posted
I am hoping someone can help me. I am quite confused. Four weeks ago, I developed a rash, legs/arms, some on torso and back. Rash was NOT typical bulls eye rash. Went to ER, they said food allergy and put me on antihistamine. Four days later, rash still present and feeling horrible w/joint pain, fatique and heart palpitations; went to urgent care, they stated food allergy and put me on prednisone. Finally three days later got in to see reg. Dr. who basically said, I don't know could be several things...(lupus, arthritis, lyme...etc)-she tested for lyme. My blood work came back ten days later. I was reactive to 41KD IGG and reactive/positive to 41 and 23 IGM according to the Western Blot. My doc put me on ten days of doxy. Wasn't better in five, so I got in to see an Infectious Disease doc who basically said, she doesn't think it's Lyme because it's not prevalent in Missouri. I explained that I had traveled two years ago camping in Canada, she stated that my symptoms don't really match up to Lyme, but something else...an autoimmune disorder. So she ran a bunch of tests including another Lyme. She also stated that my previous Western Blot could have just been a false positive. She went ahead and gave me eleven more days of Doxy. The Doxy really isn't doing much, except making me nauseas and unable to eat. I still have bad joint pain, and have now developed a fever. How do you know if it's Lyme? Isn't the blood work supposed to tell you and is there a false positive? Any helpful info would be great, I am sick of feeling sick. Thank you to anyone that can help me.
Posts: 2 | From MO | Registered: May 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Please activate your private message capability.
Maybe you can find it in your profile?
Most dr. info is done in the private message rather than on public area.
It does sound like you need to see someone experienced with lyme and co-infections.
There is one in your state, but info is done with pm.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Jetta,
I copied and broke up your text to make it easier to read:
I am hoping someone can help me. I am quite confused.
Four weeks ago, I developed a rash, legs/arms, some on torso and back.
Rash was NOT typical bulls eye rash. Went to ER, they said food allergy and put me on antihistamine.
Four days later, rash still present and feeling horrible w/joint pain, fatique and heart palpitations; went to urgent care, they stated food allergy and put me on prednisone.
Finally three days later got in to see reg. Dr. who basically said, I don't know could be several things...(lupus, arthritis, lyme...etc)-she tested for lyme.
My blood work came back ten days later. I was reactive to 41KD IGG and reactive/positive to 41 and 23 IGM according to the Western Blot.
My doc put me on ten days of doxy. Wasn't better in five, so I got in to see an Infectious Disease doc who basically said, she doesn't think it's Lyme because it's not prevalent in Missouri.
I explained that I had traveled two years ago camping in Canada, she stated that my symptoms don't really match up to Lyme, but something else...an autoimmune disorder.
So she ran a bunch of tests including another Lyme. She also stated that my previous Western Blot could have just been a false positive.
She went ahead and gave me eleven more days of Doxy. The Doxy really isn't doing much, except making me nauseas and unable to eat.
I still have bad joint pain, and have now developed a fever. How do you know if it's Lyme?
Isn't the blood work supposed to tell you and is there a false positive? Any helpful info would be great, I am sick of feeling sick.
Thank you to anyone that can help me.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
It could be lyme or something else. You are right, it doesn't matter that a doctor said there isn't much lyme in your area.
Most infectious disease specialists are hesitant to diagnose lyme, even with a positive test.
It would be a very good idea for you to see a lyme specialist (LLMD.)
Perhaps someone else here can interpret your test results. A better test for lyme is run through IGeneX.
Make sure to take your Doxy with food to avoid nausea.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Thank you bejoy and northstar! I think I enabled my private messaging, but am not sure. This site is soooo helpful.
Thanks for the tip with the Doxy, my doc said take it w/out food; so I'll try w/food tonight. I have soo many questions.
I tried first to get in to see an LLMD after researching the area and he is booked for one full year. I asked to be put on the "cancellation list" since I live close by.
I will take any suggestions I can get. Again, I just appreciate not feeling like I am alone. Thank you again.
Posts: 2 | From MO | Registered: May 2008
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bettyg
Unregistered
posted
jetta girl, welcome; so glad you found us!
you've been given so much wrong info, it's NOT EVEN FUNNY!
go to top of medical and look for a post by LYMETOO, Dr. C's explanation of western blot igm and igg. PRINT OUT WHAT TUTU POSTED THERE explaining the numbers. circle those that were positive or IND; NOT NEGATIVE numbers!
God bless you Bejoy for breaking up her post!
jetta, i have many answers for you, read the below and if you ARE interested in getting my newbie package galore; instructions are below!!
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!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. *******************
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bettyg
Unregistered
posted
jetta,
we have folks post over in SEEKING LLMD DR. area.
but since i'm on yours now, i'm sending you a private message with the no. 1 MIDWEST DR., and you are lucky he's in springfield, missouri!!!
the pm will be in my profile or on left side under hello to access it! HIS WAITING LIST IS 6-8 WEEKS!
please reply to my PM and tell me the full name, city/state of the person you were referred to. you want to be taken off his waiting list. YOU WANT THE BEST ONLY!
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Do as Betty and lymetoo has suggested,,,they are the smartest of the best of people here!!!
My guess is you live in Northern Mo. AND if that LLMD that you were waiting for,,1 year wait,,,was in KC,,,forget that one,,,go to the real deal LLMD in southern Mo.
NOW hurry up and get well again and rejoin the world of the living!!!
Ford rivers,blaze new trails,,,JUST get there!!!There is time for YOU to get all better quickly,not disseminated yet!!
That doxy you were given,,,how much per day?? SEE if that first doc will extend that till you can get into Dr. C 400mg best,,,300 better than nothing,,,200 almost LIKE nothing!!
AND there is NO lyme in Missouri???? I have a perfectly perfect bridge they need to buy also!!! Thats the biggest joke of all!!! run dont walk out of THAT office!!!
Monday morning,,be prepared to make THE call for appoinment!! Caring--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Hi...I'm new to Lyme too, I think... I've also never done a discussion online like this before, so please bear with me...
I was perfectly fine until April 6th 2008, when I woke up with swelling and mild tenderness in my rt ankle. It swelled starting on the inside under the ankle bone and then spread to the outside of the ankle. My knee and hip hurt on the rt side also.
My doc ordered x-rays, thinking I had a hairline fracture. No fracture found. It was very painful especially in the am-it felt like someone one shoving a needle up my heel. The pain would go away for some days, then come back and swell again
n April 26, my left ankle started to swell as well, with pain.
May 4th- my knees were very painful (both) and I found a painful little bump on my forearm. No rash, a red bump. I also developed a sore throat Went to the doc again, tested for lupus, cat scratch fever, rheumatoid arthritis, lyme.
All came back negetive, meanwhile, my pain and swelling getting much much worse.
May 8th both ankles swollen, left clownishly swollen, knees too painful to walk. Can't stand up- pain too excruciating. Iwas also running a low grade fever. 100.9. I begged my doc for antibiotics for lyme because I knew tests can be neg. He gave me 2 wks of doxy 200mg per day and prednisone to take down swelling.
I took the first doxy that nt, NEXT DAY was able to walk again!!!!! Swelling still there but much less pain as the days went on. On May 13 I started prednisone to help with swelling. Now I am pain free (Except rainy days-not pain, just tightness in knees) I was exteded the doxy for 2 more weeks for a total of 28 days.
I know I'm probably giving too much insignifigant info, but my question is, will this come back? I'm looking at all of your posts and it's scaring me. Should I be on longer dose of doxy?
Is it possible to have Lyme with no rash, no flu symptoms, no nothing, just straight to joint pain? I think that the fact the doxy worked overnight is pointing to lyme- right? Thank you to anyone who reads and answers this!!! I appreciate it
Posts: 5 | From New Jersey | Registered: May 2008
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Check out the canlyme (canadian lyme desease association) website for pics of multiple em rashes. (they have the best pics for the type of rash that you described).
My son also had multiple em rashes. His were not as distinctive as the classic bullseye, but did have central clearing. His doc was also unable to recognize them as lyme, but he tested very positive for lyme, so we were able to get tx.
Not all lyme rashes look like a bullseye, thus it is good to look at the pics available.
I agree with all the others, try to get abx to carry you through til you can get into an llmd, and putting your self on the cancellation list is an excellent idea. Call every week to see if there are cancellations, so you can snag that appointment if one opens up.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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