Martin aka Paused and H.E.L.P treatment

[lenora]

Hello @junkcrap50.....at the time of my heart attack I did have the treatment, but it didn't do much good. Right now it's felt that medication may be my best chance plus the use of stents. As you know apheresis has to be done at least once/mo. to be effective. I'll be seeing my cardiologist in the next few mos. There is a new program at one of our teaching hospitals, but I don't know if they'd take me. I'll try.

I have a number of very odd neurological illnesses, some I've had spinal cord (horrible!) and brain surgery for. I come with a lot of baggage and I'm wondering if doctors are reluctant to try their hardest with me. Who knows? To be honest, I think they're as confused by so many odd diagnoses that they don't know what to do either.

I'll be seeing a Dr. I trust sometime within the next two mos. He's a neurologist and I'll ask for his advice...he always goes the extra 5 miles and I would rely on his expertise. I don't think I ever really recovered from my hospitalizations 8 in something like 9 mos. for different and rather serious matters....this was about 1-l/2 to 2 yrs. ago. Too much happened all at once. Did it ever! Thanks for your input. Yours, Lenora.

 

[junkcrap50]

Hello @junkcrap50.....at the time of my heart attack I did have the treatment, but it didn't do much good. Right now it's felt that medication may be my best chance plus the use of stents. As you know apheresis has to be done at least once/mo. to be effective. I'll be seeing my cardiologist in the next few mos. There is a new program at one of our teaching hospitals, but I don't know if they'd take me. I'll try.

I have a number of very odd neurological illnesses, some I've had spinal cord (horrible!) and brain surgery for. I come with a lot of baggage and I'm wondering if doctors are reluctant to try their hardest with me. Who knows? To be honest, I think they're as confused by so many odd diagnoses that they don't know what to do either.

I'll be seeing a Dr. I trust sometime within the next two mos. He's a neurologist and I'll ask for his advice...he always goes the extra 5 miles and I would rely on his expertise. I don't think I ever really recovered from my hospitalizations 8 in something like 9 mos. for different and rather serious matters....this was about 1-l/2 to 2 yrs. ago. Too much happened all at once. Did it ever! Thanks for your input. Yours, Lenora.

Ah I understand. Wow, what a rough time you've had. I had thought that with FH, that you HAVE to get it and there wasn't anything else but to do it.

 

[Gingergrrl]

It might have been me actually. Its apparently very common to find cardiolipin abs in ME patients. Anti-cardiolipin antibodies were found in 95% of ME/CFS patients, https://pubmed.ncbi.nlm.nih.gov/19623655/

That is really interesting and I think you mentioned it in another thread but I had forgotten. Are many ME/CFS patients (or Long COVID patients) tested for APS autoantibodies?

I tested positive for cardiolipin, Glycoprotein I and Also have complement activation. I want to test more relevant stuff though and will do it soon.

Can you remind me, were you also tested for Lupus Anti-Coagulant Autoantibodies as part of the APS Panel?

 

[ChookityPop]

That is really interesting and I think you mentioned it in another thread but I had forgotten. Are many ME/CFS patients (or Long COVID patients) tested for APS autoantibodies?



Can you remind me, were you also tested for Lupus Anti-Coagulant Autoantibodies as part of the APS Panel?

I know thats really interesting! I dont know as far as Long Covid goes but perhaps someone can confirm if they are but I dont think many ME patients have been tested for APS autoantibodies. Thats just from what I have gathered here on PR and on facebook etc and I have a feeling not that many have been tested.

I did not test for Lupus anticoagulant but I will ask my doctor to test for it next as well as other coagulant tests like d dimer, fibrinogen etc. You had tested positive for cardiolipin? Anything else?

 

[Gingergrrl]

I dont know as far as Long Covid goes but perhaps someone can confirm if they are but I dont think many ME patients have been tested for APS autoantibodies.

My guess is that neither group of patients on the whole (ME/CFS or Long Covid) have been tested for APS Autoantibodies (although some individuals in both groups have been tested).

I did not test for Lupus anticoagulant but I will ask my doctor to test for it next as well as other coagulant tests like d dimer, fibrinogen etc.

If you get tested for Lupus Anti-coagulant autoantibody, will you tag me when you get the results? (if you remember of course )!

You had tested positive for cardiolipin? Anything else?

I tested positive for Anti-Cardiolipin IgM but was negative for IgG & IgA. I did not test for the other APS autoantibodies (Lupus Anti-Coagulant, etc) and did not even intentionally do the Anti-Cardioplipin test. My doctor had checked my ANA titer/pattern (which was positive at 1:160, speckled pattern) and the test included a Panel w/12-15 other autoantibodies. Anti-Cardiolipin was one of them and I was genuinely surprised to see it come back positive. I have a history of a bunch of other autoantibodies (for LEMS, Hashimoto's Anti GAD65, Cell Trend, etc) but this was a new one for me

 

[ChookityPop]

My guess is that neither group of patients on the whole (ME/CFS or Long Covid) have been tested for APS Autoantibodies (although some individuals in both groups have been tested).



If you get tested for Lupus Anti-coagulant autoantibody, will you tag me when you get the results? (if you remember of course )!



I tested positive for Anti-Cardiolipin IgM but was negative for IgG & IgA. I did not test for the other APS autoantibodies (Lupus Anti-Coagulant, etc) and did not even intentionally do the Anti-Cardioplipin test. My doctor had checked my ANA titer/pattern (which was positive at 1:160, speckled pattern) and the test included a Panel w/12-15 other autoantibodies. Anti-Cardiolipin was one of them and I was genuinely surprised to see it come back positive. I have a history of a bunch of other autoantibodies (for LEMS, Hashimoto's Anti GAD65, Cell Trend, etc) but this was a new one for me

I agree!

Sure, If I get my doctor on board with the new tests Ive found I will tag you when I get the results.

I have never tested positive for those ANA tests but only when I have tested specific autoantibodies. Tag me as well when you tests more APS autoantibodies! : )

 

[Gingergrrl]

Sure, If I get my doctor on board with the new tests Ive found I will tag you when I get the results.

Thanks!

I have never tested positive for those ANA tests but only when I have tested specific autoantibodies. Tag me as well when you tests more APS autoantibodies! : )

My ANA titer tends to stay at 1:160 speckled pattern (since I first got sick many years ago). It was briefly negative during my treatment (below 1:40) but that didn't last long! In and of itself, it doesn't really add much to the equation (I guess unless it were to go super high)? I agree it is the individual autoantibodies that are useful vs. the ANA. I will be re-doing bloodwork in Dec/Jan and will tag you (if I can remember )!

 

[HealingFalcon]

Atm, my depression got unbearable. It's paralyzing. I will come to more questions when I'm better.

Do you think it could be a direct result of aphresis? Maybe due to specific zytokine that were washed out? The days following my first and only aphresis, I had depression like symptoms and an extreme frustration and desperation I never experienced before. I could not make any sense of it. But now I read about worsening of specifically neurological symptoms in many people following HELP...

 

[lenora]

Hi Martin.....So, so sorry that your depression is so bad. It's as difficult as the illness, isn't it? Don't worry about us....you don't owe us anything except feeling better.

We'll hear from you when we hear from you. In the meantime, don't worry...it only makes depression worse. You're a bird flying above it all, soaring and enjoying being out in the open. We'll be thinking of you and I know that all of us wish you well. Take good care of Martin!

 

[Martin aka paused||M.E.]

Little update: I'm now in the Pretorius study in South ... They are mainly looking for inflammation with a new tool they've developed to determine the concentration of inflammatory molecules in the blood. This work is done by their own company bioCODE.

They are also looking at how good the res blood cells carry oxygen and have special microscopes for looking after clotting issues etc. I've told you that Pretorius found sth really special in my blood that makes us all scratch our heads. I've theorized with Asad and Josh about what could possibly cause this. Josh has a genius theory and I will now connect Jaeger, Pretorius and Josh. Atm he works with Phair and Armstrong afaik on sth so I don't know how much time it'll take but I will ask for permission to share it when I have the phone call with Jaeger.

The chemistry between William Weir and me was right when we talked about metabolism, immune system and infections and Asad told me that he was very “impressed” so I hope I can win him for my NGO as a medical consultant.

So, it's all very new. Fresh research so to speak. New horizons, brains and people who have another way of thinking than the researchers who are involved for decades.

Stay tuned. I will let you know as soon as I can.

 

[GlassCannonLife]

Little update: I'm now in the Pretorius study in South ... They are mainly looking for inflammation with a new tool they've developed to determine the concentration of inflammatory molecules in the blood. This work is done by their own company bioCODE.

They are also looking at how good the res blood cells carry oxygen and have special microscopes for looking after clotting issues etc. I've told you that Pretorius found sth really special in my blood that makes us all scratch our heads. I've theorized with Asad and Josh about what could possibly cause this. Josh has a genius theory and I will now connect Jaeger, Pretorius and Josh. Atm he works with Phair and Armstrong afaik on sth so I don't know how much time it'll take but I will ask for permission to share it when I have the phone call with Jaeger.

The chemistry between William Weir and me was right when we talked about metabolism, immune system and infections and Asad told me that he was very “impressed” so I hope I can win him for my NGO as a medical consultant.

So, it's all very new. Fresh research so to speak. New horizons, brains and people who have another way of thinking than the researchers who are involved for decades.

Stay tuned. I will let you know as soon as I can.

Sounds exciting. Not to be overly critical but I'd take Josh's theories with a grain of salt..

He is a good salesman and seems to enjoy aggressively endorsing his theories despite lack of evidence or outcome, etc. As seen with the "we will cure all of ME" protocol that only helped one or two people a little amount (aside from the many he claimed he fully cured but somehow they were never anywhere to confirm that this happened..).

The rest of the team are real researchers and clinicians and not layman enthusiasts that oversell their theory-based hypotheses.. I'd be careful not to waste their time.

Oh also, how are you managing to get into these studies.?

 

[elvira]

Thanks for the update, exciting! Will you continue with more apheresis treatments? Since some people see results only after a while.

 

[Martin aka paused||M.E.]

Sounds exciting. Not to be overly critical but I'd take Josh's theories with a grain of salt..

He is a good salesman and seems to enjoy aggressively endorsing his theories despite lack of evidence or outcome, etc. As seen with the "we will cure all of ME" protocol that only helped one or two people a little amount (aside from the many he claimed he fully cured but somehow they were never anywhere to confirm that this happened..).

The rest of the team are real researchers and clinicians and not layman enthusiasts that oversell their theory-based hypotheses.. I'd be careful not to waste their time.

Oh also, how are you managing to get into these studies.?

First, you're too harsh to Josh. And the researchers chosed to work with him after talking with him at the OMF conference. He is more knowledgable than you think. I don't think you have to protect them from not wasting their time... As you said: they are real clinicians.. They can protect themselves if necessary...

Second, I just talked to them at the clinic and they got interested. So...

 

[Martin aka paused||M.E.]

Thanks for the update, exciting! Will you continue with more apheresis treatments? Since some people see results only after a while.

Yes, I can tell that Jaeger wants me to continue. The question is when and where... It's possible that what Pretorius has found in my blood is treatable with Apheresis.

 

[GlassCannonLife]

First, you're too harsh to Josh. And the researchers chosed to work with him after talking with him at the OMF conference. He is more knowledgable than you think. I don't think you have to protect them from not wasting their time... As you said: they are real clinicians.. They can protect themselves if necessary...

Second, I just talked to them at the clinic and they got interested. So...

I dunno man, I gave him the benefit of the doubt so many times but it's just hard to be on board.. He always acts like he has real answers and tries to convince people about his theories instead of being upfront about how they are just purely speculative etc.. Overselling always puts me off.

Anyway I don't mean to lay into him here I just find it strange how he keeps trying to get into everything (tried to meet with Ron too?) when he hasn't done any actual research that he could help by sharing or collaborating etc.. :-/ I'll leave it at that - triggers red flags for me but who knows maybe he'll come through somehow.

Glad you got involved in the trials, I hope they will help you. Hopefully they will let you share some more info on your blood someday soon.

 

[Martin aka paused||M.E.]

I hope they will help you. Hopefully they will let you share some more info on your blood someday soon.

I hope so too! I mean, maybe it's something that others have too and so we would have our first real subgroup and maybe a treatment option. So, I hope it can benefit some people and be of much wealth for the discussion here on the aetiology and subgroups

 

[GlassCannonLife]

I hope so too! I mean, maybe it's something that others have too and so we would have our first real subgroup and maybe a treatment option. So, I hope it can benefit some people and be of much wealth for the discussion here on the aetiology and subgroups

Yeah for sure, concretely identifying a subgroup on more than potential/theoretical pathogen would be very revolutionary!

 

[Martin aka paused||M.E.]

Yeah for sure, concretely identifying a subgroup on more than potential/theoretical pathogen would be very revolutionary!

Yes! You know, I think there are really interesting things now going on showing that my theory that most users here hate is not so wrong: we don't have the same pathology... ME/CFS is an umbrella term. The only thing that is congruent is the symptoms...

 

[Keats]

Thank you for letting us know about your progress Martin. I hope the depression subsides and other strands start to come together for you.

 

[Learner1]

I think there are really interesting things now going on showing that my theory that most users here hate is not so wrong: we don't have the same pathology... ME/CFS is an umbrella term. The only thing that is congruent is the symptoms...

Many of us are in 100% agreement with you on this.

ME/CFS is an umbrella term for a) many subsets or b) many illnesses who look the same. I told him that he needs better methods in the future (did that politely, don't worry). He agreed on that.

This is definitely true. And many belong to more than one subset. And have other comorbidities, complicating things.

I've told you that Pretorius found sth really special in my blood that makes us all scratch our heads.

Is there anything the rest of us could have tested?