well I had my test today and it was horrible to say the least. 40 minutes into the test when everything seemed to be fine my heart rate dropped below 30 beats pm and my blood pressure plumeted. I blacked out only to awaken to find out that I have a pretty bad case of this stuff and I now am looking at a pace maker if the meds that they have prescribed do not help. they figure this could be the root of many of my problems but we will see. I spent the whole dang day in there recovering after that nasty blackout. it must have been a pretty good one because the cardiologist was pretty shaken up at how fast I dropped to nothing. so chalk some crap up in this battle against lyme. I am pretty down in the dumps after today and I feel like crap but I now have another answer and another piece of the puzzle.

ryt73,
I,m so sorry to hear that you have this also on top of the lyme. Sounds like you had a horrible day. I wish you the best with your treatment. At least now you have some answers and with treatment you will get well. Take care

Wow ryt73 I am so sorry for all you went through. What type of meds will they give you? I pray for you that the meds will work and you will start to feel so much better.

Chad,

I'm so sorry - I've had that tilt table test done at least 5 times now and each time it feels worse than the next. I usually pass out within 15 minutes.

They were considering a pacemaker for me for a while but in the end determined it wouldn't help and that treating it with medicine and supplements helped a lot. I hope the same is for you.

The medicine that helped me the most was Florinef (Fludrocortisone) combined with Salt tablets. Also, drinking a TON of water and exercising to keep your muscles toned so your blood flow is stronger.

It's a really hard thing to struggle with. When I was first diagnosed with it, doctors really knew nothing about it - now at least they know some more.

Here is a great link with lots of useful info:http://www.dynakids.org/Documents/newsletter5.pdf

The site is for kids who have POTS (which falls under the category Dysautonomia) but it's very helpful.

For those people I know who have had pacemakers, the procedure is very simple and apparently they felt better instantly.

Anyway, any questions at all, I'm here.

i'm so sorry you're going through this! I don't know anyone else in my life who has this - so at least now I have a friend in the same boat.

:)

Chad and Chase: Please read this post about Mitochondrial disorders: http://dailystrength.org/groups/environmentalillnesses/discussions/messages/2757446

thanks loudlizzard!! I found it pretty interesting and I joined the group to watch for more info. I really hope this post on POTS opens others eyes as well because I am sure many others have it and don't know. I never had a clue until my doctor mentioned it and then I looked. the symptoms are so similar to lyme that is worth mentioning to your doctor. I just want to help others here get better too.. thanks for all your replies and good info..

Chad

Thanks Chad you are right about really paying attention as its never good to have tunnel vision not for yourself or your doctor and that does happen many times with Lyme all symptoms get blamed on the Lyme but is not always the case.

I did want to point out on here and make it clear to all of you that in no way am I saying that I don't or any of you don't have lyme disease by bringing this POTS up. it is very clear that POTS is brought on by great bodily stressors such as cancers and other illnesses that really take a toll on your body so I am sure that lyme fits right in that great bodily stressor area. also your heart rate and blood pressure are controlled by your nervous system which can be damaged by lyme. I was told when I got my Igenex test back and I talked to the doctor that the lyme was in my nervous system pretty bad according to what bands it was found in. this is the only reason I wanted to clear this up with all of you. I just think it may be worth looking at for your own sake and to mention it to your doctor..

Chad

This is so tightly related to neuropathy I thought I would add this...

Lyme and POTS effects the autonomic nervous system...

Consider your autonomic systems to be... everything that your body does automatically without you telling it to do it... and now those signals are mixed up and not working right. Such as... GI problems, dizzy, lightheaded, heart rate, fatigue, flu, nauseated, unexplained problems in general, digestive issues, allergies, days and nights mixed up or sleeping problems, asthma and breathing problems, sometimes vision problems, blood pressure goes high or low...

You will not have all of these problems at once and will sometimes be fine for a while... then flare ups happen... if it's not one thing it's another...

Go to the neuropathy group and check it out...

http://dailystrength.org/groups/neuropathy

I am commenting on this to pull it back to the front page for mcfmmfmlf's to be able to see. I hope this helps.
Consider having your daughters tested by igenex labs. (igenex.com) they are the most reliable tick born illness lab.

Please read this carefully.
My daughter has been deathly ill for 2 1/2 years with POTS ... no real treatment, no known cure. Over 32 top specialists, $150,000 in medical bills ... no answers, just doctors who tell her good luck.

We now know that she has had LYME disease the entire time. She has a common coinfection that causes tragic headaches (she passes out 10 - 20 times every day), heart problems, nausea, sleeping disorder and intense joint and muscle pain. Our physician did not think she would survive this year ... but he said she definitely did NOT have LYME so save your money and don't bother with blood tests!

Testing is brutal in Canada ... check out IGenX labs in CA for more accurate testing kit. Please visit the national LYME society for your country and get in touch with a LYME specialist.

Our daughter is now taking intense antibiotics as well as specific formulas to kill the bacteria that has attacked her brain. She has dramatically improved ... no thanks to the pathetic medical system that REFUSES to acknowledge chronic Lyme disease.

Get the right help NOW ... LYME is the FASTEST GROWING diease in North America and so many are suffering with no support!!

How very scary of an experience you've had with your daughter, marktw! I'm so sorry. BUT, how great ($150,000 later) that she has a correct diagnosis and is getting the appropriate treatment. Here's hoping that things turn around for her in a positive way, as quickly as possible (I know nothing seems to be quick with lyme!).

I have heard of others with POTS triggered by lyme- especially teenage girls.

Take care :)

I just wanted to post and say to marktw:

I'm so happy you are getting your daughter the proper help.

I was diagnosed with POTS when I was about 16 years old. They didn't diagnose the Lyme until I was 26 years old. I am now 29 and after 2 of the most grueling, terrifying years of my life on intensive antibtiotic therapy - I am lyme AND POTS free.

Curing Lyme did cure my POTS. I never thought I would have a normal life but here I am, newly pregnant with my first child, happily married and HEALTHY! It's been a year since I was taken off of all antibiotics and I have my life back for the first time in at least a decade.

So I guess I'm trying to tell you to be hopeful. My family and even myself never thought my life would be anything but medical hell and illness...but now the only doctor's appointment I've had in the last year is to confirm my pregnancy.

Your daughter is lucky to have your support and I pray that she experiences the same recovery as I do. If you ever have any questions or want to talk, I'm more than happy.

Chase- So you ARE pregnant!!! I remember when you posted and were worried about Lyme returning because of certain symptoms, and I wondered if you felt sick because of being pregnant! Well, this is good news all around! Congrats on beating Lyme & POTS & your new addition!

This is a very interesting thread...

Yes, actually the exhaustion in early pregnancy felt so much like lyme that i was convinced that's what i had! You can imagine the elation when the doctor said "Not Lyme, you are pregnant!"