Lyme Disease Support Group

Some days I have been very dizzy. Ever since getting sick in July I have had a heart rate that is anywhere from 98 to 120 while standing and it is generally about 80-95 when lying down. I also have pretty low blood pressure 90/60 or 80/55 sometimes. It is never above 108/75.

Does anyone else deal with this with lyme and is it dangerous? I googled high heart rate, low blood pressure and it said it was but no doctor seems to care about this.

It may be Postural orthostatic tachycardia syndrome (POTS). It occurs sometimes in neuro-Lyme. If your heart rate increases 30bpm or greater when going from lying down to standing, it would strongly indicate POTS.

There are other autonomic dysfunction syndromes that are similar as well.

Ask to have a tilt-table test done. Treating any autonomic dysfunction could make a substantial improvement in symptoms. (FYI: autonomic dysfunction can cause irritable bowel sometimes as well).

Amanda, thanks. I have been wondering for a long time if I have this. Some days are way worse than others. I feel like about 1 or 2 times a week I have a crash day where I feel like I am unstable. Don't feel safe driving, etc.

I put my heart rate monitor watch on today and have noticed some wild fluctuations. Most times sitting to standing goes at least 25-30 beats per minute. I have seen a cardiologist about this but he didn't seem too concerned. Tried to put me on Florinef which is a steriod and I only took twice (before I thought I may have lyme) and it caused insomnia. So I stopped taking it and that was last August.

Since then I think my body has compensated for feeling it all the time, but I think it still goes through the wild flucuations a lot. And I do have IBS symptoms which have been crazy lately with the trapped gas, bloating and waking at night a few times with these issues.

I thought I'd run this odd question past you because of your medical background because when I have told this to a few doctors they look like me like I am crazy, but I think it tells a large piece of what is going on with my bowel issues. When I have a lot of issues (bloating, trapped gas and feeling like my bowel system is not operating normally) my gas that comes out does not have an odor. I only bring this us because last October through December when I was going through all these gastro symptoms it did not stink. Then in January when my gastro system came back on (so to speak) it did have odor. Then at the end of March til now..no odor. It's not that I want there to be an odor (LOL!) but I think it tells where the problem lies. Do you know what this could be????

p.s two more questions. When my heartrate rises to about 30 bmp upon standing it pretty much comes down 20 bmp within a few seconds of standing. Would this still indicate POTS?

Also is a cardiologist the best person to see for it or would a neurologist be better?

I can relate. My heart rate is fast a lot and I have bad dizziness in general. When I stad from laying down or something, my heart rate goes way up and I feel like I am going to faint.

Seeing a cardiologist could be helpful. I saw one and didn't really find much. Obviously my heart is okay structurally but it has trouble maintaining. I sure hope these symptoms go away soon.

Do you find that some days are way worse and then you can go several days feeling ok (as far as this part goes) and then you are dizzy again? Do you feel dehydrated in the morning and does your stomach pulse when lying down?

The bowel issues you describe sound like IBS symptoms (w/ small intestine involvement). This could certainly be a result of POTS or some other sort of dysautonomia.

It is considered a neurological issue b/c is it dysfunction of part of the nervous system. Going to a neurologist with complaints of dizziness usually results in a tilt-table test if no cardiac issues are found.

I would definitely consider seeing a neurologist for an evaluation and tilt-table test. The cardiologist probably suspected non-specific inflammation causing the issue thus the steroids were prescribed.

I am going to make an appointment with a neurologist then. Thanks for the info.

One last question..do you know what would cause the abdominal pulsing? I have had an ultrasound done and my aeorta was within normal limits, but my stomach pulses a lot high and also around the aeorta. It feels very irritated. Would IBS cause pulsing in the stomach?

I do have days that are much worse and some days feel pretty good. I wish those good days were every day!

The pulsating abdomen can be normal. Many people feel that. It is likely still from the aorta but maybe if your thin there is not much from aorta to the surface of your stomach.

I suppose it is possible for IBS to contribute if there is any abdominal inflammation, specifically around the intestines. I'm honestly not sure, just trying to give you some ideas.

I am rather thin, but before this illness my aeorta didn't pulse like this. Then one night back in August my heart rate went really high and I had diahrea for a while and a fever and my abdomen was pulsing like crazy. It was scary. Nothing would bring my heart rate down and then finally after three hours I went to sleep and woke up ok. But ever since my abdomen has been pulsating a lot. That day I had pushed myself a lot and then had an alcoholic beverage (2 beers) which was before I realized I could no longer drink alcohol and then the above happened. It was in the highlight of my illness when I didn't really want to accept how sick I was and wanted to live like before.

There has been so many weird things with this illness. I still question if its lyme or if I am dying!