Anything new in cfs research ie Antibiotics

[heapsreal]

Thanks I'll take a look.

Yes I'm aware of that, but having your cell membranes made up of unstable and vulnerable fats is what I meant more specifically. They are more susceptible to damage by other oxidants rather than a source of oxidative stress (unless you ingest already degraded fats, which would be even worse).

Not sure what you take, but you should make sure that you supplement a balanced amount of the various tocopherol/tocotrienols and don't just use a high dose of alpha-tocopherol as that will dominate the enzymatic transporter and potentially cause you to be deficient in the others. I have posted about this in more detail before, if you're interested I can find a link to that post.

Mixed tocerophels

 

[heapsreal]

I also feel better on antibiotics. Still don't get a lot of energy but they do something for me. My mood definitely improves and other things seem to stabilize for me.



I like Dr Marty Ross' website because he gives both traditional (antibiotics) as well as herbal treatment protocols for the different infections. https://www.treatlyme.net/lyme-disease-treatment-guidelines/

Also if you're looking for a topic (for instance Bartonella) do a search as well because often he covers it on more than one post.

I've also been trying the herbals more since getting antibiotics is hard. So far herbals don't seem to work as well for me as the abx (antibiotics). I have very strong reactions to them though so I have to do tiny amounts when I add a new one in.

What other herbals have you tried for lyme etc??

 

[heapsreal]

Update so far since relapse.
Been on doxy since sept. Bactrim 10days in october and about to finish another 10 days of bactrim and about to finish 5 days of flagyl. Herb berberine through sept and oct then stopped, added Cryptolepis 1st of november. Artemesia 5days on and 2 days off for last 2 months and continue another month then rest from it for a month or two. The last 10 days and next 2 weeks ive been taking cycloferon injection every 2nd day to help increase immune function. One nystatin capsule every morning to prevent candida and one probiotic 100 billion bacteria capsule. Famvir has been regular this whole year from memory. Sorry its scattered but its mostly what ive been doing since september.

The last month or so ive had less severe headaches but still constant. A heavier sort of fatigue, like my body needed it as it was trying to recover. I was having moments of clarity and urges to do things but werent lasting long or a wave of fatigue hits and reminds me not to be stupid. I still work 4 days a week but other than that im mostly in bed. The weekend just gone i slept most of it. Eg i woke up saturday morning at 8am and had slept well and 8am is abit of a sleep in for me. By 1030am im feeling slightly off/fatigue so lay down in bed just for half an hr, next thing i know its 530pm. Then im in bed by 10 or 11pm and thats how its been if not at work although the sleep i had saturday during the day was a suprise.

i woke up monday 5am for work and felt ok. Cant say i even had a headache at all, all day, highly unusual. When i got home something small to drink and eat and lay down to rest and as usual procrastinate about mowing the yard. But thought give myself an hours rest and time for the weather to cool down some. But i have these intentions and nothing happens but this time i thought stuff it and got up. Got the mower ready and looked at the backyard, Struth! Set the mower blades at their highest as the grass was to long and thick plus no catcher as id be emptying it every 5 steps. Im so deconditioned but i mowed the backyard which took me an hr and my lower back was cramping the whole time. Front yard is for a few days time and not as hard.

Besides the lower back i feel ok. This afternoon back is good but wasnt going to push it and do the front yard. 24hrs so far no pem, im not expecting none but if i take it easy today and tomorrow and see how it goes.

I was probably an 8-9/10 prior to relapse at beginning of 2020 and this is the most promising ive been but still a short window thats opened. Before the relapse if i felt abit off for a few days like sinusitis but it could easily have been lyme, myco, babesia etc id do 2 weeks of doxy or bactrim and this was probably every couple of months along with staying on famvir, that maintained my level of function. When i first had the relapse and constant headaches a ct scan showed my sinuses clear, which has me leaning towards the other bacterial infections.

I will probably move to abx as required once i stabilize, plus also first want to try staying on Cryptolepis and or alternating it with artemesia.

I will stay on doxy, crypto and art for a few weeks??? Then stay with doxy and crypto and add rifampin for 2 weeks and berberine for a month or so. Alternate 2 wks of a different abx and then back to just my basic doxy/crypto.

All the abx before ive had herx's from and then improved, besides bactrim where i just feel better on it. So 2yrs of feeling like crap from a relapse and taking 3 months to start seeing positive signs, shows how long it can take and i have a heads up as im repeating whats worked before.

Ps i cant say the methylation supps have helped as i ran out about a month ago and shipping anything here is slower than when captain Cook sailed out here in 1770, but i will continue with them when they arrive.

Cheers.

 

[GlassCannonLife]

Update so far since relapse.
Been on doxy since sept. Bactrim 10days in october and about to finish another 10 days of bactrim and about to finish 5 days of flagyl. Herb berberine through sept and oct then stopped, added Cryptolepis 1st of november. Artemesia 5days on and 2 days off for last 2 months and continue another month then rest from it for a month or two. The last 10 days and next 2 weeks ive been taking cycloferon injection every 2nd day to help increase immune function. One nystatin capsule every morning to prevent candida and one probiotic 100 billion bacteria capsule. Famvir has been regular this whole year from memory. Sorry its scattered but its mostly what ive been doing since september.

The last month or so ive had less severe headaches but still constant. A heavier sort of fatigue, like my body needed it as it was trying to recover. I was having moments of clarity and urges to do things but werent lasting long or a wave of fatigue hits and reminds me not to be stupid. I still work 4 days a week but other than that im mostly in bed. The weekend just gone i slept most of it. Eg i woke up saturday morning at 8am and had slept well and 8am is abit of a sleep in for me. By 1030am im feeling slightly off/fatigue so lay down in bed just for half an hr, next thing i know its 530pm. Then im in bed by 10 or 11pm and thats how its been if not at work although the sleep i had saturday during the day was a suprise.

i woke up monday 5am for work and felt ok. Cant say i even had a headache at all, all day, highly unusual. When i got home something small to drink and eat and lay down to rest and as usual procrastinate about mowing the yard. But thought give myself an hours rest and time for the weather to cool down some. But i have these intentions and nothing happens but this time i thought stuff it and got up. Got the mower ready and looked at the backyard, Struth! Set the mower blades at their highest as the grass was to long and thick plus no catcher as id be emptying it every 5 steps. Im so deconditioned but i mowed the backyard which took me an hr and my lower back was cramping the whole time. Front yard is for a few days time and not as hard.

Besides the lower back i feel ok. This afternoon back is good but wasnt going to push it and do the front yard. 24hrs so far no pem, im not expecting none but if i take it easy today and tomorrow and see how it goes.

I was probably an 8-9/10 prior to relapse at beginning of 2020 and this is the most promising ive been but still a short window thats opened. Before the relapse if i felt abit off for a few days like sinusitis but it could easily have been lyme, myco, babesia etc id do 2 weeks of doxy or bactrim and this was probably every couple of months along with staying on famvir, that maintained my level of function. When i first had the relapse and constant headaches a ct scan showed my sinuses clear, which has me leaning towards the other bacterial infections.

I will probably move to abx as required once i stabilize, plus also first want to try staying on Cryptolepis and or alternating it with artemesia.

I will stay on doxy, crypto and art for a few weeks??? Then stay with doxy and crypto and add rifampin for 2 weeks and berberine for a month or so. Alternate 2 wks of a different abx and then back to just my basic doxy/crypto.

All the abx before ive had herx's from and then improved, besides bactrim where i just feel better on it. So 2yrs of feeling like crap from a relapse and taking 3 months to start seeing positive signs, shows how long it can take and i have a heads up as im repeating whats worked before.

Ps i cant say the methylation supps have helped as i ran out about a month ago and shipping anything here is slower than when captain Cook sailed out here in 1770, but i will continue with them when they arrive.

Cheers.

Sorry what is cycloferon and where did you get it? Drugs.com has three different ingredients from 3 different areas - seems unclear as to what it actually is..

Is this protocol from a doctor, somewhere online, or did you just put it together yourself?

 

[heapsreal]

Sorry what is cycloferon and where did you get it? Drugs.com has three different ingredients from 3 different areas - seems unclear as to what it actually is..

Is this protocol from a doctor, somewhere online, or did you just put it together yourself?

Cycloferon is an interferon inducer, popular in the eastern block countries. It can increase nk function which it has be shown in me on blood work. It comes in ampoules and tablets https://cosmicnootropic.com/?omnise...5d6ae75)&utm_medium=email&utm_source=omnisend , this is where i bought it last time. There is a brand of cycloferon that is acyclovir. If you search PR you will see plenty of posts from me. You could look at it as in a similar class to immunovir.

This is no protocol from a doctor. Its what i have found helps me after having cfs for 20yrs and going through alot of trial and error. I wouldnt advise blindly following it. I post it as an example of what people could look into and how varied and individual treatments may have to be. No one hit wonders. Theres alot of supps and hormones and other meds i use but the recent post is more directly at my cfsme.

 

[GlassCannonLife]

Cycloferon is an interferon inducer, popular in the eastern block countries. It can increase nk function which it has be shown in me on blood work. It comes in ampoules and tablets https://cosmicnootropic.com/?omnisendAttributionID=email_campaign_5e404d844c7fa44855d6ae75&omnisendContactID=5b37a7a1b988ac5adbbd8b90&omnisendScopeID=5b37a797597ed7337927e28b_2_10530426&utm_campaign=campaign: Copy of: CosmicNews: 03/02-09/02 (5e404d844c7fa44855d6ae75)&utm_medium=email&utm_source=omnisend , this is where i bought it last time. There is a brand of cycloferon that is acyclovir. If you search PR you will see plenty of posts from me. You could look at it as in a similar class to immunovir.

This is no protocol from a doctor. Its what i have found helps me after having cfs for 20yrs and going through alot of trial and error. I wouldnt advise blindly following it. I post it as an example of what people could look into and how varied and individual treatments may have to be. No one hit wonders. Theres alot of supps and hormones and other meds i use but the recent post is more directly at my cfsme.

Ah cool, thanks, cosmic say it is "meglumine acridone acetate". I'll look into it further.

I wasn't planning on copying it blindly, was just interested in how you came up with it as it seems quite complex.

 

[scisolver]

I was just looking up to see if anybody was posting about pneumoniae infections causing ME/CFS / fibromyalgia etc. I have heard of these many times over the years but just saw a video from a doctor saying that based on when your symptoms started if you had mono then think Epstein Barr and if you had a lung infection then think Mycoplasma Pneumoniae or chlamydia pneumoniae.

EDIT: For me I think mine may have started after the worst lung infection of my life that lasted for months shortly after I started allergy immunotherapy shots and I had to stop them and never resumed them. It started out with a stiff neck and didn't get to fatigue and paresthesias and many other symptoms until a year after that and then progressed to muscle pain spreading and more fatigue.

I see that the poster mentions the antibiotics like doxycycline, rifampin and Bactrim. Another person mentions these plus azithromycin, which is actually the four I was taking for six months when I tried them. The doxycycline was low dose pulsed though. The doctor told me he was treating borrelia and maybe bartonella infection. I was doubtful, but I thought if I had any infection it didn't really matter if he didn't know as long as he had experience with results, which I wasn't even sure about that much.

I stopped after 6 months when he wanted me to continue for years or life I think. I started to get really bad paresthesias and bee sting pains all over my body which lasted for a few years after I stopped the antibiotics. They would last for about 18 months and then came back if I had an upper respiratory infection. Thankfully after about 5 years they stopped coming back even when I had upper respiratory infections.

I don't get upper respiratory infection in recent years and it may be due to supplementing with cholecalciferol, which is an important seco-steroid hormone for the immune system and many other things.

More recently I've been looking at doing the Coimbra protocol which is using 25/mcg per kg cholecalciferol of body weight over a period of a few years to treat auto-immune diseases. I also recently discovered Dr. Mark Gordon from https://tbihelpnow.org and his work on brain inflammation and traumatic brain injuries and treating that with pregnenalone and Dehydroepiandrosterone (DHEA), which are two neuro-steroids. So, I'm planning on adding those two.

I did a quick search just now and found DHEA may be effective against Epstein Barr: https://pubmed.ncbi.nlm.nih.gov/6268330/
And, something about DHEA on mycoplasma
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725024/

These are both immunomodulatory and as Dr. Mark Gordon said can lower IL-6, though I've had that tested and it was not elevated. But here is a paper I just found talking about some immune effect:
https://pubmed.ncbi.nlm.nih.gov/12692147/
and also I found this on adrenal function related to pneumoniae infection outcome and DHEA is produced by adrenal.
https://erj.ersjournals.com/content/36/3/615

I also believe DHEA is used for B-Cells and I think they are involved in ME/CFS, though I think it may increase production and I think normally the idea is they should be temporarily wiped out because they are causing a problem.

 

[scisolver]

Many people have heard of Dr. Teitelbaum in the ME/CFS world. I just found this article of his from over 10 years talking about using statins to treat a chronic viral infection as a new idea for ME/CFS. I haven't heard any updates though.

https://www.psychologytoday.com/us/...ng-new-discovery-in-treating-cfs-fibromyalgia
"Viral infections cause your body to make interferon, which suppresses the mevalonic acid pathway that makes cholesterol and pregnenolone."

The idea is that we are suffering from a disease caused by viruses which then causes a syndrome similar to statin adverse reaction (poisoning?). But, you can prescribe statins to kill the virus while at the same time giving the things that the body and the statin are blocking, like pregnenalone and CoQ10.

This is interesting, because this is what I was looking into doing anyway without knowing about any viruses, except for taking a statin. I thought it was lower neuro-inflamation and give my body what it needs. I'm still waiting on lab test results on my pregnenalone and DHEA levels.

I was researching the mevalonate pathway too after hearing about it on a health podcast where they were talking about something called Geranylgeraniol (GG) that is higher up in the chain than CoQ10, though the Dr. Tan guy who seems to be the expert says to take both Geranylgeraniol (GG) and CoQ10 for general health and especially if taking statins.

So, if I wanted to re-activate the mevalonate pathway I would take pregnenalone, DHEA, Geranylgeraniol (GG), CoQ10. Maybe also pantethione since that is the rate limiting cofactor for Acetyl CoA and Acetyl CoA is two steps before the creation of mevalonate. However, I think I read that Pantethine decreases cholesterol, which doesn't make sense to me since that is needed to create all the hormones. But, maybe it just means it accelerates the conversion so there is less cholesterol because it is being converted like it should be.

The only question this raises is if there is a virus that the immune system is trying to suppress by down-regulating the mevalonate pathway then up-regulating it may make the virus able to replicate much more again. However, as I posted above I think DHEA has anti EBV effects. Maybe it wouldn't be bad and maybe some kind of feedback loop got stuck where DHEA got surpassed to keep the virus in check but DHEA also helps fight it. This is really speculative and I don't really even know if there is a virus.

I did go to a neuro-immune center and they tested me for viruses. I don't remember if I tested positive for EBV, but I think they wanted me to go on some anti-viral drug. But, I ended up not pursuing that path. I'd have to check the records.