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Dizzy Dame

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Posts posted by Dizzy Dame

  1. Wheelchairs

    in Dysautonomia Discussion

    Posted

    I just ignore them. It used to bother me alot, but after a year of being in a chair almost every time I go out, I don't really notice it anymore.

    I know I'm still pretty self-conscious of using the chair, though. I feel prepetually embarassed. I don't know if that feeling will ever go away.

  3. Appointment In Nc

    in Dysautonomia Discussion

    Posted

    Future hope,

    I sent you a PM with the names of the doctors I've seen (and liked) who know about or treat lyme. Good luck!

    Em,

    T-shirts it is then! :)

    I'm actually pretty relieved myself not to be doing IV antibiotics. I was worried it'd be too much so I was very happy when my doc said the same thing. I think he picked Zith because of the specific bands they found on my test...something having to do with health insurance being more willing to pay for antibiotics that specifically target what I tested positive for...and zith also likes to kill borella, so it seems to be a win-win.

  5. Appointment In Nc

    in Dysautonomia Discussion

    Posted

    Hi Nicki,

    I was diagnosed based on a combination of my lab results and the doctors clinical findings. My labs came back negative the first time (on the ELISA test), and quasi-positive on the 1st western blot (band 41 was positive but nothing else). My most recent labwork shows that two bands are positive (bands 31 and 41) and three bands are "indeterminate" (meaning they aren't stong enough to be declared positive). The CDC requires that 5 bands be completely positive for an official "positive".

    But, as I said, since I have all the symptoms of lyme disease, a history of tick-bites, and my labs were quasi-positive, the doctor felt pretty confident that I have lyme disease. However, we can't say the diagnosis is iron-clad until we see how I do on antibiotics, so in essence, there's still a bit of a gamble involved.

    Many people test negative for lyme, sometimes multiple times, before getting a positive test. That's why most lyme-educated physicians know to look at the clinical findings in conjunction with the blood tests. Unfortunately, many physicians haven't read the most up-to-date literature on the diagnosis of lyme disease, and are ignorant to the fact that a negative lyme test DOES NOT exclude lyme.

    As for how long I've been sick, it's difficult to say. I first started having joint pain and fatigue when I was 17 (about 7 years ago now) but my POTS and other autonomic symptoms didn't begin until the summer of 2005.

    I hope that answered your question :)

  6. Appointment In Nc

    in Dysautonomia Discussion

    Posted

    Hi All,

    First, I wanted to thank everyone who sent me emails or PM's wishing me good luck with the antibiotics! Your support means so much to me, and I'm so glad I have all my friends at this forum cheering me on through this very frustrating and difficult journey.

    I went to see the infectious disease specialist today to go over my lab results and to plan a course of action for the antibiotics. I thought we were going to start the IV today, but after going over my lab results, and given the severity of my symptoms, we've decided to start with a low dose of an oral antibiotic "zythromax" for the first 2-3 months, then revisit IV antibiotics after that time.

    The problem is that I'm already so sick that a bad reaction to antibiotics could be really bad. We all want to make sure that the treatment isn't too strenuous on my body, which makes sense. Even though part of me wants to yell "get on with it!", I know slow and steady wins the race (Emily, it seems I'm going to be a turtle as well :P We'll have to get T-shirts made or something :) )

    So I'm going to fill the prescription and start it as soon as I get home to Maryland. We're hoping that the low dose will keep the herxheimer reactions at a minimum. But the good news is that the doctor has treated many young women with the EXACT same symptoms as I have (joint pain, fatigue, dysautonomia) who have made complete or almost complete recoveries.

    I know I'm probably flogging a dead horse at this point, but just to say again: if any of you still don't know the cause of your POTS, and have tried other treatments and aren't improving, I'd strongly urge you to see a doctor who knows about lyme disease. I feel it can't hurt to explore it as an option.

  8. Pots Can Be Caused By Lyme

    in Dysautonomia Discussion

    Posted

    Nikigrl,

    The CDC states that a lyme diagnosis cannot be made based on test results alone. There are many, many documented cases of lyme existing in individuals despite testing negative for the disease. However, this is a very controversial area of medicine at this moment in time, and honestly, I just don't have the energy to get into all of it right now. However, here are some links that will give you a good picture of what lyme disease is, how it is diagnosed, and the various opinions on treatment. If you still have questions, you're welcome to PM me.

    Also, you may want to do a search for lyme on this site. The debate on lyme has come up many times before.

    CDC website on lyme symptoms:

    http://www.cdc.gov/ncidod/dvbid/lyme/ld_hu...se_symptoms.htm

    CDC website on diagnosing lyme:

    http://www.cdc.gov/ncidod/dvbid/lyme/ld_hu...e_diagnosis.htm

    Wikipedia article on lyme (which shows both sides of the chronic lyme argument)

    http://en.wikipedia.org/wiki/Lyme_disease

  9. Pots Can Be Caused By Lyme

    in Dysautonomia Discussion

    Posted

    Thanks for posting this! I'm about to start IV antibiotics for lyme tomorrow and was beginning to get nervous, but reading your post reminded me of why I'm going through all of this. What great timing!

    Yes, POTS can be caused by lyme. Not everyone who has POTS has lyme, and not everyone who has lyme has POTS, but there is an overlap.

    I was initially tested for lyme disease when my first symptoms started several years ago, but I tested negative. I was retested last year and it was negative again. But this summer I got a quasi positive test, and after seeing a very respected infectious disease specialist, I was diagnosed with lyme based on the quasi-positive test, my medical history and presence of other indicators of lyme disease.

    I've already started a few of the treatments in my protocol and I've been doing a bit better. Tomorrow I start IV antibiotics, and hopefully my symptoms will continue to improve.

    Anyway, thanks again so much for posting :(:( It's so good to hear from those who recovered from POTS, to help remind all of us that recovery may be possible.

  10. Do Some Times Of Year Bother You More??

    in Dysautonomia Discussion

    Posted

    This topic has come up pretty freqently on the forum. Perhaps you could do a search on it?

    I do have seasonal worseing of symptoms, but only in the summer. I do best when it's cold out, so the winter has become my favorite time of year. It's funny because before I got sick, I only lived in tropical areas because I hated winter so much. Now I pray for snowy, cloudy days :(

  14. Here At Cleveland Clinic, Again

    in Dysautonomia Discussion

    Posted

    LindaJoy,

    I'm so sorry all this is happening to you! Hopefully if they can find what kind of mitochondrial disease you have, there will be some new treatment options for you. In the meantime, you'll be in my thoughts.

    I haven't been directly diagnosed with gastroparesis, but I do have periods of weeks (sometimes longer) where eating more than a bite or two of solid food makes me very nauseous and feeling bloated. Usually when this happens, I sip a can of Ensure over a period of an hour or so as a substitution for meals. If I sip the Ensure, it seems to help. However, Ensure does have ingredients that may upset your stomach, so I'd talk to your doc about it first.

    I hope this hospital trip brings you at least a little relief!!!!

    ((HUGS))

    Lauren

  18. My New Doctor

    in Dysautonomia Discussion

    Posted

    I'm so sorry you had to go through that! :rolleyes:

    There are lots of people out there who enjoy hurting others. Sometimes, those people even find their way into the medical profession.

    I feel what that doctor did to you was sadistic. Anyone with a brain can see that POTS is debilitating and IS a real condition that is much more complicated than "fainting all the time". Beyond that, he seemed to like the idea of hurting you by saying you were a bad soldier...a rediculous assertion.

    I'd reccommend fighting back. This cardiologist must have superiors that you can talk to, and I'd even see if you can't talk to a disability discrimination lawyer about what you went through. Even though you may not have a case, most disabilities lawyers are very helpful to speak to about any discrimination. I have a lawyer I call every once in awhile who gives me advice, even though I've only had to go to court once over discrimination. There are probably options for you within the hospital, like filing a grievance, speaking to his superiors (as I already said), speaking to patient relations or a combination of the three.

    But the bottom line is that doctor shouldn't be seeing patients. He is unfit to care for people who are vunerable, since he obviously enjoys taking advantage of that vunerablitiy.

    I really hope you start to feel better about the incident. Remember that you ARE a good soldier, and that you've done nothing wrong by being sick, HE is the one who is in the wrong, not you.

    ((((HUGS))))

    Lauren

  20. Headache After Flu Shot

    in Dysautonomia Discussion

    Posted

    Yes, the flu shot shouldn't make anyone feel sick. However, people with lyme often report having bad reactions to the flu shot. I'm not sure, but there may be other autoimmune disorders that flare up with the shot as well. Bottom line, though, you probably should tell your doctor about this flare in symptoms.

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