posted
Hi, I am brand new here. I don't know if I have Lyme. My most
recent Igenex shows:
IgM Borderline Positive
18 +
30 + (but then the 30 confirmation test was run and it was
negative for Lyme)
34 IND
39 IND
41 ++
73 IND
IgG Negative
34 IND
41 +
58 +
I was diagnosed with Interstitial Cystitis 6 years ago and have
been in hell since trying to heal and find out what is REALLY
wrong.
My symptoms are not "typical" Lyme and I am wondering how
likely it is that Lyme can manifest as all bladder symptoms. My
symptoms are burning in bladder, frequent urination (A LOT),
very distended abdomen where I look 4-6 months pregnant,
hormonal issues.
I have a LLMD and I am on IV Rocephin currently. My bladder
symptoms are the worst EVER and I am on my 3rd week of
1g/day, which I can barely tolerate so he is keeping me there. I
am very fatigued on the Rocephin (I have never had fatigue prior
to this, but actually usually have lots of energy) and have been
needing to take 3+ hour naps on some days with the Rocpehin.
I don't know if this is a herx, side effects, etc. I am feeling? Or
how likely is it I have Lyme. I was found positive for
Mycoplasma and Ureaplasma years ago. The Mycoplasma has
since been negative (although I don't believe negatives) and the
Ureaplasma is still positive after 9 months of oral abx. prior to
my picc line. I am unsure why this won't go away. Lyme
disallowing it to? Seems to be what my LLMD thinks. I am just
so confused. Any thoughts anyone?
[ 09. July 2008, 07:57 PM: Message edited by: Jeni ]
Posts: 11 | From los angeles | Registered: Jul 2008
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bettyg
Unregistered
posted
welcome jeni; so glad you found us.
jeni, i'm one of majority here who can NOT read long, solid block text. please edit this and break it up into short paragraphs; instructions are below.
on your igenex numbers....please show them going straight DOWN not across; helps us comprehend ok!
please send me a private message, it's 2 people standing together, and let me know you have edited and broken up your post. i'll come back then and read and then respond ok! thx
WELCOME, would you like a FREE copy of my newbie package of 124 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! ******************************
we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics.
so glad you found dr. burrascano's 05 lyme guidelines!
call your dr. and DEMAND MORE! you are now in the LYME WAR CONTROVERSY ... another thing you didn't ask for!
please see BELOW LINK about ACTION ALERTS....CALLING 4 WASH. DC PHONE NOS. GIVING THEM YOUR FULL NAME/COMPLETE MAILING ADDRESS AND TO "PUT LYME DISEASE ON THEIR AGENDA!"!!!!
IDSA, infectious disease society of america, are infectious drs. who:
.. do NOT believe in CHRONIC LYME;
.. treat from 1 day to 3 weeks MAX ANTITIOBICS, AND YOU ARE "CURED"! HOG WASH!!
ILADS, intl lyme associated disease society, are our LLMDS, LYME LITERATE MDS, and they:
... believe in chronic lyme AND TREAT US AS LONG AS NECESSARY!!!
... another controversy; various STATE HEALTH DEPTS. FILING CHARGES on our llmds for treating antibiotics longer than 4 weeks!!!
example: see activism; read about DR. CHARLES RAY JONES, KIDS NO. 1 LLMD IN CONN! starting his 3rd year of charges trying to take away his license!!!
*********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
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.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
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. *******************
please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!!
p.17: Antibiotic Choices & Doses From CBB: Amoxicillin-Children: 50 mg/kg/day divided into q8h doses. My pharmacist did the math for me, & it means: 35 lb child - 800 mg per day 70 lb child - 1,600 mg per day [1 kg=2.2046 lbs]
p.19: Treatment Categories Early Localized - single erythema migrans rash with no constitutional symptoms. Children: oral therapy for 6+ weeks.
According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria. Take a copy to your Dr and see if (s)he will treat according to these Guidelines. Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary. *************************************************
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. ***************
I want to make sure we have whoever on our NATIONWIDE LLMD list, which I have also with 12 other folks.
If you call any of the names where we do NOT have complete info, please ask the following and furnish me when you are done so we can add it to our nationwide llmd lists!! THANK YOU!
if you end up calling any above WITHOUT COMPLETE INFO, would you get the following IF possible from them??
we need full name SPECIALTY street addy city, state
phone no. fax no. web site or email if possible
cost per hour for 1st visit cost for followups
do they take insurance? what kind? treat by IV or ORAL?
thanks for helping us add to our drs. of around 300 nationwide who are LLMD! **************************************
we ask that all new members post in SEEKING DR. area and show cities/state in subject line.
please tell us a little about yourself; it helps in directing you the best way we know how! read 1 of top posts, and then answer the questions i've asked ok; WE THANK YOU KB!
also by posting on board, FLORIDA folks reach out and give you the MOST CURRENT INFO that we with nationwide lists just do NOT get promptly!! *********************************************
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It could be a herx. The meds are known to stir up the bugs and cause new symptoms.
I'm glad you're in good hands with an LLMD.
You might get more responses with this type of question in medical questions.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
jeni, thanks so much for breaking up your post.
dr. put me on ENABLEX; check into it for incontinence, etc. was on it 5-6 months when i finally stopped after my hip surgery when it began 24/7.
tutu gave yu her link with good info from dr. c, missouri, on western blot; good; print it off and circle the numbers conciding with your results! good luck!
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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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