Looking for LLMD in the Michigan area for pediatric

Hi Buttercup!
Welcome to our community!!
While I didn't have kids that were infected (fortunately), I was infected as a child and grew up with these infections.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

I would encourage you to get her to start detoxing quite a bit if she isn't yet. It's the only way we have much control over our symptoms.

We have one Mom here - RowingMom that has treated her child with herbs only and she has recovered nicely. Here is a link to a search I did not long ago for her posts in case you are interested in reading through them: goo.gl/6R5DHg
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I know that you are looking for personal referrals, but in case you haven't tried these options, I wanted to share them as well:

​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

Buttercup - our now 14 year old daughter was diagnosed with Igenex IND lyme and positive bartonella when she was 10. She was treated with antibiotics for bartonella for 2 years before we realized that she also had a babesia infection. By that time she was being treated with herbs (Buhner's bartonella protocol) and the addition of babesia herbs was what she needed for complete symptom resolution.

Here is her symptom timeline:

Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.

2004 - Dx ADHD, SPD (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.

2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.

2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.

Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever.

June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.

April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.

Sept 2013 - CD57 45.

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.

Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.

Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%

Like your daughter, when her bartonella symptoms started to show up, they progressed fairly rapidly. If it hadn't been for those symptoms, we probably would have simply accepted the fact that she had diagnoses of ADHD, Tourette's etc. and lived with them. She also saw flashing lights, and experienced many sore throats which were not strep in nature.

After 2 years of antibiotics (which now looking back, I'm not sure were completely necessary) and 2 more years of herbs she has recovered, and your daughter will too. Please investigate the possibility of babesia infection (K was negative through Igenex for babesia, but responded wonderfully to the babesia herbs) because you mention shortness of breath and chest pressure/cramping.

Please also investigate MTHFR deletions which decrease the body's ability to detoxify. Often it is the buildup of toxins during bacterial die-off (either caused by the immune system killing the organisms, or antibiotic treatment killing organisms) which produces inflammation and many of the symptoms associated with any specific infection.

RowingMom~~ do you by change have a website that lists the protocol step by step you used with your daughter? Is she still 99% symptom free? Thank you for your time and help.

Buttercup said...
RowingMom~~ do you by change have a website that lists the protocol step by step you used with your daughter? Is she still 99% symptom free? Thank you for your time and help.

No, I don't have a website as I prefer to keep K's medical information relatively private. If you would like copies of the Excel files that chart daily symptoms against protocol (5 years worth) and her list of nutritional supplements, I will e-mail them to you if you enable your e-mail address.

Yes, she is still 99% symptom free and doing wonderfully in her first year of high school. 85% average in the academic stream which this semester includes: phys-ed, math, French and geography. She is making lots of friends now that her behavioural regression, ADHD and Asperger's symptoms have resolved.

She has no physical pain and celtic dances (think RiverDance) 3 hours a week not including practice at home with no shin or thigh pain, which used to be serious issues for her.

She is active in the Social Climate club at her high school and attends youth group at our church.

When she gets home in the afternoon she cleans her lunch dishes from school, empties the dishwasher and puts everything away, folds the laundry if there is any hanging on the line, makes salads for dinner and completes her homework, all before I get home at 4:30 pm.

This may sound unremarkable to parents whose children don't have chronic infections that effect their cognitive abilities, but for a long time there (until at least Grade 5, when K started treatment), I had to physically dress K, brush her teeth and keep reminding her to do any small task because she was incapable of holding any thought for longer than a few seconds. Her executive function was essentially nil.

Buttercup - I just wanted to let you know that I changed the title to this thread and deleted the other thread - that was a duplicate.

I see you have connected with some mom's here - that is great!

Awww, that is wonderful, Buttercup! That's what we are all here for - support, understanding, sharing our experiences!

Nosila~~
Can you please send me the information on the doctor in Indiana? My niece lives close to Indianapolis with family in Shoals. I think she may have Lyme disease. She has had a headache her most of her life and since giving birth to her son they have intensified to the point she got an MRI. Still no answers. Does this doctor take insurance? Also my address is enabled. Thank You :~)

Sent you an email!