kluesyk

I am on a low dose antibiotic (Azithromycin) due to a positive test for chronic mycoplasm pnuemonia infection that I can't seem to clear. I take probiotics and do well. I have been taking it for over a year now. If I stop the antibiotic I get worse.

Very interesting....I had an outbreak of shingles on my forehead last summer, which returned on my back and later around my eye. (just coudn't get rid of them) I took acyclovir and finally they went away. Same pain and problems again this fall, back on acyclovir, but this time I found out my immune system was severely comprimised. (very low CD4 and CD8's). I am now on low dose Acyclovir all the time now as a preventative. I do have 5 high intensity areas in my brain, that the neurologist thought was related to migraines, but did not increase in number even tho I had several severe migraines , so I don't think they are. The dr finally said might be related to small blood vessel problems. I do have severe muscle pain and weakness, migraines and vascular problems with rashes. Makes me wonder if this might be the trigger for my POTS as well. Thanks for posting the info.

I too have problems with keeping magnesium. I waste 4x the normal magnesium through my kidneys and test low on Red cell magnesium blood test. Currently I take 750mg of magnesium orally a day, soak in a magnesium sulfate(epsom salts) bath every night and get a 1g magnesium infusion every week and my magnesium blood work is still at the bottom of normal now. The infusions do seem to be helping. I also get what is called a myers cocktail(vitc, b vit, ect) along with the magnesium. My immune system tested really low last month (very low CD4 and CD8), so the infusions are an attempt to build up my immune system as well. I am HIV negative, so the dr does not know what is causing the immune dysfunction. I also have severe muscle pain in thigh and upper arm muscles. They have small VERY painful knots and feel like they are too short or contracted. Hot baths and heating pads help some. My renin and aldosterone is also low which goes along with the H-pots.

Methyldopa lowered my bp too much and caused terrible fatigue. I only tolerate 0.1mg of clonidine a day 1/2 in am and 1/2 at pm. I went through most of the beta blockers and could not use them. I am too sensitive and it lowers me too much. Some do well on Methyldopa and other beta blockers. It seems it is a trial and error until you find one that helps you.

Yes, a sports type compression hose from ankle to waist is all I can tolerate (others too tight and I don't have enough strength to pull them up) and IT DOES help me, so I would say go for it.

At my appointment Tues with my Cardiologist my sitting blood pressure was 168/110....so he wants me to try Cardiziem to try and get the bp down. I have tried all beta blockers and they make me worse or drop my bp to 90/38 and I cannot function. Just wondering if anyone has had any luck with this? I am so sensitve to meds, it scares me when I start something new.

I will get a huge relief of problems if I receive a steriod shot in my hip....it is like it is the fix for me....for 2-3wks. Dr's are still trying to figure out why.... I had 20 yrs ago a mixed connective tissue disorder(autoimmune) that went into remission after 3 years(ANA is now neg), so autoimmune is VERY likely for me. The only problem is now that the steriods will even lower my immune system more, which is a new development for me....very low CD4 and CD8"s(killer T cells that fight infection).........so frustrating. As of now, I am taking something called an IV Myers Cocktail to try and build up my immune system ( of vit c, b vit, ect, and 1 g of magnesium as I am low), and started on anti-viral acyclovair(I have had shingles 3x last year and tried to come back recently) and azithromycin antibiotic and told me to stay away from sick people and large crowds. I think this last round of bad news has got me the most....staying away from my grandsons is hard. Since 2005, I have had thyroid failure, adrenal failure,autonomic problems(h-pots), severe muscle pain and weakness (getting where I can't walk very far), and now an immune system in the tank. Something sure is taking me down.....

I too find that a very small amount of Percocet will stop the rapid heart rate, BP and shaking that happens when I am upright too long or have done too much and the Hyper response is triggered in me. I also use a VERY small amount of xanax .125mg and it works well, too. I think the key is to not use a large dose. I am VERY sensitive to medication and it only takes a bit to help me. It seems it blocks the adrenaline and calms my system down so I can function. Other pain meds don't seem to do the same. I wonder what it is in the Percocet that helps so much. I was worried about people saying " Oh that is a narcotic and you will get addicted, too", but I have been using a very small amount to stop the surges now for about a year and I am not taking any more than when I started. I have migraines and the percocet is the only pain med that will stop those, too, that in combo with Relpax.

I was recently told I have probable EDS-type III hypermobile and possible vascular involvment by a geneticist. I am waiting to do the blood tests because my insurance will not pay for any kind of genetic testing. (VERY EXPENSIVE) I also have a strong family history of death by aortic dissections (father at 70, his mother at 62, and most probable her mother at 47). My paternal uncle also had nine anerurisms before his death at 68. My aorta was recently scanned and I was ok, so I guess that is all I can do. What would be the treatment other than checking the aorta if I would find out I have this?

I too have facial flushing not associated with hot flashes for last 3 years....I don't sweat, just red cheeks and chest. Pheo and Carcinoid have been investigated and ruled out somewhat. I have had a slightly elevated CGa and 5HIAA urine in the past two years, but octreotide scan was negative. I have H-POTS so maybe it is related to that. Taking clonidine has reduced it some. I wake up in the morning very flushed, and happens if I am upright very long.

I too have several white matter hypersensities bilaterly. Neurologist does not think it is MS. Mri said ischemia or possible dymelating (sp). I do have lots of migraines, so the neurologist thought maybe that.

I too had a bad reaction to Bystolic. Dropped my bp to 80/38 and hr went skyhigh, had bad chestpain,shortness of breath and felt like I was dying. I only tried 1/2 of what cardiologist wanted me to try. The only thing I have been able to tolerate without dropping my bp too low is a small amount of clonidine and a small amount of midodrine together. This has helped me some. It is so frustrating when we try a new drug and it ends up making us crash. I am so sorry you had to go through this. I always start at really low dosages and work up because I react so badly to so many meds. Hope you feel better soon!

sorry I meant 40meq total....my capsules are 10meq each...

I struggle with low potassium also. I currently take 40meq of the blue slow release capsules of potassium and it does well for me. (2 in AM and 2 in PM) I also have low magnesium which pulls down the potassium and sodium. I just found out this June I am losing 4x the amount of magnesium through my kidneys that I should, so I supplement magnesium and sodium, too. Hope you feel better soon!

Issie, I it was a blood test to check for antibodies to mycoplasm pnuemonia ran through a regular lab. I don't think the pnuemonia vaccination will protect against this, but I am not sure. mycoplasm p. is pretty common (usually causes a upper respiratory infection) and most people fight it off fine, my immune system is just weak and it appears to have went systemic on me. I sometimes think we all have some trigger whether it is bacterial, virus, head injury, ect that sets off the immune cascade that results in so many of our problems. That is why it is so difficult to find one specific fix as there may be differing causes. I am sorry about the antibiotics....some cannot tolerate them. I myself am super sensitive to most, except I tolerate Azithromycin ok.

Issie, You sound a lot like me....been diagnosed as hyper pots by Vanderbilt, but having a really hard time tolerating any meds. Tried Beta Blockers...horrible fatigue, too low blood pressure and asthma so could not tolerate even in small doses. Mestinon helped but caused severe asthma. I suspect I have a mast cell problem as I have had chronic swellings(hive like) for over 20years and a history of autoimmunity (Mixed connective tissue disease 22 years ago that seems(maybe not) to be in remission...last ANA was neg. But a steriod shot will dramatically improve my symtoms, so it is probably still VERY much a factor. My nephrologist had me try a VERY small amount of clonidine and it seemed to help over time. My dr at Vanderbilt suggested I add a small amount of midodrine as well. It seems counterproductive, but all my regulators are broke, so it is a matter of very fine tuning. I have been able to tolerate this and I do believe it is helping some. I also drink 3 cups of coffee a day which constricts my blood vessels, also. Nephrologist also found out I have a severe renal magnesium wasting disorder, so I take 700mg of magnesium a day...my potassium and sodium also are low as well as VERY low renin and aldosterone. Can't tolerate Florinef because of severe migraines. If I do not walk very far or do much physically I can usually avoid going over the edge as I call it....rapid heartrate, high blood pressure,weakness, dizzy, tremors, nausea,ect. If that does happen (which did yesterday at walmart) usually taking 1/2 Zofran (helps with more than just the nausea), 1/2 XANAX (blocks adrenaline)helps and I also take an extra 10mg of Cortef hydrocortisone(I also have addison's or adrenal failure). Eating ice and drinking water also helps. If it gets too far I will have terrible chest pain and then I am really in trouble....sometimes end up in the ER which I try to avoid like the plague. (It is a roll of the dice if I get a dr that understands POTS along with Addison's. I also have a horrible reaction if blood is drawn for labs....chest pain, tachy, palps, dizzy, weak....never been diagnosed with hypovolemia, but sure suspect it, so anymore I take copies of my last labs to drs and say don't draw my blood unless absolutely neccesary. One other odd factor that has come up is that I tested high for antibodies for mycoplasm pnuemonia. It seems my immune system can't completely clear it (which probabaly aggravates my crazy immune system and triggers the autoimmunity). I have been on low dose Azithromycin 250mg 3x a week for over a year now. It does help with the shortness of breath and muscle pain I have. So far by taking acidolpholis supplements 2x a day I have avoided the bad side effects of the antibiotic. In the last few weeks I pulled my lower back and saw a chiropractor...they found out my top atlas bone was very rocked(I got hit in the head 6 years ago by a horse just prior to my health going downhill), and have been trying to straighten out my spine, too. It does seem to really help me. I know there is quite a controvery about this subject, but at this point, I will try anything to feel even a little better. I see a PT which gives me mild stretching exercises(can't do anything else) and the neuromuscular massage(trigger point)therapy really helped my legs work better. Just a few ideas of what is helping me...I know we are all so different...I just had to keep trying till something worked....don't give up! I hope you feel better soon.

dizzyizzie, Thank you so much for your info! I have given the contact info to my cardiologist here and he didn't seem interested in contacting Dr. B. He just got VERY frustrated that I could not tolerate any beta blockers and kinda gave up I think. I takes a special one to keep tweeking the meds and dosages until you find the right one. The nephrologist I saw was the one that suggested and finally precribed the clonidine (which was what Dr. B mentioned during our appointment), but my cardiologist here said he didn't like the side effects and didn't want to perscribe it. Just wish I lived closer to Vanderbilt. I guess I need to find a doctor interested in learning more about this to work with Dr B. So hard to find a doc that wants to oversee the whole health picture. Thanks again....and I hope you are soon feeling better!

dizzyissie, Had a quick question....all the followup contact I have had with Dr. B has been through email. After your diagnosis, was it difficult to get a followup appointment with him? Is that even possible?...I know I had to wait a long time to see him the first time, and he seemed to want to be "diagnostic" and let my drs here follow through. But the problem has been that the drs here do not know enough about this disorder...

I have all of your symptoms with the exception of the muscle twitching at night....my muscles just feel like they are too short and hurt all the time and have small hard round painful knots in them. I also have migraines. Dr. B at Vanderbilt also diagnosed me with Hyper-pots in March of this year. After no luck with various beta blockers, aldomet, SSRI's and Mestinon, I am doing better with a VERY small amount combination of clonidine 0.1mg and 1.25mg of Midodrine. I take 1/2 of 0.1 clonidine and 1/2 of 1.25mg Midodrine upon waking and then take the other half around 2pm. It is helping with the high heart rate and blood pressure as well as the flushing that I have. I am SUPER sensitive to meds, so I have to take a very small amount. The beta blockers even in small doses made me feel so much worse and dropped my blood pressure and heart rate too much, but I had to find something that worked cause the last stress echo I only walked 3 minutes and my heart rate went to 180 and my blood pressure 176/110. Dr. B is the only dr I have seen that totally understands how sensitive we are to meds. He said even tho it seems contradictory to take clonidine to slow everything down and relax and then to also take midodrine to constrict... it works for me. I think all my regulators are broke..... When I get a huge surge of adrenaline (which happens if I walk very far or even talk very long, or do much anything physical) I have used 1/2 of a 25mg Xanax to block the adrenaline which works well for me. I don't take it everyday, but it is there if I get tipped over the edge. Drinking coffee 3x a day also helps me. I know it is a problem for some. Wearing compression tights (bought them at K-mart...the others were too difficult for me to get on....I am not that strong)from my ankles to waist helps me stay upright longer. When I start going into a downhill spiral, sometimes eating crushed ice and putting an ice pack on the back of my neck will help stop it from progressing. I used to have severe shortness of breath and chest pain that the drs all said it was asthma, but I don't wheeze and the inhalers really didn't help that much. A year ago I noticed a huge improvement after a round of Azithromycin for an upper respiratory infection. I had my dr test me for infections and what popped up was a high antibody for mycoplasm pnuemonia which indicated my problem was chronic. My immune system is not the greatest and for some reason I can't completely clear this bacteria out of my system, so I have been on low dose Azithromycin now for over a year, and the high CO2 levels in my blood have went down, the shortness of breath and chest pain is better, so I do think it helps me. I take probiotics for my digestive health and avoid sugar due to being on antibiotics for so long. I know it is strange, but it helps me. Steriod shots will also dramatically help me,too, and my neurologist is testing me now for why that helps so much (possible autoimmune issue). Also I have found out I have a severe renal magnesium wasting disorder.(saw a nephrologist for that) I take 750mg of magnesium a day, and also supplement potassium and sodium. I have stopped being so angry about the change in my abilities and have decided to accept what I still can do and try and not dwell on what I have lost. It has been difficult for me as I am a fixer, and thought for sure I could figure out a complete fix for this. My husband is moving my bedroom downstairs. I ordered a lightweight wheelchair for when I need to walk a long distance. (Not possible right now without triggering problems). I can still walk, but must walk very slow and stop and rest. I got my doctor to write out a paper so I could get a disablity tag for my car which has helped a lot. Every step I take I measure, cause I only have so much that day. Also, I cut out stressful situations and people out of my life as much as possible. We are all different and what has helped me, may not others. I hope you can be better soon.

I have not formally been diagnosed with Bartters or Gitelman's, but I have a severe magnesium wasting disorder that they have no explaination for. My potassium and sodium also go low at times. I take supplements for all. My renin and aldosterone is also low.

Conidine has been the only thing I have tolerated also...very bad reactions to all beta blockers. I only take 1/2 a pill in the am and do ok with hr and bp.

I am just starting to try midodrine. I already take clonidine, and my Dr wants me to increase it and add midodrine. Finally found a dr that totally understands the sensitivity to medications the hyper pots people have. It seems we depend on the sympathetic nervous sytem to maintain blood pressure, but the paradox is that it also drives the episodes of hypertension, so finding the right combo of medication is difficult. In my case, and we all are different, even the hyper-pots people, the suggestion was to try to lower the sympathetic tone with clonidine to prevent the hypertension, but if blood pressure goes to low (which in my case it does with any blood pressure meds), I could bring it back up with a small amount of midodrine. Makes sense to me. I am two days in on trying this. So far, just had a few headaches(which is common for me). When your regulators are broke it is difficult.

Yes, the best I have felt since this all started has been after I had a hysterectomy....I felt really good for about 8 weeks. Wonder if the immune system was diverted for a while.

Yes, in the beginning of the antibiotic therapy I had a decrease of the POTS symptoms, too, but over time it seemed the antibiotic did not help anymore with that. Just makes me wonder if anyone had ever investigated the connection. My thoughts are if a bacterial or viral stress is occuring in our bodies, perhaps that sets off an autoimmune response in some individuals which can cause the dysautonomia. Just my thoughts....

That is exactly what happened with a new doctor I just saw. He said "My you have had lots of testing", then proceeded to order MORE testing(same as what I just gave him copies of) and said see you in 6 weeks...did not help me at all. So frustrating.