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Long term Azithromycin or other ABX - need experience info


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I am trying to get some insight into the future ahead and would hope to hear from others whose patient has gone on long-term abx, both those who have completed treatment and those who are still doing it. I will be most interested in Mycoplasma Pneumoniae positive (preferably highly positive) cases.

Sandra (20, almost 6 years of this debilitating condition - history told here in earlier posts) has now been on Azith for almost a year. Mycoplasma IgG down in 6 months from 200 to 39 (normal=35) and symptoms are improving slowly, inch-by-inch and fluctuating. We are all on our own with our brave GP (Finland). No chance for interest by specialists and no way of getting IVIG or the like as the specialists in the system are not interested.

 

Not having specialist support on the Finnish front, I would like to get it in the international domain. Earlier this year, when we were trying to get the reluctant Finnish system to agree to IVIG in addition to the abx, I tried pooling several specialists to support our request, but as the issue died, so did the communication. In addition to information on case experience, I would also hope to get our loyal GP some specialist support, just so that she need not do this all alone on her own.

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I am trying to get some insight into the future ahead and would hope to hear from others whose patient has gone on long-term abx, both those who have completed treatment and those who are still doing it. I will be most interested in Mycoplasma Pneumoniae positive (preferably highly positive) cases.

Sandra (20, almost 6 years of this debilitating condition - history told here in earlier posts) has now been on Azith for almost a year. Mycoplasma IgG down in 6 months from 200 to 39 (normal=35) and symptoms are improving slowly, inch-by-inch and fluctuating. We are all on our own with our brave GP (Finland). No chance for interest by specialists and no way of getting IVIG or the like as the specialists in the system are not interested.

 

Not having specialist support on the Finnish front, I would like to get it in the international domain. Earlier this year, when we were trying to get the reluctant Finnish system to agree to IVIG in addition to the abx, I tried pooling several specialists to support our request, but as the issue died, so did the communication. In addition to information on case experience, I would also hope to get our loyal GP some specialist support, just so that she need not do this all alone on her own.

 

 

The Italian group of doctors (and there is a group in England as well) may be able to lend a hand on conversing with your doctors there-- You may also want to contact one of the PANDAS knowledgeable doctors in the US, to see if they would be willing to converse as well--I am sure someone on this side of the Atlantic should be willing to help--

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"The Italian group of doctors (and there is a group in England as well) may be able to lend a hand on conversing with your doctors there-- You may also want to contact one of the PANDAS knowledgeable doctors in the US, to see if they would be willing to converse as well--I am sure someone on this side of the Atlantic should be willing to help--

Thanks for the idea

Van you be more speciffic regarding those groups in Italy and the UK.

As to the US based doctors, I have tried to contact many. Of those very few who replied at the time we were trying hard to get IVIG and needed support, seemed terribly busy and not very eager to be active.

I waqs hoping to have info on other cases and maybe also info on those doctors who treat that way, so taht we would know to contact them, or even a helping hand in getting their consent to support our GP.

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Europe based researchers include Church, Dale, and Giovanni for a start--

 

Here is Buster's most noteworthy summary of the PANDAS research trail, and he includes a number of articles that are from outside the US. I would encourage you to make contact with the US PANDAS researchers as well though--seems all should be willing to contribute!

 

http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300entry36300

Edited by T.Mom
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I am sure Buster's list is most valuable but I cannot find any helpful info there for this particular problem.

I did nto ask for researchers but for patients who ahs been on long term Azith and if possible for info on their process and treating doctor. One must distinguish between Research and Treatment.

 

I agree that the way the Finnish medical ystem is negatively responding to the condition and to the idea of approaching medical professionals abroad is not easily understood and confuses those I tried to draft to help us supporting the need for more IVIG,I agree that ideally "--seems all should be willing to contribute!", but have to say sadly that this is not the situation and that some of the responses I got in the US, not only from Swedo and her team (who were not one bit interested in Sandra already 6 years ago, because she was not young enough for their interest and had Mycoplasma-P and not strep), if I get any at all, are disaoppointing and I cannot tell of other enthusiastic doctors either (long ago 2 of the "bigger" names responded after I very diligently sought them, but that was for getting the IVIG "project" and they did not kept with us for more than one or two friendly messages).

 

I am trying to help my GP who is all alone in the battle and locate support and had friends in the US calling a few to ask for a reliable e-mail or snail mail address for our GP to write to, but was given very strange replies but no address.

My GP is not within the public system and is doing it all at her own free time and limited resources, so I am doing my bit to help her have the information she needs. We are a team trying to save Sandra.

 

You mentioned "Church, Dale, and Giovanni for a start--" - any links to info as to what they ahve done? Contact details? I have so far found nothing on what they did or do in relation to PITAND.

 

Are there no other long term Azith patients in this forum?

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