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Got to a good LLMD yesterday!


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After visiting the local LLMD who appeared my town back in May of this year and not being super impressed (little experience/make a quick buck) after DD's consultation, I continued to search my tail off for another Dr. who could see my kids and me. Thank u Tpotter for your help! Drove down to MD yesterday and all 3 of us were seen!

 

LLMD reconfirmed suspicion of Lyme and Bartonella from Igenex results and symptoms. He was the most logical, organized(didn't rush us) and informative Dr. we have seen since PANDAS symptoms started. He kept kids on Augmentin and Zithromax and switched out Bactrim (fam dr. started kids on last Sat. but by Mon. allergic sulfur reaction happened in both) for Rifampin. He also Rx'd Bicillin shot 1x/month...anyone know cheapest pharm to get them? CVS said Blue Cross won't cover it for us. We didn't have the latest tests back but had some faxed over. All 3 of our vit. D levels are LOW! He wants us on 5000 units of Vit D3, tons of probioitcs (which the kids have been on), added in Diflucan for yeast and help w/ Lyme...loved that he explained it all so well, wants a metal toxicity test done...hair test for kids...urine test next time for me b/c I have highlighted hair...IV nurse was gone for day or he would have done it on the spot...injected me w/ metal binder and then tested urine for next 12 hrs.

 

My Quest WB was neg...surprise surprise. He listened to my symptoms and scolded me gently for getting a flu shot. I explained how immunologist said I needed to be healthy for my kids. I have had symptoms that could point to Lyme but man since that vaccine 3 wks ago, I have major joint/deep bone pain, sole of foor pain and the brain fog. He said he wanted me to redo the CD 57 thru Lab Corp...did it thru Quest and not the right test. Also wanted me to get Vit. B level checked. BUT he Rx'd Doxycycline for me. He had me fill out a form on symptoms last night when I got home. After a month of abx, he wants me to fill it out again. It's a neat chart that scores your symptoms and divides them into Borrelia, Bartonella and Babesia. My Babesia symptoms are minimal to non existent...Borrelia and Bartonella score high as suspected. I went to Lab Corp today to get blood work and then went to pharmacy to explain the need for new meds. I always feel like a drug dealer for my kids and like I need to justify to the pharmacy why I need the meds! Isn't that crazy! But 3 abx's and 1 abx shot and Diflucan and Oh, by the way, "Guess what pharmacist?! I now need treatment!" The staff was very nice. We've gotten to know each other quite well since May! At least when I say Lyme I don't get the same weird look I always got from PANDAS.

 

Speaking of PANDAS...I've heard conflicting reports. Kids' Cunningham tests are positive so I heard from a VERY reputable ped. LLMD on a ph. conversation to continue IVIg if Cunningham tests are positive. Dr. yesterday wasn't gung ho over idea. Any advice? We're scheduled for IVIg #2 in a 2 wks. Any advice?

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He sounds great!! Im so happy for you.

Did he test you for lyme and coinfections thru Lapcorp or Quest? any other lab? was it covered by insurance yoou think?

our Labcorp for Ds was covered partially by insurance.

I PMed you too.

Love Tpotter. Very kind and caring individual.

Jodie

Edited by sptcmom
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Wow.... I think 'I know' who your Dr. is and congratulations on getting started. Sounds like a wonderful visit. I would follow your current LLMDs advise regarding IVIG and unravel co-infections first. Get some of the hexing behind you as it can be intense. There has been mixed results with hdIVIG/Lyme and if your child continues to improve with proper treatment you might find it is not necessary.

 

I look forward to further positive updates as you move forward with treatment.

 

-Wendy

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Yes, we happy that we saw this LLMD and yes Tpotter has been mentoring me and I am forever grateful.

 

Dr. B. has us do Igenex Aug 30th. We have Blue Cross PPO and supposedly they are applying it to the out of network deductible which we met a long time ago but they are so slow to give us our 70% back on out of network stuff. The local (new to field) LLMD who saw just my DD did a bunch of tests thru NJ Diagnostic Labs. Takes 2 wks to get results but won't see us until Dec. 16th to discuss them. Going to try to just get results w/o an appt since I don't want him treating any of us. In meantime our GP had DS and I do similar tests. I had no idea that Lab Corp needs to do the CD 57, not Quest. Not sure what Quest & Lab Corp. will charge as far as labs but I think ins. will cover or partially??? Oh and yes we did Bartonella thru Quest but no other co-inf. I would have liked to in hindsight but rep from PA Lyme.org told me about Quest Bartonella test day after we did labs. She urged me to call my GP to call Quest and tell them to use the blood they should still have to add in Bart test. They did it but only Bart test. I was desperate when GP ordered labs and he kind of went along with what I said DD had tested thru local LLMD. Our GP is super willing to help and learn but not an LLMD. Heard from GP today and WB and Bart are neg. So far we're going off symptoms and both kids' postitive Igenex IgG Bart results (very high but neg. IgM but LLMDs are saying treat the high IgM on Bart). The kids had pos 41 and IND 39. I wish I had done Igenex now.

 

I started Doxy last night. I didn't sleep well. My mind was racing while sleeping??? I know doesn't make sense. It was weird. This AM I ate cereal and 1/2 banana and then took Doxy a little later and about after an hour, I got light headed when I stood up and then started dry heaving and eventually running to the bathroom to revisit my breakfast :huh: I went on Doxy a few years ago from a dermatologist and handled it well. The mg's are doubled but do you think it's herxing or reaction to meds. DH was worried I didn't eat enough breakfast and the Doxy made me sick. He didn't think I could herx after 2nd dose. My kids do from their one dose of Bactrim last weekend and since reaction and stopping for a few days and switching to Rifampin last nt, kids are herxing today...DS worse than DD. Charcoal seemed to help him. Gave my DD a headache the one time she took it so she's scared to take it again. All I know is that I am chilly, hands and feet are freezing and I feel better when I just sit still. Still have a lot of popping and cracking. Just breathing a deep breath, my back cracks. Knees lock up and pop too. If it's Lyme, will this popping and cracking get better w/ treatment or is it just something I'll always have. And if herxing, any idea how long this lasts?

 

Happy Thanksgiving! Wish I was hungry to want to eat my dinner. I have to eat so I can take another dose of Doxy.

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Congrats on the great visit and having someone to help guide you through this! You are headed in the right direction. Our LLMD says we will probably still need IVIG but to do the lyme treatment first. I think our neurologist agrees.

 

Susan

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  • 10 months later...

Hello Kmom,

 

I am looking for a good LLMD in the MD-Dc-NoVa area. Please send me the name of the person that you went to.

 

Thanks,

ANRmom

 

 

 

Yes, we happy that we saw this LLMD and yes Tpotter has been mentoring me and I am forever grateful.

 

Dr. B. has us do Igenex Aug 30th. We have Blue Cross PPO and supposedly they are applying it to the out of network deductible which we met a long time ago but they are so slow to give us our 70% back on out of network stuff. The local (new to field) LLMD who saw just my DD did a bunch of tests thru NJ Diagnostic Labs. Takes 2 wks to get results but won't see us until Dec. 16th to discuss them. Going to try to just get results w/o an appt since I don't want him treating any of us. In meantime our GP had DS and I do similar tests. I had no idea that Lab Corp needs to do the CD 57, not Quest. Not sure what Quest & Lab Corp. will charge as far as labs but I think ins. will cover or partially??? Oh and yes we did Bartonella thru Quest but no other co-inf. I would have liked to in hindsight but rep from PA Lyme.org told me about Quest Bartonella test day after we did labs. She urged me to call my GP to call Quest and tell them to use the blood they should still have to add in Bart test. They did it but only Bart test. I was desperate when GP ordered labs and he kind of went along with what I said DD had tested thru local LLMD. Our GP is super willing to help and learn but not an LLMD. Heard from GP today and WB and Bart are neg. So far we're going off symptoms and both kids' postitive Igenex IgG Bart results (very high but neg. IgM but LLMDs are saying treat the high IgM on Bart). The kids had pos 41 and IND 39. I wish I had done Igenex now.

 

I started Doxy last night. I didn't sleep well. My mind was racing while sleeping??? I know doesn't make sense. It was weird. This AM I ate cereal and 1/2 banana and then took Doxy a little later and about after an hour, I got light headed when I stood up and then started dry heaving and eventually running to the bathroom to revisit my breakfast :huh: I went on Doxy a few years ago from a dermatologist and handled it well. The mg's are doubled but do you think it's herxing or reaction to meds. DH was worried I didn't eat enough breakfast and the Doxy made me sick. He didn't think I could herx after 2nd dose. My kids do from their one dose of Bactrim last weekend and since reaction and stopping for a few days and switching to Rifampin last nt, kids are herxing today...DS worse than DD. Charcoal seemed to help him. Gave my DD a headache the one time she took it so she's scared to take it again. All I know is that I am chilly, hands and feet are freezing and I feel better when I just sit still. Still have a lot of popping and cracking. Just breathing a deep breath, my back cracks. Knees lock up and pop too. If it's Lyme, will this popping and cracking get better w/ treatment or is it just something I'll always have. And if herxing, any idea how long this lasts?

 

Happy Thanksgiving! Wish I was hungry to want to eat my dinner. I have to eat so I can take another dose of Doxy.

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We have had great experience with IVIG for both DS10 and DD12. They do have Lyme, Bartonella, Myco, Pandas autoimmune issue, and both VERY high on Cunningham. We started lyme treatment and bombed. The IVIG is what saved us. It has been explained to me by both immunologist and LLMD that the IVIG does not help fight the lyme. It helps with the autoimmune issue that causes the brain inflammation - which is what the Cunningham test measures. I can tell u that our ds10 cunningham test before IVIG and after 3 rounds of IVIG are remarkably different - no swelling in brain in last Cunningham. I spoke with Dr. Cunningham at OCF conference and she was encouraging of IVIG and even said once her lab is opened, she believed insurance companies will cover IVIG for kids with positive Cunningham test. I know all kids are different and in our case, our immune profile backed up the whole autoimmune side of what we suspected. Perhaps this is why IVIG helps us so much. We were homebound and crazy before IVIG.

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Hello Kmom,

 

I am looking for a good LLMD in the MD-Dc-NoVa area. Please send me the name of the person that you went to.

 

Thanks,

ANRmom

 

 

 

Yes, we happy that we saw this LLMD and yes Tpotter has been mentoring me and I am forever grateful.

 

Dr. B. has us do Igenex Aug 30th. We have Blue Cross PPO and supposedly they are applying it to the out of network deductible which we met a long time ago but they are so slow to give us our 70% back on out of network stuff. The local (new to field) LLMD who saw just my DD did a bunch of tests thru NJ Diagnostic Labs. Takes 2 wks to get results but won't see us until Dec. 16th to discuss them. Going to try to just get results w/o an appt since I don't want him treating any of us. In meantime our GP had DS and I do similar tests. I had no idea that Lab Corp needs to do the CD 57, not Quest. Not sure what Quest & Lab Corp. will charge as far as labs but I think ins. will cover or partially??? Oh and yes we did Bartonella thru Quest but no other co-inf. I would have liked to in hindsight but rep from PA Lyme.org told me about Quest Bartonella test day after we did labs. She urged me to call my GP to call Quest and tell them to use the blood they should still have to add in Bart test. They did it but only Bart test. I was desperate when GP ordered labs and he kind of went along with what I said DD had tested thru local LLMD. Our GP is super willing to help and learn but not an LLMD. Heard from GP today and WB and Bart are neg. So far we're going off symptoms and both kids' postitive Igenex IgG Bart results (very high but neg. IgM but LLMDs are saying treat the high IgM on Bart). The kids had pos 41 and IND 39. I wish I had done Igenex now.

 

I started Doxy last night. I didn't sleep well. My mind was racing while sleeping??? I know doesn't make sense. It was weird. This AM I ate cereal and 1/2 banana and then took Doxy a little later and about after an hour, I got light headed when I stood up and then started dry heaving and eventually running to the bathroom to revisit my breakfast :huh: I went on Doxy a few years ago from a dermatologist and handled it well. The mg's are doubled but do you think it's herxing or reaction to meds. DH was worried I didn't eat enough breakfast and the Doxy made me sick. He didn't think I could herx after 2nd dose. My kids do from their one dose of Bactrim last weekend and since reaction and stopping for a few days and switching to Rifampin last nt, kids are herxing today...DS worse than DD. Charcoal seemed to help him. Gave my DD a headache the one time she took it so she's scared to take it again. All I know is that I am chilly, hands and feet are freezing and I feel better when I just sit still. Still have a lot of popping and cracking. Just breathing a deep breath, my back cracks. Knees lock up and pop too. If it's Lyme, will this popping and cracking get better w/ treatment or is it just something I'll always have. And if herxing, any idea how long this lasts?

 

Happy Thanksgiving! Wish I was hungry to want to eat my dinner. I have to eat so I can take another dose of Doxy.

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Hi everyone,

 

Sorry I have been MIA. My dad was sick and passed away a month ago so I was super busy traveling to help w/ all that. Luckily my kiddos were doing so well on Lyme treatment thru it all (and even b/f he got ill). They still are WAY better than last year but since starting school my DD caught a cold/viral Inf and wouldn't u know facial tic returned after being gone for so long. Her OCD/anxiety flared too. So disappointing bc things were so normal in every aspect--going to sleepovers, no anxiety, no OCD, etc. Talked to Dr J and suggested we stop abx's this weekend to see if she improves; if not, possible abx change.

 

Just to update, I am feeling much better from Lyme tx. We were all seeing Dr B in MD but when kids finally got in to see Dr J we decided to stick w/ one dr & we chose what we felt was the ped Lyme guru. As for myself, I switched to dr J in Wash DC. I still think dr b in MD is fantastic but I wanted a dr who specifically treated Lyme on a daily basis and had a good grasp on how to taper off the treatment, which dr b might be perfectly good @ but I liked dr j's pulsed abx approach If anyone on the thread still needs contact info let me know. Since I am behind on this thread and emails in general, u may have gotten the info already. I plan to be back on the forum more now.

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