posted
Hello , I decided to come here from another forum because I believe I will like this format so much more.
There seems to be alot of knowledge here.
I have Lyme and my daughter has L yme contracted congenitally. She is only 23 months.
I have been on doxy for about 5 months with small change. just added Clarithromycin which helped the fatigue but not the pain so far.
I believe i have coinfections particularly bart. My feet have begun hurting terribly in the morning.
They will be tight and painful as if the tendons tighten up then when you place your foot on the ground to put weight on it it does not spread out because the tendons are tightened.
Then the pain is in the tissues also. My ribs have cramping also.
I hope to meet mothers or fathers who have experienced treating a young child.
This will begin for her soon and I need to play a part on choosing what is appropriate.
So hello everyone !!! I will begin participating now. See u soon!
Sincerely, Veronica P.S I didn't mean to post my full name, but now i dont know how to change it.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Veronica and WELCOME,
I am sure our BettyG will be along a little later with her newbie package. There are lots of caring and compassionate people on this forum, so just feel free to post and ask what you need to know,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Hi Veronica. Welcome to the mix.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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bettyg
Unregistered
posted
welcome veronica,
go to top of this forum, left corner and click on LOU B, moderator.
click on send him a private message and ask that your last name be removed or show B only after your 1st name.
once you sign on; 1 NAME ALLOWED ONLY. he's pretty accommodating within reason ok
please edit your post and break it up into MANY, SHORT paragraphs and DOUBLE SPACE BETWEEN EACH PARAGRAPH for us severely neuro lyme folks so we may read and comprehend what was typed.
please use my guidelines below to edit; we thank you so much hugs/kisses
sorry to read about yoru toddler as well....
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
posted
Hi Veronica...I grew up in Garfield Hts., Ohio for 50 yrs. My husband and I retired here to Paris, Tn. to get out of the cold winters. He retired from the Cleveland Police Dept. as head of the detective bureau in 2002.
I was dx'd with Lyme in April of last yr.
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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posted
Veronica, something just happened with my computer, sorry......Have to have hubby help me....DUH> Just wanted to say hi and wanted you to know I am from your neck of the woods.
There is so much info here and wonderful people who will help you. It was a Godsend for me.
I can't beleieve I can't work my computer. Sheesh. Uhhh....I'm compassionate but not too P.C. savy.....
Glad you found this forum. It's pulled me from some dark places to places of hope and even laughter.
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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posted
Veronica, something just happened with my computer, sorry......Have to have hubby help me....DUH> Just wanted to say hi and wanted you to know I am from your neck of the woods.
There is so much info here and wonderful people who will help you. It was a Godsend for me.
I can't beleieve I can't work my computer. Sheesh. Uhhh....I'm compassionate but not too P.C. savy.....
Glad you found this forum. It's pulled me from some dark places to places of hope and even laughter.
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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posted
Hi Veronica , Glad you found Lyme Net And from a fellow Ohio'in , Welcome
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi Veronica,
There are several here who have small children who they are treating, two that come to mind are Tick Battler and......2roads. You may want to PM them, or change your post title to: Parents treating small children for more response from the appropriate people.
Welcome!
Posts: 3975 | From usa | Registered: Aug 2007
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Veronica Baragona
Unregistered
posted
Hi Zebco, Thats awesome ! You are lucky to gt out of the cold.
Your husband is blessed to have come out of cleveland. Hahaa.
I love this place !, it is nice to see people near me or from here.
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