Underlying Causes For Pots/treatments

[looneymom]

Since we have several new people that have joined the forum, it might be time to share underlying coditions that cause POTS.

For my son, his cardiologist believes his POTS has been caused by neuronal and cardiac antibodies caused by a mycoplasama/strep infections.

As for treatment, my son is getting penicillin shots every three weeks and a low dosage of IVIG every 4 weeks. He is also on a gluten free diet. Tyler also takes several supplements to boost his immune system.

[Katybug]

Ehlers-Danlos Syndrome and Mast Cell Activation Syndrome are definite issue for me but there is also some underlying inflammatory issue, showing as severely increased C4a readings, that no one can explain. Immunologist believes it is probably an autoimmune issue that is of unknown origin as of now. I don't show positive on any currently used tests for autoimmune diseases but he says there are hundreds of unidentified autoimmune issues out there.

[DeGenesis]

looneymom, are you active on any of the CFS/ME forums? They might be able to give you more advice about chronic infections.

It looks like you are in good hands. Does you son have frequent strep infections, and does he have any symptoms of PANDAS? He is receiving the standard PANDAS protocol.

Is mycoplasma suspected, or has any particular strain been identified? Penicillin is not effective against mycoplasma as far as I'm aware.

I'm glad you have a competant doctor. All the best to you and Tyler.

[DeGenesis]

there are hundreds of unidentified autoimmune issues out there

+1

[DeGenesis]

Minocycline and doxycycline are active against Mycoplasma pneumoniae (I see that your son is taking Singulair), and presumably other strains of mycoplasma.

I see also that your son was diagnosed with encephalitis. Minocycline easily crosses crosses the blood-brain barrier, quiets microglia, and reduces neuroinflammation. It might be something worth bringing up with your immunologist.

Sorry for the tripple post.

Edit: Your son is taking Biaxin (clarithromycin). I assume this is for the mycoplasma. Clarithromycin-resistant mycoplasma is common now.

[looneymom]

I was actully going to ask our cardiologist about Minocycline. My son was on it for a little short period of time but I did not see any improvement. There are more studies out and I'm wondering if he needed a bigger dosage to make improvement. Other antibiotics are used in conjunction with IVIG.

BTW--- Do you know what may have caused your condition DeGensis?

[Katybug]

Rachel,

My friend was on minocycline for issues associated with her ulcerative colitis and ended up with C. diff because she was on the mino for so long. I just wanted to tell you so you can look out for ealy symptoms if he does need to go back on it. She thought her symptoms were part of her colitis and they figured it out after the C. diff was very bad.

[looneymom]

Katybug,

Thanks for the warning. I will keep this in mind.

I sure wish these doctors would get busy an figure out all the other autoimmune diseases that may be causing POTS.

Keep sharing the underlying causes.

[DeGenesis]

I was actully going to ask our cardiologist about Minocycline. My son was on it for a little short period of time but I did not see any improvement. There are more studies out and I'm wondering if he needed a bigger dosage to make improvement. Other antibiotics are used in conjunction with IVIG.

BTW--- Do you know what may have caused your condition DeGensis?

I don't know. I've had mild symptoms of orthostatic intolerance since I was young. Then (from another thread):

I developed severe fatigue during a bad "flu" approximately 4 years. The fatigue never resolved. I did not recieve a diagnoses of POTS until this January, when I was hospitalized for a week because I couldn't get out of bed without HR ~160 and immediate pre-syncopy.

[DeGenesis]

Rachel,

My friend was on minocycline for issues associated with her ulcerative colitis and ended up with C. diff because she was on the mino for so long. I just wanted to tell you so you can look out for ealy symptoms if he does need to go back on it. She thought her symptoms were part of her colitis and they figured it out after the C. diff was very bad.

Not only do antibiotics put you at risk for C. difficile, they mess up your gut flora (dysbiosis). Yes, even if you take probiotics. Anecdotally, it seems like those who took a lot of antibiotics for things like ear infections when they were young end up with IBS and related conditions later on. There is an investigation ongoing now looking at the impact of dysbiosis in chronic inflammation in CFS/ME.

Sometimes antibiotics are a necessary evil, and I would never encourage anyone to take their usage lightly.

Minocycline and doxycyline can be taken at sub-antibacterial levels to treat chronic inflammatory conditions. See "Oracea" for the treatment of rosacea, as an example.

[badhbt]

I work in a Gastroenterology unit and there is now some C Diff that can't be treated with antibiotics. We are treating it with stool transplants from family members. I think that tells you how important our normal gut flora is.

[gjensen]

Some poultry breeders in the 1800s gave there confined breeding males semi dry horse feces. This is the pre antibiotic days.

They did not know why, but what they saw was an improvement of health and vigor. The birds were under pressure from many possible micro organisms or parasites in the digestive system. The improvement in health was as a result of better gut health. They misunderstood it, but they were giving their birds probiotics a couple hundred years before it became fashionable.

Sorry if this is too much information, but the point was the importance of gut health. It is it's own ecosystem.

[gjensen]

Rachel, I do not have an underlying cause to share. I can share that Mayo is going to do some additional testing related to amyloidosis, MGUS, etc. One of my tests came back abnormal, so they will do a 24 hour urine test, and a fat aspirate (?). I see a hematologist when I go back.

There are so many possible causes.

[writerlymom]

My cardiologist told me recently that 80 percent of the time they can't determine the underlying cause. I don't remember the percentage breakdown of the known causes: virus, autoimmune problem, rare cancer. For me all they have are theories: hormonal changes (perimenopause), extreme emotional trauma, and possibly blood sugar issues.

[dkd]

I'm in that 80% that does not know. After 10 different doctors and $7000 in deductibles, I gave up on searching for an answer. I was put on beta blocker/midodrine by EP cardiologist and feel a little better. At least my HR is under control.

Sometimes I think about trying to figure it out again, but I have another $5000 deductible for this year. I've always had a higher-ish resting heart rate, but it really seemed to get worse after a flu shot in 2010. I also had neurological symptoms start then (nerve pain, numbness, tingling).

[LastUnicornLady]

It isn't officially confirmed yet, but my suspected cause is EDS, and I have an appointment with a geneticist in two weeks to see about that.

[looneymom]

Good luck with your appointment. It is nice to be able to know the underlying cause. Keep us posted.

[lewis]

but it really seemed to get worse after a flu shot in 2010. I also had neurological symptoms start then (nerve pain, numbness, tingling).

I started to get some slight nueropathy my feet. Went in to see a PCP and he ran some tests and said we should give you a flu shot while your here. The next day I was 1000 times worse and been headed down hill since.