Lecture by dr Hanne Thürmer - RituxME and current development

[deleder2k]

You could ask dr. Hanne Thürmer. She is the head of the Rituximab study at Notodden Hospital, and also a cardiologist. Only Haukeland and Notodden are engaged in the endothelial sub-study. I have sent her a few e-mails in the past and she has always answered me.

 

[Tuha]

I was interested in this endothelial disfunction hypothesis already from the beginning. With my no-scientific head it seemed to me like the best hypothesis for our problems.
I dont understand anything but is it difficult to prove endothelial disfunction? Are there some drugs which could improve it or is it a very difficult problem?

 

[deleder2k]

I was interested in this endothelial disfunction hypothesis already from the beginning. With my no-scientific head it seemed to me like the best hypothesis for our problems.
I dont understand anything but is it difficult to prove endothelial disfunction? Are there some drugs which could improve it or is it a very difficult problem?

See my post on the last page. These are some drugs that may help:

adenosine, alpha blockers, alcohol, amyl nitrite, histamine-inducers, nitric oxide inducers, l-arginine, THC (?!), theobromine, minoxidil, papaverine, estrogen and apigenin

 

[panckage]

The only issue is that I need to drink a lot. After 6 beers ++ things start to happen.

I guess you have probably tried this already, but phenibut works similarly on GABA but without most of the negatives associated with alcohol

 

[Snow Leopard]

Pity he's not on the forum!

Is anyone on this forum in regular contact with Dr Fluge? We could set up some sort of regular Q&A?

 

[clive powney]

@Sasha,

I have tried isosorbide mononitrate, glyceryl trinitrate (spray), l-arginine and l-citrulline and alcohol. Alcohol makes me feel almost healthy. My OI is gone when i drink a lot. Muscle spasms vanish. My brain fog and the extreme fatigue almost disappears. The only issue is that I need to drink a lot. After 6 beers ++ things start to happen.

None of the other vasodilators had any effect on me. Perhaps the dosage was too low.

This is the first time that I have read on here that alcohol has a positive effect on anyone. It has always been that by far the majority are alcohol intolerant. I have said from the very start of my illness that 99% of the time when I drink alcohol I feel so much better. It has to be more than one or two but it always seems to have a major impact. My wife has always thought that it was because it releases my inhibitions and stops me thinking about my illness and people that I have a drink with , think that my illness doesnt really exist as they dont see me when I am curled up at home feeling like s£$t. When this was posted the other day I thought - "i wonder if the dilation due to alcohol was a factor" - this is now quite intriguing. I can assume that when someone exercises they need more blood/oxygen and if the body cant provide it, then it will react in a negative way to stop the exercise and stop the body from doing more and the after effects will be that the body has "overdone it" and the worse the dilation then the worse the effects are. perhaps this is over simplifying it? How many other s have a positive effect to alcohol?

 

[Tuha]

I think my first reaction on alcohol is positive. So when I drink I feel that I have more energy (but maybe it´s only false impression). But then next day I dont feel good physicaly and am more exhausted and feel destroyed.

 

[justy]

histamine-inducers

and Estrogen? double eek - already have a problem with both histamine and estragon.

 

[justy]

The lecture was great! What a compassionate and sensible Dr. Wish we had clinics like that in the UK. I have been on Gammanorm (which she mentions) I thought I felt better, then I had a strong herx reaction from upping the dosage, then recently an atypical anaphylaxis (I have MCAS as well now), so I had a break, at first I felt a little better not taking it, now I feel back to square one.

 

[Forbin]

I wonder about endothelial dysfunction in relation to the dizziness that some patients experience. I know most patients with dizziness report it in conjunction with OI and low blood pressure, but, for the first several years of ME, my dizziness was constant regardless of position. I could be lying in bed and still feel a rocking motion.

The degree of my impairment was objectively confirmed at an otological center, but its cause was undetermined. I was told, however, that they sometimes saw this kind of dizziness in patients with "vascular insufficiency to the balance center of the inner ear." They suggested that I try niacin to dilate the tiny blood vessels of the inner ear.

Unfortunately, niacin didn't help me at all - although it did give me severe flushing more often than not.

Anyway, I wonder if endothelial dysfunction could explain some of the dizziness seen in ME/CFS. My doctors suspected that the blood vessels of my inner ear were constricted 30+ years ago. Even in patients who link their dizziness to low blood pressure, I'd imagine that "vascular insufficiency" in the inner ear could make them even more than usually sensitive to changes in blood pressure.

 

[Tuha]

I wonder about endothelial dysfunction in relation to the dizziness that some patients experience. I know most patients with dizziness report it in conjunction with OI and low blood pressure, but, for the first several years of ME, my dizziness was constant regardless of position. I could be lying in bed and still feel a rocking motion.

This is also my experience. When I feel dizzy than it doesnt matter if I lie in bed or if I stand. Just my heart rate is faster by standing but the dizziness is the same. What is positive for me that when my health improved then also dizziness got almost away (I got it now only ocassionaly) and also heart rate is slower (but still not ideal).
When I feel dizzy I feel also a kind of heart weakness similar like what I feel with other muscles. Heart is also a muscle so I am wondering if there is not a connecition with that endothel disfunction which lead to the problem with oxygen distribution and this can lead to muscle/heart weakness and heart weakness makes us feel dizzy.
Uff, such a big hypothesis from an amateur