cobbiemommy

My son was diagnosed as Aspergers with ADHD as a comorbid condition. Then we went to a DAN doc who diagnosed him as PANDAs, but did nothing to treat the strep condition. He was put on GFCF and supplements. He did not get well. Went to a different doc, tested for Lyme-ruled inconclusive. Went to Dr. K, treated for PANDAS. Much improvement for two weeks and then horrible rashes all over torso, pain, no stamina. Went to two different LLMDs-Lyme with Bartonella as coinfection, also still had strep hiding out in sinuses. Son has had Lyme for SEVEN years. He has diminished blood flow (vascilitis) to all body parts including the brain. Waiting on lab results, but she also suspects Babesia. Dear doctor promises to get my son well, that he is not autistic, just very sick. Doc is a LLMD and said that they have seen similar cases and he will get better! Cobbie

My son is also positive for Lyme and has Bartonella. We are waiting for the other coinfection tests to come back. My son is on the Bicillin LA shots at 2.4 million units once a week, as well as Zithromax. Bicillin LA also works on strep. (yeah) He also takes Diflucan, ProThera probiotics, and many supplements, especially magnesium. Like you, we thought the red marks on his torso were stretch marks from a growth spurt. After HD IVIg, they became more numerous and bright red. Also, he developed a red rash all over his torso. After starting Flagyl, expect to see more rashes, especially the classic bullseye, and more mood swings. They were so bad that I kept my son home from school for several days. The shots do work very well. One thing you might do is keep a journal of behaviors and improvements. We found that my son's behavior was very cyclical. About every 28 days, look out! This also coincides with the life cycle of the spirochete, so it could be that it is a reaction to the dying spirochete releasing toxins. I am glad that they are not as bad as they once were. Hopefully, every month will be less and less! Cobbie

Ds was placed on neurontin (gabapentin) just three weeks ago. He seems like a different kid in many ways-all for the better. He was also put on bicillin shots at the same time, and Zoloft as well. We cannot really untangle which one thing made all of the difference for him. He was put on gabapentin for possible seizures as well. He was first diagnosed as Pandas, but we now know it is Lyme and Pandas. He still had strep in his sinus cavitites after all that time. Good luck. Cobbie

What would you say to any (or all) of the doctors that had incorrectly diagnosed your child? I would like to put together a form letter to send to the numerous doctors that incorrectly diagnosed my child. What would you include? I want to be firm, but respectful. Hopefully, this could be used as a tool to educate the educated. Any suggestions.... Cobbie

My son was diagnosed with Asperger's at 6 1/2. I kept asking the doctors how come he just started these behaviors after he turned 4. They said it just happens that way sometimes. Now I know that when you have strep deep in your sinuses that never clears, my son never cleared his PANDAS behaviors. Also, he has Lyme disease that severely compromised his immune system. Possibly that is why he could never clear the strep in his sinuses. Bicillin shots are doing wonders for his behavior (if not for his backside). My son also does not seem to remember the difficult days and hours and all of the tears. Personally, I am very thankful that he does not remember. We are having some wonderful days, and the nurses at his new pediatrician's office are stunned that anyone thought my son had Asperger's. Someday, I think the diagnosis of Autism/Asperger's will be called something else and it will involve immune system disfunction. There are too many of these B###S### diagnosis of Aspergers/Autism for it to be correct. Human evolution cannot change that greatly in one generation. Also, when you have an Autism or Asperger diagnosis, it seems like no one wants to look any deeper into what could possibly be wrong physically. They just send you on your way with many mind altering drugs and social therapy and tell you to have a nice life. That diagnosis of Aspergers could have killed my son if I had not looked deeper to find out what was making him act and look sicker and sicker. We wasted three years trying to help him with therapy and drugs. Then we spent another 2 1/2 years trying to get the right medical answers, while still doing social skills therapy. Now that we have the right answers, he is gaining ground at an amazing rate!!! I am very blessed. While saying I am very blessed, I am also very bitter! We kept telling doctor after doctor, that this did not make sense because he was fine until he was 4 to 4 1/2. I don't know if they thought we were in denial or what, but nobody took us seriously, even the DAN doc we went to. We have used most of our savings, I have had to leave my job as a teacher, my son was asked to leave his previous school (where I had previously worked), we have lost friends, had arguments with family members, and our teenage daughter has been through heck as well with all of this. My marriage has survived because we dug in and agreed that no matter what-we'd stay together. I know I am preaching to the choir, but I just need to vent today.

Great post, Wendy! While my son only had one HD IVIg, our story is similar. Right after the IVIg, he got a rash on his torso and also a rash that looked like stretch marks popped up. He has Lyme, Bartonella, and we are not sure what else. We are waiting for test results. Here is the kicker to our little drama. The doc looked at DS face and said he has strep somewhere in his body. Evidently, he had pink cheeks and a pallor around his mouth area. She did a nasal swab in each side of his nose (not fun) and we are waiting for the results. He started Bicillin shots at the adult dose on Friday. Here we had been to "the best" doctors, some of them highly respected on this forum, and this independent doc in Kansas City found one of the pieces of our puzzle, right off! My son has improved greatly just since Friday. There is so much more to tell, but it will wait for another post. Cobbie

Wonderful news! It sounds like you are in good hands!

This is just our experience-but yes-those were all related to the Lyme bacteria and the Bartonella. We had been diagnosed as inconclusive for Lyme about a year ago, but I think if we had treated for it then, we would be miles ahead today. Get to a LLMD ASAP! They will tell you what you need to do and know. Also, since they use high dose antibiotics, same as some PANDAS treatment, you should start to see relief either way.

IMHO, your child probably has PITANDS, same basic idea, just different cause. After we did HD IVIg and my son had a properly functioning immune system, all h*** broke loose. I think those little spirochetes had been multiplying like crazy. Then when he had enough immunoglobulin to go after them the symptoms of lyme exploded! Proper treatment of the Lyme should hopefully help with the PANDAS symptoms. Our LLMD does not recommend IVIG as a Lyme treatment. IVIg could be used (possibly) as a treatment after the infection has cleared to mop up any remaining symptoms of PITANDS. That comes from the PANDAS doc. Steroids are definitely NOT recommended for anyone with Lyme. Cobbie

Dr. Brewer in Kansas City is not accepting new patients at this time. I noticed Dr. Paul Ewald's name on the list of presenters. Isn't this the same researcher that Dr. K is acquainted with? I know he references his book on his webpage. I did read that book. Very informative.

Tuesday, I was fortunate enough to get in to talk to a psychologist in my hometown so that she could help DS work through some of his anxiety and anger about the Lyme/Pandas diagnosis. The reason I picked this particular psychologist is because when we originally sought help for DS, she is the only one who was sure that he did not have Aspergers. Now mind you, we went to some pretty respected doctors and hospitals along the way that said he did! For several years, I thought she had been wrong-that all of these MDs, therapists, and major hospitals were right. She did not remember me but I filled her in on the past six years and she got up to speed pretty quick. I told her about the allergies, the rashes, the psych drugs, the GFCF diet ######, the trips to New York, Chicago, Columbia, MO and all the conflicting diagnosis. She totally believes in the body-mind connection. That kids act poorly not to act out but because they are in pain or don't feel good. She said, "You have been on quite a journey!" These are the exact same words I tell my friends. Her approach is practical, no-nonsense and I think I am in love! She shared her personal story that spanned eight years I believe. Her daughter had been a National Merit Scholar and extremely bright when suddenly she began to hear voices, have visions, and became terribly anxious and reclusive. Docs kept telling her that she had schizophrenia. Mom and Dad, who is also a psychologist, kept insisting that was not right. She said, "I know my daughter and this is not schizophrenia." Maybe because they have PhD and not MD, they were not believed. Sound familiar???? Finally, after many horrible psych meds and doctor visits, they ran a sleep study. The daughter had severe narcolepsy. She was having an elongated dream state at the beginning of sleep that made the dreams seem like voices or God or whatever. This was happening at all hours of the day and the daughter was not even aware of it! Now with proper medication, the daughter is a bright productive member of society. She works with children. So awesome. Didn't Emerson mention that narcolepsy is tied to strep? I couldn't remember the exact connection. Anyway, we have traveled thousands of miles seeking help and this great counselor is literally 10 miles from my home and she accepts our insurance. Now we have the proper medical help-three great MDs on the case and a wonderful counselor who totally believes in everything that is happening. I feel very blessed. Cobbie

Need a little help here ladies and gentlemen. We are taking our son to a second LLMD for a second opinion. After all that has happened, I am very skeptical of accepting any one doc's opinion. DS, 11, in taking Flagyl for Lyme and possible coinfections. Can we test for Babesia, Bartonella, and Mycoplasma while on antibiotics? Can we test for HHV6, etc? Also, I saw the head shake tic today. This is the tic that he got right after IVIG that we had never seen before. It went away about two weeks after the IVIg. I wonder if this tic, along with a headache and shoulder pain means that he is herxing. Any ideas?? Cobbie

Need a little help here ladies and gentlemen. We are taking our son to a second LLMD for a second opinion. After all that has happened, I am very skeptical of accepting any one doc's opinion. DS, 11, in taking Flagyl for Lyme and possible coinfections. Can we test for Babesia, Bartonella, and Mycoplasma while on antibiotics? Can we test for HHV6, etc? Also, I saw the head shake tic today. This is the tic that he got right after IVIG that we had never seen before. It went away about two weeks after the IVIg. I wonder if this tic, along with a headache and shoulder pain means that he is herxing. Any ideas?? Cobbie

I'm confused. Do you think HD IVIg is a good treatment to support the immune system while dealing with Lyme? We had great results (at first) from the IVIg. We did not know that we were dealing with Lyme at that time. Ds's doc put him on choline for the herx. It is supposed to clean out the liver as well.

Extreme fatigue and nausea can be signs of herxing. For my son, very negative behavior was a sign of herxing. He would snap at the least little thing, be very sensitive to sound, and tired. Also, he was clingy!!!! The strangest symptom so far was that he had a massive amount of SNOT! That's right, nasal discharge like a horrible cold or severe allergy. The behavior got so bad that I called the LLMD and he said to stop the antibiotics for a couple of days and then move on to the next antibiotic on our list. I was doubtful, but lo and behold, the snot went away and his behavior improved. We have just started ramping up on the Flagyl, so it will be interesting to see what happens there. Hope you feel better soon. Cobbie

We are not very far along in this journey, only 1 month into treating a Lyme diagnosis, but years into the PANDAS world, but I think the PANDAS symptoms will go away when the Lyme/Bartonella is gone. My son's Lyme had been missed for years-probably over 6 years. He is already improving after one month of zith and augmentin. Now he is on Flagyl and I am starting to see improvements in behavior and attitude. He worked on his own homework today without me having to nag, beg, or hold his hand till he got it finished. Awesome. We are not symptom free or even close, but he is improving. Herxheimer reactions are horrible, though. They look like the worst of the PANDAS symptoms!

I don't know that it is that certain bands are more treatable. I think it goes back to the idea that if that band is showing up then you definitely have lyme and that % is a percentage of his patients that improved based on those bands showing up in their bloodwork. Note, that all the numbers are 90 or above, meaning there is almost always a favorable response to antibiotics if you have lyme. I do know that band 31 is unique to Borreliosis (Lyme) and that antibiotics should bring a very favorable response. Our doc has 22 years of experience and trained under Dr. Ed Masters. He is very no nonsense and takes a long term view to treatment.

Info packet that was 1/2" thick from our LLMD. He compiled a bunch of info for his patients.

According to literature from our LLMD, band 18 is an outer surface protein (ospD). If you have it there is a 97% chance antibiotics will help you feel better. Band 28 is OSP E. Again, 97% chance of improvement on antibiotics. Band 41 is flagella or tail of Borrelia Burgdorferi. 90% chance of antibiotics helping you to feel better. Band 66 is the second most common antibody and is also a heat shock protein. Not given significance because different bacteria may produce it. If you have a good LLMD, they will know exactly how to approach these results. Remember, Lyme is a clinical diagnosis, and CDC statistics are not diagnostic criteria. Good luck.

DS, 11, just had choline added to the mix by LLMD. This is to help the liver with detoxification. As the body starts killing off the microbes, the liver and kidneys are flooded with toxins that need to be excreted. Choline is supposed to help with that.

Dawn, Good luck. Lyme Mom said what I wanted to say. The presence of even some of the Lyme Bands does indicate the presence of Borrelia and should respond favorably to the right antibiotics. I believe that Babesia responds to antimalarial drugs. DS, 11, is about to start second month of Borreliosis treatment after cognitive gains the first month. Good luck. Cobbie

How was your daughter at school? My son's teacher is very concerned about him-he is a growling bear most of the time. We are thinking about having him go half days or something similar. On the plus side, his joint popping and foot pain are way down and I see a lot more clear thinking. He put together a 250 piece Lego vehicle by himself--something he could never have done before.

Does anyone have experience with Flagyl? DS, 11, is being switched from Zith/Augmentin because of severe Herx reaction. He became extremely irritable and hard to deal with. The Bartonella rash has really faded-Yeah! We are to take a break from ABX until mood clears and then start Flagyl in very small dose and work up to full dose. Also, my son has had a ton of sinus drainage. At first, I thought it was allergies, but worse than he has ever had them. Now I think maybe it is a Herx reaction. It seemed to start when we upped the Zith from 250 to 500. If you have experienced this, please let me know! Cobbie

Dear Moms, Thank you for all the good information. DS, 11, had ivig in July and then we found out he had Lyme. We are three weeks into his Lyme protocol and he is a little bear. I don't mean a teddy bear, either. Just to talk to him-he bites your head off. He has been drinking a ton of water and taking his activated charcoal to soak up all the nasties, but this is more like the encephalopathy. I really feel like he can not control his behaviors-it is gut instinct. Later, after he yells, whatever, he will be sweet and loving. His best hours are at night before bed, although he is anxious at that time. Had anyone told me a couple of years ago that my life would be like this, I would have thought they were crazy. Pray for my "little man" to get through this tough spot in one piece. I called the school to prepare them. Principal was very kind and understanding. Thanks, Cobbie

We are about three weeks into antibiotics/antifungals. Maybe that is what we are seeing-a regression?! Funny, after I typed this last night, we sat down and played Life with a friend and he was wonderful. Go figure.