Am I of autoinmune subset?

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Hello everybody,

For the last months I've been stuck as for any clues regarding the cause of my CFS/ME. Lately, I had more blood tests done and I have a strong positive for cardiolipin autoantibodies. I'm also waiting for the Cell Trend results, since my doctors suspect I might have autoinmune dysautonomia/POTS.

Last year I went up from being severe to moderate (major improvement), or from 3 to 6-7 in an energy scale with gut support, medicinal mushrooms and adrenal support. I've been on a keto / paleo / AIP diet because my doctors suspected autoimmunity even if they hadn't found any specific markers until now.

I wonder if I could strongly believe that yes, I'm into this autoinmune subset. I'm worried that I've started LDN almost 3 weeks ago and I'm getting horrid insomnia / sleep disruption and my basal state is now worse than 4 weeks ago, where I could go out and walk 4-5 times per week. Now I'm mostly housebound again due to side effects. I'm at 0.50 mg now and wondering if LDN can be taken if you are of autoinmune subset.

One of my worse symptoms is constant dizziness which can be crippling. It's not like vertigo, I have it only when I walk and the feeling is I'm in a boat with no contact with the earth whatsoever. I've had very bad tired legs (specially from under the knees) due to vascular issues that could be connected to the autoantibodies for years, to the point of not being able to walk, because of the pain and the lack of circulation specially in summer.

I wonder if this autoantibodies could be related to Coxsackie B or other nasty viruses. I'm just trying to get to the root of it.

I really hope that I get proper treatment for this, hoping to see some light at last.
 

Tally

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We don't even know if there is an autoimmune subset of ME, let alone how to find out if one belongs to this group in clinical settings.

All your questions can be answered with simple: no one knows yet.

But it's not all gloomy, there is research about it going on right now and I believe researchers from Norway who looked into Rituximab will publish more details soon. They are not the only ones looking into subsets either, so don't lose hope.

Anyone who takes LDN for ME, or any other drug for that matter, is experimenting on themselves since there are no FDA approved treatments for ME.

I hope you find some treatment that works for you. All the best!
 
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Malea

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LDN is used in many autoimmune disorders but I would think about stopping it if it makes you so much worse.

And, as @manasi12 already mentioned, I would suggest to have a deeper look into the antiphospholipid-sydrome, too.
 
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Anticardiolipin antibodies may be a marker for antiphospholipid antibody syndrome. Do u get cold extremities or lacey discoloration on limbs ?
Yes, definitely. Hands and feet the worst, and also my knees are constantly cold.

This is the only autoantibody I was positive for of the whole antiphospholipid syndrome panel.
 

Malea

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In my understanding positive cardiolipinABs mean that you have the syndrome. Even when the other antiphospholipidABs are negative.

Maybe there would be kind of a treatment for that? I know someone who gets regular heparin injections for the syndrome and is doing quite well. Not a person with ME, though.
 
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In my understanding positive cardiolipinABs mean that you have the syndrome. Even when the otherantiphospholipidABs are negative.

Maybe there would be kind of a treatment for that? I know someone who gets regular heparin injections for the syndrome and is doing quite well. Not a person with ME, though.
Actually I read a post on Health Rising that says that these AA are quite common in PWME and a proposed treatment could be heparin + IVIG. Looks like some people who have these AA and dysautonomia respond even better to heparin than POTS meds.

The Celltrend results have come back with positive for Muscarinic Cholinergic receptor 4 AA and at risk for Muscarinic Cholinergic receptor 3 AA.
 
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I'm worried that I've started LDN almost 3 weeks ago and I'm getting horrid insomnia / sleep disruption and my basal state is now worse than 4 weeks ago, where I could go out and walk 4-5 times per week. Now I'm mostly housebound again due to side effects. I'm at 0.50 mg now and wondering if LDN can be taken if you are of autoinmune subset.
LDN is used in many autoimmune disorders but I would think about stopping it if it makes you so much worse.
I agree. If a drug is making me worse I stop it. I've tried LDN about 5 times. It seems when I increase to 0.5mg I get worse. Like you it made my dizziness worse.

Regarding lower legs, have you considered Small Fiber Neuropathy?
 
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I agree. If a drug is making me worse I stop it. I've tried LDN about 5 times. It seems when I increase to 0.5mg I get worse. Like you it made my dizziness worse.

Regarding lower legs, have you considered Small Fiber Neuropathy?
What are the symptoms for small fiber neuropathy? I don't know much about it.

I haven't talked to my doctor yet but he suggested two months ago that IV ozone helps to lower AA and helps improve blood circulation. Does anyone know about this?
 

Gingergrrl

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I wonder if I could strongly believe that yes, I'm into this autoinmune subset.
All your questions can be answered with simple: no one knows yet.
The way I view it now is that we can be tested for autoimmunity itself and get clear test results back (on ANA titer, and on all sort of autoantibodies- both the common and more rare ones). Whether this ultimately means there will be an "autoimmune subset" or simply an autoimmune disease (or collection of diseases) that don't have a name yet, I agree that no one knows. But autoimmunity itself, can be tested for and treated (like Hashimoto's, Autoimmune POTS, Small Fiber Neuropathy, Sjogrens, LEMS, etc).

I'm at 0.50 mg now and wondering if LDN can be taken if you are of autoinmune subset.
I did not do well with my one attempt with LDN in 2014 but I suspect it was b/c the dose was too high. In my case, b/c we knew since 2013 that I had Hashimoto's Disease, my Endo said that my thyroid levels had to monitored every seven days if I wanted to try LDN b/c it can push you into hyper-thyroid. I did not last seven days on LDN so it was a non-issue for me.

In my understanding positive cardiolipinABs mean that you have the syndrome. Even when the other antiphospholipidABs are negative
I researched all of this at one time but now do not remember! I did the anti-phospholipid panel prior to starting IVIG (since it makes you a blood clot risk) but I was negative on all the autoantibodies in the panel.
 
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I researched all of this at one time but now do not remember! I did the anti-phospholipid panel prior to starting IVIG (since it makes you a blood clot risk) but I was negative on all the autoantibodies in the panel.
Oh, no! Does this mean I won't be able to get IVIG? I hope so since supposedly they are common in patients with autoinmune dysautonomia.
 

Gingergrrl

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Oh, no! Does this mean I won't be able to get IVIG? I hope so since supposedly they are common in patients with autoinmune dysautonomia.
I don't know how they calculate the blood clot risk since I was negative on that panel before starting IVIG. I am not sure what my doctor would have done (re: IVIG) if I had been positive. What does your doctor say?
 

kangaSue

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Yes, definitely. Hands and feet the worst, and also my knees are constantly cold.
I have no pain at all (when I was severe O had some spread joint pain but not anymore) bit definitely a vasculopathy.
Autonomic Neuropathy (AN) and Small Fiber Neuropathy (SFN) can be closely related things. SFN can be a cause of just painful burning feeling in feet and/or hands but you can have AN without this to any great extent. That is the case for me with AN in mostly only getting some burning feet (and calfs) symptoms on hotter Summer days (30 deg C and over).
Lately, I had more blood tests done and I have a strong positive for cardiolipin autoantibodies.
One or more antiphospholipid antibodies are frequently seen with autoimmune disorders such as Lupus so have you had an ANA panel and ENA panel run too?

It can take 10 years or more to develop positive antibodies to Lupus, or Sjogren's syndrome for that matter.
 
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Messages
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Autonomic Neuropathy (AN) and Small Fiber Neuropathy (SFN) can be closely related things. SFN can be a cause of just painful burning feeling in feet and/or hands but you can have AN without this to any great extent. That is the case for me with AN in mostly only getting some burning feet (and calfs) symptoms on hotter Summer days (30 deg C and over).

One or more antiphospholipid antibodies are frequently seen with autoimmune disorders such as Lupus so have you had an ANA panel and ENA panel run too?

It can take 10 years or more to develop positive antibodies to Lupus, or Sjogren's syndrome for that matter.
I had the blood-pooling / swelling / burning feeling in hands and feet and sometimes legs when I was severe. Now I don't have it anymore, I tend to coldness only. I've had all the systemic autoinmune panels done and all came back negative, also Sjogrens.
 

Gingergrrl

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I've had all the systemic autoinmune panels done and all came back negative, also Sjogrens.
I apologize if you already said this but have you done one of the autoimmune dysautonomia panels from Mayo? The blood can be sent to the lab and you do not have to go there in person. If you have not done one, I would Google their panels and the most useful would be PAVAL or DYS1 (and both test very similar autoantibodies but PAVAL focuses on the paraneoplastic autoantibodies).
 

kangaSue

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I had the blood-pooling / swelling / burning feeling in hands and feet and sometimes legs when I was severe. Now I don't have it anymore, I tend to coldness only. I've had all the systemic autoinmune panels done and all came back negative, also Sjogrens.
In that case, and as @Gingergrrl has mentioned, I would look into doing the Mayo DYS1 (Autoimmune Dysautonomia) to rule out an autoimmune neuropathy cause of your symptoms.