will get better - I was told that I had "shingles" of the CNS along with the CFS symptoms from the other viruses - so I still have problems with my brain and dont know if it will be like this forever.

    I guess I should look at this as the glass half full - if I hadn't made the appointment myself with Stanford and then haranged my Dr to send the referral, I dont know what state I would be in now. As it was, I went to all these other Drs for 15 months and was at the point of not being able to walk anymore (my legs and arms were going thru a slow paralysis) yet I never got even an asprin from the other Drs - they told me there was nothing they could do for me - Not kidding, not exagerating. I still cant believe it. So I am SOOOOOO grateful I got into see Dr Montoya.

    Yes taking Valtrex is not for the faint of heart. I have had a VERY hard time with it - I finally made the dose transitions at a much slower pace than others Ive read about and I was flat out in bed for 5 weeks until I got stablized at 2 g a day. Then I felt OK. The burning tingling in my arms, legs, chest are still there and I assume it is Post Herpetic Neuralgia.

    The local CFS Doctor that is working with me and Stanford, is making sure I am taking Urosidiol, grapeseed extract, and milk thistle to keep my liver function up. He also had me take Vitamin C high dose 3 times a day, charcoal tablets (4 tablets 3 times a day), and papaya digestive enzyme (3 times a day) - all of these to reduce the toxicity of the viral die-off which he explained (and I beleive) is part of the difficulty one goes thru when taking antivirals. I also stayed very quiet - lying down most of the time to give my body a chance to fight the virus. Oh - the antivirals can really mess up your digestion - I took mineral oil and fiber to help keep things moving - Ive never had to do this so I know it was a direct result of the toxins. After a month I didnt need to do this.

    I am on a dose of 1500 a day for now and because my labs haven't come down I am staying at this level for now - at least until my next appoint.

    [This Message was Edited on 10/17/2008]
  11. viralfree

    viralfree New Member

    I'm so glad to hear you're improving!!! Wow, you've really been slammed. And yes, it's amazing there are only a handful of MD's publishing medical research for we PIFS'ers (post-infectious fatigue syndrome!).

    I didn't know we could tag friends...so sure. I find it VERY reassuring to share our progress, side effects, viral die off effects, what helps or doesn't, etc.

    So Dr. Montoya has you starting with Valtrex. Did you take Valcyte too? How long have you been on the Valtrex? I've been taking massive doses of Milk Thistle, a natural Vit C (it's gentle on the system), Zinc (necessary for viral die off), and like you, something to help keep the system moving. I also have weekly visits with an acupuncturist (MD) for immune enhancement - it's a big help for my agitation.

    I've been on Valtrex for about 90days, titered up to 4gr daily (3 weeks ago), and feel like i may be stuck in the low activity zone for the rest of my life. No work, no play. However, i do push it at times and have post-activity malaise.

    Previously, I was on 9 months of Valcyte and regained superb cognitive functioning, albeit, still slow and plenty of "off" days, but i can usually make decisions and again read. However, I still have an active EBV infection and a bacterial infection, so i'm hoping Dr. Lerner's protocol will reduce the EBV viral load.

    Thanks for introducing yourself and I look forward to more shared experiences. I live in the Bay Area.

    VF
  12. SpecialK82

    SpecialK82 New Member

    Hey there viralfree nice to hear how you are doing and a great big hi to frostymocha!

    It's reassuring to hear that you both are experiencing digestive issues with the Valtrex, I have not heard that from anyone else. I have been having terrible problems with it and wonder if it's yeast.

    I have had gas, bloating and some mild stomach discomfort since starting the Valtrex. Then in the last few weeks I am having increased GERD problems - pain in chest/sternum area and that has become constant.

    Dr. Lerner told me to get off Valtrex for a week and start taking Nexium twice a day (was taking Prevacid once a day). Well it's now been a week off the Valtrex and I'm not feeling much better.

    I am suspecting yeast because I'm also having some other problems. Recurring vaginal yeast infections (3 in the past 4 months), and tongue has a white coating on it, also my nailbeds hurt and my toenails have turned a slightly different color.

    So called my GI doc and he told me to start taking Benefiber twice a day and eat 2 yogurts daily. I have been eating yogurt all along so it's not been strong enough. It's interesting that you are both taking something to help your digestion - maybe if I had been doing that all along I wouldn't be in all this pain now.

    I made an appt to see Dr. Pellegrino as I know that he believes in treating yeast. I want to get this figured out quickly so that I can get back on Valtrex. I was really bummed to get off if it but felt that I didn't have a choice so that I can isolate my problem.

    Glad to have you here frostymocha - you are so lucky to be seeing Dr. Montoya!

    BTW, since being off Valtrex for a week, I have not gained any energy. I don't know if it's still the Valtrex in my system or if its yeast dragging me down?? I was really expecting a spike in energy so it's a little unsettling to still feel lousy.

    Nice talking with you both :)
    Kristina
    [This Message was Edited on 10/31/2008]
  13. viralfree

    viralfree New Member

    HI Kristina,

    I'm so sorry to hear of your continued GI distress: I hope you soon have resolution.

    I've been using a product by Healthforce nutritionals, called an intestinal drawing formula, and find it helps; the only quandary is the timing of when i can take it given all the meds + food. If i don't take it i get 'tight'. I also use their vit c and liver support; however, they are expensive. But i must say, given 4gr Valtrex + anti-biotics for a bacterial infection, my liver enzyme test results are normal, so I won't complain.

    Take care.
    VF
    [This Message was Edited on 11/01/2008]
  14. jabuaisha

    jabuaisha New Member

    Hi Kristina,

    This is my very first post here but I have been reading for quite a while on the fm board. I wanted to respond to your suspicions that you may be dealing with yeast issues while you are taking Valtrex.

    I have a four year old son with autism who has very high viral titers. He has been on antivirals since January and Valtrex since March. It is pretty much accepted in children on the spectrum that antivirals kick up yeast and so an rx antifungal is prescribed to be taken in conjunction with the antiviral.

    I started taking Valtrex myself in May (for very high EBV titers) and was already taking 100mg day of Diflucan so my yeast issues were pretty much under control when I started but I still have had flare ups. Unfortunately, the viral die off for me with the Valtrex has been so intense and painful and unbelievably long I have been unable to continue and quit taking it several weeks ago. I was going to talk to my childrens doc about switching to Valcyte (he is the doc who rx's my "alternative" treatments) in the hopes that it might also be effective but still let me get out of bed occasionally to take care of my kids. Anywho...

    If you have confirmed viral issues and suspect you may have yeast also, it would be worth investigating whether you have a high body burden of heavy metals. The three typically skip along together holding hands....

    You can take a urinary porphyrin test without a Dr.'s orders from a lab in France .... www.labbio.net You simply request they send you a test kit, follow the instructions and pop your urine in the mail and about three-four weeks later they will email you the results of your test. It is a non invasive test that measures the build up of certain types (not all) of heavy metals in the kidneys.

    Also, the Great Plains Lab can send you a test kit to test for yeast and bacteria to confirm whether it is an issue for you or not. http://www.greatplainslaboratory.com/home/eng/full_oat.asp You would need a Dr.'s signature on this test though to have it processed.

    I hope you feel better soon.
    Julie
  15. SpecialK82

    SpecialK82 New Member

    Thanks so much for the info VF and Julie. I had heard once that in treating autism that yeast can stir up with antivirals but had forgot about that! Thanks for the reminder - that must be what's happening.

    If I get Diflucan how long do you think if would take to go through the die-off period? I would like to get the yeast under control and then get back on Valtrex. I'm a little worried to start back on the Valtrex right when I get an antifungal as I may have the herx-like effects from both.

    Julie - can I ask what you EBV titers are? Mine and VF's are both 1:10,240 which is very high. I wonder if our high titers are causing us all to feel worse than most on Valtrex. A lot of people seem to have a strong reaction to Valcyte and not much of one to Valtrex. It may also depend on your mix of infections. My doctor believes that Valtrex is the best to treat EBV, but if there are other viral co-infections present then it is best to be on Valcyte.

    I did have some tests for heavy metals a year ago and it was fine - do you think I should test again? Thanks for the lab names - too bad most need a doctor's order to have them run - even if you pay out of pocket I wonder why they can't run something for you.

    VF - I'm with you on the timing of all these meds. Some are with food, some on an empty stomach, etc. I feel half my energy in a day goes towards remembering my next dose of meds, fiber, drinking all my water, etc. - no wonder we are so tired :)

    Kristina

  16. simonedb

    simonedb Member

    ok so now that I am doing a little research the info is coming back to me.

    I am experimenting with valtrex and artesenuate and can probably continue to do so for awhile.

    Have any of you out there ever quit the antivirals and felt done with it and continued to feel better than when you started?

    I am hoping that I can do a sort of pulsating or whats the word when you dont take it continuously. I dont want to do that to my liver and my mood and energy, have some things need to get done not open to being bedridden for months right now (I am not normally bedridden all day at baseline).

    would be grateful to hear others experiences or stories of others success or warnings that you know for a fact.

    peace
    sb