rowingmom

My 10yo daughter has been on two Abx (baixin/rifampin) for 5 months now with a diagnosis of lyme/bartonella, but it has just been within the last month that we have noticed her symptoms really resolving. Her LLMD has taken her off rifampin (for bartonella) and has replaced it with A-Bart. She is still on biaxin (for lyme), as well as boluoke, Interfase, transfer factor multi-immune, lyme transfer factor, DMG, liposomal glutathione, omega-3, a homeopathic lymph and liver drain, and a couple of probiotics. Her motor tics have stopped and she only mentions her symptoms in the evenings when she is tired or after celtic dance class. Her fatigue is gone. It is so nice to see her playing with friends, not just sitting on the curb watching. She presented with similar symptoms to your son. Stomach/throat/head/shin pain, anxiety attacks, motor tics, severe fatigue (had to sit at the top of stairs)/dizziness, weight loss, dark circles under the eyes. After beginning treatment she improved for a couple of weeks, but then had a herx reaction for two weeks. We were on vacation and had to find a wheelchair for her because she was so fatigued and in such pain. I wish I had known more about detoxing then, or had at least taken the Epsom salts along. Before her lyme/bart diagnosis she took two rounds of penicillin for strep (mostly asymptomatic but with exacerbated lyme/bart symptoms and motor tics). The doctor said it wasn't strep (no red throat w/ white spots, no fever) but I pushed for the swab - it was positive. Penicillin resolved all her symptoms while on it, but symptoms returned within 3 days of discontinuation. Biaxin/Rifampin did not resolve her symptoms immediately like the penicillin did. It has taken 5 months to see pretty good improvement, but this improvement does remain with the discontinuation of rifampin (1 month off now and with a pretty bad cold for the last 3 days as well). I am really nervous about discontinuing biaxin.

My DD10 had to switch from bactrim to rifampin for bartonella because of an allergic reaction to bactrim, as well as an increase in liver enzyme tests. She has responded very well to rifampin (pain symptoms and motor tics nearly resolved) and her liver tests are now normal. She has been taking rifampin for 4 months now. We use melatonin for sleep issues.

My 10yo daughter had a bite with atypical (1 inch diameter red rash, no EM)in 2009. Her motor tics began 1 month later along with an increase in ADHD symptoms, but no pain. This continued until Jan 2011 when she started to display bone pain, headache, IBS symptoms and the motor tics evolved to include vocal tics as well. She has tested positive for bartonella and indeterminate for lyme through IGENEX.

Please find a LLMD in your area and have a western blot done, along with the proper tests for co-infections. Antibody tests often come back negative because of lyme/co-infection immunosuppression(my daughter's did). The LLMD will know which tests need to be done, and will save you the time and money of doing unnecessary tests, and trying to figure out for yourself which tests you need. The children's hospital ER will not understand the test results. If your daughter has had a bull's eye rash, that alone will be sufficient for a LLMD to treat with Abx.

My 10yo daughter developed motor tics which eventually increased to include vocal tics 2 years ago, 1 month after having a single, round 1 inch diameter rash with a dark red border on her leg. It did not develop into a bulleye. I did not recognize it as a lyme reaction (but after checking the lyme rashes pictured on Dr. Jones' website I realize that it was). Her symptoms were exacerbated at first by strep infections and then viral infections as well. Pain symptoms began in Jan 2011. She was diagnosed with lyme/bartonella by an LLMD in June 2011 after 6 months of my investigating elimination diets (oxalates, salicylates, GFCF) which helped but did not eliminate her symptoms. It has taken 4 months on biaxin/rifampin to relieve her symptoms. Her tics have resolved and her pain symptoms now only show up when she is extremely fatigued. I have no idea how much longer she will need treatment to prevent relapse, but we will probably continue with herbal protocols indefinately after the Abx are discontinued. I wish I had recognized her rash as lyme and treated earlier. So glad that you will be starting treatment sooner rather than later.

I give my DD10 her first Abx of the day while she is still in bed. By the time she reads for a bit and then up and organized for school, breakfast is about 45 minutes later.

My 9yo daughter also had an allergic reaction to bactrum 2 weeks after we started it in June. The LLMD substituted biaxin (and rifampin for bartonella), and we have now seen a great improvement in her symptoms (both pain and PANDAS).

We saw this in DD10 for 1 year before DX with lyme/bart. There was exacerbation for several days after starting penicillin for strep and then again with biaxin/bactrim for lyme. I also noticed a sour smell (but not sweat) to her bedclothes and PJ for two years before DX. This has resolved.

My daughter (lyme/bartonella) has had two positive ANA (speckled pattern) titres. Her lab results read that the "speckled pattern is consistent with mixed connective tissue disease, scleroderma and Sjogrens Sicca complex". Other tests came back negative for lupus. These tests were run by her pediatrician before I suspected lyme and contacted a LLMD.

My DD10 is also quite bright and finds that her concentration is off during Lyme/Bart flares. She will miss or miscalculate easy math questions, and then will ask me later - why? She finds that she is easily distracted during flares and will mention it to me. We have asked her teacher to allow her to be removed from the classroom for testing, or to allow her to use ear plugs and sit behind a screen to block out the noise and movement of the other children. Even though this does make her stand out a little, she doesn't mind because her test scores improve considerably.

Check out paleo. It's gluten, dairy, grain free and once you get used to shopping in a different part of the grocery store, pretty easy too. We do eat some rice and I use fermented wheat free oats and almond meal for baking. http://everydaypaleo.com/ http://perfecthealthdiet.com/

My DD9 as also been diagnosed with Aspergers, motor tic disorder, PANDAS and now lyme/bartonella.

Be careful of high doses of Vit D without Vit K (MK-7, MK-4). http://www.ncbi.nlm.nih.gov/pubmed/17145139

There are LLMD's (not sure about PANDAS) in Buffalo NY and Plattsburg NY. Probably equadistant from Rochester. PM me for names if you want.

We are in Niagara, she is in Buffalo.

Don't move in a big hurry. We live in Ontario as well and our family Dr will not accept DD9's IgeneX results for IND Lyme and positive Bart, and neither will our pediatrician. I was told that seeing a LLMD is quite the same as taking the family inheritance and spending it on an alternative cure in Mexico. No one will even help us with requisitions for liver testing. The Canadian ELISA test came back negative (they didn't test for Bart), so that is the end of that, despite her whole host of symptoms, which have been chalked up to anxiety. We have to pay out of pocket for everything. Good earlier idea about the rewards VISA card - I must apply. The good thing is that our LLMD is 1.5 hours away.

My DD9 started biaxin and bactrim on 7 June for lyme/bart. Herxing began 1 week later, and symptoms showed no improvement for at least 1 month. Fatigue and pain were pretty bad, and we had to use a wheelchair for trips away from home. When her Igenex test came back indeterminate for lyme (IGg 34 Ind, 39 Ind, 41 ++) and positive for bartonella the LLMD switched her from biaxin to samento/banderol for lyme. DD then developed an allergic reaction to bactrim and was off ABX for approx. 2 weeks (LLMD was on vacation) before starting rifampin. During that time her symptoms calmed down and were definately better than before the start of treatment. We had obviously not been able to see improvement for the herxing, but improve she has. I have been expecting herxing to ramp up again with rifampin, but so far it has not been too bad.

Refer to http://drsusanmarra.com/TickBorneInfections/LymeDisease.aspx and http://www.drjoneskids.com/ scroll to rash photos for some pictures of lyme rashes

If you think your son has lyme, he should probably not be taking steroids.

Oops, ment to respond to the original post

My DD9 began rifampin 2 days ago, and was feeling quite nauseous for about 1/2 hour, 1 hr after taking it this morning. Nausea/vomiting is one of the more common side effects of rifampin. If this continues I will ask the LLMD if she can take it with food. This is the first occurrance of nausea as a symptom for her. Usually her GI complaints are intermittent abdominal pain and cyclic diarrhea.

My understanding is that there are 3 forms of lyme. The spirochete, the cyst form, and the acellular L-form. Lyme infection can cause the development of autoimmune reactions. Whether lyme or bartonella are causing DD9's motor tics (so they would be classifies as PITANDS), I don't know but her tics have been improving on biaxin/banderol/samento. She will probably start herxing when we begin rifampin and the tics and bart symptoms will increase. I have heard nothing from my LLMD that this might be an actual brain infection. I will have to ask. Flagyl is used to attack the cyst form, don't know how it effects L-forms.

You can order the test kit yourself, but I think you have to find a dr/naturopath willing to accept the results. You should test for the common co-infections because lyme is not usually found without one. The LLMDs will also want to test other parameters (i.e. CD57, inverted vit D) that can be indicative of infection even without a positive result. Our LLMD wrote the test requisitions that were mailed with the test - I thought of doing it myself, but figured since I would have to work with a LLMD anyway, why not let them choose the tests, and not have to run more later to get the required info. DD9 has tested positive for bartonella and indeterminate for lyme (IgG indeterminate bands 34, 39, 2+ band 41) through Igenex. Her CD57 Nk absolute count is 18 (normal > 98), her CD57 %lympho is 0.80 (normal >4.65). Her WBC is 5.2 (ref 4.5 – 13.5), a little low. She had an allergic reaction to bactrim and will be starting rifampin shortly. We began with biaxin (for lyme) for one week before starting the bactrim (for bart). She showed an increase in symptoms on biaxin/bactrim, but these have eased since having to stop the bactrim and start antihistamines. I imagine they will start up again on the rifampin. Glad to hear your son's tics are decreasing, although they may have been a herx reaction. Life is more fun when they are not suffering.

April: I am inserting some content from one of my responses on the Lyme forum. "I am living in the Niagara region of Ontario and we see a LLMD in Buffalo. My dd9 had a single circular rash in the fall of 09 and began ticcing shortly after that. She didn't develop any other symptoms that I associated with Lyme until Jan 2011 - muscle pain, bone pain, fatigue, night sweats, cyclical bowel issues etc. With a round of penicillin V in March 2011 for a strep infection all symptoms disappeared and the tics greatly resolved. Everything returned full force once the antibiotics were finished. Our family doctor wanted to treat with anti-anxiety and tic meds, the allergist wanted a full elimination diet, while the pediatrician is investigating autoimmune bowel disorders. The pediatric psychologist diagnosed PANDAS." I spent 3 months undertaking elimination diets with DD9 - low salicylate (did help the ticcing somewhat) and low oxalate (did help the pain somewhat), but was not able to fully resolve her symptoms. We kept detailed diet and symptom charts, but the allergist could find no correlations. My DD started ticcing in the fall of 2009, she had not had motor tics before that time. Other than the motor tics she showed no other clinical signs of either lyme or bartonella. When I saw the header for your post I thought I would mention what we have gone through to get a diagnosis. We went to see a LLMD in Buffalo and her Igenex test came back positive for bartonella and indeterminate for lyme. She is being treated with Abx for bartonella and some herbal preparations (banderol and samento) for lyme. The LLMD will treat the lyme more agressively if her future lyme tests seroconvert. My understanding is that lyme can greatly alter and compromise the immune system, allowing infections that would not normally be a problem for a child to either overwhelm them, or cause them to improperly mount a proper immune response (i.e. they don't appear to be sick with an infection). It can also cause autoimmune reactions (PANDAS/PITANDS?). I remember asking my DD why she was ticcing, and she gave me the same response as your son did to you, that there was a funny feeling and that it would only go away if she did the proper movement. When I was researching DD's symptoms on the PANDAS forum, I found that more than a few parents had found lyme (or coinfections) to be the cause of their child's PANDAS/PITANDS reactions. Keep up your research. The various forums on ACN are a wonderful resource. Louise