Neurologist, Immunologist, Infectious Disease, Child Psyc.

[eljomom]

I am again paralyzed with what to do next. We saw Dr. Latimer twice. First time, not sure pandas. Second time...pandas. Said daughter was too young to meet DSM for Tourette's (she's 7)--and it doesn't ususally start with ocd at a young age of 4 or 5, then explosion of tics, etc. While I think Dr. L is a good neuro, she is NOT an immunologist, etc...

 

Tested for Lyme. Igenex says "negative." Dr. Harris (at Igenex) ran the 30-31 epitope for IgG and IgM---both were negative. So the ++ on the one test was really a negative, and he said it means it must have cross-reacted with a virus or another bacteria. Said he couldn't say she had Lymes. At the same time, many Lyme parents have said to see LLMD. We haven't tested co-infections either. Someone else said to see a pediatric Infectious Disease doc--that they "get" Lyme and pandas. Was given the name of Dr. Keim in Northern VA. Pretty sure they will follow CDC guidelines. BUT......would it be good to see him to maybe see if there is something viral causing the + bands (cross-reacting) on the Igenex WB?? What would you do for viral issues causing pandas?? Also, want to def. rule out LYme before trial of steroids.

 

We are going to get another opinion from Dr. Lavenstein at Children's NoVa outpatient center---runs movement disorders clinic (neuro.). PRetty sure he'll say it's Tourette's/ocd.

 

Then there is the whole issue of pandas/pitands being an autoimmune disorder in the first place. Which would mean it would be helpful??? to see an immunologist???

 

And even an allergist, because there's a chance that food sensitivities could be at play here, causing inflammation. Oh, or yeast

 

Finally, there are docs like Dr. Leckman and Murphy---ped. psychiatrists---who get tics/ocd/anxiety/hyperactivity.

 

And finally, having just switched to a high deductible (very, very high!!! $6000 in network, $12,000 out of network)---this is all out-of-pocket, so bopping around from doc to doc for consultations, like i could have done 6 months ago before switching insurance, is not an option. I have to have my ducks in a row. Not to mention, risking giving my daughter something else to worry about with all the visits to the doctor, who is already afraid that when her sister reaches in the cereal box with her hands, she could get sick from her and die.

 

I really, really needed to put this all out in writing--thanks for listening. And any input on priority here---would be great! I'm going crazy, not knowing where to start...and not wanting to be on months of waiting lists once i do!

[momof3inTN]

I am in the same place as you. My dd is on the PITAND side of things and I'm sick of going to doctors only to hear well she needs this and she needs that but not abx even after I tell them that abx works. PITAND covers not only viruses but other bacteria other than strep (or so I'm gathering and want to believe ) SO instead of going to differnt doctors and getting no answers and wasting money I have started faxing and emailing doctors, giving them the whole story and asking if they think they can help and if they think they can I will call the office an make an appointment. As of right now I've written to 3 doctors and still looking for more. I will let you know how it goes.

[eljomom]

I just wish antibiotics were helping right now---if they were and I couldn't find a dr. to prescribe, I'd mail order them!!! But were just not seeing much from them.

From any doc I've called, the front end always says "you can schedule an apt.---they wont talk with you without seeing your child"---and any i've actually found e-mails for just don't reply:( Keep me posted.

[sf_mom]

You could see Dr. Beal's nursing assistant Debbie McCabe. Dr. Beal's is an LLMD and located in Maryland. They will know how to run extensive testing for viruses, molds, environment toxin, parasites and TB co-infections to hopefully help you identify other causes.

 

My girlfriend's son also has indeterminate Lyme results but was positive for Ehrlichiosis and Bartonella. I'm writing a brief history of his test results and treatments so you can get an idea of how an LLMD follows a patient. There was more extensive testing performed but I've highlighted only the critical test results.

 

June 2010: Positive Ehrlichiosis/Bartonella, IND lyme, CD57 88: treated with Rifampin 300 m.g./Biaxin 500 m.g. saw rapid improvement of all symptoms within 12 weeks

 

August 2010: Negative Ehrlichiosis/Bartonella, IND lyme, CD57 54: treated with Azithro/Augmentin for low level 'potentially' lingering Lyme symptoms

 

December 2010: Positive Bartonella (Bartonella rash also appeared a week ago), Negative Ehrlichia, IND Lyme, CD57 160: Making obvious improvement due to CD57 and clinical symptoms (no OCD, no TICs), switching to Biaxin/Penicillin combo. Dr. feels Bartonella was never fully eradicated the first time around and that the 12 week period of treatment was too short. Feels his Lyme results keep coming back IND due to the fact he has a weak antibody response for Lyme. BUT, for now they continue to work towards eradicating Bartonella and see if symptoms resolve.

Edited December 29, 2010 by SF Mom

[peglem]

Autoimmune diseases fall under rheumatology. But most immunologists are also allergists. On the other hand- all of the specialties are fraught with cluelessness regarding what our kids are going through. Dr.B seems like the obvious choice after reading your post-

[eljomom]

Just out of curiosity, if these docs are skilled in figuring out all these infections, etc. it seems they would be able to show (via MORE bloodwork---maybe immune stuff) that antibody response being weak would be plausible, versus just another reason the negative results weren't really negative? does this make sense? I don't mean to be such a devil's advocate, but I really, really just don't get the whole Lyme thing. I mean, people who don't live near ticks and never had a tick bite AND have negative Lyme tests are STILL being treated for Lyme.

 

I spoke with a ped. infectious disease office today--just the office manager, but still....as die hard as LLMD's are about treating lYme, with numerous negative tests, the ID docs are just as die-hard about people being treated for lyme when they DON"T really have lyme. I know there's the whole insurance thing, etc. I get that, and the fear these docs have of getting in trouble for giving more than the standard dose of antibiotics. But even the guys who "know LYme"--and to be honest, i really believe that infectious disease docs do know Lyme (even though they are hogtied into following CDC guidelines)---they don't look at Igenex results for some reason. Maybe it's the "sensitivity" of the tests causing positive bands do to cross-reactivity. From what I keep seeing on people's results who are posting here is that most of us who are sitting on the fence, with negative Igenex testing, but still not sure, have VERY VERY similar results, with band 30, 41, and 58 showing up a bunch. Dr. Harris even said there is a cross-reactivity with many of these bands with viruses and other bacteria.

 

I do still feel uneasy about just dropping it all at this point---still haven't tested co-infections, etc.

[eljomom]

I have thought about him---but just not sure he is versed in the neurological symptoms (tics/ocd) and the ability to really be able to separate out the difference in a situation where there are no positive titers (pitands), no benefit from antibiotics, etc. Anyone know?

 

 

Autoimmune diseases fall under rheumatology. But most immunologists are also allergists. On the other hand- all of the specialties are fraught with cluelessness regarding what our kids are going through. Dr.B seems like the obvious choice after reading your post-

[P_Mom]

"Tested for Lyme. Igenex says "negative." Dr. Harris (at Igenex) ran the 30-31 epitope for IgG and IgM---both were negative. So the ++ on the one test was really a negative, and he said it means it must have cross-reacted with a virus or another bacteria. Said he couldn't say she had Lymes."

 

Thanks for posting that.

 

 

 

"Just out of curiosity, if these docs are skilled in figuring out all these infections, etc. it seems they would be able to show (via MORE bloodwork---maybe immune stuff) that antibody response being weak would be plausible, versus just another reason the negative results weren't really negative? does this make sense? I don't mean to be such a devil's advocate, but I really, really just don't get the whole Lyme thing. I mean, people who don't live near ticks and never had a tick bite AND have negative Lyme tests are STILL being treated for Lyme."

 

 

You are making perfect sense. Why consider yourself a devil's advocate for expressing some doubts and concerns?

 

 

"I spoke with a ped. infectious disease office today--just the office manager, but still....as die hard as LLMD's are about treating lYme, with numerous negative tests, the ID docs are just as die-hard about people being treated for lyme when they DON"T really have lyme. I know there's the whole insurance thing, etc. I get that, and the fear these docs have of getting in trouble for giving more than the standard dose of antibiotics. But even the guys who "know LYme"--and to be honest, i really believe that infectious disease docs do know Lyme (even though they are hogtied into following CDC guidelines)---they don't look at Igenex results for some reason. Maybe it's the "sensitivity" of the tests causing positive bands do to cross-reactivity. From what I keep seeing on people's results who are posting here is that most of us who are sitting on the fence, with negative Igenex testing, but still not sure, have VERY VERY similar results, with band 30, 41, and 58 showing up a bunch. Dr. Harris even said there is a cross-reactivity with many of these bands with viruses and other bacteria."

 

 

Eljomom,

 

You are asking some very smart questions. I understand your frustration in deciding on which doc to see. I can just give you my opinion......your Lyme results are negative.....even the follow up testing on the very positive, specific, Lyme band 31 turned out to actually be a negative. Many others are going to give you a very different opinion, and, that is fine. We are all entitled to such. If I were you, I'd put the Lyme out of mind. You are not going to be able to find one great doc all in one. Again, if I were you, I would concentrate on seeing a doc well versed in PANDAS. You already are seeing Latimer.......personally, I would stick with her. I went round and round myself with docs when this first started for us in 2007. No immunologist, LLMD, infectious disease doc, neurologist, pediatrition could truly help us. The PANDAS docs mentioned on here were the most helpful (yes, I saw 3 out of 4 )...we decided to just stick with Latimer from here on out. Too many docs giving too many opinions, diagnosis, meds, etc. can really complicate and confuse things. Plus, I wish I would not have drug my sons from doctor to doctor. It was hard on them. But, I was panicked, like you are right now. I understand. Please remember...healing takes a long time. The antibiotics may not seem to be working right now...but, perhaps that will change once your child is kept infection free (well, can't do much about viruses).....and the swelling gradually comes down. 4 years for us to get to the point we are now. Have you tried a steroid burst? Hang in there and keep those wheels churning!

Edited December 29, 2010 by P.Mom

[momofgirls]

I really wouldn't put the lyme to rest just yet. Bands 30 and 31 can cross react with viruses but your daughter was also IGG indeterminant on band 34 and IGM indeterminant on bands 83-93. These are also significant lyme bands. I spoke with Dr. Harris too some time back about my daughter's results. While our results were clearly positive, I still questioned the cross-reactivity. He told me that band 34 was lyme specific and was one that does not cross-react. An indeterminant lyme specific band should be closely looked at when a patient is symptomatic. Where there is smoke there is fire so to speak. Given your daughter's symptoms and suspicious lyme results, I still think it would be wise to see a good lyme doctor. If in fact your daughter does not have lyme, I would still consider checking for co-infections like bartonella, myco. p, erlichia, etc... A good lyme doctor will do that. Also has did Dr. Latimer check your daughter's circulating immune complexes? I don't think you posted about those results so assume that test was not run. If these are elevated, as they sometimes are in lyme, then the patient may not produce a strong positive via western blot. Lyme doctors do re-test throughout treatment and in many cases their western blot turns more positive with treatment.

Hang in there, you will find the answers!

Kim

Edited December 30, 2010 by momofgirls