lyme symptoms

[Tamistwins]

Hi all...i am so frustrated and don't know what to do anymore. My 3 kids are diagnosed with pandas. The two older ones have had documented step very frequently. My little one has had strep 2x before being placed on antibiotics long term. They all have elevated Cunningham scores. My son who presents with the worst symptoms has 186 cam kinase. No dr. Suggested lyme. Pretty classic pandas symptoms. Son began banging head after a stubborn step infection. He has had coinfections too...mycoplasma and ebv. Neg on western blot... One pandas doc told me not to bother with igenex when I asked about it.

My question is if anyone can tell me some of lyme symptoms. My son is always complaining he doesn't feel well and I don't know what to do anymore. He has been on antibiotics for so long. He complains his throat and stomache hurt. All night its 4:24 am , he has been waking me all night. He has a humoral immunodeficiency, he has low strep titers.

We recently began seeing Scott Smith who is treating the gut and will supplement for some deficiencies. All my kids have low cholesterol. I just don't know where to turn anymore.

 

Any advice?

[momofgirls]

You have nothing to lose by running igenex for lyme but if your kids have been on a lot of steroids or recently had ivig I would see a lyme doctor for testing...rather than trying to do it on your own through a GP. These treatment may have supressed the antibodies and a lyme doctor can hopefuly bring it out for testing if it is there.

 

My daughter did not have a lot of physical symptoms of lyme but when we started the lyme treatment she did complain of foot pain, head aches, vision disturbances etc... I would have never thought she had lyme. Good luck.

Hi all...i am so frustrated and don't know what to do anymore. My 3 kids are diagnosed with pandas. The two older ones have had documented step very frequently. My little one has had strep 2x before being placed on antibiotics long term. They all have elevated Cunningham scores. My son who presents with the worst symptoms has 186 cam kinase. No dr. Suggested lyme. Pretty classic pandas symptoms. Son began banging head after a stubborn step infection. He has had coinfections too...mycoplasma and ebv. Neg on western blot... One pandas doc told me not to bother with igenex when I asked about it.

My question is if anyone can tell me some of lyme symptoms. My son is always complaining he doesn't feel well and I don't know what to do anymore. He has been on antibiotics for so long. He complains his throat and stomache hurt. All night its 4:24 am , he has been waking me all night. He has a humoral immunodeficiency, he has low strep titers.

We recently began seeing Scott Smith who is treating the gut and will supplement for some deficiencies. All my kids have low cholesterol. I just don't know where to turn anymore.

 

Any advice?

[Tamistwins]

Thank you for your response...how are your children doing now? what do the llmd say about recovery time?

Who can offer some names of doctors in nj area?

 

 

Thank you

[momofgirls]

We saw Dr J and then a more integrative doctor for natural support as well. He does ART and uses a cobo of herbs along with abx. Dr J felt it would take between 9 mos to 2 yrs for recovery. The integrative dr believes by using ART the healing time can be shortened to under a year. Since starting lyme treatment my daughter has made huge gains. She is no longer afraid to be alone in a room at night. Falls asleep alne and I do not notice anymore OCD. She used to touch things a certain way, feel corners etc... However the tics still come and go. Both doctors feel children heal very well. I am hoping they are right! My other daughter tested negative for lyme ( see not everyone has lyme!) And does not have any pandas symptoms...knock on wood.

Good luck. I think its definately worth ruling out. I don't have a list of doctors. Obviously there is dr J but there are other great llmd and maybe closer for you. I would contact ILADS for a referral near you.

 

quote name='Tamistwins' timestamp='1294664002' post='98278']

Thank you for your response...how are your children doing now? what do the llmd say about recovery time?

Who can offer some names of doctors in nj area?

 

 

Thank you

[sf_mom]

I agree... nothing to lose to run Igenex testing (or whatever specialty lab is preferred by the Dr.) and I also agree with seeing an LLMD for additional testing and will forward a Dr. in NJ.

 

Our son presented mostly with TICs and minimal OCD at sudden on-set after strep illness in 2009. He too complained very little of joint pain at the time but had a lot of sore throat, headache and stomach complaints. Our oldest no longer has any OCD or TICS and his only complaints are now physical in nature: joint pain, back pain, hands hurt, legs hurt, just don't feel well and some rashes have appeared (one looked like bartonella and one is on his cheeks and back of arms) but the sore throat and stomach complaints have stopped. Its very strange how this has unraveled in symptom presentation. We continue treat due to those complaints.

 

-Wendy

Edited January 10, 2011 by SF Mom

[mama2alex]

Did they test for any coinfections, or just Lyme? My son has had 2 neg Lyme results (through Igenex), but is positive for Bartonella. Also has a history of sore throat and stomach aches, along with the sudden onset of OCD 1 1/2 years ago. We've seen great progress with the Bartonella treatment. I agree with consulting an LLMD - they are experts with antibiotics, so whatever infection is there, they can find it and target it effectively.