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Panda2010 Posts: 219
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I saw my Primary Care Physician yesterday and she says that the test results have been misinterpreted and I do not have lyme.http://res.mdjunction.com/components/com_joomlaboard/
emoticons/shocked.png As much as I wish that were true, I've had two LLDs tell me that I have lyme from this test. Plus the doctor who ordered the test talked with Igenex to make sure he was reading the results correctly. I do need a PCP that is closer to home than the LLD (5 hours away) or the Integrative Med. doc (45 minutes) who will treat my fibro etc. I feel the PCP is needed for my disability too, so I don't want to change... http://res.mdjunction.com/components/com_joomlaboard/
emoticons/blink.png But, I am tired of fighting her. She wants me to see an infections disease specialist. Who, as we all know may not be lyme literate. Since I cannot drive, this is another trip to ask for a driver, pay a co-pay etc... Has anyone else dealt with this problem? Should I call Igenex to give her some more information? I did ask the lld to fax some sort of explanation to the PCP with the results from thyroid and other tests she ran. Thanks Post edited by: Panda2010, at: 04/30/2010 04:46 PM ***************** panda, i edited this so the links stood out; they would not work as you had them. DO AS WAXBY SAID! we've all been that route!! 40 yrs. chronic lyme; 34.5 yrs. MISDIAGNOSEd by 40-50 drs. UNACCEPTABLE! bettyg, leader  Post edited by: Bettyg, at: 05/01/2010 12:47 AM |
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TaraT Posts: 4164
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Yes it's best to have the lab give an explanation of a positive results because they performed the test and know what a positive is. If she does not accept that then you would be forced to either find a new pcp or not talk to her about lyme and jump through her hoops. Sorry you are going through this but we all know this is how it is....But I do think that Igenex is where you need to get the info. to her from. Ask them to fax it to her. She can NOT argue with the lab that did the test..If she does then she is really not that bright. With Him we "live" no matter the circumstances. At His feet peace of mind can be found. Peace that passes all understanding is my quest now and forever.
Numbers 6:24-26
"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace." |
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waxby  Posts: 4266
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~~~Hello Panda ~~~You are on the stereotypical Lyme Disease nightmare very unmerry-go-round. ~~~We are all dizzy from it.Do yourself a favor.GET OFF NOW!!! ~~~DO NOT see the infectious disease Dr.unless they are Lyme Literate. ~~~Eleven years ago my regulation Dr declared me negative,from two tests,according to the CDC standards and then sent me to an IDDr who declared me negative after three tests. ~~~By the time I high-tailed it to a LLMD,(Lyme Literate MD)I was enmeshed into the disease a year an a half too late. ~~~My sixth test was a clinical diagnosis.My professional mainstream non-Lyme Literate Drs made me sicker and all but distroyed my life. ~~~DO NOT make this same mistake or your horror story will become a horror story's horror story. ~~~However,if you enjoy learning the HARD way,please stay where you are-in the mainstream.Hard lessons are well learned. ~~~On the other hand a five hour drive to save your sanity is well worth it.The LLMD can set you up to see them monthly or every two or three months etc.DO IT!NOW! ~~~Don't make me beg you,cause I'll do it! ~~~OK...OK? ~~~PS. By the way,trust IGenex,deny your PCP!Your PCP has misinterpreted! ```````~~~In my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Mitchell~~~ Post edited by: waxby, at: 04/30/2010 08:23 PM ~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell
~~ “We reveal ourselves to ourselves in everything we do … life is our mirror … howdoyoudo? …” –Mitchell |
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TaraT Posts: 4164
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I totally agree with Waxby With Him we "live" no matter the circumstances. At His feet peace of mind can be found. Peace that passes all understanding is my quest now and forever.
Numbers 6:24-26
"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace." |
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Bettyg Posts: 27274
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yes, if you have a SUPPORTIVE PCP who will complete needed info for you to get ssdi, ss disability insurance work benefits, keep him! did he complete a rfc, residual function capacity, on you? read all about it in my welcome letter ... minoucat's DISABIILITY info; many of us contributed so folks could win; 1st time...1st step vs. 5 yrs. of hell i went thru to be approved! good luck. do you have a lawyer? 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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Panda2010 Posts: 219
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Thank you! I had to fight her about the mercury test results too. She wants me to stop taking the supplements that have kept me able to do one event a day instead of being in bed for hours. Yet, she really has not treated me much at all - except for trying to figure out why my blood pressure was so low it wouldn't register on the automated cuffs and often couldn't be heard manually. I tried to find a infectious disease specialist who is lyme literate, for quite a while, but couldn't find one in the area. There might be one at University Hospitals in Cleveland, but I have been told by Ohio lyme experts that Cleveland Clinic is notoriously poor for lyme treatment,so I didn't go there. Thanks for your support! |
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Panda2010 Posts: 219
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Thank you,thank you. I see my lld every month while I am in Cleveland for specialized physical therapy on a mal rotated neck and cervicogenic dizziness (went every Mon and Tues for 6 weeks, now on every other week). My head wasn't screwed on right! Ha! The LLD has been trying to build up my system to handle the lyme protocol. She found a thyroid problem and is building up my immunity (Colustrum and NK Stim) Right now we are waiting for the results of my last heavy metals test (metametrix) because she doesn't feel my liver or kidneys can handle both protocols. I've been doing oral chelation/ detoxicity for 6 months to get rid of the high level of mercury. Next week I will have my second and final examination for STRS disability. My lawyer said this was a very good sign (didn't have to attend hearing) so hopefully I get the disability. I also have an inner ear imbalance which causes vision difficulties and dizziness (why I can't drive). Well, the letters are getting too blurry now. Thanks for your support and advice. I appreciate your chiding for my best interest. |
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waxby Posts: 4266
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~~~And by the way Panda,your fibro is more than likely,probably certainly,a Lyme masquerade. ~~~Sing "Lost In a Masquerade" on your way to your LLDr. ```````~~~Mitchell~~~ ~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell
~~ “We reveal ourselves to ourselves in everything we do … life is our mirror … howdoyoudo? …” –Mitchell |
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Panda2010 Posts: 219
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Right. I've always had a high tolerance for pain and was surprised at the diagnosis. Although a rheumatologist and the LLD did the trigger point eval (rheum did it before and after neck surgery), a neurologist suggested it and sent me to the rheum. and my chiro mentioned the possibility several times. Anyway, fibro won't get disability with STRS so it doesn't even 'count'. My many debilitating symptoms keep me from working. I WILL sing "Lost in a Masquerade" - Love it! |
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Bettyg Posts: 27274
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Next week I will have my second and final examination for STRS disability. My lawyer said this was a very good sign (didn't have to attend hearing) so hopefully I get the disability. I also have an inner ear imbalance which causes vision difficulties and dizziness (why I can't drive). panda, what is STRS disability?? never heard of it!! you don't have to attend a hearing is even WORSE!! please describe what this strs disability to all of us; just reading what i did; you are getting screwed! i sincerely hope i'm wrong! bettyg, iowa leader/activist took me 5 yrs. of hell to get social security disability work benefits on 2 claims! 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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"MDJ has been a saving grace for me. It has taken from me that feeling of being so alone in the management of my Bipolar Disorder. I am not alone any more!! The friends on MDJ that I have made have kept me going. I am more at peace with myself now, thanks to all the people here on MDJ. I thank God for each one of them. MDJunction is the place of Hope." (Kelti)
