Has anyone improved on Dr. Bruce Patterson Protocol for ME/CFS?

[Tmonkyi]

Hi,
I did the Incell testing recommended by Dr. Bruce Patterson in Dec. 2022. When I had my video consult with him he noted after something like 24,000 tests he now has an algorithm for test results that differentiate ME/CFS from long Covid from Lymes. He said I was text book for ME/CFS, elevated SDL40 and VEGF but NOT CCL5 (I think those are the right acronyms). He has suggested the issue for us with these results is vascular inflammation and feels confident doing his protocol of Maravoric and Pravastatin for 4-6 weeks should help immensely. The muscle weakness/pain/achiness, fatigue, brain fog, hot and cold sensitivity, PEM, etc. I have the drugs in hand but haven't tried yet them as I am in the midst of getting over my 2nd round of 2-4 week "fake" Covid - tests negative but feels similar. Had actual Covid June 2022 and sought Dr. Patterson out in Dec. as PEM and general ME/CFS symptoms had gotten SO much worse post Covid. I am looking for others who have actually tried his protocol and found benefit. Anyone?

 

[Tmonkyi]

NOTE: Dr. Bela Chheda of Center for Complex Diseases recommended I seek him out.

 

[hapl808]

No experience but I hope you get some good answers here. It's always hard to differentiate the truly promising from the overly hyped. I've heard a lot about him, but curious if people here have actual experience with his protocols.

Also weird with the 'fake' Covid, as I know a lot of people who have been sick for weeks or longer in the last several months, and only a small number had Covid according to testing.

 

[junkcrap50]

I've been on it since August. No improvements so far in terms of symptoms. But there has been a small but noteable decrease in my cytokine levels. I'm going to give his protocol 1 year.

PM me if you need a cheap maraviroc source.

 

[Vlad83]

NOTE: Dr. Bela Chheda of Center for Complex Diseases recommended I seek him out.

This is good to know.

Thank you for sharing. I am on the fence about getting on Dr. Patterson's protocol, so very interested in learning other people's experiences, especially ones with ME/CFS.

 

[Tmonkyi]

I've been on it since August. No improvements so far in terms of symptoms. But there has been a small but noteable decrease in my cytokine levels. I'm going to give his protocol 1 year.

PM me if you need a cheap maraviroc source.

Thanks for letting me know that. You should definitely know after a year! So it sounds like you are tolerating it well. If I feel improvement and want to try it longer I may indeed hit you up for an affordable source for maraviroc -

Dr. Bela Chheda indicated to me she didn't think there was much benefit doing the protocol longer than 4 weeks, although in my consult with Dr. Patterson he mentioned as long as six weeks and then retest. I think I will pass on retesting and just go with symptom improvement. I neglected to mention the other main symptom he seems confident that can get some relief is Orthostatic Intolerance/POTS. Do you have that and have you noticed anything?

 

[junkcrap50]

Thanks for letting me know that. You should definitely know after a year! So it sounds like you are tolerating it well. If I feel improvement and want to try it longer I may indeed hit you up for an affordable source for maraviroc -

Dr. Bela Chheda indicated to me she didn't think there was much benefit doing the protocol longer than 4 weeks, although in my consult with Dr. Patterson he mentioned as long as six weeks and then retest. I think I will pass on retesting and just go with symptom improvement. I neglected to mention the other main symptom he seems confident that can get some relief is Orthostatic Intolerance/POTS. Do you have that and have you noticed anything?

Cheapest if insurance pays for it, obviously. Then if insurance only covers part of the cost, the manufacturer will pay for the rest. Then buying from India. Then buying from US pharmacies with cash using GoodRx, SingleCare, or others' coupons (there's a wide range in price among local pharmacies).

 

[junkcrap50]

This is good to know.

Thank you for sharing. I am on the fence about getting on Dr. Patterson's protocol, so very interested in learning other people's experiences, especially ones with ME/CFS.

I'm skeptical it will work for ME/CFS. I think a few people (2-3) with ME/CFS from the old discord tried it for a month (without testing probably) and noticed nothing. And claimed the protocol doesn't work.

But it seem to help many, but obviously not all, Long COVID patients (many could be any number 25%-80%). If you search twitter for "maraviroc" and scroll through backwards in time, there are a lot of people who said it cured them. And it's not fake people, new accounts - they seem real based on their pre-covid tweets. Some patients stopped the protocol, then had to restart it. So I've seen a couple long term use of the protocol 9-12+ months.

I neglected to mention the other main symptom he seems confident that can get some relief is Orthostatic Intolerance/POTS. Do you have that and have you noticed anything?

Well I don't have the typical POTs what people often describe their symptoms like feeling faint when standing, racing heart, etc.. I have tacchycardia (which I didn't know I had until a year ago when I got a fitbit) & mild hypertension (have always had, but unsure if I had it pre first post viral fatigue infection). Neither seem to be very postural related - no blood pressure spikes/drops when standing/laying, for example.

Yeah I've heard Patterson say that about POTS, but since I don't really consider myself as having POTS, I don't really read about it or pay attention about what anyone says about it. I think if you've long covid for a short time <1-1.5 years, then I think his protocol would fix it, since it seems to cure the less sick & recent sick most quickly. I think POTS is more autonomic nervous sysstem dysfunction/sympathetic dominance and/or autoantibody driven.

 

[hapl808]

Well I don't have the typical POTs what people often describe their symptoms like feeling faint when standing, racing heart, etc.. I have tacchycardia (which I didn't know I had until a year ago when I got a fitbit) & mild hypertension (have always had, but unsure if I had it pre first post viral fatigue infection). Neither seem to be very postural related - no blood pressure spikes/drops when standing/laying, for example.

Similar here. What's your tachy and hyper like? My usual HR seated at a desk is around 90-110. My BP is 105/75 when I'm feeling okay-ish, when it's 115/85 I usually have the beginnings of a migraine. Crashes almost always lead to multi-day increases in diastolic.

 

[Kafka82]

Hi,
I did the Incell testing recommended by Dr. Bruce Patterson in Dec. 2022. When I had my video consult with him he noted after something like 24,000 tests he now has an algorithm for test results that differentiate ME/CFS from long Covid from Lymes. He said I was text book for ME/CFS, elevated SDL40 and VEGF but NOT CCL5 (I think those are the right acronyms). He has suggested the issue for us with these results is vascular inflammation and feels confident doing his protocol of Maravoric and Pravastatin for 4-6 weeks should help immensely. The muscle weakness/pain/achiness, fatigue, brain fog, hot and cold sensitivity, PEM, etc. I have the drugs in hand but haven't tried yet them as I am in the midst of getting over my 2nd round of 2-4 week "fake" Covid - tests negative but feels similar. Had actual Covid June 2022 and sought Dr. Patterson out in Dec. as PEM and general ME/CFS symptoms had gotten SO much worse post Covid. I am looking for others who have actually tried his protocol and found benefit. Anyone?

did you try the protocol? any improvements?

 

[Tmonkyi]

No, didn't proceed. It seems like most people need to stay on it for at least 12 weeks and Health Rising now has a poll which seems inconclusive. I am sooooo sensitive to medications and supplements and so unclear if it is really that promising, not willing to commit that much money to it. So, now I am sitting here with a months worth of maravoric... ($500) If anyone is interested, I am happy to send as long as you do it under a doctor's guidance. Not selling it, and maybe it's not okay to send someone else a prescription so apologies if that is not allowed on the forum here. Seems wasteful to just keep it when I am 90% sure I don't want to run the experiment. I haven't heard one story of anyone with ME/CFS who seemed to benefit from it, which is strange.

 

[Kafka82]

No, didn't proceed. It seems like most people need to stay on it for at least 12 weeks and Health Rising now has a poll which seems inconclusive. I am sooooo sensitive to medications and supplements and so unclear if it is really that promising, not willing to commit that much money to it. So, now I am sitting here with a months worth of maravoric... ($500) If anyone is interested, I am happy to send as long as you do it under a doctor's guidance. Not selling it, and maybe it's not okay to send someone else a prescription so apologies if that is not allowed on the forum here. Seems wasteful to just keep it when I am 90% sure I don't want to run the experiment. I haven't heard one story of anyone with ME/CFS who seemed to benefit from it, which is strange.

interesting - where is the poll? Did you develop CFS in the context of long covid or else? Why don't you try to see if you see improvements in a month time at least?

 

[Tmonkyi]

The poll is here: https://www.healthrising.org/blog/2023/03/21/patterson-long-covid-chronic-fatigue-lyme-poll/

I have had ME/CFS since 2007 but the PEM had gotten so much worse after getting Covid last June that I was advised to get tested via Patterson to see what came up. I finally landed back at my pre-Covid baseline in mid-December and had to wait to start Patterson til February for other reasons. IF I hadn't at least recovered a little from the Covid-related worsening, for sure I would have tried it as that took me to housebound status and I was feeling pretty desperate and would have tried just about anything. Why not try? Good question. I think I am kind of over being an experiment - all my own doing, of course! I did a ton of treatments last year, spent a ton of money, and just exhausted myself and feel like I just need a break for a couple of years before signing up for something else.

Probably if there was a lot more robust evidence that this was a really good thing to do, I might be more inclined or at least try a pill or two to see if I tolerate it - but so far I haven't been in the mood. Most medications just make my brain feel like it is being literally fried and I can't do it for more than a day -