Annaliese

So you have no autoimmune disease whatsover?

Songcanary, is your neuropathy due to autoimmune issues?

Well that's depressing. I think beta blockers also increase your chance of getting diabetes if i remember correctly.

Ok, ive been on LDN at 2mg for a couple of months now. Although im not properly diagnosed, i think i have hyper pots although i dont seem to get high bp anymore (it gradually decreased from high to low over 18 months). Because my pots was sudden onset im 99% sure i have AI disease. So anyway, here's whats happened on ldn.

1) i feel happier (i think its better than avanza as an antidepressant)

2) my joints hurt less

3) i can generally speaking do about 20% more every day

4) my orthosttic chest pain has decreased

5) my orthostatic tolerance has improved

6) i feel less tired and jittery

7) my vertigo has reduced

8) my dizziness has reduced ( i am going to trial coming off florinef soon).

9) i would say it has improved my health from about a 3/10 to a 4/10.

Having said that though i also started an alpha lipoic acid formula, arginine, plus coq10 at a similar point in time so i guess i cant say for sure which of these things caused the improvements.

Only downsides of ldn are:

1) its hard to get prescribed.

2) The first few weeks you tend to wake in the night.

3) in the first month your immune system behaves strangely- i got mouth ulcers (this immune system upset is a known effect).

WRT BP and HR. i dont know if these have improved. Its hard to compare over time as im taking so many things and i would have to standardise the ime of day etc. i feel less dizzy standing but my heart rate doesnt seem to be much different.

I will keep everyone posted on this as im very excited about my progress on LDN. My partner keeps saying he's seen a big change in me but maybe im just less cranky and thats what hes commenting on lol.

Btw, 2mg is a tiny dose. Most people take 3.5mg. I will up my dose shortly.

Yep. This happened to me. My bp would get so low i would get a flush and then heart palpitations. This is why i started florinef.

Hmmm, thinking since my renin and and aldosterone also went very high with ortho stress, perhaps its just a normal response to low blood vol (ie pooling) as apposed to ang 2 synthase autoantibody being present.

Oh, my upright renin and aldosterone were also very high but normal whilst supine.

Never was dizzy when i had high blood pressure in the beginning. But now i often get dizzy (as in about to faint).

Inderal was great in the beginning when i had high bp. It decreased chest pain and anxiety. Now i dont take it anymore because 1) i believe i have low blood volume and inderal decreases renin activity and 2) i now have low bp and inderal worsens that. Licorice i have in my cupboard but havent tried yet because to be honest i forgot i had it!

Oh,pots symptoms getting marginally better with time. Health was 0/10 but now 3.5/10 id say.

Yes i was diagnosed with preeclampsia but i dont think it really was true preeclampsia in that the high bp was posture dependent. Unless of course i have a genetic mutation ( a supersensitivity somewhere?) that leads to preeclampsia being posture dependent.

My POTS was sudden onset and started during late pregnancy. After 18 months i finally convinced a dr to measure Angiotensin II. Well i got the result back today and my standing Angiotendin II levels are high. It's interesting because in preeclampsia they have also found angiotensin II autoantibodies. Btw i first presented with extreme anxiety and chest pain with very high hr and high bp. Over 18 months my BP has gradually decreased and is now low.

Interesting. I have had hyperhydrosis all my life and noticed if i dont have enough sleep, i dont sweat at all. If i have too much sleep i sweat even if im freezing cold. Ive noticed a few dys patients have had hyperhidrosis from birth.

I saw in one article they were using 24 hr sodium as a surrogate marker for blood volume. I wonder how well 24 hr sodium is actually correlated with blood vol?

Thanks for your posts everyone : )

For those that have been using florinef more than a few months, have you noticed you've had to dose escalate? Just wondering if your kidneys eventually adapt and produce less renin and aldosterone such that the florinef dose needs to be increased.

I'd like to thank Issie and Rama in particular. I find i get too emotional reading the journal articles. your posts are great because you know the lit so well and by coming on to dinet i can find out new info without reading depressing prognosis formation (which is hard to avoid when reading the literature).

I found out that pregnancy can trigger a urea cycle disorder (causing ammonia toxicity in some types). Im gonna try to get my blood ammonia levels checked.

Issie, it frustrates me that it seems blindingly obvious that connective tissue disorders are much more than a collagen issue (or at least the collagen issue has effects on other processes not previously considered). If a researcher read the background info of the people on here they would see the correlation between EDS, estrogen disorders and autoimmune disease. It looks like we are going to need to knock researchers over the head with the info.

I had a urine analysis done and was found to have problems with ATP production and also ammonia toxicity. Aparently urea cycle disorders can develop in women after a stress event. Im gonna see a geneticist about this.

Thanks so much for this issie. Very interesting. Do you know if you can have testing for autoantibodies to ACE 2?

Ive purchased a neuropathy support formula but havent really started taking it properly yet. Will let you know what happens. It has alpha lipoic acid plus b vits i think.

Issie, did the people with scleroderma have EDS?