Jyoti

So sorry you have to deal with this....on top of everything else!!!

I am curious if anyone in a situation similar to mine has treated mycoplasma, and if so--how (ABX or herbs) and with what results? I have very high IgG levels, absolutely no pulmonary symptoms and my illnesses (POTS, likely ME, MCAS, SFN) all began after a bout of pneumonia from which I never truly recovered. I see that there is some research linking mycoplasma and dysautonomia; POTS specifically. I also have high IgG for chlamydia pneumoniae, but for the moment I am focused on the potential connection between POTS and mycoplasma and the faint hope that treating the latter might improve the former. Any experience or insight is most welcome! Thanks.

Me too! Good luck and keep us posted.

It is not the case for everyone, but a lot of us have a particular 'suite' of conditions that seem to go hand in hand. I know I started off focused on ME/CFS and then realized I had POTS and that POTS was the origin of many of the symptoms I had attributed to ME. Then I discovered I had cervical instability and hypermobility. I guess the deeper we dive, the more it is possible to find treatments that might help. For instance, I would never have considered neck traction for ME in my earlier understanding of it, but it really helps me a lot when things get bad. So while I am addressing an issue related to hypermobility, it impacts all my symptoms. Same with MCAS. I am guessing you have already tried the standard first-line options for POTS--lots of water, salt (like Klaralyte or Vitassium), compression garments? There are a number of meds for POTS that might be worth trying--if propranolol is keeping you up at night and thus, you don't take it--that isn't a big help. You might ask to trial some of the others. Or one of the others since drug-shopping usually doesn't put doctors in a receptive mood. I and most people here have tried a bunch of them which either did not work or had unsustainable side effects. Still..with determination and diligence, a lot of us have found something that adds to our well-being. I would also suggest that you consider a Garmin Vivosmart watch. It keeps track of stress, energy levels and gives you a continuous read on heart rate. I find it to be extremely helpful in managing POTS and ME. I used to know when I was exceeding my limits, but usually was not able to respond fast enough. With the Garmin, I can always tell if I am getting near to the edge and adapt what I am doing accordingly. That doesn't really 'treat' anything but it helps me to avoid some of the flares or bad patches by pro-active resting when needed. Which overall, makes life a bit better. There is a lot to learn and it isn't always easy with brain fog! But keep asking question and reading and soon enough, sad to say, you too can be an expert!

Major win! I am so glad to hear it.

It is worth it to check out your Beighton score, I think, but it is important to note that even if you do not fulfill the criteria for hEDS you can still be hyper mobile or have a connective tissue disorder. Not being anywhere adjacent to a physician, I couldn't say based on your symptoms--of course---but they (the symptoms) would surely make me suspicious of some sort of hypermobility or connective tissue problem. Have you read anything about CCI and AAI? This is an interesting presentation 'connecting the dots' between dysautonomia/POTS, connective tissue problems or hEDS, MCAS, gut issues, etc. : https://www.ehlers-danlos.com/wp-content/uploads/2022/12/2018-EDS-Webinar-Chopra.pdf It might give you some food for thought as you plan for your doctor's visit. I'd add that my Beighton score--done on my own--was 5. When an orthopedist did it, he got a 7, seeing some hyperextension that I didn't recognize of could not see accurately, so it is surely something to keep in mind. In the end, maybe what matters is knowing that you are hyper mobile and may need to stay aware of how that impacts you.

I have hypermobility and POTS. It is not an uncommon combination at all, sadly. Have you tried to assess yourself for Ehlers Danlos or hyper mobility? https://www.ehlers-danlos.com/assessing-joint-hypermobility/ My diagnosis is 'hypermobility spectrum disorder' which I think is fairly new--last couple of years--and takes in those of us who don't quite meet the requirements for EDS but have significant hypermobility. It sounds like you might indeed have hEDS, which would be a good thing to know, to pursue.

@MikeO--thank you so much for posting. I will also watch soon. I was planning to see it in real time and even registered but a crisis arose. I was praying someone would make it available after the fact.

PEM?! I relate to all these symptoms. I often say that all of my normal bodily functions just stop working right. Circulation gets worse, temperature modulation out the window, digestion, breathing gets difficult, neuropathy blooms, sleep gets harder..... Is that you @MTRJ75 or is it less intrusive?

In case anyone is interested, I see that Solve ME is doing a webinar with the CEO of the company that developed the device: https://solvecfs.org/event/the-future-of-symptom-tracking-exploring-stat-healths-revolutionary-in-ear-device-that-measures-blood-flow-to-head/

Oh no! @MikeO--I am sorry that it had such nasty side effects for you. It really seemed to make a difference, but I know some things are not worth the price. I take so little compared to the recommended dose--somehow I found a sweet spot with no side effects and some intended effects. I imagine if I could tolerate more, I might have had even bigger positive results, but I am very grateful for the slight boost I get in physical energy. So for you, the quest continues? For the needle in the haystack that will help you feel better without making you feel worse? I think we all know that one.... Wishing you a fortuitous find!

@MikeO--are you talking about RYSTIGGO? Or is there an orally administered med that is new as well? I really hope that we can hold on to pyridostigmine too. As you know, I don't take much, but the other morning, I forgot my dose and wow....about an hour later I started wondering WHAT IS WRONG WITH ME? Sometimes I wonder, with all the supplements I take, if anything is really making a difference. I took the pyridostigmine right away and within a half hour was feeling more like myself. I do not want to lose that edge, and I know you don't either.

Thank you! I had the neoplastic antibody panel a couple of years back and was just pleased it was negative. I guess at the time I looked at the specifics, but over time, it faded into just one of those things crossed off the list. But it was good to go back and examine the individual assays. Do let us know how it goes if you take the test.

Well, dang, @Sea Otter. I WAS tested for gAChR! And negative. Thanks for the lesson.

I have not been tested for these, @Sea Otter. But I am curious about both why you referred to d the testing.... Was there anything particular to you and your health that prompted it? Of was the neurologist just checking to rule out perfunctorily? Also...if you do get the test, I would be really interested in your results.

I have cervical spine instability along with all else, and when I had a particular sort of adjustment to my neck (Atlas Orthogonal), I experienced precisely that change you mention @Sarah Tee. Life sprung into color and definition all around me as I had not seen it in ages. I suspect nerves not impinged and/or improved blood flow. My experience was brief--a few hours--but unmistakable.

Absolutely true, but still.....some days the mountain of things wrong with us feels utterly overwhelming. When I was diagnosed with ME/CFS I thought--good. This reflects my reality and I am happy to know this. But heaven forfend--I will NEVER have POTS like so many others with ME/CFS. (I do.) And then....MCAS can't apply to me--I m totally unallergic to everything. (It does.) My connective tissue is failing and my neck doesn't hold up my head. And so on. @MikeO's litany is a little different to mine, but I totally relate to that sense of ....what next? Is this not enough to deal with???? Many of the things that loomed for me have turned out not to be issues....may that be the case here!

This must be so disheartening! Obviously you have a complex situation but the impact is very severe, regardless of the cause. And the doctor's job, in my view, is to ascertain that cause. The fact that midodrine didn't work has absolutely NO bearing on whether you have dysautonomia or not. That is either ignorance or a red herring to distract your gaze from what it sounds like--the psych diagnosis is more convenient. Midodrine does not work for many of us! And in my experience (as well as others' I am quite sure) there is a process of trying out different meds, discarding many along the way because the side effects are not sustainable, or because they don't improve our symptoms. Hopefully, and as is the case for many, there is something that helps if you keep trialing what is out there. Which is only possible, of course, if you have a knowledgeable and cooperative physician. I wonder--can you ask your psychiatrist to consult with this new doctor? It sounds like you have a psychiatrist diagnosing a neurological/cardiac problem and whatever this new doctor is (you didn't say a specialty) diagnosing the symptoms of a psych issue. It might help if they would put their heads together, especially now that the cat is out of the bag about your mental health history.

I had been thinking last week about thanking you for the steady stream of useful information YOU provide to all of us here on DINET. I guess it is as good as its members and you are an incredibly generous and thoughtful one!

That's fantastic @Sushi. So very happy to hear it. For you and also as a point of data and inspiration for others. Thanks for the update.

I don't have a similar experience, but I was moved, reading about yours. How utterly rotten! It sounds like your cardiologist is really on this and will try to get the dysautonomia controlled. I wish you the very best and ...that you will hear from some others here who might have specific advice or experience to relate.

My mother dealt with severe bradycardia post menopause. My POTS/NCS started at menopause and seems to have been balanced by very low resting heart rate, and 'normal' blood pressure that dropped significantly . Neither of us were on any meds and she refused all meds/pacemaker, etc. I don't know if our experience is of any value to you @brethor9 but I can surely relate. It sucks!

Ugh. Good that your doctor is able and willing to do that, but.....such a drag that we have to jump through these hoops. You find something that makes a difference and then not infrequently, this sort of complication follows. It really raises questions about pharmaceutical drugs and all the different interests that control them.

I have to reach back in my rather foggy memory to recall my testing, but as far as I can remember, your protocol sounds right. I had to be supine (I think it was only 15 minutes) and have blood drawn in that position. Then, I had to stand still for 15 and have my blood drawn in that position. Without sitting at all. Hope this helps. I am sorry I can't be more definitive, but my memory and yours align, so there is that....

I would think @erinlia, that a month is likely enough time to see a difference. Half life is about 3-4 hours from what I read and also...in my experience. I have posted elsewhere on its benefits for me. I find that it gives --in the hours immediately after taking it--some muscular energy. It allows me to exercise, and even to do so at times with pleasure. Being able to do so likely helps with POTS-specific symptoms. I find that on the whole, my heart rate does still go up into tachycardic realms, but not as far or as high as it would without pyridostigmine. And my blood pressure does dip into hypotensive territory if I take more than 45 mg total (split) each day. So I keep it there. It is not transformative for me, but I do find it helpful.