posted
Hi. I'm new to Lymenet. My son had some funny symtpoms last summer (swollen face, rash) but they went away. Then this winter he got several bouts with swollen joints. We had him checked out immediately, and they ran him through a battery of tests for Juvenile Rhumetoidal Arthritis. We live in California (had been to the East Coast last summer), so I guess they didn't have LD on the radar. finally they diagnosed it and he has been on anti-biotics for a month.
My question and concern is: what are the risks and likelihood of long term issues (cognative, nuerological etc.) after having missed his deases for 8 months? He's 8 years old.
Thanks for any feedback.
Posts: 2 | From California | Registered: Jun 2009
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posted
Hi Rider, they should have had it on the radar in CA because it's also endemic for LD.
I have had it for 36 years ... wasn't diagnosed till three years ago. I do very well, am not on pharmaceuticals, but do take some alternative stuff. I'm pretty near 100% functional.
To do this after a late diagnosis, you have to be educated. Read s much as you can. Start out at www.ilads.org Be sure to read the Dr. B treatment guidelines.
Also, check out www.underourskin.com to see some of the political battle surrounding Lyme.
Do you take your son to an LLMD?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Wow....33 years is a late diagnosis. Do you think 8 months in an 8 year old is late? I guess any time once symptoms show (whether 3 months, 8 months, years) is considered delayed.
I'll check out the links. Thanks.
Posts: 2 | From California | Registered: Jun 2009
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posted
Hey Riff: Do you play guitar by any chance? It is most fortunate you discovered LD in your little one. No, I don't think it's too late. Be sure to have him checked out for co-infections. My LLMD says people seldom only get Lyme from ticks.
Use the most respected Lab here in California. www.igenex.com
Would also recommend you join Calif. Lyme Disease Assn. as their news letters are very informative and have many issues regarding treatment of children. Ask for back-issues when you join. www.LymeDisease.org
Watch over him because as six has mentioned - California - all parts - is endemic for Lyme. Just the MDs are slow to react - or ignorant.
Build your little ones defenses and strengthen his immunity. Most important.
Good Luck and best wishes, peedie
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
welcome riff! please copy your story and post in SEEKING DR. forum.
here are the areas to chose from for calif llmds, but ONLY 1 KIDS LLMD IN CALIF!! 15 total nationwide!
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.
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