LymeNet Flash: Newbie - Questions...

This is topic Newbie - Questions... in forum Medical Questions at LymeNet Flash.

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Posted by Lymied (Member # 6704) on :

Hi All - I just started treatment for lyme, babesia, and ehrlichia November 1, 2004. The first month was Mepron and Zithromax. While I was told I shouldn't herx with the Mepron I did have a nasty migraine with aura in the second week. With in two weeks all my chest pain and palpitations went away...ahhhh! Then December was 750 mg of Zithro and 200 mg of Mino - I jumped right in with both feet and took it all at once. I did alright...I had some bad herxing days but in the third week of taking it I started seeing little purple spots when I looked at lights a certain way...as well got a bad, sour taste in my mouth (this could be yeast) Didn't get too worried because my fourth week was Flagyl only 1000mg for a week. Well on the 8th day when I was done with the flagyl week and slated to start Septra and Mino 200mg together I got a really bad migraine that kept cycling with the visual aura - I ended up in the ER. My LLMDs office said initially to take a 1 week break off of everything but after just two days all my chest pains have come back and I feel like crap...almost as bad as before I started except I am not dizzy like crazy.

SO my concerns are...

1) I was fine after the one month of mepron and the heart stuff seemed in check during the second month of treatment which was Zithro and Mino - so could it be not the Babs that is coming back but possibly that I have Bartonella? (they didn't test me for this said they would just treat me like I have it)

2) Am I in trouble with Mino since it is giving me those little purple spots in my field of vision? (I did read on another thread about mino that these are a side affect - I may try name brand instead of generic)

3) What do you all take for migraines with the visual aura? What is safe to take with all these mega loads of abx? I don't want to run to the ER everytime I am dealing with one of these migraines - this one the day before yesterday though left me projectile vomiting so I really had to go.

4) I was a bit disheartened while taking this mini break from the abxs that the symptoms were seemingly right there waiting to pounce on me. I thought I would have a break from the meds and I would feel really good since my bacterial load should be down...could it be I just hit a herx cycle?

Thanks for any input!

------------------
-Gretchen W.
"If I can stop one/Heart from breaking/I shall not live in vain/If I can ease one Life the Aching/Or cool one Pain/Or help one fainting Robin/Unto his Nest again/I Shall not live in Vain." Emily Dickinson

Posted by Lymied (Member # 6704) on :

Oops - sorry no spaces in my post to help

make it easier to read...next time...and I

have found all the newbie links so you don't

need to post them to me...just thought I

would save someone the effort. What a great

bunch of links...thanks to Tree Patrol or who

ever is responsible for putting those

together!

Posted by liz28 on :

The Master of Mino is a former Lymenet poster named TX Lyme Mom. If you do a search on her name, you'll come up with enough info for a textbook.

Posted by Lymied (Member # 6704) on :

Thanks Liz28 - I will check it out

Posted by Beverly (Member # 1271) on :

Hi Lymied,

Welcome to Lymenet. I'm glad you already found the links..lots of good information there. Sorry you have been lymied..

I guess it could be either Babs or Bart...they can be difficult to get rid of. I'm glad you will be treated even if you test negative.

I was on Minocin for a year..didn't have any purple spots...sorry this is happening to you.

I have not had too many migraines, but I think peppermint oil is supposed to help by applying it to your head., but I don't know if it works with the aura?

It could be your in a herx cycle this happens to me also, after stopping abx I get a bad headache the next day. Treatment also takes a while before you really start to feel better.
I am just now starting to feel good after being treated for Babs.

I hope you will be feeling better soon,
Beverly

[This message has been edited by Beverly (edited 05 January 2005).]

Posted by KathK (Member # 4383) on :

Gretchen,

You sound so similar to me! I treated for Babs for 5 months and started to feel really good. Then treated (after biaxin, amox, etc.) with Mino and something else.. I started to get a weird taste in my mouth and then would get a chest discomfort feeling.

I keep thinking its Babs too and may try to treat for that again.

Kathy

Posted by ConnieMc (Member # 191) on :

Also look into artemisinin. I had several rounds of Mepron/Zith and the Babs always came back. And my test was still positive after 4 rounds. But artemisinin has helped me lots and not nearly as expensive as Mepron. Get Allergy Research Group brand. I order from Organic Pharmacy. I think the site is organic-pharmacy.com, but not positive that is correct. I will be ordering more tonight and will edit this if I find it is incorrect.

Do a search on this site and you should get lots of info. Lots of people use this for Babs with good results.

Also, please realize that Babs testing is not accurate, so do not rely on a neg test to show you have beaten it. Go by symptoms. Educate yourself on the symptoms of the various coinfections and sort it out best you can. It is not always easy. My initial 2 tests were neg and as a result I went undiagnosed/untreated for a long time.

Good luck.

Posted by Lymied (Member # 6704) on :

Thanks so much! I will check it all out. I have a lyme friend who told me about the artemisin - the LLMD is not real keen on me taking it with the treatment and suggests after the treatment for maintenance but I think this is mostly because they are afraid it might skew knowing what progress I am making with the meds. My friend says it really helps her with the babs. Also my LLMD is afraid to treat people for more than a month with the Mepron but won't tell me why...think it might be toxicity. I know another lymie who used to work for Glaxo and knows a chemist and is hoping she can eek some info. out of her regarding toxicity. I have heard of many taking Mepron for months with no apparent side effects....