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Hi, I've been ill for just over a year. Diagnosed with OH/POTS in March 2015. Recently diagnosed and started treatment for Lyme disease. I know that with both you get good hours/days and lousy hours/days. I also know that Lyme causing dysautonomia is controversial. I also know about the Herxmeier reaction causing flares and new symptoms in Lyme. I find myself struggling to feel hopeful during the bad hours (haven't put together a whole day yet) and just wondered what anyone else did. I also have always felt the need to be needed/useful and given my present state struggle to find something I can do. I've done some transcription of bird phenology records but would love other ideas. Thanks. P

Hi all, I spoke with my Dr yesterday and she suggested I could try to wean off the compression stockings while I do the stationary bike. My reason is I am gaining thigh muscles but my calves are really wimpy compared to pre-POTS life. I do the toe raise exercises and will start the heel off of a stair but just wondered how anyone weaned off the stockings and if there are other calf exercises that have helped? As always any advice is welcome. P

Thanks.

Dr Chelimsky is at Medical College of Wisconsin, works out of Frodert hospital in Milwaukee. I'm waiting for my appointment on January 25, scheduled it in July. Nice to hear he is nice. I've had a poor experience with the ANS specialist at Aurora in Milwaukee.

So happy for both of you. P

Jen, One thing aside from decreasing Gabepentin that seems to have helped me recently is increasing my magnesium glycinate (less diarrhea issues). I have more energy too. Also discovered I have low zinc levels so have started that. I have also started antibiotics for Lyme but had started the magnesium before any other treatments and noticed a difference. I also upped stationary biking to every other day, that might be helping with the Lyme herxing or brain fog but whatever, it can't hurt.

Thanks, Katybug. So far I am doing ok tapering off. Noticeable improvement in cognitive, gait issues. I do get stomach pain at times, especially when I overdo upright physical things (not the stationary bike). Seeing neurologist this afternoon, will discuss use prn (as needed).

Hi KCmom, Thanks much for the info. I didn't know Dr Grubb believes Lyme can be a cause. I know the whole topic is controversial. Nice to hear good things about Dr Chelimsky. Just wish I didn't have to wait so long. Hopefully the Lyme treatment will start to show results by then. Thanks again. P

Happy for you both. It's a long road and Tyler's story gives me hope. Thanks for the exercises, always happy to add more. P

Thanks for the info. I guess I'll find out. I'm feeling good for the past several days so starting a bunch of antibiotics etc makes me concerned.

Another meal replacement I like is Garden of Life Raw shake. Organic, dairy, soy free and vegan. I'm not sure about the sugar/carb content (my Dr said to limit these) but it's easy to make and designed for people who are on raw diets. Lots of rice protein, minerals, vitamins etc. I also use the Garden of Life super green powder.

Hi looneymom, Thanks for the info. What type of Dr discovered the high dopamine receptor level? P

Yes, I made an appointment with Dr Chelimsky (on the DINET board) but can't get in until January 25. I'm assuming and hoping he is more knowledgeable about all the disparate issues. I imagine he at least is more up to date with research.

Hi heckof, I don't know where you are geographically but search the main page here for a dysautonomia specialist. The tilt table test checks for BP/HR change on changing position. I believe it is considered the gold standard test. Even if you never go back to the specialist doing the test it would add another piece for your naturopathic Dr to work with. Much of what you describe sounds familiar to me.

Hi All, I was recently diagnosed with chronic Lyme and it seems so have a number of you. I'm seeing a Lyme literate M.D., (naturopathic) and like him but it was only 1 visit. I know Lyme is suspected by some to cause(?) Dysautonomia or make us more susceptible. My questions: did you get better (in any way) after treatment with antibiotics? How long did you take antibiotics and how quickly did you see improvements? Did you experience Herxmeier reaction? Any advice on dealing with that? Any experience/advice welcome. Thank you, you have been a Godsend to me through this. Take care, P

KS42, Thanks for the info. You have/had Lyme too? I was just diagnosed and saw Lyme specialist this past week. He ordered these tests. I can't believe these are well known side effects, I'm getting so frustrated with my ANS neurologist. You would think she would know this! She keeps telling me it's anxiety and sending me to psychologists. My PCP had me on nortriptyline for bladder pain last December that worked but the neurologist took me off that on the first appointment. I was OK with bladder but then the stomach pain started. I think I'll start a new thread on Lyme. It seems quite a few of us have had it. I start antibiotics after these tests and am worried about Herxing. Thank you so much for the info. Take care, P

Just be sure the test is done as ks42 states. I suffered 5+ months of severe epi surges because the lab tech didn't do the first test properly. After complaining during these 5 months, repeatedly, about 4pm anxiety/doom (I didn't know what else to call it) the Dr finally 're-ordered and told me the tech hadn't been doing them correctly so I didn't appear to be hyperadregenic. Be your own advocate!!

See a Lyme literate Dr. I can send the name etc of the one I'm seeing if you PM me. He's in Waukesha, 30 minutes west of MKE. Not much to report yet on treatment, ramping up probiotic now, will start antibiotics/clonidine after testing completed this week. Will keep you posted. P

Check out the cookbook Deliciously Ella. A fellow POTSIE in the UK. Lots of quick/easy ideas. My sister-in-law recommended it (she lives over there and yes, my husband has the LOVELY English accent which I no longer hear ). I make batches of quinoa/brown rice/buckwheat and freeze them in 2-3 day supplies. My hubby also makes batches of scrambled eggs with veges which I use in 2-3 days with the carbs. The book has recipes for chia seed breakfast pudding that I make a day or two supply of. I had to order the Kindle edition several months ago, not sure if you can get hardcopy here. P

Hi everyone, Has anyone suffered cognitive issues with Gabepentin? In preparing for 24 hour saliva/urine tests for neurotransmitters and epi/norepi the instructions asked about hormones/meds. So, after being on Gabepentin since May for severe stomach pain (part of neuropathy?), for which it works great, I checked the side effects (webMD). I would have done this at the time but I was in the hospital and just too sick. Turns out all these cognitive/klutz/unsteady issues I've been struggling with recently and my neurologist blows off as anxiety, are listed. I have almost every one (accept of course the ones I'd kill for, drowsiness/relaxed state, can you say epi surge?). I emailed the link to my ANS nurse practitioner but it explains loads. Just curious of others experiences and if you had this and switched to something else, what?? Thanks. I feel like a detective, shouldn't the Dr's do this??? Argh... P

Kris, My 3 "regular" (standard) Lyme tests were negative. WI is a hotbed for Lyme so that was one of my first tests. The functional medicine Dr ordered Western Blot and some others. The company we had to send the tests to doesn't accept insurance so we submitted the bill directly to the insurance company ourselves (my husband, not me) and they paid 70%, it was expensive. Apparently most folks with Lyme test negative on the standard tests. What was so amazing to hear from this Lyme Dr was that I have probably had Lyme for years (makes sense, I used to be outdoors all the time), my stomach issues (decades) are probably related, even the cystic acne that developed in my 40's (dermatologist put me on doxycycline, standard treatment for Lyme) so I thought I couldn't get it. After respiratory virus, followed by stomach virus before I was over the respiratory one, I stopped the doxycycline cold turkey, I couldn't keep anything in and just never started again. I can tell you the day/hour when the wheels fell off during this stomach bug. So, even if you have been tested try to get the western blot, especially if you live in a Lyme area. The Lyme Dr said his daughter in veterinary school learned more about it than most M.D.'s. Just saying... Cold uticara? I thought I was the only one Sending good thoughts. P

Hi Kris, I'm so sorry for your difficulties. I'm quite frustrated with my ANS specialist who thinks my neuro issues are psychological. I saw a functional medicine Dr who did tests for Lyme among others. Turns out I have Lyme and a couple other tick borne diseases so off to a Lyme literate naturopathic M.D. who blew me away with questions about **** I've suffered from for years and never connected the dots, including stomach/digestion issues for years. My take away is try functional medicine and/or naturopathic M.D. Both my husband and I were doubtful and I am only now starting treatment for Lyme so can't tell if it's correct but for me, Lyme, coupled with viral onset makes sense. What I did like about both these Dr's is they listened, looked at the whole picture (including POTS) and will treat all of me along with PCP and ANS Dr. Sending good vibes. Peace, P

I took effexor for perimenopause symptoms for many years. Including really bad migraines. After a stomach flu which led to POTS/dysautonia I quit cold turkey. I couldn't keep anything down for more than a week and never started again. Turns out stopping it stopped my daily migraines. I tried it again 6weeks ago for depression/POTS and the migraines started up again. Just my experience. Good luck. Thinking of you. P

Hi All, I'm looking for others in the Milwaukee area and their experiences with Dr's. I'm seeing an ANS neurologist with Aurora but after 6 months and (at their request) sending a list of my symptoms for SS disability insurance this Dr suggested I see a neuropyschologist and seems to think my LONG list of neurological problems are not physiological (even with elevated epi/norepi levels on blood work and 'anxiety' always at 4pm daily). I did go for the initial interview but it destroyed me for 36 hours, mental overstimulation is one of my biggest triggers apparently. I have an appointment at Medical College of Wisconsin with Dr Chelimsky in January and a naturopathic Dr for possible Lyme next week. Just wondering about any experiences/suggestions for ANS Dr's in the area. Thanks. P

Hi Sylvie, Yes,he comes to all Dr appointments with me. I can't drive, walk to far without support. I'm totally wrecked today too so this is gonna be rough. Thanks for the advice/support. Glad people are contacting you. I can't even phone calls anymore but when I could they helped.