The other question is that she is on Doxy for Borrelia and has previously had Mepron for 3 weeks. she improved during the 3 weeks on Mepron but this was then discontinued when diagnosis of Babesia was questioned.

Will the fact that she had 3 weeks of treatment affect the result of a test? The treatment was not very recent.

Any information would be greatly appreciated because my friend has to make a decision whether to accept the terms of her ID consultant or refuse in which case he will no longer treat her Lyme or anything else.

Thanks in advance.

I was tested for Babs several years ago and tested negative. During the course of IV treatment, I was run through a couple of months of a Mepron protocol (with Clinda I think). Felt better on this. But after I came off treatment, I started feeling worse again. Had some additional treatment, but another test revealed a negative again, so we didn't really go any further with things.

Really crashed again in late 2002, and was tested again. But this time with the Igenex FISH test. Positive this time. So, treatment initiated again. Felt better. But would always relapse if treatment stopped. Stopped responding to treatment entirely, and to determine if a worsening of symptoms was Babs, we tested again. STILL positive.

So not only is the testing very unreliable, but the treatment isn't necessarily successful either. So if you throw in the chance of a false negative and unsuccessful treatment what really do you do? It is all quite complicated, not to mention that having Lyme and Babs greatly complicates the clinical picture to start with.

I am not sure if the doctor will accept the FISH test as evidence, but I am thinking that they do not. But if there is a way to clip this in, it could be that he/she has a different strain, and that is no guarantee that the doc will even accept an unapproved test.

Based on my experiences, I have no idea what I would do given similar circumstances. But just hoping my case will illustrate how complex this all really is.

I have forwarded your reply to my friend.
She has already got positive tests from other labs but this is the only way that her consultant will accept a US test. It is the same all over the UK. It is hard enough to get Lyme accepted and treated properly and most doctors consider it as a tropical disease and so rare that they think it is impossible that we have it even though the cases are growing every year.
Mention Babesia or Ehrlichia and the doctors tell us that it is impossible for us to have been infected here.

Even if you have the positive tests that they want, they come up with short durations that guarentee relapse and when you relapse they tell you it is a post infection syndrome.

I was diagnosed with Lyme 11 years ago but have only just been granted treatment for Babesia. They only accepted that because I spent my life working with exotic animals.

I am now almost 5 months into treatment for Babesia with Mepron and Zith.
I was interested in what you have said about Babesia because I was finally getting some relief from my symptoms once treatment started. I had been dependant on an oxygen clinder and improved enough to only need it when I exerted myself or when I became fatigued but now I have noticed a deterioration in my breathing again. I am assuming that it is due to the Babesia because I have not improved at all until it was treated.
I must admit I have found this relapse a bit scary because I thought I was on the up.

Still needing info on CDC serology and PCR tests for Babesia.

Any info would be very much appreciated.

Good to see you!

Looks like you are stuck between a rock and a hard place.

First of all... THIS stinks!!!

You said.. "my friend has to make a decision whether to accept the terms of her ID consultant or refuse in which case he will no longer treat her Lyme or anything else."

NOT COOL! BUTT HEAD! Let's act like we are the ALMIGHTY here. IDiot!

I just posted a babesiosis story to James H on his post.. maybe hop on over there and check that reply? It might make this one make more sense?

Sooooo.. the ALMIGHTY's terms are.. Unless the CDC does it.. you are stuck... according to them.. eh?

If you don't do it.. then no treatment anyhow. Man.. bad news.

I would think you might as well go for it.. but don't expect much.

Perhaps you would get lucky and it would be positive? But if you don't do it.. you are worse off... cause then there is nothing.

If you go for it..

My "conditions" would be..

Prior to sending it.. have the doctor (or you!) contact the CDC people .. the ones who do the actual testing.. not the secretary, blah blah blah..

Make sure they know the sample is being sent and so they know to do it immediately... so the sample doesn't "sit".

Make sure the test is done on a Monday so there is no excuse that the blood is sitting out over a weekend.

Send the copies of the other tests with the new sample.... that is a must to be a "reportable" test here.

If YOU have to do it.. contact the folks who will be air transporting the sample and have them there as the test is drawn.. try not to have blood sitting and waiting, if possible.

Another thought...

Can your friend treat themselves with Artemesia? If you need help with that.. check with Carless Dave here. He is well versed with that topic.

Would the ID duck consider Plaquenil for Lyme which may address Babesiosis?

If I think of anything else.. will let you know. Sorry for the bad situation you are in.

Hope all you all feel better soon!

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If you get the choice to sit it out or dance...

Don't know how this would be done in a national health country. Do you have such things as private travel clinics?

good to be here...just about anyway.

I read your reply to James. It worries me all the more that my friend's test will come back negative.
Do you know if Doxy treats Babs? because I have been told that it does and she has been on Doxy for 10 months so this could have a major impact on the result.

Yes our consultants do play God. All the time.

My own case is a perfact example. After fighting so long for my treatment I was supposed to have a Hickman fitted before Christmas. It was attempted under local anesthetic but the surgeon found out my veins were so scarred and small that she had major problems getting the line in. In the end the guide wire punctured the vein as it neared my heart and it put me into clinic shock.
Then she I was told that they would have to attempt again with full anesthetic which was supposed to happen just after Christmas. I have now been told that my heart and respiratory condition is now too bad for the operation to go ahead. I have been told that I probably won't make it through so that is the end of that.
I have to go for another operation attempt in 2 weeks under local anesthetic as a last try but I can't see how she will not have the same problem as last time when guiding the wire.

I told her that this was my last hope to get things under control but they still refused to let me risk the operation. It should have been my family's and my choice not theirs.

This is why I get so distressed. The doctors who are messing with the lives of my friends are sending them down the same road as I have gone. How many more do they want to end up in wheelchairs and on oxygen before they stop dictating???

Thanks for your thoughts, as always,

quote:

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Originally posted by zipzip:
in the UK you can get Proguanil Hydrochloride over the counter. proguanil is one of the two agents in malarone, the other being atovaquone (mepron).
http://www.stratford-pharmacy.co.uk/index.cfm?page=pharmacy.factsheets&sheetname=pal udrine

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Zipzip,

Somewhere I saw a quote like this.....We will get the health care treatment we deserve when we get up off our knees.

Means that when the medical establishment won't help you because they are making big mistakes with a disease, then you have to protect yourself.

You know the Barry Marshall/peptic ulcer story? It took 10 years after he discovered that the disease agent was bacterial and treatable with antibiotics, I say 10 YEARS, before the NIH concluded he was correct. And what happened to all those people with bleeding ulcers during that time? Were they obliged to just suffer and possibly die of peritonitis when the treatment was known? Most of them probably did just suffer. But if you had known this, wouldn't you have done something to get treatment, regardless of how many ignorant doctors said it was stress or spicy food?