Nicotine?

LJS

LJS

Luke
Messages
213
Location
East Coast, USA
I have mild to moderate ME/CFS that was sudden onset in 2008 from an infection, I am on day four of 7mg nicotine patches. It still feels like I am on a IV caffeine drip. I haven't had to nap during the day over the weekend while on patches which I used to have to do and I am waking up early every night from the patches so it has increased energy. It has improved the aches and pains and I am less out of breath going up stairs. Negative symptoms are headaches and the restless hyped up on caffeine feeling. I am going to keep on it for a bit and see where it goes.

The first day or two I felt euphoric and somewhat high so this may be a little much for really sick people to manage at first. You may be able to put a piece of plastic over half the strip to lower the dose. From what I have read do not cut the patch as this supposedly causes it to be released faster but I can't find good data on that.

The important thing to note is nicotine patches are different from nicotine gum as it is a slow sustained released instead of a hit. If nicotine is blocking some receptor or inflammatory pathway it would make sense that you would want a slow sustained release instead of a hit. I know a lot of people have tried nicotine gum in the past for energy.

As of right now this is definitely doing something positive the questions are will it last, will I crash from it, and will it sustain with time.

The study author is retweeting a lot of random people's tweets that have little to no evidence basis behind it such that nicotine patches is working by people herxing or fighting hidden virus in the body which makes me feel far less confidence about the authors study and the science behind this. People are basically making up how this works at this point and the study author is hyping it up, not a good look. My smart ass side wants to throw in a BS theory as well to call out how ridiculous some of things people are saying but oh well. This treatment was low risk enough that I figured worth a shot.
 
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godlovesatrier

godlovesatrier

Senior Member
Messages
2,628
Location
United Kingdom
Ok so day two today - I took the 3.25mg I cut up off on Day 1 and replaced it with a 7mg patch. Nausea only came on when my blood sugar dropped at 5.30pm on Day 1.

Day 2: put 7mg patch on at 12pm, took it off at 6pm. Dizziness was a lot more bearable but still not great, tachychardia is a bit grim tho, GP saw I had a heart rate of 100bpm in the clinic and that was before I put the patch on. Anyway I feel edgy and anxious, like I did on siberian ginseng not that nice. I am pretty desperate to take it off at 6pm.

Before I put the patch on day 2 in the morning once I had recovered from the muscle fatigue and dizziness that I woke up with (took my supplements, had breakfast, took some valtrex - felt better). Whereas in teh days before this none of that had made me feel good just to be clear. So after I had recovered I went out to see my GP and I felt pretty good, prob even better after recovering from the worst of the nicotines effects.

I don't think I'll be able to take much more after tomorrow tho as I have a busy week ahead.

My main concern is that it will reactivate ebv, I do have a sore throat today but so far no other symptoms that I can sense or feel, so I will see how I get on.
 
maddietod

maddietod

Senior Member
Messages
2,902
Did you cut the patch in half on your first day? I'm told that this releases the nicotine quickly.

If you can only tolerate 7.5mg for a few hours, will you try going back to 3.5mg? You can fold the patch in half, cut through half of the plastic that covers the sticky part, and tape it down.

I haven't restarted my 3.5mg experiment yet.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,628
Location
United Kingdom
Hello,

No only for half an hour then I found that out took it off and put 7mg on. Made no difference anyway.

I've had ebv reactivate overnight, it's a very bad reactivation and symptoms started on day 1 but were not easy to spot, morning of day 3 however it was very easy to spot. So I will not be continuing with nicotine, which is ok valtrex has been working but it takes ages to work and I had kidney issues, I am restarting it now.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,628
Location
United Kingdom
Another pwme who tried nicotine:

https://twitter.com/i/web/status/1668045305034469377

In my case a lot of sore throat and other symptoms are in a flare since I did the nicotine. But I also found a study showing it surpresses NK cells, which has got to be very bad news for pwme. So I wouldn't recommend it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3585320/

"Nicotine exposure impairs the ability of NK cells to kill target cells and release cytokines, a process that is largely abrogated by nAChR β2 deficiency."
 
O

Osaca

Senior Member
Messages
344
godlovesatrier said:
Nicotine also reactivates herpes virus according to one study. Maybe if you're in the very early years of illness as with LC you can stil tolerate nicotine. We will see.
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It's a line of thought that has to be mentioned. Alot of fuzz about nicotine patches and a lot of research and hypotheses on Herpesviruses in LC/ME/CFS and seemingly no information on the two (you were the first who I've read mention it). Did you manage to get your EBV levels tested or was your reactivation based on your previous experiences and the typical symptoms of EBV (swollen lymphoids etc)?

Many studies are showing that specifically during the early phases of Long-Covid and acute Covid herpes viruses are reactivated (not only in terms of testing but even causing acute mononucleosis), possibly even more or at least different evidence compared to ME/CFS, so I don't really see that as a reason as to why it should work better in LC.
 
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godlovesatrier

godlovesatrier

Senior Member
Messages
2,628
Location
United Kingdom
There does appear to be a correlation which anyone who's been on this forum for over a decade will realise between early years and later years.

In fact whilst confusing the cyotokine page on me-pedia.org lists tons of studies that show this. Cytokine profiles change rapidly early Vs late. Stages of viral reactivation make total sense.

We desperately needed a longitudinal survey to put most of this data together :(

I respond very well to valtrex and have no symptoms of hsv 1 or 2 and it doesn't touch CMV so it can only be ebv.
 
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