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Lyme Disease
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Posted 8/3/2009 4:16 PM (GMT 0)
I tested positive to lyme via a western blot test. I was given 3 weeks of doxycycline and told I was cured. Now that I have been off the antibiotics a few weeks, I have such pain. Doc gave me prednisone but I read it makes lyme worse. SO... here is my question. I have an appt with an internist today(no lyme doc within 200 miles or so). What do I ask for? More testing for secondary infection? longer course of antibiotics? Is there a sheet of facts I can take into him to show I am not off my rocker in asking for further treatment. The pain in my knees has gotten so bad I can hardly walk. I appreciate any help you can offer.
momtomonsters. :)
Posted 8/3/2009 4:30 PM (GMT 0)
Hi momtomonsters,

Welcome to the forum!

Have you found a good Lyme Literate Medical Doctor yet? You should post your email so that members can tell you the contact info privately. You can email: [email protected] to find a Lyme Literate Doctor in your area. You can also go to: www.turnthecorner.org/bod.htm and ask for further sugestions.  

For more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.

You really need to find a Lyme Literate Doctor. These regular doctors do not know how to treat Lyme Disease. I get so upset when I see someone given only 3 weeks of antibiotics. 6 weeks or more is recommended for a new infection. If this is an older infection, 6 months or longer is
recommended or two months after symptoms have resolved.

If I were you, I would NOT take prednisone. It surpresses the immune system and let's Lyme bacteria multiply and wreck havoc on your body. Please find a LLMD even if you have to drive a few hours to see one.
Posted 8/3/2009 5:18 PM (GMT 0)
Wow--that was how I started. Got bit in April 2+ years ago. Three weeks of antibiotics. By the summer I could barely walk. If only they had left me on the antibiotics longer....

Where are you from? Perhaps someone knows of an LLMD in your area.
Posted 8/3/2009 5:21 PM (GMT 0)
I am in northern nevada

[email protected]

thanks for any help.
Posted 8/3/2009 10:33 PM (GMT 0)
Hi Momtomonsters,

sorry you have this awful disease...my husband has lyme as well and we only really got diagnosed after he had surgery in 2/08 on his right index finger for unexplained inflammation (didn't know about the lyme then)...after the surgery he got over 30 steroid injections plus multiple oral medpacs...it was the steroids that caused the lyme to explode in his body...he got increasingly worse...we have come to learn from our llmd that steroids and lyme go together like gasoline and a match...you must get to a llmd even if you have to drive 200 miles...ours sees patients from all over the world and does phone consults...good luck, will continue to follow your posts.
Carol
do not take any more steroids!
Posted 8/4/2009 1:38 AM (GMT 0)
Yes I was 3 1/2 years trying to get diagnosed until my endo gave me steroids to calm my thyroid down and WHAM everything went wild. I went to a LLMD first and did not like the guy at all. Gave me 10 minutes of his time after 3 1/2 years of suffering. I have settled (for now) for an infectious disease dr. recommended by lyme assoc. I am 4 months on antibiotic so if you can't find LLMD at least get to infectious disease. I opted to try this first since he was in my plan and LLMDs are not usually.
Posted 8/4/2009 6:56 PM (GMT 0)
I was put on a 4 week cycle of doxy and will do a second if need be. Also on Celebrex for pain. The pain right now is unbelievable.
THe doc will run labs in 2 weeks if I am not feeling better. With my husband out of work, paying out of pocket for a LLMD is out of the question right now.
I hope this works.
Thanks all
Posted 8/4/2009 7:26 PM (GMT 0)
momtomonsters, welcome to the board.

i am also on celebrex, have been for just over a yr now. it helps some or more then anything else i was given for pain. yet i still have it. while on it you need to have your liver and cholesterol checked. my Dr checks mine every 3 months. something i have found that helps the most it to take it in the middle of a meal. this way it doesn't upset my tummy at all. i take 200mg daily.

i also know it is pricey so you may want to check into programs to help pay for it. i placed a site up about a month ago for help in script programs i will see if i can find it and bump it up for ya.
Posted 8/4/2009 8:23 PM (GMT 0)
Hi mom, Welcome to the forum! I am sorry you are having to deal with all of this, but I am glad you found this forum. It's a great place to find help and support.

Here is an excerpt from a note I sent to a friend. You may find the site helpful.
http://www.ilads.org/lyme_disease/treatment_guidelines.html


This is a page on the ILADS website that shows different topics to read. Scroll down to the "Diagnostic Hints......" by Dr. Joseph Burrascano and click on the "read more". It will bring up his most recent document. On page 14, it states that 300-600 mg daily of doxy is best to aggressively start with. I have heard you should treat for 2 months when the infection is new. On the top of page 17, it states 4-6 weeks, but I know I have heard two months is "safer", with fewer relapses

Best wishes to you. bablymers mom

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