New here and some questions

[MichaelTampa]

Some other key differences between lyme and PANDAS treatments: The serious lyme doctors frequently use IV abx, it can get into the brain better. Also, since lyme can avoid abx by turning into cysts, they use cyst-busters and other drugs to tackle the other forms of lyme, drugs like flagyl or tindamax, and alinia.

 

Fixit--You're lyme western blot results are basically the same as mine, the ones that my lyme doctor looked at, along with my symptoms, and said I had lyme (positive band 41; IND band 39). While the band 41 is least specific for lyme (band 41 positive sometimes means something else), the band 39 is the most specific. If you're positive for band 39, it is going to be presumed lyme in the absence of extremely strong evidence to the contrary. If the person has lyme symptoms, then that's it. The "IND" is frequently looked at as a positive, and that's how my lyme doc looked at it. Another approach is test again, hopefully after a little treatment and the person is a little stronger, and you'll likely get a true positive.

 

It is true, there are many lyme doctors who treat band 41 positive all by itself as lyme, as long as the symptoms correlate with lyme. They will point out that symptoms can distinguish between lyme and the other things that cause band 41 positive, like H.Pylori (the one that causes ulcers). They defend this approach at this point simply with their experience. They have treated several band-41-only patients as if they had lyme, and most of them get better. They feel they can't prove it was lyme, but their goal is to get the patient better anyway, not to prove what was making the patient ill.

[Fixit]

Some other key differences between lyme and PANDAS treatments: The serious lyme doctors frequently use IV abx, it can get into the brain better. Also, since lyme can avoid abx by turning into cysts, they use cyst-busters and other drugs to tackle the other forms of lyme, drugs like flagyl or tindamax, and alinia.

 

Fixit--You're lyme western blot results are basically the same as mine, the ones that my lyme doctor looked at, along with my symptoms, and said I had lyme (positive band 41; IND band 39). While the band 41 is least specific for lyme (band 41 positive sometimes means something else), the band 39 is the most specific. If you're positive for band 39, it is going to be presumed lyme in the absence of extremely strong evidence to the contrary. If the person has lyme symptoms, then that's it. The "IND" is frequently looked at as a positive, and that's how my lyme doc looked at it. Another approach is test again, hopefully after a little treatment and the person is a little stronger, and you'll likely get a true positive.

 

It is true, there are many lyme doctors who treat band 41 positive all by itself as lyme, as long as the symptoms correlate with lyme. They will point out that symptoms can distinguish between lyme and the other things that cause band 41 positive, like H.Pylori (the one that causes ulcers). They defend this approach at this point simply with their experience. They have treated several band-41-only patients as if they had lyme, and most of them get better. They feel they can't prove it was lyme, but their goal is to get the patient better anyway, not to prove what was making the patient ill.

 

WOW....Thanks Micheal!!!!

[peglem]

Some other key differences between lyme and PANDAS treatments: The serious lyme doctors frequently use IV abx, it can get into the brain better. Also, since lyme can avoid abx by turning into cysts, they use cyst-busters and other drugs to tackle the other forms of lyme, drugs like flagyl or tindamax, and alinia.

 

Fixit--You're lyme western blot results are basically the same as mine, the ones that my lyme doctor looked at, along with my symptoms, and said I had lyme (positive band 41; IND band 39). While the band 41 is least specific for lyme (band 41 positive sometimes means something else), the band 39 is the most specific. If you're positive for band 39, it is going to be presumed lyme in the absence of extremely strong evidence to the contrary. If the person has lyme symptoms, then that's it. The "IND" is frequently looked at as a positive, and that's how my lyme doc looked at it. Another approach is test again, hopefully after a little treatment and the person is a little stronger, and you'll likely get a true positive.

 

It is true, there are many lyme doctors who treat band 41 positive all by itself as lyme, as long as the symptoms correlate with lyme. They will point out that symptoms can distinguish between lyme and the other things that cause band 41 positive, like H.Pylori (the one that causes ulcers). They defend this approach at this point simply with their experience. They have treated several band-41-only patients as if they had lyme, and most of them get better. They feel they can't prove it was lyme, but their goal is to get the patient better anyway, not to prove what was making the patient ill.

I don't understand how they can use symptoms to distinguish lyme from other things. There is not a single symptom on the list that is specific to lyme disease. It seems like the dx really depends on how well the patient responds to treatment. (I'm okay with that!) My daughter has never been tested for lyme, or mycoP either, and I think (though he's never told me this) her physician is afraid if testing for those comes up negative, he'll not be able to justify treatment. So, he's prescribed some treatments that seem to be "just in case its that" in the name of her strep problems (intracellular). She has responded well to them. So I may never know if its actually more than the strep...and I guess I don't care as long as she is responding to treatment.

[sf_mom]

Michael, thanks for your help on treatment regimen. Are things improving for you? I'm also wondering did you have elevated ASO and Anti-DNase-B? If I remember correctly your CAM was high.

 

-Wendy

 

Some other key differences between lyme and PANDAS treatments: The serious lyme doctors frequently use IV abx, it can get into the brain better. Also, since lyme can avoid abx by turning into cysts, they use cyst-busters and other drugs to tackle the other forms of lyme, drugs like flagyl or tindamax, and alinia.

 

Fixit--You're lyme western blot results are basically the same as mine, the ones that my lyme doctor looked at, along with my symptoms, and said I had lyme (positive band 41; IND band 39). While the band 41 is least specific for lyme (band 41 positive sometimes means something else), the band 39 is the most specific. If you're positive for band 39, it is going to be presumed lyme in the absence of extremely strong evidence to the contrary. If the person has lyme symptoms, then that's it. The "IND" is frequently looked at as a positive, and that's how my lyme doc looked at it. Another approach is test again, hopefully after a little treatment and the person is a little stronger, and you'll likely get a true positive.

 

It is true, there are many lyme doctors who treat band 41 positive all by itself as lyme, as long as the symptoms correlate with lyme. They will point out that symptoms can distinguish between lyme and the other things that cause band 41 positive, like H.Pylori (the one that causes ulcers). They defend this approach at this point simply with their experience. They have treated several band-41-only patients as if they had lyme, and most of them get better. They feel they can't prove it was lyme, but their goal is to get the patient better anyway, not to prove what was making the patient ill.

[sf_mom]

Dr. Fallon mentioned in article will be attending meeting regarding PANDAS at the NIMH next week!!!!

 

http://autism.about.com/b/2007/01/10/is-th...-and-autism.htm

[P_Mom]

And, if it is Lyme....steroids are HIGHLY contradicted to take with the disease. Lyme can get significantly worse with steroids......your child would not get better....just worse.

[sf_mom]

Another good point!

 

And, if it is Lyme....steroids are HIGHLY contradicted to take with the disease. Lyme can get significantly worse with steroids......your child would not get better....just worse.

[MichaelTampa]

Yes, my CamK was 186--quite high. Those ASO and Anti-DNase-B and other things you get on that page were all in the normal range. I did get quite a bit of improvement with the lyme regimen. I am currently off the lyme drugs and continuing to see improvements in neurological symptoms (perhaps from detox). Coming off the abx, the one downside has been increased phlegm and coughing, and this makes me think I really am still unable to make antibodies for things like strep and mycoplasma pneumonia. The strep vaccine testing I did more or less demonstrated that fairly well.

 

Michael

 

 

Michael, thanks for your help on treatment regimen. Are things improving for you? I'm also wondering did you have elevated ASO and Anti-DNase-B? If I remember correctly your CAM was high.

 

-Wendy

 

Some other key differences between lyme and PANDAS treatments: The serious lyme doctors frequently use IV abx, it can get into the brain better. Also, since lyme can avoid abx by turning into cysts, they use cyst-busters and other drugs to tackle the other forms of lyme, drugs like flagyl or tindamax, and alinia.

 

Fixit--You're lyme western blot results are basically the same as mine, the ones that my lyme doctor looked at, along with my symptoms, and said I had lyme (positive band 41; IND band 39). While the band 41 is least specific for lyme (band 41 positive sometimes means something else), the band 39 is the most specific. If you're positive for band 39, it is going to be presumed lyme in the absence of extremely strong evidence to the contrary. If the person has lyme symptoms, then that's it. The "IND" is frequently looked at as a positive, and that's how my lyme doc looked at it. Another approach is test again, hopefully after a little treatment and the person is a little stronger, and you'll likely get a true positive.

 

It is true, there are many lyme doctors who treat band 41 positive all by itself as lyme, as long as the symptoms correlate with lyme. They will point out that symptoms can distinguish between lyme and the other things that cause band 41 positive, like H.Pylori (the one that causes ulcers). They defend this approach at this point simply with their experience. They have treated several band-41-only patients as if they had lyme, and most of them get better. They feel they can't prove it was lyme, but their goal is to get the patient better anyway, not to prove what was making the patient ill.