Therapeutic Plasma Exchange

[monkeybus]

That's right, I'd never heard of it either.

I posted a while back about blood transfusion therapy:

healthunlocked.com/amneasie....

An excellent post. So good, it garnered no interest at all on here. I still can't let this one lie though. I was trying to research more about it. I'll boil it right down for you. Give an unhealthy person a healthy persons' blood and they're health will improve.

There is a related science that has quite a history, and with some decent looking results - Therapeutic Plasma Exchange.

Here is a report of it's use in our disease:

pubmed.ncbi.nlm.nih.gov/111...

And there have been trials for all sorts of diseases, here is a longer report:

ncbi.nlm.nih.gov/pmc/articl...

I gave up reading, there are so many reports out there. All sorts of metabolic and neurological diseases.I am seeing my neurologist tomorrow, I shall talk to him about this, though I can imagine his reaction.

[Yevgenii]

Few months ago I found this clinical trial about plasma exchange with albumin for AMN patients, but results were not posted - clinicaltrials.gov/study/NC... .

The reports you sent look promising. I wounder why this practice is not common?

[Karukera in reply to Yevgenii]

I soon experienced plasma exchanges protocol during my hospitalizations, before doctors understood my disease (AMN).

This traitement brought me a clear improvement of my problems during many weeks. However, my Addison disease wasn't discovered (hydrocortison brought me later a clearer improvement ).

The enhancement was here but it was only temporary.

[Yevgenii in reply to Karukera]

Have you tried it again later?

[Karukera in reply to Yevgenii]

I received 5 or 6 times a plasma exchange and the result was the same each time. A improvement and later a dégradation weeks later

[Yevgenii in reply to Karukera]

Could you please describe what improvements exactly have you experienced? Improvements in walking or just in adrenal issues?

[Karukera in reply to Yevgenii]

The benefit of plasma exchange was a clear improvement of my spasticity in my left leg.

I spent approximately 2 years in hospitalisations until doctors understand my disease and during this period, my left leg was completely stiff. I had to walk with a walking stick.

Problems with adrenal glands appeared during the hospitalisations, more than one year after the beginning.

Benefits of plasma exchange was effective for spasticity but temporary too.

N.B.: At this period, I wasn't substituted with cortison and when I took cortison, it solved the major part of my problems

[Giuseppe_ in reply to Yevgenii]

Hi there, greetings from Barcelona.

I was one of the participants in the clinical trial about plasma exchange in Barcelona, it was about 3 years ago. I was connected to a machine centrifuguin my blood, one arm was the output and I received the centrifugued blood to the other arm.

There was no effect at all, my walking didn't improve and didn't get worse. The doctors told me it was something they wanted to prove but with few hopes.

Try to move every day! I exercise every day, in a moderate way.

Best,

[monkeybus]

See, the more I hear about this, the more I like it. I'd accept a temporary improvement, if it meant repeating the treatment over and again I wouldn't mind. It can't be any worse than letting this disease run it's godawful course.

That said, I asked my neurologist about it today and he said no chance. I'll get him some more evidence and try again. It's not like he stays on top of this disease.

[deengo]

I'm heading back to the Philippines in a couple of weeks where this would be more affordable to try out. Any idea how I would even begin to initiate this (I don't have a doctor there) ?

I definitely am willing to ty it out

[monkeybus in reply to deengo]

ollh-manila.com/news-detail...

Therapeutic Apheresis it seems is the name a lot of clinics use. This Manilla hospital (like the ones in London and USA) don't quote prices.

Give them a ring and find out. I'll start contacting some clinics in London to try and establish a price. I'll report back on this when they reply.

[quilling]

Thank you for always keeping us informed.

[GracePV]

I had Plasmapheresis in early Oct 2023 because of very high blood ammonia. I panicked and needed something to bring it down quick. I went to a local wellness spa in Puerto Vallarta. It cost more or less $2500 USD. I only had it done one time. It successfully brought my ammonia level down. There were a lot of other benefits, I quickly discovered. I kept a journal. Here is what I wrote.

Improvements in my health I noticed after Plasmapheresis

Next day - balance better, more stable on my feet walking.

less photosensitivity in eyes

4th-5th day after treatment - eyesight clearer,

more positive and optimistic mood.

more energy = less lethargy and fatigue

more capable of solving problems, handling mental stress

One week later - cognition better for sure, clearer thinking,

dry eyes are almost all better. Eye pains better.

Less muscular tension in shoulders and neck

After two months there were these lasting improvements:

more optimistic, more energy, less anxiety, eyesight clearer,

the color of my eyes changed back to my younger color, from a light

blue to a brighter greenish blue. (My husband noticed this)

The conditions that the plasmapheresis did NOT cure or help was

symptoms from vitamin B12 deficiency (gastritis and neuropathy,

sensitivity to cold in spine).

I happened to mention to a friend that I had the treatment done, and he used to work in a blood bank 20 years ago and they gave him a free plasmapheresis treatment, and he felt it helped him be younger, so over the next 20 years he paid out of pocket for 2 more treatments, about 8 years apart.

I am thrilled I had it done, and if I could afford it I would do it again soon.

The most thrilling part of it was seeing all the detritus/contamination I saw collecting in the plasma bag as my blood was being cleansed. Just amazing.

I have yet to test whether or not the procedure helped my other rare disease porphyria.

Even though I had wanted to get the treatment for a couple years, I didnt really do a thorough investigation of the procedure until after I had it done. I had to really dig to get info but I found that it either had been proven to help or was being researched for the following.

Reduce Ammonia in Plasma

Reduces cytokines, auto reactive antibodies and toxins

Reduces heavy metals

Reduce Accumulation of Senescent Cells

Lowers DNA damage

Improves Immunity

Improve Eyesight

Encourages Tissue Health and Repair

Removes atherosclerosis of the lower extremity vessels

Reduce Inflammaging

Diminish resistance to cell death

Diminish protein markers of neurodegeneration

Diminish protein markers of cancer

Ok all for now. I am here if anyone wants to message me (just joined this site today)

[monkeybus in reply to GracePV]

See! Nothing but nothing but good. I knew I was onto something with this.