posted
Hi! Thanks goodness I am finding some info out here. I am 33 years old and mom to 2 beautiful little girls (2 & 3). I need to be able to keep up with them. Please help. Last year I began loosing hair in September. Followed by 2 months of terrible joint problems...hips, knees and wrist (Dequervains SYndrome). Doctors ran blood work (western blot). Everything came back negative other than a slightly elevated rheumatoid factor. I listened to doctors...did lots of yoga and stretching. Hair loss stopped. I seemed 100% again!
Then...8 months later...it all started w/ a vengence. Hair loss began late July. Followed by joint issues that are getting worse and worse. Then...this past week, the left side of my face has gone numb following some of the worst neck pain. I thought my lymph nodes were all swollen b/c it hurt behind my ears, neck etc. (MD gave me heart burn meds???) I went back to Doc a 2nd time when face continued with waves of pressure and numbness. This time I got blood work and CT Scan (heart, lungs). My face and neck hurt almost continually. My joint pain is settling mostly in my shoulders, neck and hip now. BUt, I do also have problems with elbows and wrist again. I should also note that I had a tick in my head 2 years ago, but my husband swore it was a dog tick. He removed it, but I have no idea how long it was there for. It was about 2 months after giving birth to my 2nd daughter (so 2 years ago). Also, we removed deer ticks from both my husband and oldest daughter after just playing in yard (we have woods behind our house). I apologize for going on-on. Just trying to be thorough in my search for info.
The results of bloodwork all negative with the exception of a slightly elevated rheumatoid factor (same as last year). The Lyme test they did was done at a local hospital and shows:
Lyme Total Antibody Screen (Lyme Total AB Screen) Result: .61 Negative < or =.90 Negative .91 to 1.09 Equivocal > or = 1.10 Positive
My question is: I have been on Doryx (Doxycycline) to clear my skin. Once last year in June-July timeframe for approximately 3-4 weeks (before my first test "Lyme disease, EIA w/ refl IGG, IGM Western BLot" which only showed Negative - Done at Quest DIagnostics). And, I was on it again for about 2-3 weeks this past May. Could it be impacting my Lyme tests?
I'm at a loss. My doctor's office is no help. And, they want me to see a rheumatologist. However, I don't feel like dealing with anyone else who just wants to give me anxiety meds. My pain is real and getting worse. I am unfocused and can't see to get anything accomplished. So frustrated. Thanks to this site for posting helpful info. I live in Quakertown, PA. Peace.
-------------------- Holly "that's what she said" (everyone needs a good laugh, right??) Posts: 3 | From Southeastern PA | Registered: Sep 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Sent LLMD list, helpful tips and links. Poster has posted in medical for additional help.
Reply here if you want to offer help and support other than LLMD info.
would you edit your post and break up your long paragraphs into MANY SHORT paragraphs and double space between each paragraph for us severely neuro lyme folks who can not comprehend or read as you typed this?
while you are editing, please show the state you need in subject line...
PENN LLMD NEEDED
then you will hear from folks in your state as well as we don't have time to read everyone's posts so we have to pick and chose; thanks for understanding. hugs
please use my guidelines below in editing, and helpful links below as well thanks so much.
******************************
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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 found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most 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. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Holly, welcome to our site. You have access to a wealth of information here.
I sent you info also.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would not use Q for WB. I would find a LLMD to treat.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thanks! I am going to ask the rheumat to run my blood using IGENX. Good luck to you and thanks for the feedback. : )
-------------------- Holly "that's what she said" (everyone needs a good laugh, right??) Posts: 3 | From Southeastern PA | Registered: Sep 2009
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welcome to our site. You have access to a wealth of information here.
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