This is topic Just dx'd after 16yrs. in forum General Support at LymeNet Flash.

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Posted by Caren NV (Member # 37791) on :
I'd love to hear from anybody who has started treatment this late in the game. I took my 1st doses of antibiotics for Lyme tonight. From what I've read it looks like the 1st few mos. can be brutal.
Posted by BoxerMom (Member # 25251) on :
Uh-oh. My first few YEARS were brutal.

Bitten in 1990. Diagnosed in 2008. I've been treating ever since. Doing well but still on antibiotics.

Do you have a good ILADS trained doc? Were you tested for co-infections and opportunistic infections?

You will need treatment for ALL of your tick-borne infections. Maybe some others, too.

Read some of the stickies over in Medical Questions. That's a good place to start.

Diagnosis is the best thing that can happen to you. Treatment is a long, hard road, but you can recover your health.

Welcome and good luck!
Posted by Keebler (Member # 12673) on :

Posted by Caren NV (Member # 37791) on :
Thanks Boxermom and Keebler. I've been on listserves and forums, this board method is new to me. Yrs. does not sound encouraging:^/, but what to do other than carry on? Glad you're feeling better than you had at 1st.

The Dr. I'm seeing has a chapter in a well regarded book "Insights into Lyme Disease", I guess that would make her Lyme proficient. She's certainly a better medical detective than I've ever had (all over the country!!!). She's turned up all sorts of things when I was just trying to solve Adrenal Fatigue:^D

Did Merc. detox in '89 which got me out of a wheelchair. Dx'd w/Fibro in '00, been on Guai protocol which did help somewhat, but never as much as it helped others. Sick since '80 on and off (great while pregnant twice- fell apart both x's after).
Posted by Lymetoo (Member # 743) on :
MANY on this board were diagnosed 20 yrs or more after initial infection. It took 42 yrs for me to be dxd. Got well in 4. Been off abx for 8 yrs now!

With the right doctor, you can do it!!

Go "low and slow" due to your high bacterial load.
Posted by Robin123 (Member # 9197) on :
My response to treatments always has depended on what they are. After being found after 25 years undiagnosed, I had a wonderful response to oral clindamycin right away - took away all the pain. I herxed after a month and then dropped back in dosage.

I think there are gentler, supportive initial treatments, including what supplements to take. Carol in PA has good advice here for people who are starting out - basic supplements to start with. See her advice to Derk D recently in General Support, re a post about treating himself.
Posted by Caren NV (Member # 37791) on :
@Lymetoo and @Robin, thanks for the advice. What is "low" for Doxy and Mino? I was so sick yesterday that I vowed to give myself a day off today if I was that bad today, but I wasn't, so I'm gonna stick w/it unless I hafta "say Uncle"! I'm on 100mg of ea. bid.

My Dr. did say I could take a day off if it was too much.

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