Lyme Disease Support Group

Hello - I was just diagnosed with Lyme disease 2 weeks ago. I've had it for about 9 months though - or at least that's when I got the tick bite.

Anyway, I have the joint issues (mostly knees), muscle pain, weakness, chest pain, dizziness, fatigue...I know those are all common symptoms. For the past two months or so though, I've been having problems with my blood pressure - it gets really low. It's especially bad in the morning and again at night. My heart races, I get the "head rush" feeling when I stand up, and the blood seems to pool in my feet (only when standing) - they turn bright red. Everything returns to normal when I sit down and put my feet up.

My rheumatologist says I have some level of dysautonomia. We're hoping that as the antibiotics really kick in, it will subside. In the meantime, I'm trying to up my salt intake some and drink a lot of fluid. I'm scared that I have some kind of heart problem. I've had a few ekg's - a couple that were abnormal (nothing life threatening) and a couple that were totally fine.

Before I knew I had Lyme, I talked to my regular dr about my concerns...and she totally brushed them off, even though she saw my feet change color (she couldn't explain why that would happen).

Has anyone had anything like this happen?

Thanks for reading.

I also have some dysautonomia, it is somewhat common with lyme, but at the same time, you should also get it looked into, curious as to what the abnormalities were with the ekg's. I was watching medical mysteries or something, and it turned out the lady had dysautonomia and they had a way of treating it, but not sure what. But certainly keep treating the lyme. Possibly see a cardiologist to look into it further. Keep us updated

Dysautonomias have many causes and hence treatm,ents--its VERY important to be correctly evaluated. having a "little dysauto" is like being "a little pregnant"--you cant--you HAVE it or not!!

the website www.ndrf.org id fantastic for info as well as dr referrals--unfortunately they know LESS aboput it than Lyme and there are only a hadnful of knowledgeable Drs

there is Dr Low at Mayo, Mn but its almost impossible to get in unless you happen to fit the profile of one of his current research projects

ther is Dr Biaggionni and Roberston and others at Vanderbilt Univ ( tenn)--Dr B will speak with your own Drs getting them up to speed and what tests to do and most importantly HOW to interpret--the unbelievable thing is that this sort of stuff is even more misdiagnosed than Lyme!!! scary!!

and finally Medical college of Ohio-Dr Grubb but he is on permanent leave at the moment due to family crisis.

be very wary of Mount Sinai in NYC--the lead there tols me to go home and expect to die--6 or 7 yrs ago---and totally had wrong info about interpreting some of the standard tests...very disheartening to say the least

and even IF on the NDRF list--call ahead and talk to staff to get a feel about experience etc

there IS a secondary dysauto comes from infection that a few Lymies get--as well as a transient ( not lasting) type simply from being very ill over a long time and becoming inactive--those are the most likely to improve when Lyme is under control--but there are far more types and underlying causes too

for example IF you have a genetic makeup and this Lyme was only a trigger, there is a possibility youll always have it

I have the bad luck of being genetically susceptible AND triggered by Lyme AND born with connective tissue disorder called joint hypermobility a form of Ehrler's Danlos...all three add up to a very BAD dysauto picture that once Lyme added its ugly head--well, the worst scenario

be very careful about the salt/water--OLD news--many do great simply becoming hydrated--adding water alone!! a new ( past 2 yrs) study by the Mayo group found even BETTER responses to plain water over extra salt!!!

watch cardiologists--I have an excellent group here in NJ and the best thing they do is admit that they know ZERO about my dysauto and always consult with Dr Grubb ( my specialist)--and most dont

trythe website, learn more and then find a good dysauto specialist...if you need specific info email me finrussak@aol.com

I was firts diagnosed with POTS/dysautonomia and I wanted to keep my appointment with my LLMD.

I found out I was positive both IGM and IGG through Igenex. This made me feel much better as to what was causing this.

It is really bad for me because I can bareley stand up long, have to have legs elevated, and it is hard to drive because I get dizzy. My car also doesn't have air conditioning which doesn't help.

I am hoping to find out my co-infections soon so I know exactly what is causing this.

I am currently taking Doxy200mg/day. So far it has only got rid of my head pressure.

I have Lyme and POTS as well. They seem to go hand in hand for some people. I have good days and bad days. You just have to be good to yourself!