Insight from Dr. J's office last night

[kmom]

Yesterday, I spent almost all day in pj's b/c I felt terrible. Ever since my flu shot 2 wks ago (I know, dummy me, but I was advised by PANDAS dr. to do it so I'm healthy for our kids). Since 2nd day after shot, been feeling achey. And past few days have gotten a lot worse...popping/cracking joints, pain in: joints, bottom of left foot, veins in wrists, wake up w/ ear canal pain and sometimes a burning throat but I don't feel like I have cold or sinus inf....not even a runny or stuffy nose. But my from arms to shoulders yesterday felt like they weighed 300 lbs.

 

With free time, I left message w/ Dr. J to kindly remind that I'll be there at a drop of hat if cancellation appears b/f our Feb. appt. I did the same w/ Dr. H and added my name to wait list. Then contacted ILADS.org in hopes to hear of another good LLMD to see sooner. Local one I took my DD to was a bit quacky. Sat there feeling like I knew more than him which isn't a good sign! He kept saying he'd run a PCR, but DD on abx's since May and thought it would be neg. He agreed but 2x more said he'd do the PCR...frustrating. There were other red flags which made me believe he only dealt w/ clear cut Lyme cases. Certainly didn't leave feeling enlightened and whatever his receptionist/wife had told me about him knowing PANDAS, didn't seem to mesh since he seemed surprised she was on long term abx for PANDAS and was wondering when she'd get off of them. I realized after appt I'd never spend the $ to have this guy check out my DS and myself in Dec. as planned. Decided to talk to our GP,a DO/DAN dr. and very helpful. He ran the same tests and more on DS and myself Thurs. When he asked which LLMD saw DD, he responded, "Dr. X is treating Lyme now???" He seemed surprised. After researching more, he's a DO who has run a Methadone Clinic, Addicted psychiatry office and now a "Lyme specialist". No wonder the practice was new to town in May '10. I now think he bought the practice/name and just started treating Lyme in May.

 

Dr. J's receptionist or nurse (not sure but seemed so Lyme smart)called back last night. I explained how after receiving copies of Igenex test, I realized kids had some positives that didn't sit well w/ me and that since zith and IVIg, the kids have had a rough time, especially w/ new joint symptoms and quite frankly I'm so confused I question if they ever had PANDAS, is it Lyme ,etc. She asked me a bunch of lab scores. She said Band 41 being positive alone isn't a reason for concern. The 39 IND bands are interesting and retesting may be best bet. BUT when I told her IgG Bartonella Igenex score of 1:160 for DD and 1:80 for DS, she said, that is very important and needs to be addressed ASAP b/c Bartonella IgG pos, altho means past inf, is good enough to mean present infection. She said they don't see too many Bartonella IgM pos and that they look at both IgG and IgM when looking into Bart. Her tone had completely changed from unsure if kids had Lyme to a "this needs to be addressed now" type of tone once Bart scores were mentioned. She asked their Cunningham scores. DD- CamK 187 and 2 of 4 anti-neuronal AB's pos (another one borderline pos) and DS-CamK 137 and 1 of 4 anti-neuronal AB's pos. If those anti-neuronal AB's are pos, IVIg is needed in additoin to Lyme tx. Their Augmentin is tx-ing the strep, zith tx-ing the Lyme (borrelia??? wasn't sure and forgot to ask) but you aren't tx-ing the Bart. She told me to call Dr. B today and ask him to address it until we see LLMD. Oh and when I mentioned I feel as bad physically as kids do, she said she's willing to bet I was infected or recently got infected in past year and the H1N1 in flu shot caused the symptoms to flare.

 

It's so hard to know who to believe but I hear great things about Dr. J. Even when I contacted ILADS yesterday, they had a PA rep. call me and she was fantastic to talk to. She's a retired psychologist and has Lyme. When I told her I have an appt w/ Dr. J for kids in Feb she went nuts over how great he is and that I should NEVER cancel...even if I find someone good b/f then.

 

So I'm off to call Dr. B. Let the fun begin!

Edited November 20, 2010 by kmom

[philamom]

I sent you a pm.

[PacificMama]

Kmom,

 

Glad you were able to speak to Dr. J's office. You will have to update us on whether you are able to get Bart treamtment from Dr. B right now.

 

Just a couple of things...

I'm not sure that Dr. J would advise that you should do IVIG right at this time. You would really have to have that conversation with him, and see what he says based on various factors (test results, how treatment is going, exam, etc).

 

Dr. J is certainly tops, and if you have a chance to get his evaluation I'd do it. However, the reality is that he is of advanced age, and it's so hard to say how long he'll be in practice. I would also try to establish yourself with another LLMD as well. And it sounds like you may be looking for yourself as well to get an evaluation.

 

That's good that you found out more info about the supposed llmd you saw (not favorable). I'm curious, how did you get a referral to him? Did PA rep also give you other referrals.

 

OK... good luck!

Mary

[kmom]

Hi Mary,

 

Seems like all the worst symptoms times and brilliant ideas that involve dr's help/input happen on a Fri. when Dr. B is closed or Sat., when it's more diffucult than normal to get in touch w/ him. Altho, 2 wks. ago on a Sat. afternoon when we realized the downward spiral of events 4 days post removing Azith from list of meds, he Rx'd Azith immediately. I think the receptionist knew by the sound of my voice, that I was feeling desperate. So I gave it a whirl and she suggested I email, nurse prints email off and hands him question on Monday. I said ok/thanks and moved to plan B. Called family Dr., the D.O./DAN dr. and left message on emergency line...1st time ever but as I watched my kids one by one cry w/ knee, hip, arm pain today, I wanted that Bartonella Rx. He called back in 5 min and after I explained everything, he was right on board. He's so great. He always asks I keep him in the loop on everything b/c he not only cares about my kids but say she wants to learn more and help others. Now that's a great Dr! Rather than my ped docs who used to say GROWING PAINS. I told the grumpy old ped. Dr. one time (when we only had joint issues--Pre PANDAS) that my son really isn't a complainer so I'm concerned. He said, "Mom, he is a COMPLAINER or you wouldn't be here!" I was furious. Needless, left them and we all see the family dr. And he has been great joining my family on this journey.

 

 

As good as our family Dr. is, I agree, we need an LLMD. I know Dr. J is getting up there in age which is so sad. I asked the ILADS rep yeterday why he doesn't have a dr. working under him. She said he is very open and allows other doctors to study him for a week or two so they can learn but no other dr. in his office. My mom and I pray he's available to help formally evaluate my kids and give insight, but yes, I need another one. We're on Dr. H and Dr. C's wait list. I also got 3 more names from the ILADS rep.--one in Towson, MD, one in Jackson, NJ and another near Lancaster, PA. I called all 3. Left mesages for 2 and the last one in PA is having knee surgery in a month so is out of commission for a while. Another mom on forum has helped me and gave me name of another one that's drivable and have heard great things about him.

 

To IVIg or not to IVIg is the golden question! Immunologist saying get tonsils and adenoids out and do IVIg. (NOTE: Dr. J office suggest if/when T & A happens, send them to Clongen Labs to test for lyme bacteria--was planning to get strep tested but thought that was good idea in addition! Lyme hides in tissues so having that info was valuable! ) I have to figure out IVIg still.

 

Referral to local LLMD was from a friend/pediatric internist. His wife is a dr. too and they are so kind and give advice whenever possible. They too want to learn thru our experience. They agreed LLMDs are hard to come by but had heard the name of the wellness center. I wonder if it was run by another dr at that point??? Dr. friend was very honest and said he didn't know the guy but it was worth checking out. Websites can be deceiving, as his looks fantastic. I think I would have done more research like I usually do but I was enthralled by the fact he was 2 min down the road. I visited the practice to drop off paper work ahead of time and was impressed. But all that means nothing if the dr. isn't experienced. He did mention a few IMPORTANT fact that helped us. One being, "Hey Katelyn's IgG for Baronella is positive." I was floored. I didn't know. So to me that answer was worth the $315 paid. Plus he ran some other tests we hadn't done which is always a good thing. The baby steps thru this journey are incredible.

 

Thank you for your help. Your experience and advice is always so helpful. The more we all share, the more we learn!

 

Kristie