KeithandElizabeth

I agree with lymemom about testing for lyme via IGEXEX. Our son had horrible hallucinations on top of his many other neurological/psychological symptoms and we discovered he had lyme disease along with many coinfections. The hallucinations are so scary for the child and the parent! Elizabeth

Oh boy, at least your son is testing positive for these bacterias/viruses and you can attack them. I am sure you are feeling stressed! What is your LLMD doing for the viruses? Our LLMD feels that babesia is the hardest to treat and mycoplasma should be the first to go. He says that sometimes the viruses prevent the body from dealing with the bacterias and uses anti-virals when needed. Artemisinin is supposed to be great for babesia. Wow, hard to imagine that these little kids can carry so many bad critters inside of them! How is your son doing now? We will be here for you! Elizabeth

Samento is pretty powerful against lyme and some of its coinfections. My son herxed more on Samento than he did on any other antibiotic. On the other hand, I did not see much herxing from Samento with my daughter. So, every child can respond so differently, depending on their bodies and the bacterias/viruses that are causing the most issues at the time. Here is an interesting article about Samento and lyme disease: http://www.newswithviews.com/Howenstine/james26.htm My daughter was on Artesmisinin for 8 months for babesia and my son has been on Artemisinin for 4 months so far.... Most LLMD's pulse Artemisinin, 4 days on and then 3 days off. Elizabeth

Thanks for posting. I love reading these articles! The more I read the more convinced I am that mental illness is a product of bacteria/virus illnesses. Both of my children took Artemisinin for babesia. I think that we, on the PANDAS/Lyme forums, underestimate the power of the herbs in treatment and we neglect the viruses. One reason is that the viruses are so hard to detect in blood work. Great read! Elizabeth

Oh Nancy, I feel for you right now. My daughter had horrible meltdowns during first stages of lyme treatment. So, she is on Augmentin, zithromycin, Diflucan and Tinadmax? The one concern I have is that she has daily diarrhea daily. I would bring this up to your LLMD immediately to make sure she there is not any type of bad gut bacteria going on right now. I am also wondering if this can be a yeast issue and you are seeing die off from the diflucan? We have always used the high dose probiotic regime to help with the gut during our antibiotic treatment. My kids were always on 500 billion units (10 fifty billion unit capsule) and Wendy gave her son 1.5 trillion units. The other thing I would recommend is the bentonite clay to help with detox and gut issues. We also did long epsom salt baths (with half the carton in each bath) during our worst moment. Many LLMD's recommend several other detox formulas and maybe you can ask yours to recommend a few to you tomorrow. It would be very nice if you could join your dad on that vacation. You really deserve it! Elizabeth

Hi Kelly: I know that your sons do not have elevated strep titers and they have negative lyme results, but I am wondering if they have elevated mycoplasma levels? My daughters IGG levels dropped significantly last year and our doctor thought it was from her body fighting a chronic infection. I have not checked her levels since we finished her antibiotic treatments, but I plan to in 6 months. Our doctor also said that it takes a good 4 months for the immune system to regroup after fighting the infections. Elizabeth

Melinda: I am so sorry...... We have quit doing the IVIG's and have no regrets. My son (who had the 6 IVIG's) is now doing wonderfully with lyme treatment and the IVIG's just created too much of a severe herx. I don't even think they helped him fight the bacterias because after all of those IVIG's, he still had strep, mycoplasma, bartonella, lyme and babesia. He has successfully fought most of the bacteria's now with his own body and is down to just the babesia. Right now, we do not plan to ever do an IVIG again. I do think that this is a strong herx you are seeing and the further to go from the IVIG, the better your daughter should get. Maybe add some more of the detox therapies right now? When my son was at his worst, during the monthly IVIG's, bentonite clay and charcoal would bring some relief. Elizabeth

double post

I have also read that some doctors are now linking bacteria to heart blockages, and in particular, they are linking chlamydia pneumonaie to heart issues. http://www.theheartattackgerm.com/what%20is.htm Elizabeth

Hi Tresse: I would recommend contacting an ILADS (Lyme literate doctor) to make sure that your daughter has completely dealt with the lyme and to make sure there were no other coinfections with the lyme. Some lyme literate doctors believe that 80% of people with lyme have at least one coiinfetion. A lyme literate doctor will also make sure that you have dealt with the cyst form of lyme with a cyst bursting drug because lyme can "seem' dormant when it goes into cyst form and then reactivate with another illness, vaccination and/or an emotional trauma. These doctors are also experts on all microbes, including mycoplasma and strep. Both of my children had lyme disease and strep was the trigger for their neurological/psychological symptoms. When we finally got rid of the strep, they still had OCD and TICs and we then found the lyme. There is some really good information over on the lyme board as well. Elizabeth

Well, we noticed a bald spot on his head and his eyelashes and we never noticed him pulling at either his hair or eyelashes. This all came during the worst of our moments, after a year of continual strep on top of the lyme plus coinfections. His thyroid was also abnormal so I think that he had so many chronic infections leading to a temporary autoimmune reaction. Interestingly, my brother has a long-term case of Alopecia and he is missing hair on his arms and legs. My brother also has chronic strep and he is in his 40's. Hmmmm! Elizabeth

My son also had a brief stint of alopecia. He had a small bald spot on his head and his eyelashes. It has resolved itself! Elizabeth

Thank you so much for your update. I have noticed that you had not been on the forum lately and was hoping that things were going well for your son. Slowly attacking each infection has done wonders for our children. I do think that finding the coinfections is a critical key to complete healing and I want to say that both of my children respond less and less with "PANDAS" symptoms to illness. We are 8 months into lyme (plus coinfections) treatment and while I still see a PANDAS moment here and there, they are fewer and less intense. And, yes, the what came first constant monologue in your head will drive you crazy. I am still analyzing this even though I will never know the answer! I am so happy you are seeing an upward trend!!!!! Elizabeth

Hi Mary: I completely understand your heartbreak about your younger daughter having lyme disease! I am so very sorry! I am always wondering how long my kids have had lyme disease and was it congenital? Again, we will never know and that is so frustrating! And I am so very happy that your older daughter is doing so well! That is wonderful news! Thank you for your update and for being such a strong advocate in terms of checking for an infectious disease and especially the tick borne diseases as a possible culprit to the "PANDAS" symptoms. Your posts and lymemom's posts have been invaluable to our family. My thoughts are with you on your journey of healing your younger daughter and yourself! Elizabeth

Amy: I am so thrilled for your whole family!!! During our worst of times last winter, your updates gave me soooo much hope!!! Thank you for sharing the fantastic news! Elizabeth

I know that Dr. Jones told someone i know that a positive 31 on the IGM often means that the person has had lyme longer than one year. I definitely agree with Wendy and Michael in terms of finding an ILADS doctor to help you because finding and treating the coinfections is critical. My daughter was IGG positive and IGM negative and she is almost done with lyme treatment. She is doing fantastic and our son, who had the 6 IVIG's, is also doing fantastic on lyme treatment. They are both over 95% better in terms of "PANDAS" symptoms. The lyme treatment was VERY bumpy but seems to be solving our neurological/psychological issues. Elizabeth

Our son had mycoplasma issues (along with lyme) and was positive for mycoplasma and strep after 6 IVIG's and 7 months of antibiotics. As you know, mycoplasma does not have a cell wall (like lyme) and can be just as sneaky as lyme. Of course, every doctor will have a different opinion in regards with how to treat it. Most LLMD's believe that mycoplasma treatment requires long term (and often multiple) antibiotics. I have read that augmentin is not an effective antibiotic for mycoplasma. I would recommend viewing Dr. Ann Corson's speech at the ILAD's conference. She described "our" (PANDAS) children in detail in her speech about how some children with lyme disease display only neurological symptoms, including Tics, OCD, depression, anger, etc..... These children, like my children, may not have any typical physical ailments. My son did not have any leg or joint pain initially and he was definitely not fatigued. If anything, he was barely sleeping at all! So, I now consider elevated mycoplasma IGG's or IGM"s to be a chronic infection. Elizabeth

An interesting thought to add to this video is the philosophy of Dr. Ewald (who Dr. K mentions on the front page of his website). Dr. Ewald ventures to say that familial illnesses may be due to the fact that family members share the same bad bacteria. For instance, some doctors think that heart disease may be due to chlamydia pneumonia and a family tendency towards heart disease may be due to the fact that family members are in close contact and are passing chylamydia pneumo back and forth. Interesting thoughts to contemplate! Elizabeth

Thank you for sharing such great news!!!!! Elizabeth

Well, this is (I think) a very good debate. I look at PANDAS/PITANDS as being the symptoms and lyme, strep and mycoplasma as being the microbes causing the PANDAS/PITANDS. My son initally only reacted to strep and was clearly PANDAS. Then he reacted to everything and became PITANDS. We found multiple microbes, including strep, mycoplasma, and lyme, as being the cause of his neurological/psychological symptoms. I do not think of lyme as being a separate disease, but one of the potential microbes that cause PANDAS/PITANDS (I know that I am repeating myself). Our LLMD has tested several PANDAS kids now and he has found that many only have mycoplasma and strep as their issue or mycoplasma and staph as their issue. So, I do not think this is all lyme or all strep or all mycoplasma, but it is important to find what microbes are your child's issue so that you can properly deal with it. I think that one of the reasons why it is important to test for lyme via IGENEX is because lyme is trickier to treat than the other microbes. Mycoplasma and strep may be easily treated with one antibiotic or PEX or IVIG, but lyme often comes back to rear its ugly head if not dealt with properly. Elizabeth

Nancy: I have to ditto everything you are saying!! I feel like the lyme posts on the PANDAS forum literally SAVED my son!!! I sometimes wonder what would have happened to him if we did not see these posts??? Again, we live in Colorado, which has one of the lowest rates of lyme disease. We did travel once a year to South Carolina, but I thought what were the chances that both of my children got lyme disease on vacation. I have NEVER seen a tic on my children. I was really expecting their lyme tests to come back negative! On the positive side, our son is doing great now that we are treating him for lyme and its coinfections. His first IVIG did wonders for him, but after 5 additional IVIG's, he really slid back into that dark "PANDAS" space! I was so horrified! So, I do encourage everyone to check for lyme, strep, mycoplasma, bartonella and the other coinfections. I think it is especially important to treat each infection with the correct antibiotics and drugs in order to completely heal.

I had feet pain, sciatica and an eye twitch from Bartonella. I do not have lyme disease. Both my son and I got Bartonella when our dog came home from the groomers with lice and fleas. My son immediately developed purple streaks on his back and I had scratches that looked like I ran through branches (cat scratch). After treating the Bartonella for 4 months with multiple antibiotics, all of these symptoms have gone away. In terms of the night sweats, my son had horrible night sweats. He did end up having Babesia, which is one infection that can cause night sweats. I do think there are other infections that can cause night sweats. So, I would definitely check out lyme and coinfections via IGENEX and/or Specialty Labs. Elizabeth

Hello: My children are still fighting the Babesia. Our LLMD feels that this parasite is the hardest coinfection to treat. My daughter has been on Mepron for 7 1/2 months and our son has only been on it for 4 months. They also take all of the alternative Babesia treatments such as Artemisinin and the Nutramatrix herbs. I am wondering if anyone else here has dealt with Babesia and gotten rid of it? Elizabeth

Great news Susan. These doctors are are to find! Elizabeth

Melinda: Our son reacted to all bacteria and viruses last year with neurological (PANDAS) symptoms. As time goes by, he reacts less and less and his reactions are milder. He recently became ill with a very severe cold and slightly regressed a few weeks ago. At his worst, he was still at least 88% better than a year ago. I have read that other bacterias, viruses and parasites can increase lyme/coinfection symptoms. Elizabeth