I was dx'd with Lyme over ten yrs ago. All I remember is that they did a western blot test that had to be sent out to california and it seemed it take forever to come back.
I was sore all over, and that winter before I had been sick as a dog with pneumonia that lasted forever too not even sure if that was tied in, probably not.
Anyway, I had lost a lot of weight from dieting, and instead of feeling better, I felt worse. I was stiff, had a rash on my arms, not the bulls eye. Tired all the time. Joint pain. Go to Primary doc they run bloods, comes back positive for lyme disease, they throw me on a months worth of antibiotocs. I beleive it was a months worth of amoxicillin.
I felt no better, felt horrible still, went back to infectious disease specialist he said, it's probably fibromyalgia, take these sleeping pills and deal with it.
Well all these years later, I've just never gotten better and now, I'm worse.
About five yrs ago I got really bad. I no longer test positive for lyme so no one treats me for that or takes that into consideration. That's out of my medical history now.
I got very sick with chest pain, thought I was having a heart attack, nope, pneumonia, nope, pleurisy, nope. Just enlarged lymph nodes, some fluid around heart and scarring in lungs. Well they thought maybe I had sarcoidosis.
Had a mediastinoscopy, where they open the throat up and go into the chest to get a biopsy of lungs and lymph tissue. Still nothing conclusive.
I have high blood pressure now from my weight from being on steriods from pain issues with my joints.
I have a rash all over my face. If I go out in the sun I get rashes. My blood work to this day shows nothing that could be rheumatoid arthritis or Lupus.
Yet my rheumy wants to treat me for this. I am convinced I have chronic Lyme. At this point its almost what I'm convinced of.
Last thanksgiving I had a stroke from a migraine. I am left with no peripheral vision now in one eye and no nasal vision in my other.
I have to have hip surgery in my one hip because of such bad damage in the joint.
I really need to find out how to get this taken care of before it kills me.
I don't think all these pills I"m on are helping me, instead they are killing me faster. I'm on probably about 8 pills or so.
Thanks in advance people.
Posts: 3 | From Ulster County NY | Registered: May 2008
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posted
...lisa, welcome and SO glad you finally found us to get hope to get on the road to REMISSION!
i'm so sorry for all you have been thru to date from being UNDERTREATED with your antibiotics and NOT LONG ENOUGH ON THEM!
glad meg could help you; we have same names, so i'll offer you somethign else.
ths for the wonderfully, detailed letter. you were so thoughtful to have short sentence paragraphs and double spacing it so we neuro lymies can comprehend/read it!!!
1st, DO NOT GO TO INFECTIOUS DRS; they don't believe in chronic lyme disease that you do have; and only treat for UNDER 30 days!!
2nd, GET OFF STEROIDS; it's a no no for lyme; others will tell you the reason since my neuro mind isn't working as i type this!
yes, glad you are finally going to a LLMD, LYME LITERATE md!
please go to activism forum; look for PALLONE'S NAME,
and please call the 3-5 phone numbers there involving our 2 LYME BILLS IN CONGRESS; with 9-10 days left before they are DROPPED again in 10.5 years!!!
WELCOME, would you like a FREE copy of my newbie package of 120 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
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posted
Thanks so much to everyone that wrote to me with advice and information.
Only problem is I dont' have cash on hand to go to these doctors.
So they are out of the question. They don't take my insurance. They are pretty expensive.
Right now coming off my steriods I hit a bad flare, rashes, pain like you wouldn't beleive in my chest that was unreal, and a butterfly rash on my face, I was at my rheumies office and she had to start me back on steroids again
I just couldn't take the pain. It was either that or head for the E.R. My rheumy is going to do another lyme test but it will do no good.
I keep testing negative.
Every test I have had done in the past five years is negative now. And the tests all show my results within a day. How do they get my results so fast now when years ago they took so long to come back?
Oh well, I guess technology has changed a lot over the years huh?
Thanks again everyone. I'm so sore right now. I need to lay down. My chest feels like an axe has been put through it.
Posts: 3 | From Ulster County NY | Registered: May 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Steroids is a big no-no for Lyme. Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
But, here's the thing, no one thinks they are dealing with lyme any more, my lyme dx was over 11 yrs ago, and now they think they are dealing with a connective tissue disease diagnosis like lupus.
So it's so hard for me to know what's going on and my doctors are so clueless. I just want to scream. I don't know what to do anymore. And I'm in mega pain and the steroids are the only thing that take me out of pain. The only thing.
Posts: 3 | From Ulster County NY | Registered: May 2008
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posted
melissa, don't go to any doctors in ulster county, i can tell you from much experience! in particular, avoid drs k****r and t**k, they don't know what they are doing. dr k****r is the clown who undertreated me and refused to acknowledge it. the hospitals in kingston failed to even test me aside from the tick bite, the rash, teh symptoms, etc...and here i am a bunch of months later. go see the doc in hyde park, i signed up with him today. best wishes and feel better!!
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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