tiger

I sent my records a few weeks ago to Dr. Low for review and found out last Friday he will not see me. All they said was that there is nothing else he can do. The only test I have had for pots is the TTT, which the cardiologist interpreted as negative since I didn't have any drop in BP, but my HR went up to 160-180 so to me and my doctor it was a positive test. I know that I look bad on paper, I was treated for lyme with no success so he probably saw that and didn't want anything to do with me. I am not expecting a miracle, just had some questions that my doctor can't answer since he has never treated a pots patient before. I also wanted to know if some of the new symptoms I am having are related to the pots or if it is something else. How can they do this to me?? I feel doomed now and I feel like nobody can help me now.

Thanks everyone for the support. I really do need it right now. I guess I have to look at the very few things that have gotten better instead of all the bad things. This has been a huge lifestyle change for me, I'm only 27 and don't have any children yet.

The last couple of weeks I have been feeling horrible. My body feels achy and I feel like my muscles in my chest and legs and neck don't work as well. I am extremely fatigued, just to go to the bathroom wears me out. My heartrate is not out of control at this point. I feel as if I am getting worse and I feel doomed that I will never get better. Has anyone gotten better after this period of time. Mestinon isn't really helping much. Please say some prayers, I don't want to have to go to the ER again. Is there any hope for me???

I too have a tiny cyst on my pineal gland. The neurologist said it was nothing to worry about and a lot of people have them. Good luck!!

What kind of antibiotic are you taking?

I don't know if I have this yet as I am still waiting for the test results. After I started taking lopressor 1 mo ago I had trouble swallowing on and off for a couple of days, then it went away. I switched to atenolol last week and a couple hours after that I had trouble swallowing. Later that week I had facial and eyelid drooping. Very scary, feel so ulgly inside and out. I also have raynauds which doesn't help things either.

Maybe you could describe your symptoms a little more so we could get a better idea of what is going on. Were you on medication for pots before? In the mean time you can do salt water loading and compression stockings.

Calypso, it's comforting to know that yours has gone away. I pray that mine will too. It's very scary when this happens and I am trying not to think about it.

I would like to go to mayo since I feel I am getting worse. Started getting sick 6 mo ago. Got progressively worse and last month I was in the hospital, had a TTT and diagnosed with POTS. I would like to see a specialist and want to go to the best. How do I go about this, what's the procedure? Oh, forgot to mention I have crappy HMO for insurance and can't switch until Nov. How long does it take to get an appointment and how many days for testing, will they want to do retesting? My neurologis here ***** and am being treated for pots by my local doc. I think I am his first patient with pots and I feel like an experiment.

Thanks everyone for replies. I don't have anything wrong with my eyes. Keep your fingers crossed. Used to have acid reflux but it went away when I stopped working so I know this isn't from that. I don't have lyme, was already treated with that with no success. Just pray that I don't have MG. I don't think I can handle another horrible diagnosis along with POTS. I feel my quality of life is so poor now I am losing hope.

Be careful with your lyme treatment. I was clinically diagnosed with a seronegative test and did 4 months of antibiotics. They did not help me at all, wish I would have never taken the antibiotics since I feel they damaged my ANS even more. But hey, if your test comes out positive go for the treatment!!

For the last few days I have had trouble swallowing on and off. The muscle feels weak, but I can still swallow, just a little slower. Sometimes have slurred speech. I was in the hospital a month ago and had similar things going on and they just attributed it to the POTS since I have severe blood flow problems to my brain. Before it was releived by lying down, but this time its taking longer. Really scared I have myesthenia gravis.

Thanks for the advice. Have you noticed any side effects to the Provigil? How long did it take before you started to notice a difference?

I am having trouble with the beta blockers. Have raynauds so I can't take those anymore since my feet are like ice. So am wondering if anyone had any luck with ssris to control hr. I am scared to try Florinef and want to use that as my last resort if nothing else works.

Anyone else have this problem? My feet are soo cold all the time they are white. Since increasing my dose a few days ago I sometimes have neuropathy pains in my feet. My scalp is also numb sometimes. I have raynaud's and read somewhere you aren't supposed to take lopressor if you have raynauds. Does anyone else have raynauds and take lopressor with any problems? Any advice on different betablockers? I think it's time to switch.

I have severe brain fog all day long, temporarily releived when I lay down. For me this is my worst symptom and does not seem to be getting better with treatment. I am currently taking lopressor, am on my 4th week now. It is doing a great job of controlling my heart rate, but my doc says once the lopressor controls your heart rate your brain fog and neuro symptoms should go away. I don't think so and I am getting very discouraged. I feel like I have a brain of a 90 yr old woman. Social situations are difficult for me because I feel like I am in space all the time. Also, I noticed my hair is falling out and my feet are Extremely cold of which I think is from the lopressor. Any advice, please help.

Laila- There are many different antibiotics that treat lyme, and Biaxin is one of them. If you had lyme, you would have to take several different kinds of antibiotics to treat the different forms of the spirochete (bacteria). It depends on how long you have had lyme to determine how long you should be treated. But then again lyme can cause pots. Some pots patients symptoms have improved with the treatment of lyme, but it is not a cure for pots. You would not want to take the biaxin for a long period of time because after a while the antibiotic will lose its resistance and will not work any longer and no you can't take it for life. I would encourage you to get tested if you have not already. Have you been bitten by a tic? There is alot of info on lymenet.org. Also, tics carry other diseases, like bartonella(cat scratch fever), erlichiosis, and babesiosis. Hope this helps.

Thinking about going on an antidepressant and wondering anyone's experience with this. I have a lot of nerve pains and am also wondering if this helps the automaumic sytem, also depressed becuase of illness.

Susan- Just curious who you see for you autonaumic doc. I live in Chicago and need to find a doc. Please let me know. Hope the appointment goes well.

I need some help finding a doctor. I live in Chicago. I don't really want to see the one in Chicago because she is an endocrinologist. I would rather see a neuro or cardiologist as that is where all my symptoms are. Please help, I can't take this anymore and need advice.

I am being treated for lyme and had severe muscle loss from it. Had an EMG which was normal. If you want to be tested for lyme, it needs to be a Western Blot test done through IGENEX labs. You can go to their website www.igenex.com. This is the most reliable test for lyme as they test for many different strains of lyme compared with other labs. I had an ELISA test for lyme which was negative( most lyme patients test negative and this test is unreliable) so don't even bother with this test if you doctor orders it. Since being treated for lyme my legs are alot stronger, but haven't really gained any muscle back yet. I do believe the dysautonomia was triggered by lyme. Don't worry, it will get better.

I know I have dysautonomia & Pots. I am also being treated for lyme. I have tacchycardia when going up the stairs and in the heat, I have major brain fog, forgetfullness( which is fine when lying down), pins and needles nerve pains, and headaches, and some dizziness. Have not had a TTT yet. I am already taking in salt & lots of fluids. Please help me find a doctor. I live in the NW suburbs. Any advice on treatment and how much salt to take in would be helpful. I can't go on like this, am very depressed. I want to have children some day and have read scary stories.