LymeNet Flash: Babs & Bart testing & meds to take.

This is topic Babs & Bart testing & meds to take. in forum Medical Questions at LymeNet Flash.

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https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/32864

Posted by bg (Member # 46416) on :

Hi all! I need your help on this one.

I've been on 2 PULSED antibiotics:

doxy & biaxin for 8 months of 3 days on one & then 2 days off then starting 2nd meg,

7 months on benicar now 40 mg/day;

2 months of diflucan now 100 mg daily;

lyprinol, anti-inflammatory 2 daily just started

Trental, anti-inflammatory starting in 1 wk.

Ive never been tested for co-infections & suggested this to my LLMD last wk. He'll test for Bart & Babs.

I waited for him to return my call; he didn't. Finally got ahold of him today & he said I did NOT need to be tested for these 2 co-infections "since I was taking the SAME meds that would be given for them".
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Is this correct? I have no knowledge on this & need your help from with co-infections.

Were you tested later on like I plan to do?

I'm not making any improvements at all although I've been sick for 34 years & just dx 7-04. Your thoughts please & THANKS!

Betty G., Iowa

Posted by Lymeblue (Member # 6897) on :

Find another Dr.
Babs is treated with mepron + macrolide only or clyndamicyn +quinine.
Bart with bactrim or levaquin.
Doxy helps you only with ehrlichia and biaxin with lyme.
Are you sure he is a truly LLMD??

Posted by aliyalex (Member # 6976) on :

My LLMD said the same thing in Missouri. I asked to be tested for co-infections and he said the treatment was the same. I wonder if the testing is inconcusive or something. Seems to me if you test negative and it is accurrate, maybe there are some abx you can skip? What to you all think?

Posted by lymster (Member # 5964) on :

Hey Betty:

I totally agree with limeblue, find another doctor.

Bartonella - levaquin, rifampin, bactrim

Babs - Mepron+ zithro (or another macrolide)+artemesia or clyndamicine + quinine

It is really imposible to improve if co-infections are not treated, it made the whole diference for me.

Best of luck,
lymster

Posted by liz28 on :

I'm having a rough time with this one, too, and also heard the same line from a doctor.

The treatments I read about on Lymenet that did help were:

Babs: artemisinin/ketek/mepron 10ml/2x day for at least 7-12 months.

Bart: rifampin/zithromax (or ketek)

I tried levaquin with doxy for a while, and the side effects were too much. It did get rid of the bart symptoms temporarily.

Posted by riversinger (Member # 4851) on :

Betty,

I've wondered all along whether your doctor was a LLMD. He is "Sorta" doing the Marshall Protocol, but not really. He is pulsing antibiotics that are not usually pulsed, and in a very unusual way.

Now he obviously does not know what is used to treat babesia or bartonella. It sounds to me like he has "heard of" Lyme and coinfections, but has not really educated himself about them.

Not every doctor who has heard of Lyme is an LLMD. That means Lyme Literate MD. In other words, someone who is knowledgeable, and well versed in how to treat.

It really doesn't sound like your doctor is. Sometimes that is acceptable, if they are nearby, and willing to learn. But it puts the burden on you to know what to do.

It really sounds like you might be better off with someone else. Have you considered traveling to see Dr. C? It seems like you are sick enough that you need a really good doctor.

Otherwise you are wasting your time and your money.

Best wishes.

------------------
Sonoma County Lyme Support
[email protected]

Posted by bg (Member # 46416) on :

Thank you ALL for your replies especially showing the meds for BART & BABS to me.....

My MD is learning how to be lyme literate. Last May+, he began seeing lyme patients to a total of 20 MAX; ONE per week! We have a handful of 4 other drs. taking 20 folks also for 100 Iowans getting help.

Some of you may know online Dr. Scott Taylor of former I&I yahoo group with Peny; he was 1 of 3 people meeting with Dr. as well as the local 2 support group leaders.

Scott has been training him; and many of the ideas come from Scott & his background of being a veterinarian as well as a nutrionist salesman.

I can NOT travel at all; I can go is 30 miles. I have so much total body pain as well as my hubby who has "essential tremors" ... non-stop jerking of the hands, feet, & legs. So a trip to Dr. C in Missouri is out of the question.

Under normal circumstances, that would be a 10-hr. trip; with my going to the bathroom all the time & stretching would add another 2-3 hrs.

I was 1st referred to an area infectious dr. but heard bad things about him so didn't see him.

My LLMD? discussed the Barb & Babs testing with a Des Moines infectious dr. who handles lyme folks. LLMD actually said he talked to several drs. & didn't mention the other person's name.

Iowa does NOT have a full-time lyme specialist seeing only lyme folks. We have these infectious drs. that NO ONE has been pleased with and gotten any good results.

I'm learning from you folks, Cheryl's www.lymeinfo.net site, and a little from the MP site.

Yes, my abx started were similiar to the MP, but hubby refused to let me go on this experimental treatment program so this is what Dr. Scott & 3 lyme support group leaders & my LLMD came up with.

Thank you each for your honesty of your opinions.

I will get tested for barb & babs.

bettyg

Posted by patdetweiler (Member # 7030) on :

Bettyg- My LLMD is in NJ and she is past president of ILADS (International Lyme and Associated Diseases). On my first visit she tested me for co-infections at MDL lab in NJ. They have a website (mdlab.com) and will mail you a kit to collect blood and ship back to them. Test #420 is a comprehensive tick borne disease panel. Their phone is 877-269-0090. My Babesia titer was positive as was my Lyme Western Blot. My treatment for Babesia microti was 250 mg of Zithromax twice a day-one dose with breakfast and one dose with dinner. Also, I took Mepron, one teaspoon (which is 750mg) with lunch. I did this for 6 weeks. My Babesia titer fell into the negative range. Now I'm on Ketek for Lyme, 400mg/day, it's only one pill in the morning. I have been sick for 20 yrs. I am getting better but it's slow. Pat

Posted by bg (Member # 46416) on :

Pat or anyone else,

Pat, thanks for all the good info you provided me! I appreciate your time giving me all the details.

They test for Babsesia but do they do Bart too? I thought I read on this board in last 2 days that MDL does NOT test for Bart.
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Thanks. Bettyg

Posted by valymemom (Member # 7076) on :

My son did not test positive for Babesiosis but he had the constant headache and extreme fatigue for years. (has other symptoms.....these were first with the muscle/tendon pain)

His doctor suggested he do the herb artemisinin to see what kind of reaction he would get.....

She used that herx to put him on mepron and he will be adding another med, I hope, soon.

The posts here have said not to only use mepron for babs.

Might your doctor consider that?