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zsazsa Posts: 5
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I am so glad to have found this group. Thank you for being here.I had a tick bite 4 years ago. I was immediately tested ELISA (too soon I now know) and it was negative. I have been sick ever since with joint paint, muscle spasms, fatigue, gallbladder removed, my thyroid is now being attacked by my antibodies, I am low in all Vitamins, and the list goes on. I cannot work anymore. In the past 4 years I have seen 16 doctors, had MRI's of my brain and hand (1 finger is 3x the size of others)and been tested, diagnosed and undiagnosed with just about everything under the sun. I have spent a small fortune. I have actually been "fired" by 2 doctors, I beleive because they thought I had Lyme and it scared them. I think they knew they couldn't cure me by CDC standards - so they just got rid of the problem, which was Me. I never acted disrespectful, or gave them any reason to fire me except I kept bringing up Lyme Disease. I finally found an LLMD and had the Igenix test. I show results below and would like some feedback on them if possible. I am going through treatment now. Rifampin 600 mg a day and Zithromax 250 mg a day. I have had 4 HBOT (Hyperbolic Oxygen Therapy) dives last week and will continue each day this coming week. Although I think I am herxing this weekend, I still have doubts that I am doing the right thing! So many doctors have created self-doubt in me and made me feel foolish that I just have trouble believing myself and my body anymore. I keep going back and forth. Do I have Lyme? Am I going through this treatment for nothing? I am very depressed and cannot see an end to the pain. IgeneX below: IgeneX IgM (Western Blot): All negative, except Band 41 was IND (Indeterminate) IgG (Western Blot): + on Band 39, ++++ on Band 41, all of the following were IND: Bands 23 thru 25, Band 31, & 34 I need hope, encouragement. I know I need to rebuild my self esteem that my sickness (and my doctors) have taken away from me. Thank you so much for listening. used quotes to enlarge text size, bettyg, leader Post edited by: Bettyg, at: 03/11/2012 12:02 PM
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Bettyg Posts: 26546
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welcome zsa  i think of zsa gabor and have a hard time typing it, so IF letters are transposed, sorry! did you receive my brief welcome? a longer welcome letter is in my signature line below. print off at the top DR. CORSON'S KID'S EVALUATION applies to adults too except meds/dosages are different. she explains the entire body and which DISEASES affect each part. by the time you get done reading it, you'll know what you are dealing with. also print off dr. burrascano's lyme treatment guidelines ABOVE dr. corson's link, 37 pages. read it daily to get an idea of what we are dealing with and learning the terminology of things. in my welcome letter is also the link for SUCCESS STORIES, read that daily to show you there is HOPE, REALITY, ENCOURAGEMENT, and what they chose to do which enabled them to get into remission. hbot ... many folks are/have tried this. i've had 42+ yrs now; 35 yrs. MISDIAGNOSED by 40-50 drs; unacceptable. i've come along way from what in the world do i have to where i am today. glad you found us, lots of things to read and start with my welcome letter gives the HIGHLITES ONLY of where to begin ok. later, go to LYME FACTS forum from reputable sources. hang in there, hugs/prayers always, bettyg, leader avoid the negativity folks including FAMILY/FRIENDS/drs; find yourself SUPPORTIVE ones to stroke you giving you encouragement and I'M HERE FOR YOU ATTITUDE! Post edited by: Bettyg, at: 03/11/2012 12:16 PM BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader
NOTE: I DO "NOT" USE CHAT thanks!
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NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-
Any information provided should not be used to take the place of advice from your personal physician or other professional.
Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more. |
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Leah123 Posts: 46
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 Hi, You are in the right place. I certainly can not tell you if you have Lyme or not I can tell you some of my best days have been when I denied I had Lyme, but kept doing all my Lyme treatment. So somewhere deep with in me I knew I had Lyme Disease. It sounds to me like you have a LLMD that is leading you in a direction that holds promise. An LLMD is a(Lyme literate Medical Doctor). Best wishes to you on your journey. The road is not always easy, in fact it is very hard at times it is however, a road worth traveling. Many LLMDs do prescribe HBOT. I have never tried it, but I have thought about it. I have a policy that I only share my experience with Lyme Disease & coinfections.
I also, share some of what I have learned from my own research. I sometimes give friendly advice.
If you need medical advise please see a MD or other medical professionial. |
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zsazsa Posts: 5
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Thank you Bettyg & Leah. Betty, I will read the info. - Thank you! |
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zsazsa Posts: 5
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I have just completed my 27th HBOT treatment, along with 27 infarared saunas afterwards. I am on antibodics, and numerous supplements. I have 13 more Oxygen Treatments to go and hopefully my LLMD will feel that is enough. I have been feeling better, but this last week, I feel I have taken a step back. I have been very fatiqued and felt flu like symptoms. The Lyme Arthritis (sausage swelling) in the middle finger of my right hand has not gone down with 2 1/2 months of treatment. I think it will always be disfigured. Anyway, I'm a bit discouraged today and just needed to share. My friends are not very supportive and I feel isolated - I don't think they understand what I'm going through. |
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Bettyg Posts: 26546
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zsazsa,you are NEVER alone with us; we DO understand what you are going thru, and can share what has worked and not worked for you plus suggestions we learned the hard way. so DON'T DWELL ON OTHERS AROUND YOU, dwelll on positive feedback from us all. thanks for the updates on yourself. as you said, your finger MAY not ever be as it was; time will tell; we can't rush anything on our diseases. best wishes, hugs/prayers, bettyg, leader BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader
NOTE: I DO "NOT" USE CHAT thanks!
**************************************
NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-
Any information provided should not be used to take the place of advice from your personal physician or other professional.
Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more. |
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zsazsa Posts: 5
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thank you Betty |
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wildcondor Posts: 38
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HBOT is a great adjunct to Lyme treatment! So glad you are doing this, it really helped me. www.wildcondor.com/hyperbaric fixed link; she forgot the d in wild bettyg, leader/friend of condor Post edited by: Bettyg, at: 04/20/2012 09:23 PM www.wildcondor.com |
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gfm Posts: 80
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hi zsazsa, I have been on this forum before but not for a long time and I've just recently logged on again because I felt I really needed to involve myself in the lyme community again (bit of a relapse after surgery) where other people understand what we are all going through. I also feel that none of my friends really understand and it is so difficult to explain it to people without seeming like I am complaining about everything. It's not really the same, but it's a physical example - I fell and hurt my shoulder last June. In 10 months I saw 16 doctors and had 7 different scans/tests and various therapies to try to fix it. I was told it "must" be nerve damage, that I was "overly focussed on it" and other wonderfully (un)sympathetic things from doctors. I began to question myself, even though I couldn't use my arm and was in a huge amount of pain. I was eventually diagnosed with detached muscles and sent to a surgeon who specialises in this and when he cut me open he confirmed that I had actually ripped two muscles off my shoulder blade and that, yes, my pain was real and my injury was real. My point here is that an obvious physical muscle injury can still cause you (because of bad doctors) to question yourself and no-one really has all the Lyme answers, so that feeling of doubt is inevitable. trust yourself and trust what your body is trying to tell you because you are the one who knows best what your body needs. good luck Post edited by: gfm, at: 05/11/2012 09:45 PM Post edited by: gfm, at: 05/11/2012 09:46 PM Post edited by: gfm, at: 05/12/2012 08:33 PM |
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zsazsa Posts: 5
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I have had so many doctors run me out of their exam rooms. They were rude, and naive. But, for 4 years, I never gave up. I did scrape the bottom of the barrel with some doctors. I actually knew more about Lyme than they did. And, gfm, I have started to educate my family and friends. Lyme is predicted to be very bad this summer and I have sent out at least 20 brochures and literature. The most important thing I tell people is that if you are bit by a tick and have any flue symptoms within a couple of weeks, assume it is Lyme. There are no test (including the overused & ridiculously "miss-used" ELISA test). No test yet that can determine if you were exposed to Lyme until about 4-6 weeks after the bite - even then it is tough to diagnoise. I do not understand why doctors continue to give the ELISA test within a few days of a bite!?! So, if you have flu symptoms within a couple of weeks of being bite - demand that your doctor immediately put you on Doxycyclin for 2 weeks - that should take care of it since it is early on. I had to wait 4 years to get a diagnosis. It is hard to treat at that stage. But last week my dr. finally took me off the antibodics and Wednesday I have my very last (and 40th!!) HBOT treatment. I feel better than I have in years! Except for my middle finger on my right hand. It is stil swollen about 2x's it's size. But happy, happy, happy! - Zsa Zsa |
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