8 Months of POTS/OI Following a Virus - Could Alpha-1 Agonists Help?

[Jesse]

TL;DR

Could alpha-1 agonists help me regain functionality? I have POTS and documented alpha-1 adrenergic receptor autoantibodies.  

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Hi all, 

I'm new here, from Los Angeles. It's great to see so many intelligent people posting. 

I had a flu-like illness back in December and have been disabled with a set of debilitation symptoms since then. I was very active and independent 30 year old man and now I live with family and cannot work. 

Metoprolol, high dose IVIG, earthing sheet, neurofeedback therapy, LDN, and various supplements have been of marginal help. 

I'm considering trailing some of the following alpha-1 agonists to see if they help:

• Butchers broom (herbal) 
• Midodrine (antihypotensive)
• Phenylephrine (decongestant)
• Cirazoline (vasoconstrictor)
• Methoxamine (vasoconstrictor)
• Synephrine (mild vasoconstrictor)
• Etilefrine (antihypotensive)
• Metaraminol (antihypotensive)
• Naphazoline (decongestant)
• Oxymetazoline (decongestant)
• Pseudoephedrine (decongestant)
• Tetrahydrozoline (decongestant)
• Xylometazoline (decongestant)

Has anyone with a similar profile to me tried any of these and gotten restored functionality? Have any of these worked longer term?

My current symptoms include:

• Disabling physical fatigue and low stamina / exercise intolerance 
• Physical weakness and malaise
• High heart rate on standing
• Breathlessness w/ exertion
• Dizziness
• Lightheadedness on standing
• Brain fog / cognitive dysfunction
• Light sleep
• High volume urination
• Anxiety / depression / irritability

Symptoms which more or less gone away:

• Chest pain
• Mild sore throat 
• Muscle pain

Labs / tests:

• TTT revealed increase in HR from ~45 resting to ~75 standing. BP normal and steady 
• Elevated alpha-1 adrenergic antibodies (tested through CellTrend)
• Elevated proinflammatory cytokines IL6, INFy, TNFa (have decreased)
• Evidence of Coxsackie B4 virus antibodies 
• Low ADH
• Krebs cycle metabolite imbalances 

 

[Natops]

You said through cell trend - did you get tested for muscarinic receptor antibodies as well?  You live in America?

[Jesse]

Yes I live in America, sent the sample internationally I tested positive for only A1. M4 was "at risk" but not positive 

[Natops]

Does Cell Trend (Germany) require your doctor to sign and approve an order?  Or will they do the test for anyone without a doctors script?  Payment is out of pocket right?  No insurance pays for blood test from Germany.

[Jesse]

That's right, no insurance pays and yes a doctor's script is required. I'd recommend an integrative medicine doctor, though some GPs may be willing as well. 

[Natops]

Since no insurance co is involved it would seem pretty petty for a doctor not to sign an order.  What would they have to loose?   Have you been tested for Mayo's Paraneoplastic Panel?   Not sure about your question - most those agonist you listed are decongestant?   They over the counter?   You have an antibody perhaps even more- have you researched immunosuppressant treatments?   There's also plasmapheresis and IVIG to research.  

[Jesse]

Thanks Natops

I have a correction to make. Just found out today that my insurance did in fact cover CellTrend, which totally shocks me since they're technically a research lab and based in Germany. I think any lab requires a doctor's note regardless of insurance coverage. 

I have been doing 4 months of IVIG at increasing doses (up to 105g now). I would love to try plasmapheresis, but haven't found a doctor / hospital willing to do it.

The drugs I listed are mostly OTC, and are all A1 agonists (vasoconstrictors), which relate to the autoantibody CellTrend found. 

Immunosuppression may be my next stop, though the risks are concerning. 

I've not had the Paraneoplastic Panel, that sounds worth looking into. 

 

[Natops]

Your symptoms are similar to a disease called Lambert Eaton disease which is caused by calcium channel antibodies found in Mayos Paraneoplastic panel.  Look into it.  Your on IVIG- so that may skew any blood work you get done.  There's numerous antibodies in the panel that are deemed to be the pathogen for many autoimmune conditions ranging from neuromyotonia, Limbic Encephalitis, ataxia, LEMS, autonomic neuropathy, etc, etc.   

wish there was a place in the US that provided commercial blood work similar to what CellTrend offers.  As this website has pointed out - muscarinic and adrenergic receptor antibodies are emerging in people who suffer from dysautonomia.   I've read journals where it's being found in samples of chronic fatigue syndrome/ ME patients.  I've read journals where it is found in 70% of Lambert Eaton patients.   

[Jesse]

Very interesting, I'm not familiar with LEMS, I'll look into it. CellTrend is doable with a good doc. Their customer service is good and the results came back relatively quickly. FWIW I took some midodrine today (A1 agonist) and my HR / BP remained steady standing. 

[dancer65]

Hi

so sorry things are so bad for you. 

my symptoms are very similar to yours. I take midodrine and have done for over a year, it helped my fainting and pre syncopal attacks which were daily now they are less frequent , but part of that is my understanding when to stop ! It has been a slow recovery with setbacks and I still have to be very cautious what I do especially on a good day but I am pretty functional and back teaching part time with an assistant ! I also have just started a business working from home . My functionality is no where near where it use to be but it has improved from being on the sofa all day! 

I still have all the  same symptoms they are just less aggressive, less painful . I have changed my diet,  infact my whole lifestyle.  Ihave a number of auto immune diseases but I have chosen not to take immunosuppressants ( had one course many years ago ) for several reasons 

I hope the midodrine works for you! 

[looneymom]

I was looking at your symptoms. Have you been checked for deficiencies in B vitamins such as B-12 or folate? Methylation problems can cause energy, insomnia, and severe brain fog issues. You might consider doing the 23 and Me testing but first find a doctor to help interpret the results. Dr. Amy Yasko has written a book called Autism Pathways to healing. You can read this book free on her website.  She uses a test similar to the 23 and me testing. She has a website that will accept the 23 and me test results and it will give you a free report on what supplements could support your methylation system.  

 

 

 

 

[Chaos]

I have 6 of 9 of the autoantiboides Cell Trend tested for, and am "at risk" for a 7th.  I have tried several of the options you have listed above and while some of them helped somewhat they were not enough to keep me working or able to function above a housebound/sometimes bed bound level. 

I have many of your same symptoms as well as positive tilt table tests for POTS/ NMH/OI. While my POTS symptoms started after a hysterectomy, my ME/CFS symptoms started after a viral type illness. 

Did you have viral titers checked?  Antivirals did help me in several ways although high dose IVIG and Rituxan seem to be helping me more right now. 

[SammyJo]

Could you explain what an Earthing sheet is and why you have chosen to use it? If you don't mind

[Natops]

I too would like to know what Earthing Sheets are about.  Ive never heard of it.  Must confess.... I always have a hard time understanding electricity and grounds.... 

[Jesse]

Hey guys,

To answer your questions...

• I have elevated antibodies for Coxsackie B4 and mycoplasma pneumoniae. Everything else is normal 
• Earthing Sheets help in some cases of POTS. A wire connects the sheet to ground outside and the thought is that using current from the Earth helps lower inflammation in the body. It sounds a bit out there, but I figured I'd try it after several people strongly recommended it. Haven't noticed much from it to be honest 

[corina]

Earthing (sheets) has (have) been discussed before. In case you want to read just type in Earthing in the search box (top right under username) and topics on it will come up

[SammyJo]

Thank you for explaining. I also visited the website and watched their video on the "grounding" theory. Very interesting. I'm honestly down to try anything at this point. 

[p8d]

I just got my Celltrend results and also only have the alpha 1 andregenic antibodies.   @Jesse or anyone else, did you find any meds that help?  I am waiting to hear from my cardiologist and neurologist suggested she wants to do two more “newer” blood tests but I don’t know what they are yet.

[Clb75]

Thanks for posting an update. Once you hear from your doctors about their blood tests and treatment recommendations, please post again. I’m really interested to hear what their recommendations will be. 

I’ve  thought about the cell trend test myself, but wasn’t sure what to do once I had the results. I’m already getting ivig for a separate condition, and in my case it has not helped my pots symptoms. If there is something else that helps counter the antibodies, I’d really like to know.