laure

Hi Darlene, Symptom relief when antibiotics are removed typically indicate that the antibiotics are causing herxing...underscores that his symptoms are lyme and co-infection related. For us, when no improvement occurred as we removed antibiotics, we knew there was a lot more going on. Hence, new herbal treatment for viruses, funguses, etc. in addition to lyme, babesia, bartonella. Of course, there could be other causes, but I would investigate further.

My daughter had this, was primarily on her knees. It was not painful, just looked strange, like pus-filled warts. It went away on its own, but she was on a strong regimen of abx for lyme disease with Dr. J at the time. Unsure if abx would touch it tho, I think its a viral thing.

I would have your doc actually run tests for MYRSA before treating really aggressively. Our situation was stubborn cysts that kept returning, but when tests were sent out, they came back negative for the entire family of 5. At a later date I fell hard on a bike ride and developed a huge hematoma which turned into cellulitis with a fever, etc. about a week later. This is not the first time I have had cellulitis,so I was on to it. Eventually I was given an IV drip abx and levaquin...and then finally hospitalized where they drained this huge grapefruit-sized thing on my hip... After 3 days in the hospital, the tests came back - still negative for MYRSA and everything else they were worried about. Just staph. So I went home with a huge scar and more abx! Never got to the bottom of it, just know I am super-susceptible, and so are my kids!

When our family was hit (pre-PANDAS and Lyme) it was initially feared to be MYRSA because of the tenacity of it, and how it had spread throughout the family. I admit to not washing towels often...I mean, right after a shower how dirty can you be? Anyway, gone now for a couple of years, but we still watch for signs. And the doctors are quick to act with us on this one.

We have had it several times...it can begin for any reason, (bug bite, etc) then quickly spreads through the body and is detectable by redness, pain, swelling, a fever, and gets worse quickly. Can lead to scarlet fever. Goes away just as fast with abx, sometimes a shot of penicillin is required. To avoid contamination of other family members, change all towels, sheets, and wash clothes every time they are worn. Be vigilant for the next month about this. Our whole family was infected and had to use muprocin in our noses and wash with anti bacterial soap for an entire year. Watch for pimple-like or cyst-like signs, those are the early signs.

We used APO-Hepat or Renelix at different times. On their own, with no other detox methods, per doctor. Seems to be handling it.

We used clay capsules from Donna Pessin: http://www.uniquehealing.com/ They ship quickly and are reasonable.

ART stands for Autonomic Response Testing, commonly known as muscle testing. The article in the link below provides a scientific description of the process. I will PM you our doctor and some other references. http://www.chunginstitute.com/Chung_Institute_site/Autonomic_Response_Testing.html

I've read that exercise helps the antibiotics move more quickly along the neural pathway. My daughter is exceptionally active and I believe that is one reason she has made such amazing progress after being diagnosed with lyme, babesia, bartonella, rickettsia, and ehrlichiosis in June. She hiked everyday all summer, averaging 9 miles a day, and other than soreness sometimes, she just kept getting better, certainly ate and slept well! Perhaps your daughter was sore from the unfamiliar activity? Or she's allergic to pollen or ragweed and got a big dose of it in her lungs? This time of year we are adding daily claritin at night and occasional advil when her joints hurt from the disease... I do think most of the literature says exercise helps make the brain healthier by increasing blood flow which speeds everything along, creating endorphins, which helps with mood, and regulating eating and sleeping patterns.

Eljomom, Sorry to hear about your continued struggles. My Dd 10 is also the baby of the family. Normal enough through toddler years, she first became oppositional (spoiled according to family members) then began to seem ADHD, and by age 7 had some OCD contamination stuff. Again, we concluded allergies, possible hypoglycemia, grandfather OCD, Mom a little hyperactive, etc. Then overnight PANDAS explosion July 2010. Hopping on one foot, showering 8-10 times a day, or not at all for weeks at a time, can't bring school stuff home or home stuff to school, can't play with any toys, we can't touch her, etc. Dr B rescued her with abx in Sept 2010, but also he found lyme bands via Igenex in Nov. He said she had lyme for over a year prior. Moved on to lyme doc when PEX/ Ivig became the only solution. Lyme doc clinically diagnosed bartonella, babesia, ehrlichiosis, rickettsia, (we were shocked, she was still sort of functioning). Now 9 months later, after very aggressive abx and herbal medicine, we have a child that we do not know. Not only happy, but popular with friends, cooperative, studious, motivated. Brought home her first 100 on a math test yesterday, (high math group in school), was asked to play on the boys soccer team, reading again (she hadn't read in nearly a year). I know there are huge debates re: PANDAS or Lyme... The docs know she had lyme. We know she reacts PANDAS-like to strep/allergies/colds with increased OCD. But getting after the lyme has reduced all of the PANDAS symptoms, while the reverse was not true. I believe you should see a lyme doctor and get after it, fast. Your hope should not be lost, but you need to take action, quickly, so she can begin having a normal childhood. No time to wait in my opinion. We are thanking God we charged ahead with this illness. It seems largely in the past now.

By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too? Burnell, I am going to ask the same question as Momaine. Did you test via Igenex and NO bands were present? I'm sure you have heard that many other lyme tests show negative when in fact there are infections present. My dd 10 had similar debilitating OCD, many hours spent a day, (I cried daily, it was horrific) presumably from PANDAS last year this time, finally the root cause of her behaviors turned out to be lyme and coinfections that she had harbored for over 2 years, although we didn't see symptoms of PANDAS until last July 2010. Thankfully, she is now being treated aggressively for lyme and coinfections (bartonella, babesia) and is at 90%, certainly no noticeable OCD to those outside the family now, and improving daily. We have not had lyme tested by Igenex. What is it? How do you go about having these tests done? Igenex is the gold standard blood test for lyme and co-infections. They are a company in California. They send you a kit (or your doctor gives it to you) and you have your blood drawn anywhere and then you mail it to them for analysis. The detailed analysis comes to your doctor in about 10 days - 2 weeks. For my dd it picked up what the western blot had missed in earlier blood tests, and it also indicated that she had been infected for over a year. Made all the difference as we had been treating for PANDAS with some success, but lots of back sliding. The Igenex results led us to more aggressive treatment and a different combination of abx, and other treatments as well.

By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too? Burnell, I am going to ask the same question as Momaine. Did you test via Igenex and NO bands were present? I'm sure you have heard that many other lyme tests show negative when in fact there are infections present. My dd 10 had similar debilitating OCD, many hours spent a day, (I cried daily, it was horrific) presumably from PANDAS last year this time, finally the root cause of her behaviors turned out to be lyme and coinfections that she had harbored for over 2 years, although we didn't see symptoms of PANDAS until last July 2010. Thankfully, she is now being treated aggressively for lyme and coinfections (bartonella, babesia) and is at 90%, certainly no noticeable OCD to those outside the family now, and improving daily.

awesome priscilla! So so very happy for you !! Wishing you continued success!

I PM 'd you Darlene.

Thank God you did not lose him! Poor boy! I'm sure this is much, much more difficult with an older child, not sure I could bare it with my older kids...we will keep these ideas on the back burner, because our insurance actually had approved it...thankfully it is no longer seeming necessary at this point in time.

Thanks for clarifying SFMom, yes, my daughter's Igenex tests indicated lyme for upwards of 2 years, and we suspect more like 3-4 based on behavior changes that occurred gradually.

Hi T Mom, The particular doctor we see is an MD who also practices ART. He also will use conventional blood work and treats aggressively with antibiotics as well as supplements and herbs. So my daughter is on Omnicef, Zithromax, and Mepron in addition to a variety of herbal things which he changes up every 2 months or so, and probiotics. I don't think I could have gone the route of rejecting Western medicine, as we saw our first results as soon as she began antibiotics a little over a year ago. At that time she had anti dNase B titers of 780, and last fall they were up to 975. So pretty classic PANDAS symptoms, but Igenex revealed lyme in December 2010. That was the true turning point for us, finding out that lyme was underlying everything. Dr. B made that prediciton, incidentally. So I am very grateful to him! Glad your girls are doing better, that's all any of us wants, health for our kids and those of others. Laura

Thank you LLM! My husband and I are realizing we actually almost need family therapy to figure out how to parent normally again... it is so very very different to have the same kid no longer pushing back, resisting, crying, screaming ... hearing "ok Dad" and "thanks, you are the best Mom in the world" is jaw-dropping. Almost like this child has been hiding in a box, and now has been unwrapped!

Susan, I PM'd you. Any questions, let me know!

Eljomom, Here is the best explanation I have found: Laura Autonomic Response Testing: ART Autonomic Response Testing is a sophisticated form of testing using muscle biofeedback developed by the renowned German physician pioneer Detrich Klinghardt. MD PhD. It has some of its origins in the Unites States’ version commonly known as Applied Kinesiology developed by George Goodhardt DC, (or simply referred to as “muscle testing”).* Detrich Klinghardt recognized the potential of this form of diagnosis and took it to another unbelievable level of sophistication. Using this technique, we have been able to make a diagnosis that otherwise would be extremely difficult with standard methods. We have been able to diagnose and treat numerous patients that have failed to be diagnosed by some of the best renowned medical centers such as the Mayo Clinic, CHOP, Univ. of Pennsylvania, Jefferson, Cleveland Clinic etc. So how does it work? The answer to this question is extremely difficult to explain because it requires a new understanding of the human body that is not presently available. Here is a simplified explanation: To be able to explain ART, we must view the world and the human body more like how a quantum physicist might view them. If a physicist were to look and describe the human body, he/she would see a body composed of mostly space and many atomic particles flying around and interacting with each other. Every substance generates and emits electromagnetic energy that has a certain frequency. Of our 5 senses, conventional medicine mainly recognizes our vision as the main organ that senses electromagnetic (light) energy. Hearing recognizes auditory frequencies. Unbeknownst to most of us, our bodies also crudely recognizes the frequencies through the skin via the autonomic nervous system. This system appears to only recognize substances by three categories “good”, “bad” and “neutral”. When something is harmful, the body’s sympathetic nerves begin to fire and cause a change in the muscle strength to “block” or tighten. When something is beneficial or healing, the parasympathetic nerves fire and cause a muscle relaxation we call a healing or “yin” response. When the substance is neutral, the muscles strength doesn’t change. This information is even transmitted to another person that is touching the patient. That is to say, we can actually test the muscle strength of the assistant touching the patient. When we use the muscle testing with an assistant’s arm, we call it surrogate muscle testing. Those who have used direct muscle testing versus surrogate muscle testing uniformly find the surrogate testing more consistent and more accurate. When we combine this technique using the phenomena of bioresonance, we can even tell whether someone has a harmful substance within the body as well such as an infection or toxin. Bioresonance: ART takes advantage of a consistent physiologic response of the human body involving the physical phenomena of “bioresonance” Resonance: most individuals have heard of the ability of some talented opera singers to break a crystal glass by singing the same resonant frequency of the glass. For example, a good quality glass will have a certain frequency pitch such as the tonal pitch “C”. When the opera singer sings the same pitch “C”, the mere fact that she is singing the same resonant frequency will make the glass vibrate. Since the glass is brittle, if it vibrates hard enough, it will shatter. This resonance phenomena can be demonstrated with two guitars. If one plucks the “A” string of one of the guitars, the “A” string on the other guitar will also vibrate. In both examples the vibrations of one entity by being the same frequency will cause another entity that has the same entity to vibrate as well. Bioresonance refers to the resonance that occurs in living beings: For example, if a patient has significant mercury toxins in the head, and we present a vial of mercury near the patient’s head that has the accumulated toxin, that mercury vial will resonate with the mercury in that part of the body and cause the mercury in the body to vibrate. Since the mercury is already harming the body, the additional mercury will cause the body to react with a sympathetic stress response. This stress response will then be transmitted to the assistant’s body and change her/his muscle response.

I hesitate to post this...I know how badly some folks are struggling just to get through the day. We have been there. One year ago today I spent almost all days crying at least some of the time. My daughter spent all days crying at least a half a dozen times a day. From PANDAS diagnosis in July '10 to Lyme and coinfections in November, we jumped from doc to more reputable/expensive doc, with some ups and more downs, until we dead-ended at an IVIG/PEX conclusion from two respected docs. Enter a few smart ladies from this forum who convinced me to fly out West to check out an ART doc there before going the Ivig/PEX route. In June '11 my 10 year old was leaving all of her belongings in the garage each day after school, which she was usually late to, and sometimes couldn't attend at all, showering 8 times a day or more, crying almost all of the time, couldn't hug or kiss us, touch the dog, bring homework or books home, look at "fat' people, shop, even eating was becoming an issue, etc. etc. Many, many contamination fears interfering with her life. What a difference 3 months makes! Here is a post I sent out to a few friends this morning: OK, holding my breath now. Since we've returned home from our summer camp, Sophie just seems to be mentally shedding her OCD one thing at a time...almost like she no longer feels the contamination fears, just the fear of the fear...so bit by bit she is trying and achieving new things which were impossible when we left here in June. Last week she traveled to Syracuse an hour away to try out for an elite soccer league, only to panic at the last minute because she was afraid to touch her cleats, which she last used in the spring for softball (overweight coach contaminated them). She was so disappointed on the ride home, and so returned the next day, threw all of her gear including cleats on, and ran around with a bunch of kids she never met before playing soccer for the next hour and a half, made the cut no problem. She loves her new soccer team, and even thanked me for driving her the hour to play on it yesterday. This week she offered to clean out the car (for $5), which was absolutely disgusting! She vaccuumed out dog hair, scoured the floor mats, scrubbed seats, etc. I was in shock. Yesterday she pointed out that she had braided her American Girl doll's hair, which she hasn't touched since last December. She also asked me to wash her once "contaminated" backpack, which has been housed in the garage for 3 months because it was too infected to come into the house, and today she sharpened up pencils, packed it up, and trotted off to the first day of school. She takes one shower a day, brushes her hair and puts it in a pony tail, uses deoderant (sometimes) and dresses up occasionally. The change is unbelievable. She is so happy. We are enjoying her company again! The only symptom she is really obvious about is a sneeze-like tic, exactly like Lauren Johnson on the video... it is more apparent when she is tired. Hoping that will resolve with time and continued treatment. I continue to follow Dr. treatment to a T...and only add probiotics to the mix. Doctor says 6 more months until we are done! She tested positive for borrelia, babesia, bartonella, ehrlichiosis, ricketsia, XMRV, fungus. Now she is down to the first three, and kicking them fast! I know there will be bumps, but no crying here anymore! Prayers of thanks is more like it! Just wanted to thank you all for your encouragement when we were so so low. It's impossible to believe this is the same child. Hope you are all making wonderful progress too!

I hesitate to post this...I know how badly some folks are struggling just to get through the day. We have been there. One year ago today I spent almost all days crying at least some of the time. My daughter spent all days crying at least a half a dozen times a day. From PANDAS diagnosis in July '10 to Lyme and coinfections in November, we jumped from doc to more reputable/expensive doc, with some ups and more downs, until we dead-ended at an IVIG/PEX conclusion from two respected docs. Enter a few smart ladies from this forum who convinced me to fly out West to check out an ART doc there before going the Ivig/PEX route. In June '11 my 10 year old was leaving all of her belongings in the garage each day after school, which she was usually late to, and sometimes couldn't attend at all, showering 8 times a day or more, crying almost all of the time, couldn't hug or kiss us, touch the dog, bring homework or books home, look at "fat' people, shop, even eating was becoming an issue, etc. etc. Many, many contamination fears interfering with her life. What a difference 3 months makes! Here is a post I sent out to a few friends this morning: OK, holding my breath now. Since we've returned home from our summer camp, Sophie just seems to be mentally shedding her OCD one thing at a time...almost like she no longer feels the contamination fears, just the fear of the fear...so bit by bit she is trying and achieving new things which were impossible when we left here in June. Last week she traveled to Syracuse an hour away to try out for an elite soccer league, only to panic at the last minute because she was afraid to touch her cleats, which she last used in the spring for softball (overweight coach contaminated them). She was so disappointed on the ride home, and so returned the next day, threw all of her gear including cleats on, and ran around with a bunch of kids she never met before playing soccer for the next hour and a half, made the cut no problem. She loves her new soccer team, and even thanked me for driving her the hour to play on it yesterday. This week she offered to clean out the car (for $5), which was absolutely disgusting! She vaccuumed out dog hair, scoured the floor mats, scrubbed seats, etc. I was in shock. Yesterday she pointed out that she had braided her American Girl doll's hair, which she hasn't touched since last December. She also asked me to wash her once "contaminated" backpack, which has been housed in the garage for 3 months because it was too infected to come into the house, and today she sharpened up pencils, packed it up, and trotted off to the first day of school. She takes one shower a day, brushes her hair and puts it in a pony tail, uses deoderant (sometimes) and dresses up occasionally. The change is unbelievable. She is so happy. We are enjoying her company again! The only symptom she is really obvious about is a sneeze-like tic, exactly like Lauren Johnson on the video... it is more apparent when she is tired. Hoping that will resolve with time and continued treatment. I continue to follow Dr. treatment to a T...and only add probiotics to the mix. Doctor says 6 more months until we are done! She tested positive for borrelia, babesia, bartonella, ehrlichiosis, ricketsia, XMRV, fungus. Now she is down to the first three, and kicking them fast! I know there will be bumps, but no crying here anymore! Prayers of thanks is more like it! Just wanted to thank you all for your encouragement when we were so so low. It's impossible to believe this is the same child. Hope you are all making wonderful progress too!