long hauler index

Results for my Bruce Patterson cytokine panel came back. Quite high on almost every cytokine. Long-hauler score is positive. I did get worse after the vaccine w/ the inflammatory enthesitis, but then again my issues pre-date the vaccine.

Curious if targeting these cytokines w/ pattersons protocol can help regardless of cause

https://ibb.co/34xwcdb

Did the usual treatment for covid (eg ivermectin, atovaquone, nitazoxanide) not work for you?

Covid can be hard to get rid of, but 6-8 weeks of mepron worked for me.

i think its well worth a go dcd - the cytokines are the control chemicals of the immune system after all

it wouldn't surprise me if they wax and wain from day to day

but if you can find a treatment that damps down the high levels from occurring - then it could hep reset the system.

keep us posted

Interesting. I didn’t know this test panel existed. Do you have Buhner’s Lyme book? Try looking up these cytokines in the index and reading what he wrote about them. I know some of them are mentioned.

Curious about the VEGF. That is vascular endothelial growth factor. It is affected by CIRS and Bartonella. According to Shoemaker, “deficiency of VEGF is quite common and is a serious problem in biotoxin illness patients.” Shoemaker’s normal range for VEGF is 31-86 pg/mL. In Bartonella, VEGF can be elevated.

I assume this is included in a COVID long haulers test because COVID affects blood vessels?

Do you know if patients can get this test panel without a doctor’s order?

Yup you can order the panel yourself:

https://radiancediagnostics.wufoo.com/forms/z1wvq0dp0foifq2/

This is a freaking great presentation:

https://www.youtube.com/watch?fbclid=iwar1ddp5hny1efrwoaz9-sft8ccvqymx4zq6xsbojuj3tmyg7selsl8cnx9o&v=h2xywims2q0&feature=youtu.be

Discusses the overlap and differences immunologically between ME/CFS, chronic lyme, and long-covid. Patterson claims to actually be able to tell using his panel and machine learning who has what.

It sounds like the vascular inflammation, for which VegF is a marker that i scored extremely high on, may be behind the neuropathy. Very curious what happens when I try the protocol.

Another thing that was interseting, to build on our discussion on EBV from yesterday, was he's seeing reactivated EBV in a lot of long-haulers. If I heard the slide right he thinks people with low CD8+ have immune suppression which allows for reactivation.

My LLMD Dr K thinks I may be a long hauler (either V induced or an asymptomatic case during omicron wave) so I am doing this protocol. I am about 3-4 weeks in - my initial protocol is fluvoxamine (an ssri also known as luvox) and a baby aspirin. I’m also taking h1/h2 antihistamines. I notice some improvements and hope to add a statin or ivy to my protocol when I talk to my doc in a week and a half. I have a screenshot of Patterson’s protocol and what meds are used for which cytokines but can’t post images in here. VegF and scd40L are the 2 markers for vascular inflammation and the drugs they select from for those 2 are the same: maraviroc (an hiv drug and the only real exotic drug on their list), statin, baby aspirin, or fenofibrate (old school anti cholesterol)… except now I think they are also heavily using plavix as well.

If Patterson is right this is an entirely new way to treat chronic Lyme. Worth a shot since most drugs are very common and well tolerated by most. As I said before maraviroc is the only exotic drug on there but they do use it quite often, my LLMD doesn’t want to be so aggressive from the jump.

darn rainy, you are so thoughtful and helpful sometimes. Really just brought a tear to my eye, not even kidding. Next time I get fed up w humanity I'm going to remember people like you exist.

This actually is very helpful. I didnt realize my VEGF was the worst offender. That was actually reassuring to see given we know it can cause neuropathy, and its my highest weighted marker as you pointed out. Targeting that makes sense. There's some info in the group about each of these cytokines so will look at my highest ones on your ranking.

Post Edited (dcd2103) : 5/15/2022 7:18:53 PM (GMT-6)

hey quin, yea its high in vegf. High in a lot of things tho. Autoimmune neuropathy (cidp for example), covid, long covid, vasculitis i think. I'm not sure if mine is high from bart, a virus, my autoimmune neuropathy.

Just hoping by targeting it i can quiet this down a bit more. I've been trying LDN for the past 3 weeks on ultra low doses (started at 1 drop/.05mg. Worked up to 3 drops/.15mg). It's driven my neuropathy crazy, throwing in the towel, did so much damage to my nerves its not worth it. F' me, back to just ivig, only thing that works

Garzie said...
Rainy - that's a good way of evacuating the results - roughly equivalent to looking at how many standard deviations away from the norm the result is - good work!

dcd, i think i recall reading that erythromycin inhibits VEGF powerfully - even in smaller than typical human doses.

not sure if even low doses are possible for you with your sensitivities - but might be worth looking into

here are a couple of studies

the first one shows it down regulates the immune attack stimulated against bone implants via this pathway also
https://pubmed.ncbi.nlm.nih.gov/19262986/

the second one is in bacillary angiomatosis - which is driven by high VEGF - and shows erythromycin is able to completely reverse the effects - where other abx do not - so is not acting via its antimicrobial pathway - but a separate mechanism
https://academic.oup.com/jid/article/193/3/380/2191679

Interesting garzie. Also interesting that erythromycin is used as a pro-motility drug, so has that benefit too for those of us w/ SIBO. Will look into this.

Quin said...
dcd: LDN seems to stimulate the immune response a bit. I've noticed some interferon effects from it, but only when I have a viral infection. It never seemed to affect Lyme or bart much. I would guess that if you're getting this effect, it might be a virus triggering something autoimmune.

This is super interesting, as I've been starting to wonder about a virus. Thank you for sharing this quin. Would that mean that in the long term it would help you clear said virus?

What i find odd is that the glial cells are supposed to be upregulated in autonomic neuropathy, and ldn is supposed to quiet them, yet it seems to have the opposite effect on many people.

Miraviroc is part of the patterson protocol, and I've seen people reporting its helping their neuropathy. It stops HIV from reproducing and also targets the rantes cytokine, which i had elevated and is implicated in post-viral syndrome. I think i will push for this.

Yea anything that helps me clear a virus is likely to cause too much pain for me to handle i think, until i can get the neuropathy under control first.

although I read a paper that showed that valtrex is actually effective, contrary to popular belief. You just have to use it for 1-2y. Over the short term it inhibits lytic replication, but doesnt kill infected b-cells. But over the long term, if you suppress replication and limit reinfection of more b cells, eventually the infected b-cells die and are replaced.

I do worry that this is an exercise in futility tho. Lets say it is EBV, which i have no clue if it is...and I clear every last EBV cell from my body. Its so prevalent I'd just be reinfected again. Problem is my immune system reacts to it in the first place. Hopefully thats where Miraviroc can be of some benefit, in calming that response.

Post Edited (dcd2103) : 5/16/2022 8:28:18 AM (GMT-6)

One way to deal with herpes viruses is to take disulfiram, which reactivates the virus (see https://www.betterhealthguy.com/episode111). This then provokes an immune response which clears the virus. I've seen the same effect with valproate (which I mentioned here https://www.healingwell.com/community/default.aspx?f=30&m=4290706).

Of course you don't want to do that if it's provoking an autoimmune attack.

There was some research on spironolactone inhibiting EBV. Sprionolactone isn't a great thing to be taking, but maybe a short trial would be worth a try just to see if it really is EBV that's causing your problem.

Mysteriously, I have repeatedly tested negative for antibodies to EBV. This is surprising since almost everyone is infected. Assuming I really was infected at some point, either my immune system just doesn't react strongly to it, or possibly I got the viral load low enough from repeatedly using valproate that it's undetectable.