Posted , 4 users are following.
Ive been trying valacyclovir for 3 months with zantac (for better absorption?) And im not seeing any improvement . They say if you've had mecfs for more than 25 years that it wont help.
0 likes, 12 replies
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jackie00198 tracy47348
Posted
I've never heard the bit about 25 years. You might want to give the Valcyte a little more time, maybe 2 or 3 more months. You want to give it every chance to work. Also, you might want to eventually add low-dose Naltrexone (4 mg per day). This Valcyte/Naltrexone is the regime recommended by Dr. Jose Montoya at Stanford.
tracy47348 jackie00198
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KPD tracy47348
Posted
Hi Tracy. I've had CFS for 25 years and have tried antivirals (including valacyclovir) several times during the course of my illness. I've never noticed an improvement in my symptoms, either. KPD
tracy47348 KPD
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KPD tracy47348
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Hi Tracy,
When I first was diagnosed back in the early 90s, my doctor thought that the EB virus was causing many of my symptoms, so he treated me aggressively with antivirals for about 3 months. Looking back, I may have improved some because I felt much better when I was younger than I do now.
In the past year, my symptoms have gotten so much worse. I'm having such a difficult time managing them. I went back to the same dr that treated me 25 years ago, and he treated my again with the antivirals along with Doxycycline (an antibiotic) I was doing slightly better for a few weeks, but in the last month, I've had really bad headaches, so I'm worse again and feel as though I've hit rock bottom. Sorry for the long reply. I wish we had a better forum to communicate. I find this one very frustrating, since it locks up some or is hard to navigate.
Anyway, hope the antiviral helps. I would try it. I don't think it will hurt. How much has your dr prescribed? KPD
tracy47348 KPD
Posted
Gosh, just read this and these people were taking antivirals for years. Ugh. How can that be good for your liver unless thats all they had to do was few years. Idk. Yeah i was perscribed doxy also but i had such a bad reaction to it when i took it for a possible bacterial infection years before. I just thought it was clashing with my ebv so i stopped. Maybe it was herx and i do have lymes also. Such a frustrating illness! Im sorry you arent feeling well. Me too! Feel like my time of 27years with this crud is coming to an end only because of my heart issues which Dr. Lerner also mentions .
Yes i hear you on the communication part of this forum. Are u in uk? Im in usa.
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tracy47348 KPD
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KPD tracy47348
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What kind of heart issues to you have, Tracy? I'm not familiar with Dr. Lerner. Is he a specialist in CFS/ME. And when you say that your time of 27 years with this crud is coming to an end, what do you mean? Do you mean that you have gotten worse? Just wondering how your illness has progressed.
I got to the point in my life where I could function 50%. I actually had a part time teaching job for 15 years. In the recent years (I attribute it to menopause and the hormonal changes) my symptoms have gotten worse. And now with the head/neck pain, it is really difficult for me to function. I keep trying to push myself some. Going to see an orthopedic today to address the neck. Hope that helps clear things up.
Forgot to mention that my symptoms are always worse in the fall/winter months. Not sure why.
I'm also in the USA. KPD
tracy47348 KPD
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KPD tracy47348
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Hi Tracy...It's crazy how some of the comments do not get posted on this forum. It's very frustrating.
My recent MRI is showing problems in my neck. That is what could be causing my headaches. I'm going to a orthopedic on Monday to get a second opinion. If all these headaches are due to the neck, just maybe they can treat it. Pain makes the fatigue even worse.
I'm trying to be hopeful and positive. I always feel better in the evenings, so I go to bed with a positive attitude. Lately the mornings have been so painful in terms of fatigue and brain fog! Wishing the best for you. Try to stay positive and keep praying. Keep me posted. KPD
tracy47348 KPD
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Hi KPD. Thank you. You will have to Google dr. Martin Lerner as i cant send links on here. He mainly talks about EBV , CMV and antivirals. When you took the antivirals, did they have you also take zantac or tagamet? Lerner doesn't talk about this in his site. Im just curious if its necessary. 2 -300mgs a day. Sorry to others about all the messages. And yes 27 years i feel like im getting worse . Will keep at these antivirals if im able. God bless!
KPD tracy47348
Posted
Thanks Tracy. I'll google Dr. Lerner.
Do you mind me asking you how old you are? I'm 56 years old and I feel as though the drastic changes in hormones levels have made me feel worse. Do you think that could be going on with you?
Anyway, I hope that you begin to start feeling better with the antivirals. I finally stopped taking them bc I wasn't improving.
I have read lots about a drug called Low Dose Naltrexone (LDN) used to treat autoimmune diseases. In higher doses it is used to treat opiate additions, but in lower doses people with autoimmune are finding it helpful. The problem is you have to find a dr who is familiar with it to prescribe and also a compounding pharmacy. I can't post a link here, but if you go to Facebook, you can follow a closed group on LDN and CFS. Good luck and keep me posted. Karen (KPD)