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About Electra

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  • Birthday 02/01/1981

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    Denver, CO
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    Health, Photography, Art, Sculpture, Thrift Stores, Traveling

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  1. northern darlene - I would agree with you about having a negative western blot, but still having Lyme. The Igenex western blot is different than through Lab corp, or others because it shows which of the 10 bands you show sensitivity to, and the amount of sensitivity. A lyme doc can see your sensitivity and determine if you have it from this test, because you can be just below what the CDC considers positive.
  2. LMG- IV antibiotics didn't help me that much, but a variety of orals helped me a lot. Levaquin and Rifampin were the antibiotics that helped the most for me. But everyone is different, and working with a LLMD would be important if you decided to take them. If you have flares every 4 weeks or so, it could point to lyme. I had / have bartonella, I never tested positive for it, but the treatment worked dramatically. zithromax is usually used for Lyme or Babesia, and I've heard that POTS could be a symptom of both, if that helps at all. I did about 2.5 years of antibiotic treatment and I am a lot better but still have some problems.
  3. badhbt- oh were to begin! My life has changed so much in the past 5 years since I was diagnosed. I've spent a fortune and seen so many docs. I am way better but still POTSY and in pain. I have a hard time accepting it and keep hope alive that I can be who I was, but try to see the positive of what's happened and how I have become a better person (emotionally) because of it. That's the only way I can deal with the frustration. I hear of some people that kick Lyme totally and can return to life as before, and some who get better 80-90%. I'm in the later group. I would really like to try IVIG, but it's tricky getting a doc to do that because of the expense. Still searching for the "new me", I guess it takes levels of acceptance, but I'm still looking for ways to medically get as well as I can.
  4. Northern darlene - I have seen 3 lyme docs and they all say that you need a western blot (IgG and IgM Western Blot) from Igenex. You can do a bunch of other tests, but if you don't have al ot of cash, this is the only one you really need. A few years ago it cost around $200, and you have to have a physician that will sign off on it. The report is sent to the doc, not to you, and you have to pay in advance. I would ask your LLMD or perhaps ask an understanding doc that you have, not every doc will be into ordering this.
  5. When you say full on treatment, do you mean IV antibiotics? or just orals or herbals? I have done all of them if you have questions.
  6. Ok great, sounds like you are well versed with the Lyme mess! Long term broad spectrum antibiotics worked for me, they made me alot better. I do still have relapsing POTS and severe nerve pain in my neck. I guess that's what I'm left with but maybe there is another cause. I'm just sick of going to docs to find out what else they can do for me, which usually is very little.
  7. I haven't heard of this test, but I do have Lyme. It seems similar in price to Igenex, which is where I got my testing from. Lyme is such a minefield for testing and treatment, the thing is there really in no good test for it. Most people swear by Igenex, and I like them too. Unfourtanely a lot of people end up diagnosing themselves with Lyme after about 10 years of trying everything else, and being tested for everything else. I think that because Lyme is so hard to "catch" that a false positive isn't that frequent. Just my opinion as someone who has it. Lyme is such a mess in the politics of medicine, there are tons of doctors that say the current test and treatment are just fine, and a smaller amount of docs that say it isn't, and a TON of confirmed Lyme patients that KNOW that the common knowledge out there about Lyme is incorrect and oversimplified. I hope this is helpful! And hope you can get some peace of mind about it!
  8. Thanks for the reply, and man I hope this goes away after a month. I really enjoy the exercise, but not how I feel after. In order to get my heart rate between 135-155 ( rate determined by dr. Levine's protocol according to my age ) I have to jog, and I feel like that is taking a big toll on my body. I am used to doing yoga, and walking for exercise.
  9. I am trying Dr. Levine's exercise program, and I am finding that my muscles get REALLY tight and sore after working out. I am not sure wether it is because I'm deconditioned, or something else. I am trying to do alot of stretching, but it knocks me out for a few days. Not because I am dizzy, but because I feel sore and wet noodle like. Does anyone have this problem?
  10. joyagh- I'm so sorry to hear of your injuries and all you have suffered. Were you healthy before the accident? Do you believe that the accident caused all of your conditions? I was unsure from you post.
  11. Thank you for the responses - it's good to know that other people think that a neck problem could exacterbate POTS. I go back and forth thinking it is Lyme and thinking it is my neck. RF is short for radio frequency ablation, they ablated some sensory nerves in my neck and it helped! But the surgery relapsed my POTS. I had my c1 and c2 adjusted by a "NUCCA" chiropractor and it made everything worse. But thanks for the advice on cracking your neck. For me it seems like leaving my neck alone is the only thing to do and deal with the pain.
  12. To my knowledge I've never had a big event like a car accident, hit in the head, etc. I played soccer when I was a teenager and did headers, but I never remember anything hurting. 4 months after treating lyme & co-infections with antibiotics I've had severe neck pain ( nerve pain and muscle pain) that won't go away with antibiotic treatment. So I call this an injury because they think it is nerve damage, or post infection neuralgia. Also my neck muscles will not release, and I can't really touch them. It refers into my face and tongue too. I had RF done to c2-c5, this was a surgery, it helped the pain tremendously but flared my POTS. It seem that when something disturbs my neck my ANS goes haywire. Do you also think that your neck problems could cause ANS dysfunction?
  13. Hello Everyone- I was diagnosed with late stage Lyme in 2008, and 4 months into treating it I came down with POTS. I have severe nerve pain in my neck that started 6 months after treating Lyme. I've since had some of those nerves ablated in my neck, and the surgery brought on a relapse of POTS. Dispite all the long term antibiotics, I have a POTS relapse 2-3 times a year. Lyme is definately known to cause POTS, but could a neck injury cause it as well? I've just about had it with doctors, and I'm trying to unravel some of the things that may be causing my POTS. Since my surgery helped my pain, my most debilitating problem is POTS and the neuro symptoms it brings . . . hoping you all can understand! My disautonomia doc says that extreme pain can bring on a vasovagal response.
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