Pulsed high dose methylprednisolone + inosine + inositol = cured?

pattismith

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Last methylprednisolone intake was 100 mg on 26.02.20.
I stopped because of the ongoing covid-19 epidemic...
Pains were gone, headache was much improve, fatigue and brain fog were improve!
Then pain started to increase again less than three weeks later....within only few days, it's getting worse.
Corticosteroids are not helping much to fight the corona, but I need to take some.
 

pattismith

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So here I am back to methylprednisolone, what a relief!!
I feel quickly so much better with energy, mobility, brain function, amazing!

I had some reasons to think the coronavirus had already hit my coworkers and me, after one got acute bronchitis/rhinitis and fever, the other got rhinitis/pharyngitis and me and my husband got very little symptoms.

So I waited about two weeks and started again pulsed methylprednisolone two days ago. This time I changed the protocol and added a small dose of Plaquenil (hydroxychloroquine) 200 mg every other day, and Azithromycin 250 mg every other day (not the same day than Plaquenil for the moment).
Plaquenil + corticosteroids are used in protocols for Sjogren and Lupus, so it makes sense to me to use that kind of association.

With such a light dosage I don't fear cardiac toxicity, but still do that under cardiac monitoring and QTc testing, as I have already some arrhythmia.
 

bertiedog

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it may be that I have an underlying auto-immune disease (I have auto-immune thyroiditis but could have something else) that makes me more sensitive to drugs, possibly with immune complexes in the blood.
Datis Kharrazian, DHSc, DC,MS says in his book Why Do I have Thyroid Symptoms When my Lab Tests are Normal that doctors have got thyroid disease all wrong. He is talking about Hashimotos which covers the majority of sufferers and he insists this isn't a thyroid problem at all its an IMMUNE SYSTEM issue. The book goes through all the many things that can cause this and what one can do to improve the situation and what can cause the autoimmunity.

Since being off gluten (2 years) and dairy (1 year) my antibodies are now normal for the first time in 20 years and I have been able to drop my thyroid meds down a bit from 2 grains to 1 1/2 grains with just 25 mcg thyroxine. Unfortunately it hasn't done anything for the PEM I suffer when I have physically been over doing it but I can feel very well on many days.

Pam
 

pattismith

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Datis Kharrazian, DHSc, DC,MS says in his book Why Do I have Thyroid Symptoms When my Lab Tests are Normal that doctors have got thyroid disease all wrong. He is talking about Hashimotos which covers the majority of sufferers and he insists this isn't a thyroid problem at all its an IMMUNE SYSTEM issue. The book goes through all the many things that can cause this and what one can do to improve the situation and what can cause the autoimmunity.

Since being off gluten (2 years) and dairy (1 year) my antibodies are now normal for the first time in 20 years and I have been able to drop my thyroid meds down a bit from 2 grains to 1 1/2 grains with just 25 mcg thyroxine. Unfortunately it hasn't done anything for the PEM I suffer when I have physically been over doing it but I can feel very well on many days.

Pam
Hello Pam, I don't have Hashimoto, I have Grave's thyroiditis, but I was told I could switch to Hashimoto.
I take high dose Lipoic acid and after 6 months, all my anti-thyroid antibodies are back to normal, which is great. No Hashimoto for the moment.
I'm happy for you if the gluten free diet works for thyroid immunity!
I didn't eat any gluten since 2011, but I did some deviation just a month before my hyperthyroidism showed up!
 

pattismith

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@Hd-x

I thought I would let you know that my protocol (methylprednisolone every other day x 14 days + Plaquenil 200 mg every other day x 14 days + Azithromycin 250 mg every other day but not the same day as Plaquenil x 14 days) correlates with less Premature Ventricular Contraction (I can only see one in my ECG if doing repiratory/Vasalva maneuvers). I don't know if it is meaningful, but I plan to keep this treatment plan after a break because I feel tired.
 

Hd-x

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@pattismith
Thank you for letting me know how it is going on for you and what helped in yours case. :thumbsup:
I am now struggling since 4weeks with PCV and thats pretty annoying because I was on a very very good recovery way. I started 7month ago with some light training and 4weeks ago I was able to lift heavy weights, also my cardio training showed first time some real progresses (over 30Pushups without getting PEM) and now I am from 1 day to another day not able to perform just 3 Pushups without getting a salve off PVCs. :devil:

The Meldonium didnt solve the arrythmia problem, but thx. to Meldonium my fatigue is nearly gone which makes the situation at last (mentally) even more frustrating.
I wasnt able many years long to do anything because off postviral CFS and long time bedridden -
now I am able to do anything , but cant do anything because off these unexpected heart trouble as so long it hasn´t been checked by a cardiologists if these PVCs are harmless or dangerous.

Certainly I hope that it may be something harmless like perhaps a strange form off "athlete heart" as a result off the weight lifting (after so many years "resting+pacing" and abstinence from any exercises),
but even if so -I have no idea how do deal (mentally) daily with this PVC sh*t.
 
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pattismith

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@pattismith
Thank you for letting me know how it is going on for you and what helped in yours case. :thumbsup:
I am now struggling since 4weeks with PCV and thats pretty annoying because I was on a very very good recovery way. I am started 7month ago with some light training and 4weeks ago I was able to lift heavy weights, also my cardio training showed first time some real progresses (over 30Pushups without getting PEM) and now I am from 1 day to another not able to perform just 3 Pushups without getting a salve off PVCs. :devil:

The Meldonium didnt solve the arrythmia problem, but thx. to Meldonium my fatigue is nearly gone which makes the situation at last (mentally) even more frustrating.
I wasnt able many years long to do anything because off postviral CFS and long time bedridden -
now I am able to anything , but cant do anything because off these unexpected heart trouble.
Like you I noticed that exercise increases PVC.
This is something that needs attention, PVC can have bad evolution to some more serious arrhythmia.
I hope your doc will help you to manage this.
 

Hd-x

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@pattismith
My doc isnt any real help (obvisously like in most CFS cases)
I have a meeting in 2month with a cardiologists, for doing Ultrasonic - a long term ECG will be perfomed earlier (with some luck during the next 2 weeks)
For the case that the cardiologist didnt find any dangerous PVCs,
I guess I would need at last a sport cadiologists and obvisously also a sport psychologist to handle it (mentally).
I can handle mentally chronic pain and a lot off things, but not such heart trouble - it robbs all my concentration.

methylprednisolone every other day x 14 days + Plaquenil 200 mg every other day x 14 days + Azithromycin 250 mg every other day but not the same day as Plaquenil x 14 days
Was it the combination off all these drugs that helped or can you track down it to a single drug?
I know that Cortisone + Azithromycin is sometimes used in CFS + FMS, I am still wondering about Plaquenil - was there any specific reason why you take or need it?
 

pattismith

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@pattismith
My doc isnt any real help (obvisously like in most CFS cases)
I have a meeting in 2month with a cardiologists, for doing Ultrasonic - a long term ECG will be perfomed earlier (with some luck during the next 2 weeks)
For the case that the cardiologist didnt find any dangerous PVCs,
I guess I would need at last a sport cadiologists and obvisously also a sport psychologist to handle it (mentally).
I can handle mentally chronic pain and a lot off things, but not such heart trouble - it robbs all my concentration.


Was it the combination off all these drugs that helped or can you track down it to a single drug?
I know that Cortisone + Azithromycin is sometimes used in CFS + FMS, I am still wondering about Plaquenil - was there any specific reason why you take or need it?
Your arrhythmia needs a special attention, glad you have the cardiologist appointement. Don't overdo until then!
It may be that methylprednisolone alone is helping my PVC, I don't know.

As I already mentioned to you, arrhythmia is frequent in some auto-immune diseases like Lupus or Sjogren. SFN is also a known comorbidity of Sjogren (I have SFN with autonomic failure).
I don't have any Lupus nor Sjogren diagnosis, but I have some high auto-antibodies against adrenergic receptors, and also had auto-immune thyroiditis, so auto-immunity is likely involved in my disease.

In Sjogren and Lupus, arrhythmia is known to improve when the disease is treated, so I think my chance of improving might be immunosuppressive treatment of the Sjogren type. Several drugs are used in Sjogren and among them Corticosteroids and Plaquenil.
I choose to start with methylprednisolone (MP) first and felt better; (mostly my headaches/brain fog/widespread pain syndrome improve).
I stopped when pandemic arrived, then decided to go back on MP (with a lower dose) and to add Plaquenil.
Azithromycin has already improved my spine pain in the past, it's the reason why I added it.
I thought I could increase the dose, but feel too tired for the moment.
 

Hd-x

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As I already mentioned to you, arrhythmia is frequent in some auto-immune diseases like Lupus or Sjogren. SFN is also a known comorbidity of Sjogren (I have SFN with autonomic failure).
Supraventricular tachycardia is also common in MCAS, but I dont know how common PVC are in MCAS -
I am affraid it could be MCAS related, because medications would be difficult in such a a case (no ß-blockers, no verapramil and so on if you have MCAS)

The PVC itself happened just few minutes after a failed T-injection (I hitted a small vein :whistle: ). The oil dose itself wasnt enough to cause any (dangerous) embolism, but it was enough oil to cause (in theory) micro embolism.
Normally such micro embolism still cause temporary breathing problems + heartburn, but this should usually quickly fade away. Well, since it hasn´t fade away, I think it was not the T-Injection or it still triggered it in whatever so strange way that the symptoms stay now "permanently".
I am not the youngest guy anymore (50years) and so my other theory is like mentioned that 7month training may perhaps led to some strange kind off athlete heart after so many years sport abstinence.
The worst case would be any heart damage , otherwise I had Ultrasonic 2018 and everything was looking fine.

Certainly I was also considering if perhaps my CFS "strikes back", because off exercising - otherwise I guess not, if my immunological bloodwork + Cytokine levels (no longer Th2 shift) look fine (I also dont show for now any PEM/PENE signs nor any "flue-like" symptoms like in past).
Or in other words; I have no real clue what causes it and still some guesses without any proof behind.


so I think my chance of improving might be immunosuppressive treatment
During the first years I was told (from docs without any CFS knowledge) that I neeed to stimulate + boost/push my immune system, but this was a wrong advice.
Further diagnosis showed that my immune system was all the time running on "full speed" and that this caused the fatigue + many other CFS related problems in my case.
So most off my improvements I was also getting from some kind off immunosuppressive treatment or more specifically said by reducing the chronic IL-inflammation + damping mastcell activity, which returns/results in lowered overall immune system activity.

I choose to start with methylprednisolone (MP) first. It may be that methylprednisolone alone is helping my PVC, I don't know.
A funny thing is that I tried over the years so many different drugs and supplements that I cant count them all, but curiously I never tried Cortisone and perhaps I should now simply try it out.
 
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pattismith

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Supraventricular tachycardia is also common in MCAS, but I dont know how common PVC are in MCAS -
I am affraid it could be MCAS related, because medications would be difficult in such a a case (no ß-blockers, no verapramil and so on if you have MCAS)
I have similar problem as I tried beta-blockers when I was hyperthyroid and couldn't tolerate it because of dry eyes.

The PVC itself happened just few minutes after a failed T-injection (I hitted a small vein :whistle: ). The oil dose itself wasnt enough to cause any (dangerous) embolism, but it was enough oil to cause (in theory) micro embolism.
Normally such micro embolism still cause temporary breathing problems + heartburn, but this should usually quickly fade away. Well, since it hasn´t fade away, I think it was not the T-Injection or it still triggered it in whatever so strange way that the symptoms stay now "permanently".
I am not the youngest guy anymore (50years) and so my other theory is like mentioned that 7month training may perhaps led to some strange kind off athlete heart after so many years sport abstinence.
The worst case would be any heart damage , otherwise I had Ultrasonic 2018 and everything was looking fine.

Certainly I was also considering if perhaps my CFS "strikes back", because off exercising - otherwise I guess not, if my immunological bloodwork + Cytokine levels (no longer Th2 shift) look fine (I also dont show for now any PEM/PENE signs nor any "flue-like" symptoms like in past).
Or in other words; I have no real clue what causes it and still some guesses without any proof behind.



During the first years I was told (from docs without any CFS knowledge) that I neeed to stimulate + boost/push my immune system, but this was a wrong advice.
Further diagnosis showed that my immune system was all the time running on "full speed" and that this caused the fatigue + many other CFS related problems in my case.
So most off my improvements I was also getting from some kind off immunosuppressive treatment or more specifically said by reducing the chronic IL-inflammation + damping mastcell activity, which returns/results in lowered overall immune system activity.


A funny thing is that I tried over the years so many different drugs and supplements that I cant count them all, but curiously I never tried Cortisone and perhaps I should now simply try it out.
It would make sense if you have any objective auto-immune process at play, which I do.
I don't know how relevant it is to take cortisone with MCAS though...

Like you I am past 50 years (my ME/CFS/Fibro is 35 years old), so heart age may be a factor as well?
Heart damage is also a possibility, whatever the cause (rheumatic disease/small infarctus/myocarditis).
You need to be very cautious with your heart, stay safe!
 

sb4

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because I was on a very very good recovery way.
he Meldonium didnt solve the arrythmia problem, but thx. to Meldonium my fatigue is nearly gone which makes the situation at last (mentally) even more frustrating.
What has lead to your significant improvement? How long have you been taking Meldonium and what do you think it has done for you?
 

sb4

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Hd-x

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I don't know how relevant it is to take cortisone with MCAS though...
I don't know how relevant it is to take cortisone with MCAS though...
It is common secound line treatment to give for short time high dose Cortisone to keep MCAS symptoms at bay if the 1st-line treatments failure (1st line = H1/H2 anthistaminika, mastcell stabilisators, Leukotrinie inhibitors, mastcell damping Benzo)

What has lead to your significant improvement?
I run a full ATP Regime (Testosterone, Creatinmalate, ß-Alanine, HMB, L-Citrulline, MSP, EAAs) + Inosine (*)
(*works for me for whatever so reasons as PEM buster).
The other thing I was doing to float my body with carbs, proteine, micro nutritions and so on (I have "leaky gut/malabsorbation" because off MCAS, so I have to take vitamin/mineral pills to keep proper levels)
Certainly doing all this is pretty worthless without caring about the immune system problems, I am convinced HSV1 (high HSV titer) is one trigger in my case and there is some evidence (Pridgen FM trial), so I was undergoing antiviral treatments (Valtrex + high Dose L-Lysine)
Also Candida was a big problem in my case and was getting ridd off it with Nystadine.
Against the bladder problems, I take D-Manose if needed.

Not all, but most off my immunological problems I got fixed with special formulated Quercetin, Curcumin ánd Cholin/inositol (some off the Vit/minerals may also helped somewhat)
All those stuff was carefully picked depending on my bloodwork and yes, it reduced exactly the abnormal increased Interleucine/cytokine like I hoped and shifts my immune system from Th2 mode back to "normal" mode.
The CNS part got damped if necessary with a mastcell damping benzo (it is part off MCAS treatment)
Another importand part to get better sleep and I also learned auto-suggestion to keep me mentally stable (just with these heart problems I cant take any benefits out off it o_O)

All these helped me to being able to do a little bit - I would call it "gymnastic" (with resistance bands, foam rollings, trigger point balls & so on) - to fix my muscular dysbalances first -> after doing so I was step by step carefully going back to my old sport (weight lifting), but I wasnt doing it clueless - I analyse each training with a software and track each single thing I do, this helps me to optimize things and to figure out if anything worsens my condition and/or led to unwanted PEM. Call it a special form off "diary" or so.
Since I was able to do a little bit sports, it further fixed some years long problems and significantly reduced the chronic muscle pain. (I dont need pain killers anymore)
I had some problems with cardio training (primary because off burning legs), but was also able with the time to get this going on.

So it wasnt at last 1 drug or 1 treatment, the combination off all these (many things) maked the turn.
It was no "magic pill" that helped "overnight", it was a progress off learning + understanding whats going wrong with my body over years.

What I was doing is at last somewhat similar like the S.H.I.N.E. protocoll from Dr. Teitelbaum, just in a little bit more agressive/experimental way. (S.H.I.N.E = Sleep, Hormones, Immunesystem, Nutritions, Exercise)

I dont take Meldonium that long, it was just 1 more step to get back to a "somewhat" normal life.
I am convinced that I somedays fully beat my CFS, but I know that there is no cure for MCAS & this SOD2 Polimorphismn which impaired my ATP synthesis --> so I will never have a 100% normall life, but for sure a better life then years ago where I was beddridden.
I take Meldonium @low dose and would advice to do so,
since it seems few ppl. had bad experience with high dose regime + crashed .
 
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pattismith

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I don't know how relevant it is to take cortisone with MCAS though...
It is common secound line treatment to give for short time high dose Cortisone to keep MCAS symptoms at bay if the 1st-line treatments failure (1st line = H1/H2 anthistaminika, mastcell stabilisators, Leukotrinie inhibitors, mastcell damping Benzo)


I run a full ATP Regime (Testosterone, Creatinmalate, ß-Alanine, HMB, MSP, EAAs) + Inosine (*)
(*works for me for whatever so reasons as PEM buster).
The other thing I was doing to float my body with carbs, proteine, micro nutritions and so on (I have "leaky gut/malabsorbation" because off MCAS, so I have to take vitamin/mineral pills to keep proper levels)
Certainly doing all this is pretty worthless without caring about the immune system problems, I am convinced HSV1 (high HSV titer) is one trigger in my case and there is some evidence (Pridgen FM trial), so I was undergoing some antiviral treatments (Valtrex + high Dose L-Lysine)
.
I had a trial with Valacyclovir but my kidneys started to get damages, so I had to quit. I moved back to high dose Lysine.
 

Hd-x

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@pattismith
How long have you taken it?
My longest course was 2month on Valtrex, because the doc dont want to prescribe it any longer for budget/cost reasons. I wasnt able to afford it with my own money, but had the luck that it seems the last Valtrex course was long enough so that I can keep it now with High Dose L-Lysin alone at bay/down.
Sometimes it was coming visible back on my lips if I visit the dentalist, but since I use a topical HSV creme bevore visiting the dentalist, luckily it hasnt come back anymore.
On my worstest days, I had that herpes BS also on my chin & check.
 
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