posted
I am thoroughly frustrated, ill feeling and desperate. I am on the Eastern Shore of Maryland and although I have been on antibiotics for three weeks, my symptoms are getting worse. Today I can hardly see and everytime I turn my head I get nauseaous. I call my doctor every day and am beginning to feel she thinks I am crazy. Is there a doctor on the Eastern Shore of Maryland that is familiar with Lyme?
-------------------- Crissygirl Posts: 4 | From Easton, MD | Registered: Aug 2009
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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 information regarding ILADS and Dr. B's guidelines.
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.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Crissygirl007, it may be possible that you are feeling more pain because the antibiotics do make us herx. It is very common that we will experience much more pain during this time. Did your dr. not mention to you that you may become more sick due to the antibiotics (abx)? Is she a lyme literate dr. or not?
We offer alot of information about lyme on this site. Please go to "medical questions" and post any questions you may have and also at the top you will see, the 8th one down, "Newbie Learning Links by: Treepatrol this has info you will enjoy learning and becoming educated on lyme. There are other very informative readings at top of "Seeking a dr." also.
I am sending you a private message with more info. Click on the flashing envelope.
We are happy to have you and to help you all we can. Good luck hon.
-------------------- 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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bettyg
Unregistered
posted
welcome crissy,
please change subject line to
EAST SHORE MARYLAND LLMD NEEDED
just click on pencil, 3rd box to right of your name to open up subject line and text ok
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!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you some names. Good for you for finding LymeNet and deciding to see a doctor who knows how to treat lyme disease.
Do whatever it takes to stay on antibiotics until you can get in with a lyme doc. There can be a wait.
Go to walk-in clinics if you have to, etc. The antibiotics will help at least keep the lyme from multiplying while you wait to get adequate treatment.
Regular doctors are taught that lyme is no big deal. So, when one of us is suffering so badly, they do treat us as if we are crazy. We have all been through that. It will end when you get to what we call a lyme literate doctor. They understand exactly how bad this disease can be.
I hope and pray you can get to one of our docs quickly. Lord, grant it.
In the mean time, squeeze lemons into water and drink that as much as you can all day. Both will help cleanse your body of the germs that are being killed by the meds. That is part of what makes you feel so horrible when you are treating lyme disease.
My now famous lyme doc told me to eat 4 lemons a day, in fact.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Sent a private message
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
I am seeking a doctor in Northern Colorado. My 14 month old has a round target rash on her arm and her blood was test yesterday and it came back negative but I am not convinced even though Lyme disease is rare in Colorado. Can I request to get her put on Antibotics anyway?
Posts: 4 | From Colorado | Registered: Aug 2009
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posted
I am seeking a doctor to diagnose Lyme Disease in Northern Colorado. Please send me an email because I may not be logged in that often. Thank you so much! My 14 month old has a round target rash on her arm and another one staring on her wrist. She had a blood test yesterday but came back negative. We were in the Rocky Mountains near Estes Park last Saturday and spent some time near the river. This rash popped up a few days ago.
Posts: 4 | From Colorado | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
amayer22, you must start a new post to get help.
Click on "Post New Topic" at the top of the page, then type your message.
When you tag onto someone else's message like this, nobody sees it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bettyg
Unregistered
posted
TO NEW PATIENTS ...
PLEASE START YOUR "OWN" POST PLEASE! **************************************
look for the small black/white box at top/bottom says NEW POST
subject: show largest city closest to you, your STATE llmd needed
if you need KIDS dr....show KIDS LLMD in ..show YOUR STATE NAME. only 15 nationwide!!!
if it's for a child...WE NEED KIDS AGE; some have age restrictions and we can serve you quicker if we know this to begin with
go to lower left hand corner and mark box to receive all replies; send!
please see my guidelines below for posting please; you'll receive my help if you follow this since i've had chronic lyme for 39.5 yrs!! very severe neuro patient
NO MORE REPLIES HERE!! START YOUR OWN! THANKS. ////////////////////////////
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