NancyD

As parents of children who are very ill (some for over a decade and some more recently), I believe we all share a common passion to heal our children and, in doing so, leave no stone unturned. Many of us feel alone in a world where traditional medicine has left us with nothing more than an alphabet soup of diagnoses and acronyms but no helpful treatments. Physicians are learning from us as we push to find the underlying reasons for why our children are so sick, while we learn from one another as we discover what works and what does not work with our children. Challenging one another is healthy and how we can continue to break new ground. But we must do it with respect and appreciation for each other's differences and differing opinions. I float between the two forums because I have a child who has both PANDAS and Lyme, as well as a variety of other co-infections. I want to feel comfortable coming to either forum. Let's remember why we are here and what we have gotten from one another. There is no doubt we are breaking new ground and leading the way for so many other children. We are dealing with a very complex condition -- nothing about it is simple and no one has all the answers. But one thing is clear...we need one another. We must continue to learn from one another, we must continue to heal our children, and we must continue to teach healthcare providers how to practice medicine with a more flexible, open mind so we can peel off those proverbial bandaids to get to the underlying causes. In the end, I think we all want the same thing...

Uncovering the Neurodevelopmental Manifestations of Lyme and Other Tick-Borne Diseases in Children Robert C. Bransfield, MD, DFAPA, President, International Lyme and Associated Diseases Society (ILADS) Saturday, November 12, 2011 This discussion seminar will be held twice: 2:00PM – 3:30PM and again at 4:00PM-5:30PM Hilton Washington DC/Rockville Hotel and Executive Meeting Center (Washington, DC Metro Area) Lyme disease is the fastest growing vector-borne infectious disease in the US and can cause a wide range of neurologic, cognitive, and psychiatric symptoms. There is emerging evidence suggesting that Lyme and other tick-borne infections can be transmitted in ways other than a tick bite, including congenitally. Lyme disease has been called the “great imitator” and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as any difficult-to-treat multi-system disorders, such as autism spectrum disorders (ASD). Current ASD research is looking at the interaction between environmental factors and genetics. Infectious disease, in particular Borrelia (Lyme), Babesia, Mycoplasma, Chlamydia, Ehrlichia, XMRV infections, and the subsequent immune reactions in both the mother and unborn child, is an important environmental consideration. Evidence supporting the relationship between tick-borne infections in the mother and child and ASD shall be reviewed. Neuropsychological manifestations of Borrelia infection, outside of ASD, will also be discussed, as will diagnostic and treatment considerations and case examples. This discussion seminar is one of the many offered at the ICDL Annual conference. To register online for the Saturday only portion of the conference, which includes this session, or the entire conference, please visit https://www.icdl.com/conference/. To learn more about the ICDL Annual conference, visit www.icdl.com.

Thanks for posting. Did it.

I've been taking Doxy for almost a year and still can't take it on an empty stomach! Yes, DD's LFT went back to normal fairly quickly once I took her off Rifampin and put her back on Milk Thistle. Great to hear she is tolerating the doxy. I took it for 2 months and was also able to take it on an empty stomach. Did your daughter's LFT's go back to normal when you stopped the Rifampin?

We have seen an increase in hyperactivity/impulsivity since starting treatment for Bartonella. Neither tics nor rages have come back (thank goodness) but she is a bit more explosive when she gets stressed. Anxiety and scrupulosity is much more manageable but we're waiting for the day it disappears! We're 1 year into Lyme treatment and 3 months into Bartonella treatment. DD originally started out with Rifampin for Bartonella but it elevated liver function too much so we had to switch to Doxy (she is also on Augmentin XR and pulsing of Tindamax/Azyth). I'm not sure the Doxy is as powerful as Rifampin., but she is tolerating it amazingly well. Only person I know who can take Doxy on an empty stomach and not have any GI problems!

DD has been taking NAC for a few years. She takes 1200 mg bid. She used to get monthly NAC/Glutathione IVs for ~ 2 years 8 years ago. The IVs healed her severe colitis. At the time she was on a highly restricted diet and could eat very little. She was sensitive to almost everything she put in her mouth, except for fruits, vegetables, and meat/poultry. After the IVs she could eat almost anything as long as it was dye free.

I give Milk Thistle 3 times a day -- both on an empty stomach and with food.

Karen, my DD15 takes Magnesium Glycinate 120 mg bid. Nancy

I have had great difficulty sleeping at night in the past several months. I'm fatigued and can't wait to get to bed but then my body feels like it's going to jump right out of my skin. For me, this is tied to either Lyme or Bartonella. I started taking 1.8 mg Melatonin-SR and that really helps. I have been sleeping much better lately. Also, I make sure I don't take ANY B vitamins at night as they can cause sleep problems and nightmares. You could also try taking a long Epsom salts bath before bed so your body is relaxed. And also take some magnesium - this should help to relax your muscles.

Monthly Glutathione IVs. My DAN doctor does them in his office. A push IV took 10 minutes and a drip IV took 20 minutes. Sorry for the ignorance, but monthly IV's of what? Did your LLM order them?

Well the Bartonella may be key to your DD's fears and compulsions. Severe anxiety and OCD are hallmark signs of Bartonella. Have you seen an LLMD for treatment? I would not proceed with IVIg until you have treated the co-infections for a while and then you may find you won't need IVIg.

We were in a similar situation. The PANDAS treatment (IVIg) cleared up my DD's severe tics and violent rages completely but her anxiety and scrupulosity only continued to get worse. Then we tested positive for LYME and began treatment. That cleared up her joint problems, brain fog, and fatigue, but it did not help her anxiety or scrupulosity. Then we tried to provoke for Bartonella and sure enough she broke out in a Bartonella rash. Since she's been on treatment for Bartonella we have seen a reduction in her anxiety and scrupulosity for the first time in a few years. From what I understand it can take a long time to eradicate but at least now it's manageable. So you may want to be tested for Lyme and other co-infections. Though keep in mind, Bartonella tests are not accurate and it can be difficult to get a positive. I also came out negative, yet after a provocation I herxed badly with Bartonella symptoms. Another thing to consider is KPU. Check recent threads on that either on the LYME or PANDAS forum.

I don't yet know if my DD has KPU -- something I want to discuss with our Doctor today -- but from what I understand KPU patients have low Glutathione levels. Here is a definition of Glutathione and why it's important to the body: "Glutathione is an essential component of your cells, with low glutathione levels, cells cannot perform many of their functions properly. Although glutathione functions in dozens of roles in our metabolism, the major functions can be summarized in four areas: (1) It is the major antioxidant produced by the body. Antioxidants such as vitamins C or E cannot be made by your body and in fact could not work properly if glutathione were not present. (2) Our immune systems depend on a steady supply of glutathione. Without it, our immune defenses become weakened. (3) It is important in detoxifying many substances including heavy metals, breakdown products of cigarettes and automobile exhaust, many cancer-causing agents, and a multitude of pollutants and toxins we encounter on a daily basis. (4) The major source of energy produced in our cells is derived from tiny structures called mitochondria. These mitochondria would literally burn up without the presence of glutathione." My DD used to have very low Glutathione levels and after having monthly IVs for two years it cleared up her severe colitis and she no longer had to be on a GFCF/soy-free diet, which she had been on for years. It also really helped before doing chelation to pull mercury, tin, and other heavy metals from her body. Sorry to go off topic, but why is this test important? Did it affect your child's treatment?

Glutathione (GSH) test. Many labs, including Great Plains, do this test. Does not have to go to a specialty lab. I believe most hospitals do glutathione testing. What is the test and which lab?

It's a simple blood test to check glutathione levels. But very important! Does not have to go to a specialty lab. I will need go to through her files to see if I can find it. I don't know if it was a glutathione test directly or the fact that other things were high (or low) and implied a glutathione issue. At the time (this was in 2008) we were working a lot with Great Plains and the OAT test and stool testing, so maybe it was from that. I will try to remember to look through the notes. Susan

Ann Corson is excellent, although she has a long wait. She's in the Phila area.

Early on, before starting treatment for Lyme or Bartonella, I had migrating numbness in my arms, legs, fingers, and toes. Within weeks of starting treatment for Lyme (this was months before starting treatment for Bartonella) the numbness went away and has not come back since. So for me the numbness was definitely tied to Lyme. Nancy

FANTASTIC news!!! :-)

Gee, no time ever when DD's liver function spiked did we have to stop supplements. Only certain abx. Recently they spiked and we had to stop Rifampin but we stayed on other abx and then switched to a new one that is easier on the liver. Also, one med that invariably spikes DD's liver is Diflucan. We had to switch to Amphotericin.

I really find Milk Thistle very effective. I give DD15 1 capsule tid (each capsule contains 250 mg milk thistle herbal extract and 100 mg milk thistle seed). BUT, you cannot give it if individual is on Rifampin or other drugs (see http://www.hcvadvocate.org/hepatitis/hepC/mthistle.html for list). Curcumin Phytosome also helps to protect the liver but not nearly as effective as Milk Thistle. My DD takes 1 capsule Curcumin Phytosome (250 mg) bid. Perhaps others will have additional thoughts. Nancy

Susan, We use Douglas Laboratories' Querciplex. You can find them online. The pills are just average size. I find the combination of quercetin and bromelain to be key. 500 mg of quercetin is very low. Nancy I have not had any luck with the quercetin but I only have been taking 500 mg. Maybe that is why. I can't bare to give dd10 3 more big pills a day. What brand do you use and how big are the pills? The one I have, the pills are pretty big. Susan

I second the quercetin! We have been using Querciplex (Douglas Laboratories), which consists of quercetin and bromelain, for many years and that's one supplement we can't be without! Bromelain acts as an anti-inflammatory and helps with colds, asthma, and excessive mucus. I used to get bronchitis every time I got a cold or allergies. Haven't had bronchitis in several years since taking Querciplex. In fact, haven't had a cold in a few years. Both DD and I take 3 capsules bid, which is 1998 mg quercetin and 600 mg bromelain.

He has been treating my DD15 for over 8 years and she was one of the case studies in his book (pseudo name Alyssa). She is no longer on the autism spectrum and her PANDAS has been in remission for over a year. BUT, we are still treating the underlying infections (chronic Lyme and Bartonella.) I believe I gave it to her congenitally...and if it weren't for some of the other moms on this forum who encouraged IGeneX testing I might have never known. I encourage ANYONE who is having trouble keeping PANDAS in remission to PLEASE test for Lyme and co-infections through IGeneX. So many of the DAN doctors are great, though not all understand PANDAS, Lyme, and co-infections.

YES, I do hate those "oh crud" moments!!

Wow, now that I read through the symptoms of KPU, my DD shows almost all signs. We know she has had high levels of heavy metals in the past and has undergone chelation. She has ALWAYS had poor dream recall (in fact, could never recall a dream from the time she was little) and poor breakfast appetite, occasional nail spots, pale skin, emotional lability, moodiness, stress intolerance, knee and joint pain, explosive anger, depression, etc. It seems high % of individuals with ASD or Lyme have KPU. Will have to see if we have tested for that. And now that you mention little pimples on the skin, she has always had that on her upper arms.