posted
My 2 and 3 year old tested positive for Lyme, Babesia and Ehrlicia (I have Lyme). We were all at a summer camp in New York this past summer. Though they have some muscle complaints, they are not symptomatic for the co-infections. I am terrified with all of the conflicting information and have so many questions and don't know where to turn. I hope someone can help. If not, can you forward my email to ANYONE who you may thing may be able to help? Here are the questions: 1) I am trying to find a pediatric Lyme Specialist. I live in Los Angeles, but will happily travel to the east coast. 1.5) Is there such a thing as an Infectious Disease Specialists who supports the use of Mepron in children? 2) Do you know how I can find the phone number for Dr. Charles Ray Jones? Is he still taking new patients? 3) I am looking for info on giving Mepron to kids as young as mine (age 2 and 3). One of my docs wants me to wait three months and then test again as he said it may resolve on its own. Scared either way. 4) I know Mepron can be hard to take, but what SERIOUS damage can it do to my kids. I need to weigh the risks of taking with the risks of not taking. SO many docs are telling me it is too dangerous to give them Mepron so young. 5) Is there serious risk in waiting before treating the co-infections? My kids have been on Zithromax and Amox. for one month for the Lyme, but nothing for the co-infections. 6) My 3.5 year old is losing her ability to pronounce her "s" sound. Has anyone heard of this? If it's possible to email me directly at my email address that would be great. Thank you so very much, From a terrified mom, Beth in LA
[ 21. November 2008, 01:46 PM: Message edited by: rami ]
Posts: 22 | From Los Angeles | Registered: Nov 2008
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bettyg
Unregistered
posted
It is sometimes difficult for us to comprehend large blocks of text, and because I wanted you to get more answers, I broke this one up for you. Please do this in the future ok. thanks
quote:Originally posted by rami:
My 2 and 3 year old tested positive for Lyme, Babesia and Ehrlicia (I have Lyme).
We were all at a summer camp in New York this past summer.
Though they have some muscle complaints, they are not symptomatic for the co-infections.
I am terrified with all of the conflicting information and have so many questions and don't know where to turn. I hope someone can help.
If not, can you forward my email to ANYONE who you may thing may be able to help? Here are the questions:
1) I am trying to find a pediatric Lyme Specialist. I live in Los Angeles, but will happily travel to the east coast.
CHECK YOUR PROFILE FOR CALIF. NAME!! PLUS DR. JONES INFO! betty
1.5) Is there such a thing as an Infectious Disease Specialists who supports the use of Mepron in children?
STAY AWAY FROM INFECTIOUS DRS. who don't believe in chronic lyme and UNDERTREAT with less than 3 wks. of antibiotics!! bg
2) Do you know how I can find the phone number for Dr. Charles Ray Jones? Is he still taking new patients?
SEE ABOVE; YES, HE WORKS 7 DAYS A WEEK!
3) I am looking for info on giving Mepron to kids as young as mine (age 2 and 3). One of my docs wants me to wait three months and then test again as he said it may resolve on its own. Scared either way.
PRINT OFF DR. BURRASCANO'S LYME GUIDELINES BELOW, IT'S AMOXYCILLIN FOR KIDS, page 17 !!
4) I know Mepron can be hard to take, but what SERIOUS damage can it do to my kids.
I need to weigh the risks of taking with the risks of not taking. SO many docs are telling me it is too dangerous to give them Mepron so young.
PHARMACIES PRINT OFF SIDE EFFECTS/RISKS OF EACH MED; read it thoroughly!!
5) Is there serious risk in waiting before treating the co-infections? My kids have been on Zithromax and Amox. for one month for the Lyme, but nothing for the co-infections. **********************************
NORMALLY CO-INFECTIONS ARE TREATED FIRST, but i do NOT know about kids! other parents can post their experiences on their kids.
6) My 3.5 year old is losing her ability to pronounce her "s" sound. Has anyone heard of this?
YES, speech can be effected!
If it's possible to email me directly at my email address that would be great.
Thank you so very much, From a terrified mom, Beth
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
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.
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Yes Dr Jones is still taking new patients, my son just saw him for the first time last week, but there is a good three month wait, so do what you can in the meantime.
However I would call and get your kids an appt tomorrow. HIs phone number is 203-772-1123. A lot of times you will get the answering service, tell them you need to make an appt ASAP and you will get a call back shortly.
Join us at www.lymefriends.com. There are two members I know of whom I believe had very young children on Mepron, JohnnyB and Sarah O. Write to them.
Good luck, I hope this helps get the ball moving for you.
BTW, usually we dont' post full doctor names or phone numbers here but the rule doesn't really apply to Dr. Jones, since he is very public and out there anyway.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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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.![[Wink]](wink.gif)
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.
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