Am I of autoinmune subset?

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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).
No, I haven't done that panel.

Is the Mayo Clinic the only place where I can have these few antibodies done? I'm in a difficult financial situation right now and can't afford more expensive testing.

I've been two days off LDN and I have my normal sleep back, but I haven't recovered my "normal" state yet. I've been housebound again for the whole week.

Yesterday I was looking at some videos from the Dysautonomia International Conference and someone said that Muscharinic Cholinergic Receptor 3 Autoantibodies are found in Sjogrens, and since I'm at risk for this autoantibody I fear I could develop this disease in the future and add it to my already long list of diagnosis.

I'm thinking about traveling to London to see Dr. Hughes. I doubt doctors in Spain will know how to treat this whole set of stuff I have. Maybe he can prescribe what's needed for me and then I can ask my doctor to prescribe me the protocol in Spain. I really hope I can have a combo of anticoagulants + IVIG as a front-line treatment.

I also read somewhere that it would be interesting to have a PCR panel of all the pathogens suspected for creating autoimmunity, such as EVB, HHV-&, Mycoplasmas, CMV...

I'm already clean of all STDs and I don't seem to have Lyme either.
 

bertiedog

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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.
I experienced this when I tried LDN a couple of years ago at 0.5 mg. It was really horrible and stopped me going out. It would come in big waves and completely upset my equilibrium. Once I stopped it I soon went back to having no dizziness unless my blood sugar dropped a bit low through exercise.

Personally, from my experience I have never been able to understand why so many people recommend it.

Pam
 
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I experienced this when I tried LDN a couple of years ago at 0.5 mg. It was really horrible and stopped me going out. It would come in big waves and completely upset my equilibrium. Once I stopped it I soon went back to having no dizziness unless my blood sugar dropped a bit low through exercise.

Personally, from my experience I have never been able to understand why so many people recommend it.

Pam
Well, for some people seems to be a game changer. I'm sad it didn't work for me, and to be housebound again. I guess I have to recover from 3 weeks of insomnia + fragmented sleep (I usually need 9 hours, I was sleeping 4-6 with LDN and not quality sleep but completely fragmented through the night).
 

Gingergrrl

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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.
I agree and these panels ended up being the single most helpful testing that I did (from an insurance approval perspective) and also greatly helped to guide my treatments.

Is the Mayo Clinic the only place where I can have these few antibodies done? I'm in a difficult financial situation right now and can't afford more expensive testing.
This is a great question and @kangaSue might know b/c I am not sure. I did not realize that you were in Spain when I suggested them although it might be possible to ship the blood to Mayo using Fedex Overnight International (which is how I shipped blood from the US to Cell Trend in Germany). I think the hard part might be finding a doctor who is willing to order the tests. Mayo's Lab has an excellent reputation world-wide (as far as I know) so maybe it is do-able?

I doubt doctors in Spain will know how to treat this whole set of stuff I have. Maybe he can prescribe what's needed for me and then I can ask my doctor to prescribe me the protocol in Spain.
I can't think of anyone else on PR right now who is from Spain but you might start a thread with that in the title (asking if there are other members from Spain) in case they can recommend a doctor, etc.

I also read somewhere that it would be interesting to have a PCR panel of all the pathogens suspected for creating autoimmunity, such as EVB, HHV-&, Mycoplasmas, CMV...
I think this would be helpful (PCR testing) if you can get it done to make sure you do not have active viremia. I would think if you have positive PCR testing, that any doctor would put you on an anti-viral. Can you see an infectious disease specialist?
 

kangaSue

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This is a great question and @kangaSue might know b/c I am not sure.
Is the Mayo Clinic the only place where I can have these few antibodies done?
Mayo are the only one's I've seen who do a set panel for this. You can probably get some of the individual tests off Mayo's panel done in Spain but not all of them.

You should be able to get them all done in the U.K., at the Neuroimmunology Dept at the Neurosciences Group, The Weatherall Institute of Molecular Medicine, John Radcliffe Hospital in Oxford, as they are also an international referral centre. I'm not sure how you go about it though.
https://www.ndcn.ox.ac.uk/divisions/dcn/
 
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I agree and these panels ended up being the single most helpful testing that I did (from an insurance approval perspective) and also greatly helped to guide my treatments.



This is a great question and @kangaSue might know b/c I am not sure. I did not realize that you were in Spain when I suggested them although it might be possible to ship the blood to Mayo using Fedex Overnight International (which is how I shipped blood from the US to Cell Trend in Germany). I think the hard part might be finding a doctor who is willing to order the tests. Mayo's Lab has an excellent reputation world-wide (as far as I know) so maybe it is do-able?



I can't think of anyone else on PR right now who is from Spain but you might start a thread with that in the title (asking if there are other members from Spain) in case they can recommend a doctor, etc.



I think this would be helpful (PCR testing) if you can get it done to make sure you do not have active viremia. I would think if you have positive PCR testing, that any doctor would put you on an anti-viral. Can you see an infectious disease specialist?
Gingergrrl, do you remember the cost of the panel?

I know other members from Spain in PR, we also have our own Spanish forum. It's just that in Spain most doctors don't know how to really treat complex diseases, and less a mix of ME plus other autoinmune stuff with all their particularities. It is possible that immunologists here don't know how to use IVIG properly with our cases.

Yes, I can have an appointment with an infectious disease doctor and see if I can ask for a whole PCR panel of different pathogens.
 

Gingergrrl

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Gingergrrl, do you remember the cost of the panel?
I'm not sure b/c when I did the PAVAL panel in early 2016, it was done by a Neuro at Stanford along with a bunch of other panels (some from Mayo, some from other labs) and they were all covered by my insurance. Then when I did the DYS1 panel in 2018, I did it at Quest, who sent the blood to Mayo, and it was also covered by insurance. I think the best thing would be to contact Mayo and ask them.

I know other members from Spain in PR, we also have our own Spanish forum. It's just that in Spain most doctors don't know how to really treat complex diseases, and less a mix of ME plus other autoinmune stuff with all their particularities. It is possible that immunologists here don't know how to use IVIG properly with our cases.
I am so glad that you have your own Spanish forum, that is great. My thoughts (and please ignore if not helpful) would be to pursue the autoimmune testing without mentioning ME/CFS to the doctor. I would explain your exact symptoms, and why you think this autoantibody testing would be helpful, but not give them a diagnosis that they will probably use to dismiss your symptoms. Then if the autoantibodies are positive, it can be a way to get treatment such as IVIG.

Yes, I can have an appointment with an infectious disease doctor and see if I can ask for a whole PCR panel of different pathogens.
I would definitely do this and if you have active PCR tests, I would assume that they would prescribe an anti-viral. And you can have viruses and autoimmunity at the same time.
 
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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.
Dr Schofield recommends IVIG for POTS caused due to APS syndrome. So it is possible to use IVIG.
But the physician should be quite knowledgeable about its use in APS syndrome. I too have anti beta glycoprotein antibody positive but don't have any good physician yet. So just stuck. Meanwhile you can research about aspirin and clopidogril.
 
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Dr Schofield recommends IVIG for POTS caused due to APS syndrome. So it is possible to use IVIG.
But the physician should be quite knowledgeable about its use in APS syndrome. I too have anti beta glycoprotein antibody positive but don't have any good physician yet. So just stuck. Meanwhile you can research about aspirin and clopidogril.
This is exactly what I'm worried about. That the social security doctor in Spain has the means, but probably she doesn't know how to use them. I'm really thinking of visiting Dr. Hughes in London, maybe he can give the exact instructions as how to proceed and they can put me on therapy in Spain under his guidance.
 
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I'm not sure b/c when I did the PAVAL panel in early 2016, it was done by a Neuro at Stanford along with a bunch of other panels (some from Mayo, some from other labs) and they were all covered by my insurance. Then when I did the DYS1 panel in 2018, I did it at Quest, who sent the blood to Mayo, and it was also covered by insurance. I think the best thing would be to contact Mayo and ask them.



I am so glad that you have your own Spanish forum, that is great. My thoughts (and please ignore if not helpful) would be to pursue the autoimmune testing without mentioning ME/CFS to the doctor. I would explain your exact symptoms, and why you think this autoantibody testing would be helpful, but not give them a diagnosis that they will probably use to dismiss your symptoms. Then if the autoantibodies are positive, it can be a way to get treatment such as IVIG.



I would definitely do this and if you have active PCR tests, I would assume that they would prescribe an anti-viral. And you can have viruses and autoimmunity at the same time.
All my doctors know already about my ME so there's no way I can hide it. But today I saw the immunologist from the private insurance and she says there's no risk of trombosis even with IgG anticardiolipin autoantibodies because it's the only one I have from the panel, so she's offering no treatment. Top doctors say that even with one autoantibody you have to treat it. Tomorrow I'll call my integrative doctor to look for a natural solution like grapeseed extract or nattokinase / serrapeptase, which seem to do the trick without side effects or possible bleeding, until I can have an appointment with someone who really knows about the matter. Doctors can be so useless sometimes (even usually, in our cases) :thumbdown:

She also said they only ask for the PCR when IgM is positive, but it doesn't make much sense to me. I guess I'll have to ask the infectious disease doctor and see if she's eager to ask for the whole PCR stuff. All this knowing that in Spain doctor's can't prescribe antivirals unless you have IgM titers, and only for 3 months.

Next month I have the complete POTS testing and I'll show the neurologist my AA, but in our first visit she said autoimmune dysautonomia it's still something controversial :grumpy::depressed:

I'm thinking of compiling several studies of the use of IVIG + videos and information from Dysautonomia International for my doctors with the hope they will take them into account and even learn something...
 

Gingergrrl

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But today I saw the immunologist from the private insurance and she says there's no risk of trombosis even with IgG anticardiolipin autoantibodies because it's the only one I have from the panel, so she's offering no treatment.
Top doctors say that even with one autoantibody you have to treat it.
I am so sorry that you got contradicting info from the two doctors (this happened to me over and over during the course of my illness). I would think it would be important to lower the risk of thrombosis/ blood clot even if you just have one autoantibody. And I would definitely take this into consideration if you were to do IVIG in the future since it is such a thick substance and is a blood clot risk by itself (without the autoantibody).

She also said they only ask for the PCR when IgM is positive, but it doesn't make much sense to me. I guess I'll have to ask the infectious disease doctor and see if she's eager to ask for the whole PCR stuff. All this knowing that in Spain doctor's can't prescribe antivirals unless you have IgM titers, and only for 3 months.
This does not make much sense to me either and I hope that you can get PCR testing.

Next month I have the complete POTS testing and I'll show the neurologist my AA, but in our first visit she said autoimmune dysautonomia it's still something controversial :grumpy::depressed:
It honestly makes me sad that autoimmune dysautonomia is considered controversial (in the US as well) outside of the specialists who dedicate their careers to research and treat it (like Dr. Schofield, Dr. Vernino, and others I am missing off the top of my head). There will come a day that this is an accepted diagnosis but not sure if it will be in my lifetime. My main doctor diagnosed me with "Autoimmune Autonomic Neuropathy" (among several other problems).

I'm thinking of compiling several studies of the use of IVIG + videos and information from Dysautonomia International for my doctors with the hope they will take them into account and even learn something...
Have you watched the DI videos of Dr. Jill Schofield? She is not my doctor but I e-mailed her at one point and she actually replied and gave me some feedback re: my treatment plan.
 
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Have you watched the DI videos of Dr. Jill Schofield? She is not my doctor but I e-mailed her at one point and she actually replied and gave me some feedback re: my treatment plan.
Yes, she's totally amazing.

Dr. Hughes is not accepting patients at this moment, so I'm pretty much left without options. Is she eager to answer questions from patients and give advice? I'm in a very difficult financial situation right now (this month I haven't been able to pay my rent...) and by no means can afford going to treatment with her in the US, but I think I will need for sure a second opinion or else I will be left to fight by myself. I mean, I could be treated here with some external guidance.

I know some people here with a similar autoimmune profile and they're not getting the proper treatment because patients don't have the information and doctors are useless. :mad::mad:
 

Gingergrrl

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Yes, she's totally amazing.
:thumbsup:

Dr. Hughes is not accepting patients at this moment, so I'm pretty much left without options.
I am not familiar with him but am sorry to hear this.

Is she eager to answer questions from patients and give advice?
I contacted her via e-mail b/c I knew someone who was her patient and he encouraged me to do so. However, I have two doctors treating me and they prescribed the high dose IVIG and Rituximab. But she had expertise on autoimmune dysautonomia that surpassed anything I had ever seen and we wanted her feedback.

She told me that she is no longer taking new patients b/c she already had a 2.5 year waiting list (but was hoping to hire a PA which might allow her to put new people onto the list). She read my e-mail and said that she agreed 100% with my course of treatment. Her only feedback was that she would go higher on my dose of IVIG but I told her that I was already at the highest dose that I could physically tolerate (82 grams in a 3-day split dose/cycle) and she agreed that was all I could do.

She did not give medical advice vs. once I told her who my main doctor was, as well as my lab results and treatment, she gave feedback which I really appreciated. This was quite a while ago b/c I stopped IVIG back in July. I do not know if she is still replying to e-mails and I was actually quite surprised when she replied to me but I really appreciated it. I have e-mailed many doctors throughout the course of my illness and most do not reply.

I'm in a very difficult financial situation right now (this month I haven't been able to pay my rent...) and by no means can afford going to treatment with her in the US, but I think I will need for sure a second opinion or else I will be left to fight by myself. I mean, I could be treated here with some external guidance.
I am so sorry and hope that you will figure out a way to pay your rent :nervous:! Do you have family or friends that you can stay with or can you apply for disability in Spain? I know that you would not get in to see Dr. Schofield since she had a 2.5 year waiting list when I contacted her via e-mail. My main doctor is taking new patients (I think maybe in May or June?) but it would be extremely expensive coming from another country and I am not sure if you would be able to access the treatments once you went home.

I know some people here with a similar autoimmune profile and they're not getting the proper treatment because patients don't have the information and doctors are useless. :mad::mad:
I agree, and it is a nightmare and totally sucks. I wish to God I had some better feedback or ideas for you.
 

taniaaust1

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I know that you would not get in to see Dr. Schofield since she had a 2.5 year waiting list when I contacted her via e-mail.
I only read this post on this thread so I dont know what is going on but I would like to say that some drs do still take on other patients in extreme circumstances even when they have full and long waiting lists.

I had one well known overseas ME/CFS specialist who was completely booked out with long waiting list who was not taking new patients at all but was willing to squeeze me in at any time if I could ever get there due to my extreme circumstances (of cause I had contact the dr directly to get that offer made to me and not go through a secretary in an office).

So people in very bad situations should not assume they wont get in due to a 2.5 year waiting list just cause others havent managed to jump a queue or waiting list, best to contact the dr directly if you have an email for them, explain your exceptional circumstances and then just wait and see.

I've actually twice now been told by ME/CFS drs who are not seeing new patients will take me as one if I could get there, the other one was not allowing even people to go onto even a waiting list any more due to being so full.
 

Gingergrrl

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I only read this post on this thread so I dont know what is going on but I would like to say that some drs do still take on other patients in extreme circumstances even when they have full and long waiting lists.
I agree that nothing is ever impossible and I would not give up. I was just sharing my experience re: the doctor that poetessinmotion asked about when I contacted her by e-mail. But I do agree that waiting lists change, and all kinds of exceptions are made and not to ever give up.