Jesse

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

Recommended Posts

Jesse    0

TL;DR

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

----------------

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 

 

Share this post


Link to post
Share on other sites
Natops    0

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

Share this post


Link to post
Share on other sites
Jesse    0

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

Share this post


Link to post
Share on other sites
Natops    0

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.

Share this post


Link to post
Share on other sites
Jesse    0

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. 

Share this post


Link to post
Share on other sites
Natops    0

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.  

Share this post


Link to post
Share on other sites
Jesse    0

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. 

 

Share this post


Link to post
Share on other sites
Natops    0

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.   

Share this post


Link to post
Share on other sites
Jesse    0

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. 

Share this post


Link to post
Share on other sites
dancer65    0

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! 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now