Pulsed high dose methylprednisolone + inosine + inositol = cured?

[pattismith]

@Hd-x
years ago I had HSV recurrent problems, even on my face skin. I needed Valacyclovir some days each time, several times year, until I started Lysine.

My FT3 was low normal at that time, (I had Low T3 syndrome).

Note that you have to be careful with flavonoids because they lower T3 (Quercitine,...)

I started supplementing with Selenium methionine and Iodine. My T3 improved and I even was able to stop Lysine. The problem is that people predisposed to auto-immune thyroiditis are at risk to react to iodine, and I was not aware I was.
So I didn't checked my thyroid auto-immunity and I was hit last summer by Grave's disease....

It took me 6 months with low iodine diet + high Lipoic acid supplementation to get rid of it....All my thyroid-auto-antibodies are back to normal now hopefully.

 

[sb4]

@Hd-x Thats a ton of treatments your doing, good to hear it's lead to a significant improvement.

 

[Hd-x]

Thats a ton of treatments your doing, good to hear it's lead to a significant improvement.

Yes, lots off treatments, the worst part: A whole wardrobe full with drugs/supps that hadnt help anything (= much wasted money)
My (past) doctors were not any help, they just told me there is no cure for CFS and that I have to accept to be bedridden. They said even if might + magic happens that my CFS improve, my sportmen hernia, torn menisci, Impingement would hinder me, that it would be impossible to get ever back to weight lifting , that I am too old + ill.
All these suckers still told me what I shouldnt do, what I cant do anymore, not more they told me.

I never accepted all this and worked long time hard for my CFS recovery,
6years later I was able to perform a 163lbs BTN Overhead Press + 240lbs Benchpress. Certainly far away from my old strenght, but not that bad for "the old sick man". I have no clue if with the unexpected heart trouble I am able to continue sports, but there is satisfaction + victory for me in it that I proofed all these so called "Experts" (aka "quacks") that it was NOT impossible .
I am fine with me since them.
Certainly it will be (mentally) hard for me if doing sports would now end, but not any doctors - I will finally decide if it is over. Those doctors had no clue + idea what it means to be bedridden because off CFS and how hard it was to fight back to life, so they will not dictate my life.

The problem is that people predisposed to auto-immune thyroiditis are at risk to react to iodine, and I was not aware I was. So I didn't checked my thyroid auto-immunity and I was hit last summer by Grave's disease....

How are you treating it, did you consider a radio-therapy?
I personally don´t know what to think about my thyriod, I have a struma with few cold + hot nodes.
TSH-basal in blood work was sometimes low, sometimes within ref range - it was also "ok" after these "thryiod-stimulation-tests":
TSH after TSR stimulation: 4ng/l (ref <20)
TSH-RIA 0,77 (ref 0,3-35)
f T3 RIA 4.0 (ref 2,7-4,7)
f T4 RIA 1,17 (Ref 0,78-1,8)
TRAK <1 U/I
TAK 80,2 U/ml
Anti-TPO <8 U/ml
The thyriod doc told, I should take Iodine because off the struma.

Note that you have to be careful with flavonoids because they lower T3 (Quercitine,...)

It is like Cyproheptadine +mastcell damping Benzo necessary in my case because off MCAS, it is a Ester C Quercetin blend that also contains: Rutin, Bromelain, Citrus flavonoide, rose hip + Acerola extract. My T3 is in the upper range, so I guess it will not do much harm?
The flavonoide stuff itself works good so far (for MCAS) and a lot better then chromolyn, there are not much "safe"options left.
Other (chemical) MCAS drugs would have much more (serious) long term side effects.

 

[pattismith]

@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.
.

I took Valacyclovir 500 mg twice a day from 8 to 25 of february when the blood work showed some slightly altered kidney function....
Now I'm back to normal.

 

[Hd-x]

I took as far as I remember a similar dosage for 1month and had to pause (because off not getting it prescribed), after a while I got it a last time prescribed for a 2month course and didnt notice any side effects nor bad changes in blood/urine work.
So I am curious how it happens that you got kidney problems after just 17days - did you know the reason, or did have you any (pre)damaged kidneys or kidney malfunction?

 

[pattismith]

Your FT3 seems high, so you don't need to worry too much about the flavonoids you are taking I guess.

When my thyroiditis started, I immediately stopped iodine supplementation and started a very low iodine diet and high lipoic acid supplementation.
I didn't want to have any treatment meant to destroy my thyroid, so I monitored closely my thyroid and tried to control the symptoms with some useful drugs/supplements.
Doctors told me that I may go from Grave's to Hashimoto, but so far it hasn't and all my thyroid auto-immunity is gone now. I started eating again rich iodine food and it seems to work fine, but I am still monitoring closely.

I took as far as I remember a similar dosage for 1month and had to pause (because off not getting it prescribed), after a while I got it a last time prescribed for a 2month course and didnt notice any side effects nor bad changes in blood/urine work.
So I am curious how it happens that you got kidney problems after just 17days - did you know the reason, or did have you any (pre)damaged kidneys or kidney malfunction?

Not any that I am aware of. My husband took Valacyclovir for two years while taking chemotherapy and because of his low lymphocyte count, but got no kidney side effect.
One possibility could be that the dose is too much for me (51.5kg).

 

[Hd-x]

@pattismith
I don't know if it is any help/meaningful, but had a time with some heartburn few years ago that was imo thyroid triggered and a motherwort (Leonurus cardicia) tincture was some help, it was this product:
https://www.amazon.de/Indigo-Herbs-of-Glastonbury-Herzgespann/dp/B00AQ0LKXU
The traditional nature medicine claims the herb can (depending on the thyroid problem) balance a little bit thyroid hormone levels and thus reduce a little bit heartburn that is triggered from thyroid or nervous CNS (anxienty) related.

Motherwort is a very soft herbal drug with still small calming effect, so certainly not compareable with any synthetic thyroid drugs, ß-blocker or tranquilizers,
so it may not work if there are any bigger (health) problems.

My husband took Valacyclovir for two years while taking chemotherapy and because of his low lymphocyte count, but got no kidney side effect.

I am so sorry to hear this, I hope he is meanwhile well and in recovery.

 

[MartinK]

this is really interesting treatment, because..it looks like very, very high dose of methylprednisolone @pattismith @Martin aka paused||M.E.

I know some patients on 20 - 30 mg of Prednisone... and methylprednisolone is stronger, right?

Some reason why methylprednisolone and not prednisone?

I'm considering a short test of these drugs to see if I can relieve the inflammation or can clarify whether my problem is autoimmune...

Do you do it under the supervision of a doctor or on yourself? something important to verify before starting such a treatment? I'm trying to get some information from experienced, thanks a lot! ;-)

Martin

 

[pattismith]

this is really interesting treatment, because..it looks like very, very high dose of methylprednisolone @pattismith @Martin aka paused||M.E.

I know some patients on 20 - 30 mg of Prednisone... and methylprednisolone is stronger, right?

Some reason why methylprednisolone and not prednisone?

I'm considering a short test of these drugs to see if I can relieve the inflammation or can clarify whether my problem is autoimmune...

Do you do it under the supervision of a doctor or on yourself? something important to verify before starting such a treatment? I'm trying to get some information from experienced, thanks a lot! ;-)

Martin

Hello Martin,

my GP gave me corticosteroids once he was convinced I had autoimmune process at play + I gave him evidences that I have cardiovascular autonomic neuropathy. (ventricular extra beats + zero at the skin wrinkling test + red palms and feet).

 

[pattismith]

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.

Actually, my ventricular extrasystoles totally disappear with my methylprednisolone therapy. I dont feel them any longer during the day, nor find them with my ECG, nor can trigger it with respiratory maneuvers.

I don't understand well the autonomic shift that happens with methylprednisolone; My headache/brain fog improve greatly, my ECG is much better, but on the other hand it worsens my burning plantar area in both feet and burning palms (erythomelalgia like symptoms). Strange!

 

[Hd-x]

Thanks for letting me know.
I meanwhile have a printed version from my ECG,
it also contains a resistance ECG (17.10-17.30h), the somewhat uncommon part that is was not made with a treadmile - it was made by doing weight lifting.
The interesting part is that there were no single SVES nor VES/PVC under weight lifting.
Doctors consider it as a good sign that the arrythmia dissapear under heavy load and that it is possibly a (strange) kind off an athlete heart (because off doing exercises with CFS/MCAD)
The ECG also shows that after doing any exercises it takes aound 2 hours untill the heart rate goes down to "normal HR" and that few SV Couplets occur in the next following"pacing/resting period".

Actually, my ventricular extrasystoles totally disappear with my methylprednisolone therapy. I dont feel them any longer during the day, nor find them with my ECG, nor can trigger it with respiratory maneuvers.

I got a 70% SVES reduction by supping:
Taurine+Q10+Mg+Creatinemalate+Monosodiumphosphate (+occassionaly Potassium)
I got a 90% SVES reduction if I take the above Supps + LowDose Klonopin + LowDose Ivabradine.
Unfortunatly both drugs make me tired, therefore I hope Phencarol may be the way to go.
If Cortisone could also be helpfull in my case, I will discuss this topic (asap) with the Dr. from the Centre off rare diseases.

 

[Mary]

I decided to buy some as it is only £14. Pay with crypto currency no prescription needed.

@sb4 - have you tried the meldonium yet?

 

[sb4]

@sb4 - have you tried the meldonium yet?

Not yet, though it has arrived so the website is legit. I am probably going to try it soon, I just think that it will probably end up making me feel worse so I am dragging my feet over it.

 

[Mary]

Not yet, though it has arrived so the website is legit. I am probably going to try it soon, I just think that it will probably end up making me feel worse so I am dragging my feet over it.

I completely understand! (unfortunately) I hope for the best for you and if you remember, please tag me if/when you give it a try --

 

[sb4]

@Mary So I too Mildronate @250mg for 12 days. By day 9 I started to feel a bit off in a negative way and then I started getting headaches, which I don't usually. I have now stopped for 3 days and the headaches have gone away.

I read in a paper that carnitine is biosynthesis is expressed in the brain which they found confusing as the brain doesn't use LCFA for energy. They when on to say that carnitine metabolites could act on acetylcholine receptors. Maybe something like that was causing my headaches.

I have read that brain uses only sugar and ketones for energy but is it possible it also uses a small amount of LCFA in a pinch?

 

[pattismith]

@Hd-x
@MartinK

Just to let you know that I am still improving with methylprednisolone.
My heart arrhythmia, headaches, pains, my autonomic nervous system, everything is much better.
I came to the conclusion that My ME/CFS/Fibro is mostly an auto-immune Small Fiber Neuropathy.

Ironically, after 35 years of illness, I just had an appointment with a specialist for the 18 of august to check the SFN diagnosis (biopsies/autonomic testing)....I wonder if they will find something, I don't feel I will stop methylpred now, and let my disease flare again just to have this damn diagnosis I am looking for!

 

[WayTooSick]

@Hd-x
@MartinK

Just to let you know that I am still improving with methylprednisolone.
My heart arrhythmia, headaches, pains, my autonomic nervous system, everything is much better.
I came to the conclusion that My ME/CFS/Fibro is mostly an auto-immune Small Fiber Neuropathy.

Ironically, after 35 years of illness, I just had an appointment with a specialist for the 18 of august to check the SFN diagnosis (biopsies/autonomic testing)....I wonder if they will find something, I don't feel I will stop methylpred now, and let my disease flare again just to have this damn diagnosis I am looking for!

Hi Patti, I have had success with a short course of high dose prednisone in the past, it's the one treatment that has brought me closest to functional.

I'm interested in the benefits you are seeing from Prednisone pulsing. Is this the method you have been using since starting again after covid?:

(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)

And are you taking the methylpred and praquenil on the same day? Are you still adding Inosine/inositol?
Is this helping with your energy levels? Also, have there been any negative effects?

 

[Mary]

Hi @sb4 - sorry, I missed your tag last week, and sorry to hear the midronate gave you headaches!

I have read that brain uses only sugar and ketones for energy but is it possible it also uses a small amount of LCFA in a pinch?

I don't know the answer to that, but this paper seems to be saying that the brain does use long-chain PUFAs - tbh, I don't know anything about this chemistry! https://pubmed.ncbi.nlm.nih.gov/11844978/

 

[pattismith]

Hi Patti, I have had success with a short course of high dose prednisone in the past, it's the one treatment that has brought me closest to functional.

I'm interested in the benefits you are seeing from Prednisone pulsing. Is this the method you have been using since starting again after covid?:

And are you taking the methylpred and praquenil on the same day? Are you still adding Inosine/inositol?
Is this helping with your energy levels? Also, have there been any negative effects?

I don't use Prednisone but Methylprednisolone. I stopped Plaquenil, it gives me headache, but kept Inosine.
My energy level/brain fog/pain are much better the day I take it and the day after, then it fades.
The benefic effect on my heart is strong and last more.
I don't have side effect for now (not that I can see, I lost some weight, I don't drink more, I don't eat more), but I know long use is bad for liver and bones.

 

[bread.]

@Hd-x
@MartinK

Just to let you know that I am still improving with methylprednisolone.
My heart arrhythmia, headaches, pains, my autonomic nervous system, everything is much better.
I came to the conclusion that My ME/CFS/Fibro is mostly an auto-immune Small Fiber Neuropathy.

Ironically, after 35 years of illness, I just had an appointment with a specialist for the 18 of august to check the SFN diagnosis (biopsies/autonomic testing)....I wonder if they will find something, I don't feel I will stop methylpred now, and let my disease flare again just to have this damn diagnosis I am looking for!

Great to hear!

How severe were you me wise?