Discussion in 'ME/CFS Doctors' started by Jesse2233, Mar 1, 2017.
Is the tenofovir a new adjuct?
I believe so yes.
@Jesse2233 was there any indication of the length of Lamivudine use for the responders?
I have used it in the past at 200mg per day for about 5 weeks and can't remember feeling much, however in the process of starting a 3 month trial at 300mg per day(Dr Chia's recommended dose)and am wondering if this would be long enough.
My VP1 Biopsy was a Posite 2+ result.
However my Nagalase levels are almost 3.0 which is over 6x the maximum reference range. GcMAF use makes me feel worse(herx?)
He told me if I didn't respond in a month to stop taking it. I've not started due to the toxicity profile, but it's on my list along with Tenofovir.
Dr Chia said he had one patient experience immeadiate reduction of brainfog after starting Epivir "they started reading Freud when they couldn't read before"
Haha, that was my son! However, it was not exactly immediate, it took a few months. Can't remember how long he took it anymore, seems like it was 3-5 months. That was after several years of slow, but steady improvement on Equilibrant and Inosine. He DC'ed it due to intolerable side effects, but the benefit has lasted!
ETA: The reduction of brain fog was probably fairly quick, but those effects built with time, too. Not sure how soon he was able to start reading again. When Dr. Chia found out he was reading again he asked my son what he was reading and he said, "Right now I'm reading a book by Freud."
That's interesting, I am currently re-testing Epivir at this moment. The last time a tried it, I took 200 mg daily for 50 days, but stopped when my box of tablets finished. I did not notice much at the 50 day point, maybe some slight improvements. But from what you are saying, I should perhaps keep taking it for 3 months or so.
My motto is to take whatever improvements you can find.
Hey y'all, I'm new to the forum, and pretty new to CFS/ME (15 months). I live in West LA and am trying to get in to see Dr. Chia sometime early next year. Just wanted to join in the discussion and say that, after a bit of a crash last week, reading through these posts and many others on this forum has been a huge boost to my mood and hope for somewhat of an effective treatment.
Seems like it's not a great idea to try Equilibrant on my own if it seems like I can realistically go see Dr. Chia, because I've read somewhere on these boards that some folks "only get one chance" with the supplement. Is this a reasonable concern/stance? Thanks!
I understand that it is only small percentage of patients who respond to oxymatrine initially, but then do not respond the second time. oxymatrine So it's not a big concern. But if you want to try oxymatrine on your own, do read through some of the oxymatrine threads, because there are a few things you need to know about how to do the oxymatrine protocol properly.
Some good oxymatrine threads include: Dr Chia: Oxymatrine, Oxymatrine, Autoimmunity, ME/CFS and FM, Quixotic: Equilibrant, Invest in ME 2010 conference transcript, oxymatrine effects, immunomodulators info.
I stopped Equilibrant upon first trial because of side effects. I restarted about two months later, dealt with the side effects, and have found improvement. @Hip provided some thread links in his post. Reading those links helped me understand the side effects and what to expect, which encouraged me to deal with the initial side effects the second time around. Not for everyone, but has helped me. Unfortunately, yesterday I had to reschedule my October appointment with Dr. Chia as I've had difficulty getting the lab work he requires in my state.
I'm a patient of Dr. Chia's and I agree with your decision. It's very tempting to jump right in, but he uses different doses in different subsets of patients and his criteria for that selection are not known to me. I know he starts some patients on 1-3 tablets twice a day and started me on 1/8 of a tablet. And that was effective. Naturally, I titrated up according to the schedule he gave me and now, about 10 months later, I'm stable on 1 tablet twice a day.
He was also receptive to my desire to start LDN which he prescribed at the dose I wanted and which was also beneficial for me. I think it's great that you're going to see him and hope you respond too!
I just wanted to provide this information for those considering making an appointment with Dr. Chia:
I made an appointment with Dr. Chia months ago with plans to see him in October--this would be a cross-country plane trip. My kids would be well tucked away at college. When I made the appointment, I did not realize it would coincide with one child's Parents/Families Weekend.
When I realized that the date of my appointment would not work, I called well in advance to cancel (about 2 months), with plans to reschedule. When I cancelled, however, the secretary told me that if I made a second appointment and cancelled, I would not be allowed to make any further appointments.
I was not told this the first time I scheduled an appointment--I think this is something good to know ahead of time.
I was told the same thing when I had to reschedule.
@Hip I remember reading on your blog that 300mg per day was the right dose for lamivudine.
https://www.windpharmacy.com/index.php/epivir-lamivudine-30142.html has anyone here used this lamivudine/pharmacy?
They stock the 150mg Lamivudine tablets at a good price.
Thanks for your input. The other thing I'm worried about, starting a treatment protocol on my own, is that I'll have a Herxheimer/IRIS-type reaction. I'm currently healthy enough to work full-time, and if I make myself too sick to work, even temporarily, I could lose my insurance and a great job. This almost happened to me with Valtrex just recently. I was on 1g, 3x a day, and experienced a major worsening of some symptoms about 6 weeks into the treatment. I had to take a week off work and was very worried that I'd made myself permanently sicker.
Actually, I have a follow-up question for you folks: does this response to Valtrex (I'm EBV IgG positive and CMV IgG negative) indicate that Valtrex might have been likely to help me in the long run (6-12 months)? I'm planning to ask Dr. Chia this question as well.
Good to know, I appreciate that. It must be unbelievably tough planning to go see a doctor in a different city with kids and other obligations going on. Good luck. I'd love to hear about your experience with him as it develops!
Another question I'm planning to ask Dr. Chia, possibly related to the chronic EV infection hypothesis. Maybe someone here has input on this or even heard from him about it:
Especially earlier on in my illness, I had 2 or 3 remissions that were directly after beginning to recover from a cold. They lasted 2-7 days, and then slowly my CFS issues would set back in over the course of a day or so. What do you think was going on when I had these several brief remissions? They had sudden onset, often during the middle of the day after a nap (napping due to a cold or the like). Is it possible my immune system "reset itself" from Th2 to Th1 mode due to the other infection, and this allowed me to recover momentarily until the problematic infection was the only one remaining and I stopped producing the right antibodies/Th cells? Could we replicate this with any immunomodulators?
Can you tell us what the side effects were that made him stop it?
Yep, I had this type of IRIS response to acyclovir and valaycyclovir, made me unable to sleep etc. The difference was, I got it within a couple of days, and couldn't get anywhere near the 1 g dosage. It's a bit crazy because both acyclovir and valtrex are sold as over the counter products in my country, so they are considered safe medications in the short run at least, but apparently for a person with CFS/ME nothing is safe. FYI, I have also tried oxymatrine, and didn't have anything near as bad a reaction to it. I would say oxymatrine is a lot safer based on everything I've read from CFS/ME patients taking it.
Yep, I have this as well interestingly. I even started a thread about it here. Last time I experienced it was last year with a cold, so the effect is still there for me. Unfortunately I only manage to catch a cold once in three years or so. The cold brings 100% remission of some of my symptom (brainfog, small fiber neuropathy, fatigue). Another way to get partial remission is to induce sleep deprivation. This is not as strong as the cold effect, but can lead to some very productive evenings. This happens to me typically after a night of 2 to max 3 hours of sleep.
Unfortunately, I have yet to manage to replicate either of these two experiences with taking supplements, and I have tried most of the supplements on this planet. Actually I'm currently looking at non-supplement therapies such as HBOT, VNS, TMS and grounding. From diet/supplement side I'm mainly planning on testing probiotics and intermittent fasting, the other supplements like herbs only tend to produce weak results, and even the weak positive effect disappears after a week or two.
@JES how are you faring with HBOT?
Yes, this is something that Chia has witnessed in his patients on occasion. He specifically mentioned seeing this after a RSV infection but I believe mentioned seeing it with other infections as well.
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