insights into lyme disease -- anyone read?

[smartyjones]

wow -- sfmom -- is dr harris your dr? has anyone read this book -- insights into lyme disease? looks really good.

 

for those like me that have a pandas child -- clear strep indicators, not really other "typical" lyme symtpoms, yet wasn't getting totally well, then we found lyme -- i've a bit gotten over that chicken and egg question but it still does just kind of sit there in the back of my mind, i found this interesting.

 

When Lyme Disease Isn't the Primary Cause of SymptomsThere are cases of Lyme disease where Lyme isn't primary in the overall symptom picture; for example, in those who have Lyme and autism, although I am never really sure. I find that about one in four autistic kids have Lyme disease, but I don't think that Lyme is usually the primary reason for these kids' autism. It's a contributing factor, but may not be the main reason why they have autism. Also, while it may be important for people who have conditions such as ALS, Alzheimer's and rheumatoid arthritis, in addition to Lyme disease, to treat their Lyme, this doesn't mean that Lyme is their central problem or even causing the majority of their symptoms.

 

http://www.lymebook.com/steven-harris

[MichaelTampa]

Yes, very good book.

[sf_mom]

Yes I've read the book and yes we see Dr. Harris.

 

Dr. H is very cautious when stating Lyme causes one thing or the other even though he has been able to reverse symptoms for many thought to be autistic children/MS/ALS/Lupus individuals. etc. He said recovery for autistic children actually depends on frontal lobe damage. He can be mum on the PANDAS/Lyme issue also. He cautions me against getting wrapped up in a specific diagnoses but rather focus on positive treatment response. However, when we talk about my own PANDAS/Lyme children he believes Lyme is their core issue. He also believes auto-immunity stops when infections is properly eradicated.

 

As a matter of fact..... he thinks my older son has impetigo right now. We are in the process of treating topically to see if he is right. If its not impetigo, then its a virus. So, far no increase in symptoms one way or the other.

[philamom]

Yes I've read the book and yes we see Dr. Harris.

 

Dr. H is very cautious when stating Lyme causes one thing or the other even though he has been able to reverse symptoms for many thought to be autistic children/MS/ALS/Lupus individuals. etc. He said recovery for autistic children actually depends on frontal lobe damage. He can be mum on the PANDAS/Lyme issue also. He cautions me against getting wrapped up in a specific diagnoses but rather focus on positive treatment response. However, when we talk about my own PANDAS/Lyme children he believes Lyme is their core issue. He also believes auto-immunity stops when infections is properly eradicated.

 

As a matter of fact..... he thinks my older son has impetigo right now. We are in the process of treating topically to see if he is right. If its not impetigo, then its a virus. So, far no increase in symptoms one way or the other.

Great to hear there is no increase with the impetego. Yeah!!

[smartyjones]

\. He said recovery for autistic children actually depends on frontal lobe damage. \

 

 

do you mean frontal lobe damage due to infection or just general damage without a known cause? i am curious about the frontal lobe. the basal ganglia is what is most often talked about with pandas.

 

tpotter -- i've seen you mention frontal lobe. is that implicated in pandas also? have i missed that?

[sf_mom]

Still crossing my fingers here. Rash started yesterday and we saw Dr. H today. Only couple of possibilities and we are ruling out the worst first: Impetigo. He also feels with treatment viruses can crop up that have always been present in the body. So possible virus or also possible herx. We 27 days into new regimen cycle and Lyme flairs typically fall day 28 to 32.

 

-Wendy

[sf_mom]

I always assume due to infection while in utero. He again doesn't want to be pinned down on the cause but is helping many of these kids get better. They 'the office' says its always magical moment when these kids come in that couldn't talk and all of a sudden say Hello Dr. H.

 

-Wendy

[smartyjones]

Still crossing my fingers here. Rash started yesterday and we saw Dr. H today. Only couple of possibilities and we are ruling out the worst first: Impetigo. He also feels with treatment viruses can crop up that have always been present in the body. So possible virus or also possible herx. We 27 days into new regimen cycle and Lyme flairs typically fall day 28 to 32.

 

-Wendy

 

 

4 mths into my TBI treatment, i developed a classic bartonella rash on my upper thigh. a week-ish after that, i had a rash on my inner elbow. that area had been itching when i went to bed for a while. it was quite itchy and at times could be quite raised and bumpy. but not really like any rashed discussed in TBI. dr said yes, he believes due to treatment. it's now going away.

 

i'm hoping that's what it is for you.

Edited January 27, 2011 by smartyjones

[smartyjones]

He also believes auto-immunity stops when infections is properly eradicated.

 

so what would you believe about breathing issues -- asthma or exercise-induced asthma in a person with TBI? would you consider it likely autoimmune as well and seem to think it would go away when the infection was eradicated?

 

just thought of this as i'm writing. . . .wendy, what's you take now on the "time to heal" that we talk about in the pandas world? not trying to get you in trouble, but i'm curious on your thoughts. PM me if you're more comfortable. thanks!

[lyme_mom]

Smarty breathing issues are often babesia.

[sf_mom]

He did say its possibly from Bartonella as well. It does sound like the one you had on your inner elbow.

Edited January 28, 2011 by SF Mom

[sf_mom]

Breathing issue could be misdiagnosed and really babesia like Lyme Mom suggested... Some of these unexpected things do resolve with treatment.

 

With PANDAS nobody seems to know... In the Lyme world average child takes approximately 2 years for recovery. Just today, I spoke with a women in his offices who also has three children with congenital Lyme. Two of her children were triggered by a round of pneumonia that came through their household, her own LD was trigger by surgery. One of the girls was 12 when they first started treating and she is finally off antibiotics after 3 years and maintaining. So, hopefully, hopefully they get it all and never suffer from LD again. Their primary job is to get the immune system functioning properly enough so if there is a little Lyme left the body deals with it on its own.

 

-Wendy

Edited January 28, 2011 by SF Mom