posted
I am a 29 year old mother of 2 boys ages 7 and 10. I've been sick off and on since I was 15.
That is when I had flu-like symtoms, extreme fautigue and body aches. Everything got worse after each birth and finally in 2005 I was completely wiped out. I had 90% of the symtoms listed under nuero lyme.
All of my test came back normal-blood, MRI, gastro etc.I had done a lot of research online and found Lyme, however my doctors refused to test. Even after I told them I had multiple tick bites as a child living in Santa Cruz I was out doors, camping, hiking and bike riding constantly.
After months of tests and doctors telling me I was crazy I still had no answers.
Last year-2010 it became so bad I could not work or function. That is when I deciding to seek my own answers. I went to a Fautigue Center here in CA. where they treat CFS, Lyme and other immune issues.
At first he diagnoised me for CFS due to the tests coming back with high exposure to HHV-6, Mycoplasma and EBV. After my second visit he tested for Lyme through Igenex (extremely costly-insurance didn't pay). It came back positive the end of Feb. 2011- Igenex-5 bands, however I needed one more certain band for CDC to recognize.
He started me on Zithromax and Cefuroxime, which I have been taking for almost 2 months with little improvement.
My main question is related to my boys. After finally getting diagnoised I started going back through their medical history.
My oldest (now 10) came out purple and I didn't get to see him for the first few hours because they were running tests. I was so young I didn't know what could possibly be wrong and did not know I had Lyme at the time. He's cried since birth, constant ear infections and restlessness. Over the years he has had Strep many times. He still wets the bed and walks funny; he says his legs hurt. He has nightly stomach aches and headaches. His eyes hurt and he is moody. I want to take him to a Lyme specialist for children, but do not know where to start. Everyone in my family thinks I'm crazy and theres no way I could have passed it?
My younger son (now 7) was born fine, however he became ill a few months after birth and continued to have problems over the years. He has swollen glands-constantly, really bad asthma, allergies,a little OCD and has had pneumonia 4 times during a 2-year period.
I don't know if I am paranoid or if I should be concerned. I've always had a gut feeling something was wrong, but was told I was crazy.
If anyone knows of any resources for children, or doctors in CA. I would greatly appreciate it. Their doctor is old fashion and my new doctor does not treat Lyme in kids and seems to specialize in CFS rather than Lyme.
Thank you for any help you can give, Lauren
-------------------- Lauren777 Posts: 32 | From Stockton, CA | Registered: Mar 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I would suggest having your son tested for Strep in the blood. This is not a swab of the throat but a blood test. Strep in the blood is just as difficult to treat as Lyme but most of the medicines that treat Lyme will also treat Strep.
I'll PM you about a doctor. Also, post in seeking doctor.
Posts: 2232 | From USA | Registered: Aug 2009
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I agree with Haley.
The tests are called ASO titers and Anti-D-Nase B.
Please also have him tested for mycoplasma pneumonia.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Pming you.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You ALL need to see a very good LLMD! It's so sad to still constantly hear stories like yours. It's so preventable. Except the ignorance and worse about Lyme is astounding.
Please get help as soon as you can figure out who is best to see all of you (might be different drs, due to pediatrician and not). Keep coming here for info and support---there's lots of both here.
Posts: 3771 | From around | Registered: Mar 2008
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