H Mom

We are using Dr. Ronald Whitmont - www.homeopathicmd.com H I got his name from the book by Connie Strasheim, Insights into Lyme Disease Treatment - 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies. Since Dr. Whitmont works from symptoms, the consultation can be done by telephone conference. There are no travel costs and the remedies are inexpensive. He really takes time to understand what is going on with each child and sends the homeopathic remedy by mail. He is also board certified in Internal Medicine. I also have lyme and I can definitely see my own positive results with most of my symptoms going away with his treatment. I have seen 95% improvement with one child. My other child is a more difficult case. She had 95 % improvement for about 4 months. Recently she had a little backsliding and Dr. Whitmont just changed her remedy and we are hoping to get back on track with her. I am happy to share my experience in more detail if anyone is interested.

I have two children that were diagnosed with PANDAS and then Lyme. After seeing two different "top" PANDAS experts and having 2 IVIG's each and multiple antibiotics with worsening of symptoms we took a leap of faith and tried the Homeopathic approach. We love the Homeopathic Dr we have chosen and feel that he is the first to truly take the time to listen and try his best to help. We have seen tremendous improvement with both children. They are on no antibiotics and only take one little homeopathic pellet per day. There was a time when I first learned about PANDAS when all I wanted was to get antibiotics. After seeing the damage antibiotics can do, i believe that the homeopathic approach is much safer and more effective. My heart goes out to those fighting these diseases.

Both of my children have Lyme and I do too. I also feel that when I look back I had minor symptoms for many years. I do wish I knew if my children have congenital lyme or if this is something they acquired in the last couple of years.

I wonder if the issue is more that these kids have an open blood-brain barrier such that any of these infections result in mental symptoms that kids with closed blood brain barriers do not get? Just a thought. Then they just need to find a way to close the blood brain barrier.

Jodie, My two children were diagnosed with Lyme in mid August and immediately started an aggressive antibiotic protocol with Dr. Jones. I just found out two days ago that my lab work came back positive for Lyme. My husband and I are currently researching and debating whether to go with the Klinghardt protocol or the traditional antibiotic protocol. We live in Houston and there are no Lyme Doctors. I have found someone here, however, who has trained under Kinghardt and follows his protocol. I am truly concerned about the long term affects of these high dose antibiotics for both my children and for myself. I have been told it can be very damaging to the immune system - not what we want. If the Klinghardt approach has a good success rate, I may consider going that route.

My kids Lyme tests were ordered by Dr. B as part of his routine panel prior to a Pandas consultation. We did not expect to find Lyme. He sent us the lab work forms and we went to Lab Corp. Dr. B referred us to Dr. Jones and he began working with the kids immediately. I went through Igenex and just got my results today. Dr. Jones only treats children so I need to find a Lyme Doctor. I am in Houston and I do not believe there are any Lyme Doctors here. I am researching now even the possibility of going with a homeopathic approach for both the kids and me. Any thoughts on homeopathic/herbal ART approach vs. traditional heavy long term antibiotic approach would be greatly appreciated.

My two children (ages 13 and 15) both tested positive for Lyme in mid-August. I followed up by testing myself for Lyme and found out this morning that I am positive too. We have no idea when or where we got lyme. I have considered the possibility that this is something I have had long term that I passed to the kids congenitally. However, it seems my symptoms and my 15 year olds symptoms both started last Fall. My 13 year old has had OCD symptoms from about age 5 and her Lyme symptoms are very bad. We all four got flu-mist in the Fall and I have heard that that may have triggered inactive lyme. I have heard that Lyme feeds on metals and that is why vaccinations can trigger it. I will probably never know the answer to how we got this or when, but just thought I would throw this out. My husband is now going to get tested.

My son had a UTI without me knowing it while he was on zithromax 250MG twice a day. I found out only because we were doing a full panel of blood work for Lyme. I would not let this go. Take care.

Dr. B ordered an entire panel of lab work for my kids, including Lyme, which I had done at Lab Corp in Houston - no Igenex. I was shocked to discover both of my kids were positive for Lyme. I do not believe Dr. B is treating for Lyme since he referred us to a Lyme Dr - this was three weeks ago. I am, however, glad that he ran the tests and discovered this. The diagnosis of Lyme was confirmed through Dr. Jones.

Good summary - thank you for sharing.

When I first discovered PANDAS, I consulted with one of the top PANDAS Dr.s and had IVIG's for both of my children. My daughter seemed to get progressively worse after the treatment and I was not getting answers I needed so I decided to change Dr.s. I consulted with Dr. B who, thankfully, ordered a whole series of tests for my kids, including Western Blot Lyme (not igenex). I did not believe my kids had any chance of having Lyme (since we did not think we had much risk of exposure) and they were both positive - on Wesern Blot with LabCorp - we went to our own lab in Houston. These are real results. I feel that if we had not discovered this, the condition of both of my kids would have continued to deteriorate. I followed up with Dr. Charles Ray Jones who ran more lyme tests - through Igenex, and again, the results were positive. My daughter has had long term OCD type symptoms but never had rages or aggressive behavior until March of 2010 and I attribute this to Lyme. Many Lyme Symptoms overlap with Pandas symptoms. OCD can be a symptom of Lyme. A good list of Lyme Symptoms is available at www.timeforlyme.org/signs-symptom-list.html As I said, I am just giving facts. The last thing I wanted to hear is that my kids have Lyme, however, I am hopeful that this discovery will lead to a treatment that will work. I am surprised by the number of Pandas patients that also have Lyme and cannot help but wonder if there is a connection.

My 13 year old daughter and 15 year old son were both recently diagnosed with lyme. The original lab work was western blot through Lab Corp. The Dx was confirmed with Dr. Jones. Dr. Jones is doing further lab work with Igenex. I did Igenex on Tuesday and am waiting for results.

I recommend: Insights into Lyme Disease Treatment by Connie Strasheim. It is a compilation of Lyme strategies of 13 Lyme Doctors (some of the top int he country). Several of the Drs. do touch on treatment of children, but the book on treatment of Lyme in general. There are several books recommended in the back of this book, notably one entitled: The Lyme-Autism Connection: Unveiling the Shocking Link between Lyme Disease and Childhood Development Disorders, By Bryan Rosner and Tami Duncan. I cannot help but wonder if there is a Pandas/Lyme connection as well.

My DD13 was diagnosed with OCD at around age 7 or 8. Her OCD was mild and she functioned well at school. She was also a calm and obedient child. The OCD symptoms would change through the years and there were periods of time in which her symptoms were mild or in remission. A few years ago when she was sick her symptoms increased and I asked our Dr's about Pandas and I was told that Pandas was not recognized and I should not look into it. In February 2010 my 15 year old came down with strep and my daughters symptoms skyrocketed. She became violent, her OCD symptoms got very bad, and she had hallucinations on a couple of occasions. Because her symptoms got worse around the same time my son got strep I started researching Pandas again and found this forum and became convinced my DD13 had Pandas.. Her strep titers were high. We consulted with Dr. K and he dx Pandas and recommended IVIG. We had the IVIG in March. She seemed to improve a little during March and April, but this summer she seemed to be going down. Her OCD escalated, her stamina and motor skills went down, she began having headaches, she developed a bad rash on her face we thought might be from the low dose antibiotics, she complained of rapid heart beat and chest pain, ringing in her ears We felt we were not getting the answers we needed and consulted with Dr. B. Dr. B ordered a complete panel of blood work, including Lyme and the results were positive. My husband and I now believe that all of the increased symptoms that started in February are the result of Lyme - especially the raging and violence. Based on a telephone call with Dr. Jones office yesterday, they can tell that she has had the Lyme for at least 6 months because she is positive for Band 31 which does not show up early. (The Lyme testing was done at the end of July). (same with my son - see below) My DS15 has never had OCD symptoms. He has always been an excellent student and participated in sports. Last Fall he began losing weight (he lost 15 pounds), his grades went down, he quit all sports and became lethargic. He was disappointed in his falling grades and told me he did not feel like his mind was clear like it used to be. We were very concerned about him, but his symptoms were different from my DD13. He did not have high strep titers. Because we were consulting with Dr. K about DD13 we brought these issues to his attention and he DX Pandas for my son. He had IVIG in May. He seemed to improve greatly post IVIG but we noticed a slight bit of back-sliding at the time we decided to consult with Dr. B. Dr. B ran the same panel of blood work for DD15 and he was positive for Lyme also. Both kids have been on Lyme antibiotics (3 kinds - full dose) for 2 1/2 weeks. I feel I am starting to see improvement with both, but it is a little soon to tell.

On the issue of Pandas vs. Lyme. I started down the Pandas path in February and totally believed that I finally found the answer to my D!2's long term symptoms. I immediately began Pandas treatment of High dose IVIG and low dose antibiotics (in March 09). The treatment was not working and in August I consulted with Dr. B who ran a large panel of blood work - including Western Blot Lyme - which I had done at Lab Corp (not Igenex). I did not think my kids were at risk for Lyme and was shocked to find out that both of my children tested positive for Lyme. Both of my children also have symptoms to support the diagnosis. We were fortunate to be able to get in with Dr. Jones quickly and spent in excess of 4 hours in his office for our initial consultation. In the three weeks since our consultation, I have had to call Dr. Jones office multiple times with questions about my kids symptoms and treatment. I am extremely pleased with the fact that his caring staff takes my questions to Dr. Jones and returns my calls with answers in a timely manner. The cost of this is covered by the initial consultation fee. I still cannot help but wonder if there is some connection between Pandas and the Lyme. I am hopeful for answers.