posted
Hello all im new to posting on here but have searched and read about lyme for years now trying to figure out what is wrong with me.
Short history when i was 14ish years old (now im 19years old ) i started to almost feel like i was coming down with an ilness flue or virus from then on ive had on and off symptoms that improved and then only to come back after oral abx treatment.
It began with tremors, dizziness, headaches back of the neck, rashes (hive like), constipation, ringing in the ears, brain fog, sore joints, disrupted sleeping patterns, pain near and under my ribs, painful lymph nodes, general itchyness. Shortness of breath, mouth ulcers pattern like the way they would come and go.
My main concern is this i took biaxin for 90 days 3x 500mg tablets and zithromax for about the same time later on due to a relapse. This is all being done by my gp doc. Now that i seem to be having symptoms again hes starting to scare me telling me i need spinal taps and i should see infectious disease specialists.
I did test positive for some bands of lyme last year not sure which and became negative after the abx. To me it seems like babesia and possibly bart. I personally dont think i was treated long enough or mayb not the right mg's/ combos of drugs.
Im going to make an appointment to see a llmd thats local i think thats the correct route does Dr.P ring a bell to anyone hes in my area and wondering how he is . Please excuse my typing as im sure theres plenty of mistakes and run on sentences im just trying to get as much info about myself now as im in a hurry .
Edited to space sentences an space out topics.
[ 28. April 2008, 11:13 PM: Message edited by: Lou B ]
Posts: 14 | From ct | Registered: Apr 2008
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posted
It sounds like it's a good idea to see an LLMD. It appears that you were most likely under-treated the first time. If you've had exposure as proven by your previous blood tests and still have symptoms, then you still have Lyme.
Will you please remove the LLMD's name? We say "Dr. P" here rather than the full name in order to protect our LLMD's.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Ok from what ive been reading in most cases a single antibiotic and for short lengths of time will not knock out babs or bart begining to think i may have both. 6 months total on 2 diff. abx probably did next to nothing it did get rid of night sweats and joint pain though. Seems like im going to go to dr p hearing good things about him just searched it , i will post my positive bands when i get the info from my gp
Posts: 14 | From ct | Registered: Apr 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
sent you a private message.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
ditto on what's been said, but make sure they test for co-infections. A good LLMD will know how to pulse and change abx so that you knock out all forms of lyme as well as co-infections.
It's a long tough road, but we're here for each other! You're not alone!
Just a note, we lymies have a hard time focusing on large paragraphs of words. Try to break up your posts with a few lines at a time.
Good luck! ILADS.ORG can help you find an LLMD
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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posted
Sorry I started to blab . Im very surprised on how little gp and infectious disease doc's know about this disease . Seems im on the correct route know and all the people on these forums are lifesavers man I cant thank you guys enough . But seems ive had lyme + coinfections possibly for 4-5 years which will probably take long term abx to kill everything off. Gp doc says negative results indicate nothing is wrong with me and its in my head. Are negative results common ? if negative results which is what ive been getting for a while on had 1-2 positive bands last year that doesnt mean cause its negative now the abx knocked lyme out which is what he was trying to tell me ( the gp)
Posts: 14 | From ct | Registered: Apr 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
breaking this up so most of us can read it.
Hello all i'm new to posting on here but have searched and read about lyme for years now trying to figure out what is wrong with me.
Short history when i was 14ish years old (now i'm 19years old) i started to almost feel like i was coming down with an illness flue or virus from then on ive had on and off symptoms that improved and then only to come back after oral abx treatment.
It began with tremors, dizziness, headaches, back of the neck, rashes (hive like), constipation, ringing in the ears, brain fog, sore joints, disrupted sleeping patterns, pain near and under my ribs , painful lymph nodes , general itchyness. Shortness of breath, mouth ulcers pattern like the way they would come and go.
My main concern is this i took biaxin for 90 days 3x 500mg tablets and zithromax for about the same time later on due to a relapse .
This is all being done by my gp doc. Now that i seem to be having symptoms again he's starting to scare me telling me i need spinal taps and i should see infectious disease specialists.
I did test positive for some bands of lyme last year not sure which and became negative after the abx. To me it seems like babesia and possibly bart.
I personally don't think i was treated long enough or maybe not the right mg's/ combos of drugs.
I'm going to make an appointment to see a llmd that's local i think that's the correct route. does Dr.P ring a bell to anyone? he's in my area and wondering how he is .
Please excuse my typing as i'm sure there's plenty of mistakes and run on sentences i'm just trying to get as much info about myself now as i'm in a hurry.
the biggest problem in reading for many of us is we cannot read large unbroken blocks of text. that's why i broke it up.
i would say that you are on the right track, if dr. p indeed a llmd. did you get his name from a reliable source, like our seeking doctors forum, ilads, website, local support group?
stay away from infectious disease docs, most are worthless when it comes to lyme and will not treat adequately.
welcome to lymenet, and keep us posted.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
welcome; glad you found us! WELCOME, would you like a FREE copy of my newbie package of 118 pages info galore sent by a PRIVATE MESSAGE 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! **********************
please break up your LAST POST.....
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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posted
OK sounds good sorry for compiling everything into one paragraph. I made an appt. with Dr. P in 4weeks i called at a good time i think this will be a life changer.
I recently noticed (im on no meds now) my symptoms flare every 2weeks ish then in between flares little annoying symptoms linger constipation back of the head headaches etc.
I remembered some less general symptoms i experienced which may help pin point what/if i have co ifections.
There were night sweats . waking up in the morning shaky not physically noticeable the feeling of shakyness.Waking up early seemed to be patterns of this on + off.
Low grade fevers caught them a few times 98-99 degrees. Now having flares of nausea shakyness increased heart rate. Raised rashes the size of a quarter on back of hands in the morning.
Lemme know what you guys think of those sympts .
Posts: 14 | From ct | Registered: Apr 2008
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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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