posted
I am looking for a lyme dr as I have been treated with doxy/ ceftin for a few weeks with no improvements. The "good" news is that I had a rxn a couple days after starting the ceftin where I had severe joint pain in my hand with swelling and the dr said that is a positive sign. That joint pain has diminished greatly since then. I have not had a positive lyme test but I have had many symptoms and had found an attached tick on myself in May. I am wondering about coinfections as my symptoms started the day after I found the tick and they came on strong. We have only thought of the lyme possibility recently. I have had many tests since May (2 MRIs, MRA, EEG, a lot of bloodwork- all normal). I was having a lot of tingling/ numbness/ burning in my legs, hands but that has subsided alot. I was also having episodes where I thought that I was certainly going to pass out, blurred vision, heart rhythm changes and disequilibrium etc. Now my main symptoms are brain fog, very strained vision, pain behind eyes-sometimee, and burning in hands when wet. I would love to have a dr who can lead me through this.....I also have had some purple sreaks on me and my toes are numb in the am.
I am willing to travel to see a good, caring dr. We have just done some bloodwork for the coinfections but they were sent away and I am not sure how reliable/ helpful that will be.
A HUGE thanks for this group and any help you can offer!
Posts: 4 | From manheim, PA | Registered: Aug 2009
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bettyg
Unregistered
posted
welcome webster
my friends will be along as time permits to send you llmd info
please break up your post into MANY, SHORT PARAGRAPHS and DOUBLE SPACE between each paragraph for us serverely neuro lyme folks who can not read or comprehend as is.
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. ------------------------------------------------------
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 get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ 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!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, webster--We are so happy that you came to us for help. We will give you all the information and support we can!
I see bettyg has sent you a wealth of information already. You will find in your "lyme educational journey" that the "majority" of people with lyme will test "negative" this is why it is so smart to go to a llmd who knows this already.
Your symptoms are very common with those of lyme and a good llmd makes a "clinical diagnosis" and understands the larger picture.
I am sending you a private message, click on the flashing envelope.
-------------------- 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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posted
Thanks, could you please also send me the LLMD list for MD and DE.....I have heard of a few drs in MD and might be interested in going there. THANKS
Posts: 4 | From manheim, PA | Registered: Aug 2009
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bettyg
Unregistered
posted
webster, penn. has MANY llmds that can help you.
maryland has many also; we do NOT give out that many names; sorry since your own state has many.
15-18 states do NOT HAVE ANY LLMDS; so you folks are so fortunate to have what you do hugs
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Please check your private messages for the LLMD list for your state and Maryland. Do join in the
discussion in our ``medical section'' for additional help, education and support. It's a great place to learn more about this illness.
You have many very good LLMD's in your home state.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Thanks. I wanted MD b/c someone told me a good dr there that I was tryong to locate and some areas of MD are closer to me than some of the PA drs...THANKS so very much!
Posts: 4 | From manheim, PA | Registered: Aug 2009
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
RE: purple streaks. This can be a symptom of Bartonella. There are some photos on this site if you do a search.
Posts: 2097 | From PA | Registered: Jan 2004
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