Lyme and OCD

[dcmom]

As many of you know, I have been pursuing Lyme testing with my girls. It is possible they are both positive. The doctor who tested them via Igenex does feel there was recent Lyme exposure, but is not suggesting aggressive treatment. We have been very aggressive pursuing medical interventions to get these kids well, and we don't plan to stop now.

 

Two questions: for those who are pandas/Lyme: our only symptom is OCD- did your children have OCD and to what extent was it helped by Lyme treatment?

 

Secondly, I need a doctor- we are in the NY/NJ area. I am considering Dr Jones, but a little concerned about finances. Does anyone have suggestions?

 

Thanks!

[KeithandElizabeth]

dcmom:

 

OCD was our son's most debilitating symptom, although he did have tics as well. And yes, lyme treatment has helped tremendously with the OCD. As many other mothers have posted, the journey can be bumpy, but the overall trend is upward. Our son is ranging from 88% to 96% better and he has been on antibiotics for 16 months, although he has only been on a specific lyme treatment for 10 months. The multiple antibiotic regime was vital as well as a cyst bursting drug, like Tindamax. Finding and treating the coinfections is also important for complete success.

 

I will PM you about a couple of doctors in your area.

 

Elizabeth

[laure]

Hi dcmom,

My dd9s only symptom was OCD, ranging from severe (she could not come in the house! Luckily it was summer...) to moderate (she could attend school, but couldn't touch any handles, pencils, keyboards, etc.). After starting lyme treatment, she made huge strides almost immediately. She is now improving rapidly after just 6 weeks, with about 10 days of sort of ragey behavior, followed by 10 days of bliss. Each cycle is much better than the one before. The good times are better than I ever remember her...even 3 years ago, although we never knew anything was wrong until 6 months ago.

Check the ILADS site for lyme dr.s near you. One name that comes up frequently is Dr. Horowitz, just north of NYC. Not sure if he takes insurance though. For the record we still see PANDAS doc though...like you we will not stop all measures until she is 100%.

Good luck, hope your journey is as positive as ours!

Laura

[sf_mom]

DCMom: I am so grateful you checked.... I am positive Elizabeth has forwarded many helpful Dr.'s to you. I suspect you'll see some real improvement in the first six months of treatment.

 

Wishing you all the best. The right antibiotic protocol is helping many tremendously (minus the herx). I look forward to hearing of both your daughter's continued recovery.

 

-Wendy

[NancyD]

Dr. Horowitz is in Hyde Park, NY and his fee is ~$900 (they ask for 50% up front to hold the appointment). I don't know if he takes insurance but he will give you the proper documentation with coding to submit.

 

We see Ken Bock in Rhinebeck, NY. He is not an LLMD but he has been treating LOTS of LD for many, many years. PANDAS too. He does integrative medicine (also a DAN doctor). So far he has been spot on for our Lyme treatment. He does not take insurance though he will give the proper documentation with coding to submit.

 

Hi dcmom,

My dd9s only symptom was OCD, ranging from severe (she could not come in the house! Luckily it was summer...) to moderate (she could attend school, but couldn't touch any handles, pencils, keyboards, etc.). After starting lyme treatment, she made huge strides almost immediately. She is now improving rapidly after just 6 weeks, with about 10 days of sort of ragey behavior, followed by 10 days of bliss. Each cycle is much better than the one before. The good times are better than I ever remember her...even 3 years ago, although we never knew anything was wrong until 6 months ago.

Check the ILADS site for lyme dr.s near you. One name that comes up frequently is Dr. Horowitz, just north of NYC. Not sure if he takes insurance though. For the record we still see PANDAS doc though...like you we will not stop all measures until she is 100%.

Good luck, hope your journey is as positive as ours!

Laura

[Guest fr88]

DC Mom- Do you girls only have a positive IGM or a positive IGG?

[dcmom]

Fr88- I hope you are still on the forum- as parents your input is invaluable.

 

Both daughters are IGM positive ( one 5 bands, one 7 bands). Both are IGG negative- no bands ther (except I think ind or positive on 41).

 

I am aware there are two possible "sides" to this ( possibly cross reactivity, possibly chronic Lyme).

 

The thing is, we have been at this for about 2 yrs. We have been aggressive; lots of docs, abx, steroids, plasma pheresis, iv steroids- we achieve remission- bot it doesn't seem to last long. If there could be help with Lyme treatment ( whatever the reason), I want to try it now- not 5 yrs from now. I think we have little to lose with some time on an antibiotic cocktail, and everything to gain.

 

Something came along two years ago and changed the course of my girls lives, from 2 robustly heAlthy, happy and carefree kids, to two girls riddled with anxiety and other issues. As I am sure you are aware, it has been deveatatimg to all.

 

I will keep everyone updated.

[JAG10]

Fr88- I hope you are still on the forum- as parents your input is invaluable.

 

Both daughters are IGM positive ( one 5 bands, one 7 bands). Both are IGG negative- no bands ther (except I think ind or positive on 41).

 

I am aware there are two possible "sides" to this ( possibly cross reactivity, possibly chronic Lyme).

 

The thing is, we have been at this for about 2 yrs. We have been aggressive; lots of docs, abx, steroids, plasma pheresis, iv steroids- we achieve remission- bot it doesn't seem to last long. If there could be help with Lyme treatment ( whatever the reason), I want to try it now- not 5 yrs from now. I think we have little to lose with some time on an antibiotic cocktail, and everything to gain.

 

Something came along two years ago and changed the course of my girls lives, from 2 robustly heAlthy, happy and carefree kids, to two girls riddled with anxiety and other issues. As I am sure you are aware, it has been deveatatimg to all.

 

I will keep everyone updated.

dcmom,

 

This sounds very reasonable. Given your circumstances you bet I'd do the same thing! Good luck!

 

Wishing your girls health and happiness by any means effective.

JAG

[lyme_mom]

As many of you know, I have been pursuing Lyme testing with my girls. It is possible they are both positive. The doctor who tested them via Igenex does feel there was recent Lyme exposure, but is not suggesting aggressive treatment. We have been very aggressive pursuing medical interventions to get these kids well, and we don't plan to stop now.

 

Two questions: for those who are pandas/Lyme: our only symptom is OCD- did your children have OCD and to what extent was it helped by Lyme treatment?

 

Secondly, I need a doctor- we are in the NY/NJ area. I am considering Dr Jones, but a little concerned about finances. Does anyone have suggestions?

 

Thanks!

I think Dr. Jones is fantastic. I would also consider Dr Steven Bock in Rhinebeck NY b/c he offers a number of complementary therapies which I think have a lot of potential to help. He has an ondamed machine which is used to test for bugs and other issues energetically. He also treats patients with this machine I think. He uses acupuncture too. We have never seen him but I sure would be interested in seeing him if I lived near his office. I read about him in Connie Strasheim's book Insights Into Lyme Disease Treatment and I read his brother, Kenneth Bock's book about Autism, ADHD, Allergies and Asthma. They work in the same office in Rhinebeck NY. His fee is 850 for first appt and I am not sure whether that includes the ondamed testing. We have done ondamed testing before I think his office really knows how to use it well b/c they have used it a long time.Being on the right combo of antibiotics really makes all the difference but it is wise to do all you can to fix the gut, detox, etc and Dr. Bock does this too.

[MichaelTampa]

I came to the lyme diagnosis from a Tourette's diagnosis via PANDAS. I had a high Cam-K, like 186 or something like that. From a TS standpoint, it was primarily OCD and anxiety, with some tics, but very few. So in a way OCD was the majority symptoms, but that was until all the other symptoms I was ignoring or explaining away as something else are considered--intermittent and moving joint pain, sensitivity to fluorescent lights and wireless signals, chronic fatigue, GERD and other digestive issues. There really are many "little" symptoms that we can ignore and live with.

 

Regarding the OCD, yes, absolutely, it is much improved for me during/from treatment, as are the other symptoms. I am still treating, not 100% at this point.

[momaine]

I came to the lyme diagnosis from a Tourette's diagnosis via PANDAS. I had a high Cam-K, like 186 or something like that. From a TS standpoint, it was primarily OCD and anxiety, with some tics, but very few. So in a way OCD was the majority symptoms, but that was until all the other symptoms I was ignoring or explaining away as something else are considered--intermittent and moving joint pain, sensitivity to fluorescent lights and wireless signals, chronic fatigue, GERD and other digestive issues. There really are many "little" symptoms that we can ignore and live with.

 

Regarding the OCD, yes, absolutely, it is much improved for me during/from treatment, as are the other symptoms. I am still treating, not 100% at this point.

Michael Tampa,

I have followed your story on the pandas forum for quite some time. I am so happy that you have found the cause of all your symptoms. Best wishes for your continued health!