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newmommy3
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hi i am shannon. i am 20 and trying to figgure out what the heck is wrong with me. sorry this might be a little long and thanks for reading. after the birth of my son i started getting really bad migraines. also, my vision decreased a lot and i get flashes, floaters, afterimages, trails on lit objects. i also get a pressure sensation in my right ear lasting for liek 10 days at a time. dizziness, and fatigue. i have had 2 mris with contrast dye. eye exams , and tons of meds for mgraines and it didnt work. i am wondering if it could be lyme. i have also had bells palsey. what do you all think? how do i ask my dr to be tested for lyme without him thinking im crazy, which i am sure he does. thanks Post edited by: jaime1978, at: 06/21/2008 04:47 |
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jaime1978
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Shannon, if you read my profile it will give you a more detailed background than I'm going to give here. Basically I was diagnosed with fibromyalgia and MCTD (lupus, RA, and scleroderma) also borderline MS and sarcodosis. It didn't sit well with me, so I just kept studying my symptoms, and one day my husband came across some ladies story about lyme disease, it sounded just like mine, and everything that had been happening to me. then it clicked, I remembered I had two ticks on me (which by the way, most people do not even know they were bit, many never get that rash, etc), so I brought it up to my regular doc, who laughed about it, and said, chances are so low, blah, blah. but I knew in my heart this is what it was, so I got a hold of some lyme friendly docs, of course none in my state, and went to one, who ran an IGENIX test on me, and I definitly have band 18 and 41 positive, and a couple others, and a few IND's which lyme docs count as positive. and lyme is a clinical dx anyhow, meaning, based on symptoms. pm me please, so I can tell you some things that I can't put on this board. I'm going to edit your post to take your location off of it , that is open for anyone in the world to see, ok. pm me, first read my bio. jaime Please do not take anything I say as medical advice. I am not a doctor.
~lyme disease support group leader~
please pm me with any special concerns |
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denise17
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Hello and welcome!! I'm sorry for what you are going through. It sounds like lyme to me. What I would do is respectivly tell your Dr. that he has tested you for a number of things and has'nt found the answer, which it sounded like from your post. Then I would tell him that you've read about lyme and the symptoms seem the same as yours. Ask him for the test but let him know that you've heard that the Igenex labs are preferred for lyme testing. If you don't know about Igenex labs, you have to pay for the tests up front then get your insurance to reimburse you. The most basic lyme test is $260 and then it goes up from there. I should also let you know that from what I've heard from my Dr. is that if you have a lot of neurological symptoms from lyme it will not always show up in blood work. There is also another option. If you are open to the alternative route, do a search for a Dr. of Nauturopath an ND. I would think that in your area they would be familar with lyme patients. Ask if they have treated lyme pts. The NDs do there own testing for lyme without bloodwork. I personally go to a clinic in Atlanta that is run by an MD but also has a ND as well as other complimentary treatments. If you have more questions you can PM me. Good luck and take care, Denise Denise |
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ConnieD
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Hi Shannon, Because you are suspecting lyme, you already know more than the doctor you are seeing. This disease is surrounded by ignorance, politics and denial. Please pm Jaime for a list of LLMDs in your area. Your symptoms sure sound 'lymie' to me. I had the same thing happen to me. Unfortunately this happens all the time. You are not crazy, none of us are. I took the alternative route and found a biological MD who helped me recover. There are options for treatment and if you're interested in my doc, just pm me. It's in the South, so I don't know if that would even work for you. Keep fighting for your right to get well. Peace, Connie Please do not take anything I say as medical advice. I am not a doctor.
Open your mind to the possibilities available to you.
An attitude of gratitude is good 'medicine,' too.
~Lyme Disease Support Group Leader~ |
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AnnF
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Hi Shannon, So sorry you're going through all this, keep pressing to find the answers and the right path for you. My son was diagnosed last Nov. after being misdiagnosed for 2 1/2 years, he's now doing alternative treatment at the clinic others here use. I was just dianosed this week and am going there as well. Good luck to you, Ann |
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Clayton72
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You can order a kit from Igenex directly and ask your doctor to do the blood work. All you have to do is enclose a check and take it to a local fed ex shipping center and off it goes... www.igenex.com Good luck and let us know what happens! |
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Julie4848
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My doctor went off of how I was feeling 8 days after removing the tick (no rash) but the flu and very bad neck and knee pain..He knew it was not the flu due to it being the end of July here in Chicago. I did not test positive until Oct 16 at 3:00pm when I got the call... However, he did not play around started me on the abx route ASAP. He did run all other kinds of tests to rule out anything else that it could have been, and I thanked him for that..Even though he knew it was lyme he wanted to play safe. (I have numerous other health issues) that is why he ran the other tests and so it may be, he did find other things wrong. But it was lyme that caused all the new sympthoms... As of today almost a year later, I feel pretty darn good. At times I think its coming back, but it goes away each time...I think once you have it, you always live in fair that it will return so I try hard not to think about it much anymore (ok hard to do)...Like being outside, I hit the shower as soon as I'm done outside and I Spray my body like made with Lemon oil (Ticks hate lemon)...So far so good... Much luck Julie p.s. I did have my blood done by Igenex, expensive it cost me $1080.00 but my insurance company paid me back $700.00 of it. You do have to pay up front and submit the claim to them, it is cheaper but I had all the co-infections also done to make sure, well worth the $$$...I also tested positive I had 5 bands on 41 but for past infection it was negative so I guess that was a good thing. I did have a past infection for Bart, but I have had numerous cats/dogs and many bites and scratches so I am doing nothing for the Bart, I don't feel I need to at this time... Lyme will not win, we will and we WILL… |
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"I am so happy to be a part of the MDJunction family! Where I used to be alone, I now have friends whom inspire me, comfort me, support me, and do not judge me. My new life began October 17, 2008. I weighed in with severe depression, social anxiety disorder and avoidant personality disorder. I was born with complications but I am fighting for my life and I will survive!!" (apieceofwork)
