I am the father of a almost 16 year old young women. She had been diagnosed as having Lyme disease about five years ago. My wife keeps a detailed diary. If my daughter would have been treated properly for the correct amount of time when she first tested positive, I'm sure I would not be here today. After much ignorance and educating of ourselves through the internet and calling people, we got in touch with an excellant Dr on the east coast. He saved her life. She has been treated with IV Doxy which was the turnaround for her. After two allegic reactions to IV Rocephin and Merpenum, she finally was able to tolerate IV Doxy. It brought her around. She was on IV therapy for about 4 months. Followed by oral amoxicillan and Zithromax and Acidolphilus. For the past 1 1/2 yrs now it seems, she is on Zithro & Minocycline & acidolphilus. Two rounds of Blood tests were inconclusive over a period of 6 months. She has tried twice to stop the Zithromax only to have relapses. The Lyme Dr has checked for co-infections. My concerns are that the Zithromax may not be affective anymore. Given the allergic reation she had on the Rocephin/Merpenum, the Dr has not givin her Biaxin which she tolerated orally before the IV injections. Does anyone have any similar experiences like this and what changes did you try or were prescribed? Also, can anyone refer us to a good Lyme Dr in Wisconsin? After 9/11, we have rejected flying to the east coast. Fortunately, our family pediatrician has been cooperating with our Lyme Dr out east, but we would like to consult with others. One treatment as I have learned may not work for the next. Our daughter may be one of the exceptions that needs different approaches. Presently she is back on oral meds after a month off followed by a relapse. As I said she has been dealing with Lyme and treatment for about 5 years. Looking for suggestions.
Russ

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russ

First, zith did reach a plateau, so I switched to ketek, the next generation of zith, and have had terrific results. It also gets rid of mycoplasma, supposedly.

Second, I've found mino to be an excellent abx, and found it failed with me because I had babs, and possibly bart. Thanks to some Lymenet suggestions, I tried artemisinin before bothering the LLMD, just to see if it worked. There was an immediate herx, so I was quickly able to convince the LLMD of the babs problem.

As you have probably seen by now, there is a big discussion brewing on Lymenet about this issue, because rumor has it that at a recent LLMD conference a number of doctors declared their usual babs treatments to be obsolete. You might want to research this one before making a decision.

My first thought was treating for co-infections..especailly Babesia..which Liz has already suggested.
I didn't really see a turnaround in treatment for myself until I was treated for Babs..

Below is a link to a list of must-read information and other useful links. There's a lot in the new members link, but don't be daunted -- it's good info that you'll need to know. This is a long battle with a lot of strange twists to it.

I was concerned when you said the Doc had "checked for coinfections". Testing is notoriously unreliable, and coinfections MUST NOT be excluded on bloodwork alone. The very good LLMDs treat symptomatically. Treating for babs and bart, which we both tested negative for, has made the world of difference for us.

Links for new members

Success Stories

Seeking a DoctorYou might also want to check out Orion's post about her use of ozone sauna in treating her teenage daughter. Ozone Sauna

BTW, it is very common to need to switch through a variety of abx combos to treat LD and the coinfections. Doing a trial run with artemisinin is a great idea; we did it as well and it helped confirm the babesia dx in the absence of positive bloodwork

Also be sure to treat for yeast.

Neither my son now 16 or I tested positve for Babs, our LLMD believes everyone needs a course of mepron. It is broad spectrum and as he said would clean us out. We have made significant progress since mepron.

We have also had lyme about 5 years with poor treatment until 18 months ago. We have been on abx since then. It takes a long time to get well.

We are well enough now to exercise and do 15-20 minutes before a soak in the hot tub.

Mel

What city was the LLMD in that treated your daughter?

Has your pediatrician checked with the Lyme Pediatrician in New Haven, CT?
Dr Charles Ray Jones
Phone: 203 - 772 - 1123

I highly recommend you consider taking her to Dr Jones for an evaluation.
We have made 3 trips to New Haven for my 12 yr old grandson to be treated by Dr Jones.
He's wonderful!

Go to www.wildernetwork.org/LDpediatricfund.html
Read "Children of LD" written by Dr Jones.

He has treated 6,000-7,000 children who've had Lyme. He has found that many of them have co-infections.

We don't give names of Lyme drs here unless they've given permission. Dr Jones has.

On another topic -
Some people on LymeNet have serious vision problems. They find it very difficult to read long paragraphs.

You may get more responses if you "Edit" to add a space every 4 to 6 lines. At the top of your post, click the little pencil on the right & you can make changes.

Don't know your daughter's symptoms, but the symptoms for most Tick-Borne Diseases (TBDs) overlap, making it difficult to know what diseases are present.

Like others, I kept relapsing before I was diagnosed with Babesiosis & Bartonella.
The Zithromax would seem to have everything under control, then after a while, symptoms were back.

Two reputable labs did not find Babesia for me, but Bowen Lab in Florida found it in my red blood cells. My symptoms had been so mild & so subtle, I never suspected I had Babesiosis.

Same with Medical Diag Lab in NJ finding I had Bartonella. Again, symptoms were so subtle I didn't think I had Bart.

After treating both of these co-infections, I have been off antibiotics for 18 months.
Treatment for both lasted for months.
Thirty days won't do it in most chronic cases.

Print "Diag Hints & Treat Guidelines..." at www.ilads.org/burrascano_1102.html
It's about 32 pages of excellent info.
Pages 4 & 17: read about "Co-Infections".

For concise paragraphs on "Co-Infections" http://flash.lymenet.org/ubb/Forum1/HTML/021366.html

I had a long interruption in typing this response, so I could be repeating what others have said.