KeithandElizabeth

I have heard of a Dr. Bryant in New Jersey. I would call ILADS to get a referral. Elizabeth

Dabel - Great point!!! I did email Dr. Cunningham's office about our positive lyme results and they seemed very appreciative of this information. Bill - I walk around all day long talking to myself about how many of this big PANDAS doctors are missing these very important infections by just looking at strep. The scary thing about lyme is that is can ball up into a cyst with a year of antibiotics and a child may become asymptomatic until a new infection or stress brings the lyme out of cyst form. Hence, the importance of the cyst-bursting drugs. Elizabeth

Darlene: I have found that my children's symptoms (both tics and OCD) have come and gone and changed throughout the process! I think that until all infections are gone, you will see symptoms come and go. Elizabeth

Both of my children had this tic and it did resolve with lyme treatment, however, it did take months to resolve. My son had some pretty big regressions along the way and the tic did come back a few more times and then it would leave again. So, I just want to give you hope in that I no longer hear this, but it make take some time to completely leave. Elizabeth

Susan: My son always regressed with loose teeth! He also regressed with viruses and other bacterias (once he went down to only one antibiotic). If your daughter is on two antibiotics right now, I am guessing that her recent illness was viral related and this as well as the loose tooth can definitely cause an increase in symptoms. I know it is so hard to see them regress, but she should rebound again. My thoughts are with you and please update us on her progress. Elizabeth

Dabel: I know that there are families on the lymenet website (under flash discussion/Medical Questions) who have had children on IV antibiotics. I think you will get a great deal of responses over there. I do not have experience with IV antibiotics, but given your son's non-compliance with taking the oral antibiotics and the severity of his symptoms, the IV antibiotics sound like a good idea. I know you have to protect the gallbladder and I have heard there are drugs to help do this. My thoughts are with you right now and we will keep thinking of ideas for you! Elizabeth

Hi Bill: I have read that lyme, mycoplasma, bartonella and babesia can go directly into the brain. I am not sure about strep. The following is a video of a lyme researcher, Dr. Sapi, describing lyme and biofims. She does mention that lyme loves the brain because it is a very "juicy organ." Lovely thought. LOL. Elizabeth

Hello and welcome to the forum: I would advise to check for multiple infections because many families have found underlying infections as a cause to their children's OCD/TIC issues. Perhaps you can check both boys, although only one child is showing PANDAS symptoms, in order to better assess the whole situation. So, of course, I would check both boys of the ASO/Anti-Dnase . On top of that I would include the following: Mycoplasma (both IGG and IGM levels). There have been research articles stating the repeated mycoplasma infections may not create a rise in the IGM levels. Lyme Disease along with coinfections via IGENEX or Neuroscience since these labs include more relevant bands C3D circulating immune complex because elevated levels could create false negative infection titers. A really good ILADS LLMD (lyme literate doctor) can help you check and treat all infections, not just lyme. I hope this helps. Elizabeth

I am so sorry you are seeing a regression. I would suggest seeing our LLMD in Denver (I believe you already have his name) and give him a six month trial before flying back for another IVIG. He is definitely alternative and uses ART, which can feel very "out there" for some people, but he can easily figure out any potential bacterias/viruses/parasites that your daughter may be fighting and by getting rid of all of the infections, maybe your daughter will not need a second IVIG. Just a thought since you are already in Colorado. Elizabeth

This sentence really hit home with me because, of course, I initially thought that we had PANDAS and that lyme was going to be a little detour and now I feel that all of this is a multiple infectious process. I realize that my kids probably had lyme for a long time and were living okay with it until they added on mycoplasma and strep, etc.. Anyway this is the sentence from Klinghardt speech that I found interesting and horrifying: "But we also know that Lyme Disease is passed on and it’s not every day; it follows the lunar cycle, so every time the full moon comes, your Lyme cysts and spirochetes are transmitted to the breastmilk and into the fetus and we know that most babies handle it well. Most babies are asymptomatic until high up into their teens before the symptoms start. But they may start earlier and earlier because of the co-toxicity from other issues."

Our LLMD gives us the herbs and he often switches the herbs around. I know that Dr. B (MO) is now using Samento as well so you can get it from him at your appointment. Yes, we have used Noni quite a bit during the last 11 months. Our LLMD feels that Noni is especially good for mycoplasma. We have also used Quina and Artemisinin for babesia. These herbs are very POTENT so I would strongly recommend going slowly when introducing a new herb to the mix. Elizabeth

Herxing for my son means an increase in neuro/psych issues (PANDAS issues). Our son also responds with an increase in symptoms when he is exposed to other illnesses. So, figuring out whether he is responding to the Samento or to an illness may take a few more days.

Out of all the antibiotics, drugs, herbs, etc... Samento (cat's claw) caused the most severe herx reaction in our son. Perhaps, you can stay at 2 drops for a few days before ramping up to 3 drops. On the positive side, our LLMD told another mom that if he was stranded on an island and could only take one thing with him to treat his lyme, it would be Samento. Elizabeth

Thank you so much for sharing!!! There is so much to talk about, but the last sentence really hits home about your immune system just finally crashing. This is just such an "aha" article. I will need to reread it many times! Elizabeth

Stephanie: It seems as though your family has been fighting multiple infections (strep, kleibiesa, etc...) for a while. Have you considered doing the IGENEX or Neuroscience lyme testing to see if there is a chronic infection that may be weakening your immune systems, thus making it harder to fight bacteria such as strep?

I am so sorry that your son is not doing better! I know you have done the IGENEX testing, but I would recommend meeting with an LLMD to rule out ALL possible infections before doing the PEX. I think that PEX may give you temporary relief, but if there is still an underlying infections, I am not sure it will bring your son to 100% We have not done PEX so I am not speaking from personal experience. I know that there are many families that had great success with PEX and then there are some families whose children did regress post PEX. I guess I am only suggesting ruling out all possible infections before proceeding with PEX. Elizabeth

Wow, it is so interesting to read about other people's lyme visits. I have to admit that I was bummed when you wrote that your MD feels that you never really eradicate lyme and mycoplasma. Our LLMD feels that you can eradicate both of these bacterias, but this is just his opinions. So, is your son on any antibiotics? I know your MD practices under Klinghardt, right? I have read that Klinghardt feels strongly about getting the body strong to fight the lyme before introducing antibiotics. Are they muscle testing your son for antibiotics and he is just not showing a positive response? This can be a long process and it sounds like everything you are doing with your son will really enhance his immune system. Elizabeth

Our LLMD is very alternative and believes that the combination of antibiotics, herbs and detox formulas are the quickest way to get rid of lyme. We also see a nutritionist who helps us with the high dose probiotics. I think you will really like SF Mom's doctor as well because he also incorporates quite a bit of alternative medicine. I will PM you his name and I am sure SF Mom will add more about his testing and treating practices later. Elizabeth

Hi Nola: Yes, we did treat the lyme disease with a combination of antibiotics along with herbs and homepathic detox formulas. It took my daughter 10 months to treat the lyme, mycoplasma, strep and babesia. My son is still working on the babesia and he has been on lyme treatment for 11 months. Depending on the child's immune system as well as how many infections the child has in his/her body, the treatment time can really vary. My daughter is no longer on any antibiotics and she is now on high dose probiotics (400 to 500 billion units daily) to heal the gut as well as a few other natural supplements to help with brain healing and detoxing. She is about 96% better in terms of Tics, OCD, mood lability, etc...... Our doctor feels that she will get to 100% over the next 6 months as her body rids itself of the remaining toxins and heals from possible nerve damage. Elizabeth

Hi Nola: SF Mom lives near you and she has found two really good LLMD's in the Bay area who can help you test for lyme, mycoplasma and coinfections. I am sure she will PM tomorrow morning with their information. Many of us have come from other boards because we have found that our children's Tics and/or OCD were caused by bacterial and viral infections. Both of my children have had issues with Tics and OCD and these issues are resolving with the proper antibiotic combinations. My children did have lyme disease and one child is still fighting the lyme coinfection called Babesia. By the way, we live in Colorado (lowest incidences of lyme on the map) and although we have traveled to lyme areas on vacations, we have never once found a tick on our children. I do encourage you to rule out these infections with a good LLMD who understands the nuances of these different bacterias and viruses. Elizabeth

I agree with Emerson in terms of checking for all possible infections. Here is a brief abstract about one case of catatonia cause by enchephilities which was caused by borrelia (lyme bacteria) I think that no stone can be left unturned and all infections, bacterias and viruses should be considered. A good LLMD would look at parasites, bacterias and viruses. http://www.ncbi.nlm.nih.gov/pubmed/8437717 I feel for your pain and we are all trying to help. Elizabeth

Hello Worried Dad: I am so happy that you have found a doctor to help you!!! What a relief! I am curious as to whether he discussed the possibility of incorporating a cyst bursting drug to your son's current treatment? Great update! Elizabeth

I want to ditto what nevergiveup just said about how much energy you give to new parents who are so scared and how balanced you always seem when the forum can become tense. Thank you for sharing. Elizabeth

Jodie: The IGM positives and indeterminates look highly suspicious! It sounds like you have a good doctor and you are on top of things. Elizabeth

My daughter has always had gut issues (pain, acid reflux, rectal bleeding) and she was even admitted to Children's Hospital in Denver because they could not figure out what was causing her severe rectal bleeding. After negative test after negative test, including a negative cat scan, I finally got our pediatrician to give us some antibiotics and she did slightly improve. At the time we did not know she had lyme plus coinfections. Anyway, 8 months later we began treating for lyme, mycoplasma and babesia and we also incorporated the high dose probiotics (between 400 and 500 billion) and her gut issues have resolved. I think the lyme plus coinfections, including strep, affected her gut. She is now done with lyme treatment and is still on the high dose probiotics and we will continue this as we work with our nutritionist to get our daughter's acidity (PH's) level normalized. Elizabeth