I am sick and tired of worring about this

[sf_mom]

Here is the tread.

 

http://www.latitudes.org/forums/index.php?showtopic=10368

[PhillyPA]

Mama2alex, Dr. Fallon is considered one of the best Lyme doctor/researcher in the world. He runs the department at Columbia University. He is a neuro-psychiatrist. You can google him. There is plenty out there on him.

 

Kayanne, I too was told that steroids are very bad for Lyme disease. I do believe,thou I can not be certain because my memory fails me most of the time, that it was Dr. Fallon that told me steroids were very bad for Lyme disease. I just remember feeling so grateful at the time we went to see Fallon that I had not yet put my son on steroids. I am not certain of this information so it would be considered gossip if it were spread. I just remember clearly feeling grateful after our visit with Fallon that we had not yet put him on steroids.

[mama2alex]

Mama2alex, Dr. Fallon is considered one of the best Lyme doctor/researcher in the world. He runs the department at Columbia University. He is a neuro-psychiatrist. You can google him. There is plenty out there on him.

 

Kayanne, I too was told that steroids are very bad for Lyme disease. I do believe,thou I can not be certain because my memory fails me most of the time, that it was Dr. Fallon that told me steroids were very bad for Lyme disease. I just remember feeling so grateful at the time we went to see Fallon that I had not yet put my son on steroids. I am not certain of this information so it would be considered gossip if it were spread. I just remember clearly feeling grateful after our visit with Fallon that we had not yet put him on steroids.

 

Thanks. I did google him and saw that he was running a department at Columbia. I just didn't realize he was seeing patients in clinic. For some reason, I had the impression he was purely research focused. I read about him in Cure Unknown and have seen his name elsewhere, but I can't keep all these people straight!

 

Also wanted to add that its my understanding that steroids aren't good for those with active Lyme because they suppress the immune system, just as they wouldn't be good for someone with an active strep infection, but that doesn't necessarily translate to them not "working" in those with Lyme. They can still reduce inflammation and thus help psychiatric symptoms caused by brain inflammation - this doesn't translate to that person not having Lyme disease, as a person with Lyme Disease can certainly have brain inflammation going on. In other words, I don't think a successful steroid burst rules out the possibility of Lyme Disease.

[PhillyPA]

Dr. Fallon does not have a clinic. You have to have a pretty unique case for him to see your child. Every person I have ever heard who tried to see him was unsuccessful. He is mostly research. My son lost his language at age 5. At age 5 he became autistic. That is pretty unique.

[mama2alex]

Dr. Fallon does not have a clinic. You have to have a pretty unique case for him to see your child. Every person I have ever heard who tried to see him was unsuccessful. He is mostly research. My son lost his language at age 5. At age 5 he became autistic. That is pretty unique.

 

Ok, I see. I'm so sorry. That must have been beyond awful.

[lyme_mom]

If you still have doubts you could seek an opinion from another llmd. We did this and it was reassuring to have both llmds agree about the direction of my son's treatment. Second opinions are always worthwhile. Even though we have an excellent local llmd we still went to see dr jones too. Even though we were in excellent hands with our local Lyme expert it was reassuring to hear the same advice from dr jones during the lowest points in the treatment. Actually they each have their own strengths and we got different benefits from each doctor and I am thankful for them both. If you saw no benefit from the iv antibiotics (not a worsening) then it does sound less likely that lyme is involved. Iv rocephin would not kill bartonella or babesia though. I understand the worry though. My family is off antibiotics now and so far so good but it's always in the back of my mind if my son says he is tired or something hurts or if i start to feel bad.I hope someday that the worry of Lyme will be a distant memory.

[philamom]

If you still have doubts you could seek an opinion from another llmd. We did this and it was reassuring to have both llmds agree about the direction of my son's treatment. Second opinions are always worthwhile. Even though we have an excellent local llmd we still went to see dr jones too. Even though we were in excellent hands with our local Lyme expert it was reassuring to hear the same advice from dr jones during the lowest points in the treatment. Actually they each have their own strengths and we got different benefits from each doctor and I am thankful for them both. If you saw no benefit from the iv antibiotics (not a worsening) then it does sound less likely that lyme is involved. Iv rocephin would not kill bartonella or babesia though. I understand the worry though. My family is off antibiotics now and so far so good but it's always in the back of my mind if my son says he is tired or something hurts or if i start to feel bad.I hope someday that the worry of Lyme will be a distant memory.

lyme mom- I'm so pleased to hear your family is off abx and doing well! I wish you continued success and good health!

[lyme_mom]

If you still have doubts you could seek an opinion from another llmd. We did this and it was reassuring to have both llmds agree about the direction of my son's treatment. Second opinions are always worthwhile. Even though we have an excellent local llmd we still went to see dr jones too. Even though we were in excellent hands with our local Lyme expert it was reassuring to hear the same advice from dr jones during the lowest points in the treatment. Actually they each have their own strengths and we got different benefits from each doctor and I am thankful for them both. If you saw no benefit from the iv antibiotics (not a worsening) then it does sound less likely that lyme is involved. Iv rocephin would not kill bartonella or babesia though. I understand the worry though. My family is off antibiotics now and so far so good but it's always in the back of my mind if my son says he is tired or something hurts or if i start to feel bad.I hope someday that the worry of Lyme will be a distant memory.

lyme mom- I'm so pleased to hear your family is off abx and doing well! I wish you continued success and good health!

Thank you so much. It is such a relief!