Lyme Disease Support Group

I've been so busy that I've strayed from my computer time. Here is the latest with my 14 year old. She has been on Plaquanil,Amoxi, and Biaxin for 2 months. Doc is taking her off the Biaxin and taking the above meds all together if she can stand it. She has been sick for 2.5 years now and medicating for 1.5 years. No improvement. Anxiety attacks just started, as a brand new symptom last week. They last pretty much all day, up and down. Heart rate goes up and bp.He gave her atavan, but it wipes her out, so we are lookign to natural herbs to help with this.

Any ideas or advice about taking all this stuff together. She is also taking Carafate and Axid for her stomach ulcers. Ugh, I'm surprised the phamacist hasn't reported me or someone for having her on all this medication(expensive). I'm surprised the insurance company is paying everything. Just another blessing....

Thanks.

sorry, i have no experience with these meds.

please see LYME FACTS on mercury/analagrams of teeth. read down thru the list of symptoms; see if she has many of these too.

have you read thru dr. burrascano's lyme guidelines showing the meds/dosages for kids too? it was in my welcome letter and in LYME FACTS also.

good luck; many suffer anxiety. best wishes to her and your family. hugs/kisses

That is a lot to be taking at once. Too much, in my opinion. Has she been on antibiotics the entire 1.5 years? She may be experiencing many side effects that make it seem like there is no improvement. How bad are her symptoms? Is it possible to take a break for abx for a couple weeks and start fresh?

Someone mentioned before to try Magnesium for anxiety. I know it calmed my "muscle shakies" down and many with Lyme have many vitamin and mineral deficiencies as far as I recall reading.

Also it is hard to test for magnesium, whether it is low or not. And remember, normal on lab tests is not normal for 100% of the population.

Good luck to you both. That must be so difficult for kids to deal with and you too.

A good way to test for mag def...is to get Liquid mag - take a spoonful and if you taste NOTHING - you are lacking - once you bring your levels up - it will taste TERRIBLE...

Also if you have major chocolate cravings - that is a sign of mag def...

Hmmmm...

I know that I have a list of herbs and naturals somewhere that has info on stuff to calm anxiety...for some GABA works - as it is over all nerve settling...or calming effect...

I just cant think of others off the top of my head...sorry...will try to find that list today...

Christine

My LLMD said the same thing about magnesium...he told me to switch to magnesium malate (was taking mag oxide) bc it will help me more...he said it is easier on the bowels and is better for counteracting malabsorption.

Good advice with the liquid mag., christine! I am really amazed all the time at how willing everyone here is to help each other! <3

Yep, magnesium malate is SO much better. I tried the other forms and finally settled on the malate. I've tried the liquid mag. also and it's true. I tasted virtually nothing!

She has been on different antibiotics over the course of the year and a half. She did just take some time off of all the herbs in Early December, then developed a major ulcer pain, so she was on Carafate 4x per day with nothing else. We gave her stomach a rest till Early January and started slowly to get on the protocol she is on now, which was 3 antibiotics to hit all forms of Lyme. So tomorrow we are going to start this new protocol, which is stopping the Biaxin(she is currently on Biaxin,Plaquanil,Amoxi) and addding the others. He admits he hasn't treated many patients with all 3 antibiotics and not many at all with this 4 combo(if any) He said if it is too much to drop the amoxi. She has taken maybe 1 or two at a time, and done bicillin injections for a month. If we could get insurance to pay for the IV, that would be much better on her stomach by far.

I had stopped giving her magnesium a while back, but I'm adding it back in tomorrow. I don't have the malate, but will get it. She loves chocolate and says it makes her feel better(who doesn't).

She has a huge list of herbs. She takes 41 pills a day. I know there are a lot of side effects and I can't tell what is what. Her immunity is down, so I think the supplements are helping her. I think she is getting what she needs, but I could be wrong. I'm learning as we go.

Becky

If she is getting better, far be it from me to say that she should stop taking anything. From a medical standpoint, you can only absorb so much at one time. So if she is not improving, this may be part of the problem. If the body is overwhelmed with side effects and extra substances, it will not get better.

I hope this new combo of abx helps her

I agree, she takes too much. I just don't know how to fix it. I've thought of going to a specialist(herbalist or something) to look at her whole protocol and tell us what we really need and what we could do without. She just started loosing weight in December. She lost a little when they said she was lactose intolerant and switched off milk and other stuff. That was a few months before December. Then she really started loosing weight and is at a total 40 pound lost right now. SHE does eat and it drinking a supplement drink of additional 350 calories at least once a day. She is holding for the last 4 weeks. We checked her Tyroid TSH and just did the freeT3 and T4 yesterday.The regular TSH was normal. There is just so much going on with her. I'm following what the LLMD wants her on, and at what point do you just call it madness. She just had surgery for pilonidal cyst in January too.

Anyway, I appreciate any advice and I know it is constructive.

Becky