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New meds help for Babesia

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Posted 4/8/2014 1:28 PM (GMT 0)
Hello!

I met with my LLMD yesterday.  It went surprisingly well.

He wasn't mad that I had quit abx over 3 weeks ago. He said if you have persistent diarrhea or some kind of symptom that doesn't feel "normal" to quit abx immediately. 

After telling him my remaining symptoms, he did agree they all sound Babesia related.  For anyone wondering, I have pressure in my head, like my head is in a vice. I have constant air hunger and night sweats.  I have the feeling like I am walking on a rocking boat.  I also have ringing in my ears. He said these are all classic Babesia symptoms.

He is putting me on Zithromax, Malarone, and minocycline.  He said he just attended an infectious disease seminar over the weekend and they are finding that Malarone is more effective against Malaria so they are hypothesizing that it'll work better for Babesia too.

He also said Oil of Oregano was found to be very effective against malaria, so again, they are hypothesizing it could be used against Babesia too. He pretty much told me, in more fancy terms, to start really hitting the oil of oregano. I already take it sometimes but I've never stuck with it. He told me he DOES want me taking the oil of oregano along with these other abx.

So I am looking to hear about everyone's experience with these 3 abx. I've taken Zithromax before so I'm prepared for that. I'm terrified of the Malarone and minocycline. 

I am going on a cruise May 12. I am wondering if I should hold off starting these meds until after? The way I feel right now, I would be fine on the cruise. I'm just worried I'm going to go downhill on these new meds and just suffer through the cruise. I'm also worried I'll start going downhill by then if I don't get back on meds.

So, I'd like to hear the good, the bad, and the ugly about these abx.

Thanks!

Posted 4/8/2014 1:57 PM (GMT 0)
Hi there Elleon,

I too stopped my abx for awhile, I was just feeling so worn down that I couldn't stand it. I have a phone call scheduled this afternoon with my LLMD and plan on talking with him.

I've been on all but the Malarone. The only bad thing I noticed with the Minocycline was extreme dizziness when I first started it, it only lasted about a week or so, and it seemed to go away. So if I were you and you are worried about it, I would start it ASAP to get the dizziness over. However, everyone experiences different things with each medication.
Posted 4/8/2014 2:02 PM (GMT 0)
Thanks MrsPallas,

I had the same thinking you did.. just start it and get it over with. Let the herx start and hopefully it'll be manageable by the time I leave for my cruise.

I was also wondering, this question is for anyone...do you guys keep using the same pharmacy for your meds? I usually use Target pharmacy to fill mine. The pharmacist last time I filled Zith and Ceftin mentioned strong and powerful these meds are, like he was curious why I was taking them.

I was wondering should I get my new meds filled at a different pharmacy or stick with the people who know me? I don't want anyone getting suspicious of my doc.

Because what is Malarone used for besides malaria/babesia? I am terrified someone will question me why I am getting that med filled.
Posted 4/8/2014 2:23 PM (GMT 0)
I always use CVS, I've never been questions and no one has ever commented. It isn't their right to know the diagnosis or what you're being treated for. If they make you feel uncomfortable then switch. I don't think it's the pharmacies we have to worry about, it's the insurance companies reporting our docs!

I make sure that I'm getting the generic of meds, sometimes the cost is less than my copay anyways, so I don't have them run it through the insurance, I think this might help with hiding stuff from the evil Aetna!

P.S. Can I go with you on the cruise?!?!?!?! cool turn tongue yeah
Posted 4/8/2014 3:09 PM (GMT 0)
So I haven't used any of these antibiotics before but I'm really happy to hear your appointment went well!

@Elleon, I also got looks when I went to get my meds filled. I would stick with one pharmacy as long as they are good.

At the end of the year you can go to the pharmacy and request a printout of all your expenses the last year for medication - I do know that target does that at least so I would imagine most others do it as well.

~beth
Posted 4/8/2014 3:23 PM (GMT 0)
Thanks opugirl!

I just looked at the side effects for minocycline. I shouldn't have done that. One of them is that is can cause permanent loss of vision especially in people with intracranial hypertension. How do I know if I have that? Now I am terrified!
Posted 4/8/2014 4:36 PM (GMT 0)
I feel like I can't bring myself to take the mino. I'm so scared.

Can I take the zith and Malarone and will that treat Babs or do I need the mino?

Honestly, I don't want to take any of them. I feel much better on herbals.
Posted 4/8/2014 5:04 PM (GMT 0)
Our 12 yo daughter did very well with both minocycline and malarone. The LLMD took her off mino 1 week before a vacation to Florida (to decrease the probability of sun sensitivity) though, so something to keep in mind for your cruise. She stayed on malarone.

Our daughter's response to malarone was our first indication that she might have some sort of protozoan involvement. She had no symptoms of babesia at all, only bartonella. Her babs tests were all negative. All through her life daughter had been fidgety. Always restless and moving. Mind always jumping from one thing to another, unable to really concentrate. Jumped around through books, unable to read a story from start to finish.

Within an hour of her first dose of malarone she was quiet. I remember because I was driving her to dance class and I looked at her in the back seat and she was calm. Not picking her fingers, not jumping her legs, not fixing her clothes - she was just looking out the window. It was all so very different.

After about 5 months of malarone she was able to concentrate in class enough to understand new math concepts on her own, without me having to home review (what a relief that was).

After we completed abx treatment and moved on to herbals I concentrated our efforts on Buhner's bartonella protocol. That took us from Apr '13 to Nov '13. Throughout the summer she had become a little restless again, but you don't really notice these things while kids are busy.

Although she was doing really well, in Nov I decided to try cryptolepis in the combo CSA (cryptolepis / sida / alchornea) tincture. Once again the effect was almost instantaneous. Calm, organized.

I knew then I was on to something, so I slowly increased dosages to see what would happen. At 15 drops 3x daily she started herxing with babs symptoms (head/chest pressure, air hunger, sighing. dry cough). Symptoms she had never experienced before. If I hadn't been aware of babsesia symptoms from reading this forum, I wouldn't have realized what was going on.

So I dropped her dosage to 10 drops 2x daily for 4 months. 1 month ago I increased to 15 drops 2x daily. 1 week later her teacher called just to say how well our daughter is doing in school. That all of a sudden she is grasping concepts that most other kids in the class are having trouble with. It was amazing!

We use oil of oregano daily. Perhaps that has been helping as well. One thing I did find that also causes babesia herx reactions is Black Walnut Hull (we use Nature'sWay capsules). 500 mg twice daily will provoke symptoms, 500 mg once daily is OK. This is along with all the other herbs.

Because we are Canadian I always had prescriptions filled online through CanadaDrugs.com (they would fill NY prescriptions for me). They were always very helpful and never once questioned my requests for many, many abx. So perhaps if you start getting flack from Target, you could try a reputable online pharmacy.
Posted 4/8/2014 5:18 PM (GMT 0)
rowingmom,

Thanks for all the great info! Ever since I got my tick bite, I have been fidgety. I was never like that. I constantly have to have my leg shaking or my foot tapping or something. I didn't know why but maybe it IS the babesia.

I don't have trouble concentrating though and can read a full book in a day. In fact, it's pretty much all I do now after work. Just lay in bed and read.

I am up to 40 drops of CSA though and although herxing slightly and some improvement in symptoms, it doesn't seem too powerful for me. Your daughters story with the malarone though makes me think about taking it. Maybe I will just take that with the zith for a while.

I am going to go out and buy some of that Black Walnut Hull as I've heard good things about it. I work next to a natural/holistic store so unfortunately I spend a lot of money there. lol.

I am definitely going to step up my usage of Oil of oregano. Here's a side story...my mother in law was taking that for some reason, I forget. However, she used to have two big moles on her face. She routinely gets them looked at and they are no cause for concern. After some time of taking the oil of oregano, the moles went away and never came back. That's some pretty strong stuff!
Posted 4/8/2014 5:59 PM (GMT 0)
Oregano oil is definitely a hard-hitter. I tried it in tablet form called ADP and it definitely made me herx but had to stop as it eventually gave me GI issues. I was too thinking about trying the black walnut for Babs. One thing that hit me like a ton of bricks was monolaurin. I'm not sure what infection it hit but it hit my chest and back muscles so hard I had to stop. I tried it again slowly but just couldn't tolerate it. I think it may hit Babs because the first time I tried it I felt fluey which I attribute to Babesia.
Posted 4/8/2014 6:08 PM (GMT 0)
Hi Elleon, are you really afraid of the minocycline? I have found minocycline to be relatively mild antibiotic compared to all the other ones I have taken and has probably been the most tolerable overall. I think it was just starting the medication where I had the most amount of side effects from it. You could gradually build your way upto dose perhaps, take 50 mg twice daily at first, and then slowly increase it from there. That is just a suggestion. Definitely take away from dairy and try and avoid sun exposure. I got a few new moles that popped up which I strongly believe is from minocycline which I didn't even have before.

Now that I am adjusted to the medication it's just like taking another pill. But who knows maybe I am having side effects from it that I don't know about! Sometimes it's hard to tell if it's the Lyme causing the symptoms, the co-infections, the toxins from die-off reactions, or the medications themselves! They are all causing symptoms actually.
Posted 4/8/2014 6:09 PM (GMT 0)
Hmm ToddPaul, that is interesting. I have monolauren at home. I took it for a few weeks but at very small doses. What kind of dose did you take?
Posted 4/8/2014 6:16 PM (GMT 0)
I was taking 4-5 caps daily (1200-1500mg.) It hit me by the third or fourth day. I tried it again to make sure it was that and it was. A friend of mine with Lyme takes it daily with no problem but it seems most will herx from all the posts I've seen.
Posted 4/8/2014 6:26 PM (GMT 0)
Omg, lol I only got up to 10 little blobs of it. Guess that wasn't enough. I started out with one and then added one each day. I took that twice a day.

I'm definitely going to start taking it again if you think it hit Babs.
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