KeithandElizabeth

Kimballot: In terms of the S. Pneumo titers, I know that SF Mom's younger son's S. Pneumo titers did improve after antibiotic treatment. I will let you know how my daughter's titers are when we retest in a month. I think that when you have such a chronic infection, like lyme and babesia, your body fights so hard and the bacteria is so sneaky that your body gets worn down and the IGG's even become depleted. I know that my daughter's IGG levels continued to go down and we did not know why. Her B cells were extremely low as well. I have been doing a great deal of research on bacterial/viral infections and their relationship with mental illness, heart disease, cancer, etc... Doctors are now discovering that chlamydia pneumonia is related to heart disease and the HPV virus is related to cervical cancer and H. Pylori causes ulcers and stomach cancer, mycoplasma can cause schleroderma, and lyme can look like MS and Parkinsons, etc..... Elizabeth

Nevergiveup: I have to chuckle at your statement "I am so confused," because this is how I have constantly felt for the last 7 months. It has felt a little OCDish on my part. I initially thought this was all autoimmune and now I am leaning towards this predominantly being a chronic infection for many of these families, but not all families. I was literally in shock when we saw such amazing healing from the multiple antibiotics. But it was not perfect healing and it was very bumpy. So, I agree that everyone should start with the infection tests. And I would suggest testing only via IGENEX test because many of the families that I speak with had negative Western Blots and than positive IGENEX tests. I would also consider having the mothers test as well because there is a slight chance that if it was passed congenitally, than the child may possibly have a false negative IGENEX test. Elizabeth

I know of several families where the monthly IVIG's seemed to either stop being effective or seemed to create more symptoms. My theory, and this is just a theory, is that these children had underlying chronic infections and maybe the IVIG's were creating too strong of a herx reaction or "stirring up the antibodies" too much. Granted, 5 out of these 6 families had lyme or bartonella or babesia as an underlying infection. My son did great with the first high dose IVIG and then we started doing monthly low dose IVIG's and he eventually started to backslide (after the 3rd low dose IVIG) and then we finally did one last high dose IVIG and stopped 7 months ago and instead added a second antibiotic for lyme and he is doing fantastic now. Dr. K and our lyme doctor thought that our children's failed S. Pneumo titers and low IGG's were the result of an infection versus the cause of the illness. My daughter never did have an IVIG and I plan to retest her Cunningham levels (which were all very high) as well as her S. Pneumo titers (she failed 13 out of 14) and her IGG's in a month when she finishes her lyme treatment to see if they have improved with just the multiple antibiotic treatment. I think this will be interesting to see since my son is the one who did all of the IVIG's and we went with an entirely different approach with our daughter. elizabeth

My daughter had very similar symtoms, in terms of difficulty breathing and rib pain. She also has babesia. She also had a grunt vocal tic as one of her tics and I could never figure out if it was an actual vocal tic or a breathing issue from the babesia. I think it was a tic because it went away when she fell asleep? Elizabeth

We had an extremely negative experience with an Infectious Disease Specialist. We went due to an elevated Anti-Dnase. We were awaiting our lyme results and not really worried about lyme at the time since our children did not really have the physical lyme symptoms. This doctor went on a tirade about lyme and how he was not a believer in how these doctors are treating lyme, etc....... Anyway, two days later we got the positive lyme results and never went back to that doctor again. I am not saying that this will be the case with all Infectious Disease doctors, but the ILADs doctors are completely amazing at looking at the big picture and analyzing and treating ALL microbes. They will help you with strep and mycoplasma and parasites and viruses, etc.... Have you contacted ILADs yet to see if there was a doctor near you? Elizabeth

Justine: I just wanted to add this blurb about herxing that I found on the internet. Note the symptoms of fever and muscle pain: "The Jarisch -Herxheimer, or Herxheimer reaction, was named for the German dermatologist, Karl Herxheimer (1844-1947). Dorlands Medical Dictionary refers to the Herxheimer reaction as a transient, short-term, immunological reaction commonly seen following antibiotic treatment of early and later stage [infectious] diseases which [may be] manifested by fever, chills, headache, myalgias (muscle pain), and exacerbations of cutaneous lesions. The reaction has been attributed to liberation of endotoxins-like substances or of antigens (a substance which causes an immune reaction) from the killed or dying microorganisms."

The herxing can feel so scary. My daughter had some very rough times during the first few months of herxing. She responded very physically with sweats at night and teeth chattering and body aches, super enlarged lymph nodes, etc..... The motrin and epsom salt baths seemed to help a little bit. My son's herxing was always with an increase in "PANDAS" symptoms and his OCD and Tics would get worse, etc.... If things became unbearable, we would sometimes miss one dose and add tons of detoxing into the regime because herxing is usually a sign of toxins from the die off of the bacteria/parasites. If this is herxing for your son, this is often a sign that he is on the right medications and they are working! As time goes on, the herxing should become less intense and less often. As PacificMama said, I would check in with your doctor just to be safe. Elizabeth

Jodie: I completely understand how difficult this all is to wrap around your head mentally. I have been thinking about your son from your posts and I know IVIG was not a complete success, so I am happy that you have other avenues to explore which may lead to true healing. These blood tests are so very tricky and what is so frustrating is that sometimes the sickest people have a negative tic borne disease blood test due to either the antibodies hiding out in immune complexes or hiding out in other places in the body. It sounds like you are already seeing some herxing and the herxing can be very intense. It sounds like you are in good hands with Dr. J!!! Thanks for sharing and I wish your son and family healthier days to come!! Elizabeth

My son and I both got a strain of Bartonella from fleas or lice (which our dog brought home from the groomers). We both immediately developed a bartonella rash. I believe this is a different strain of bartonella than the strain you can get through tics. I think the jury is out about lyme though. I have read that this is more difficult to get from fleas and other bugs, but there are a few doctors who say you can. Elizabeth

Both my 11 year old daughter and 8 year old son have lyme disease. We used IGENEX. My husband and I are supposedly negative for lyme, although I did have an IND result on my IGG 31 and 34 bands. Elizabeth

Pixesmommy: I would contact the 1-800 ILADS number to find a doctor closest to you who specializes in all of the microbes. These doctors will help your family with your strep issues and they will also search to see if there are other bacterias, etc... that are preventing your family from completely getting rid of the strep. Elizabeth

I completely agree that we are all not in a position to tell anyone that they have an illness or disease. I do not have the qualifications to tell anyone that they have lyme disease. I thought I was responding to someone who said their doctor said they had a positive lyme test. Perhaps, a miscommunication. The great thing about a really good LLMD is that they do not just look at lyme, but they look at all microbes. Our LLMD just found mycoplasma and staph in another PANDAS patient and did not find lyme. This child had TICS are their primary symptom. So, I do not think this is a discussion about Lyme versus PANDAS, but about clearing all of the microbes that are creating an imbalance or an autoimmune response in a person. My son had lyme, babesia, bartonella, mycoplasma and strep. Clearing all of these microbes has has been life altering for us and he is finally able to go to school for the first time in a year. I think these a good debates and I feel that they are important that we are just trying to help each other and learn from each other. elizabeth

I just want to add here that lyme is just another microbe that can create "PANDAS" symptoms. Lyme is a microbe just like strep and mycroplasma are microbes and lyme is not necessarily a different diagnosis than PANDAS. I do not believe that these are two different illnesses. My son had elevated strep titers and reacted to strep and also had lyme has one of his microbes that affected his "PANDAS" symptoms. Why differentiate between the microbes? There are many PANDAS kids without elevated strep titers and maybe they have other microbes creating their PANDAS symptoms? In order to heal all of these children on this forum, we need to be open and help each other with all of the different bacteria that can create psychological/neurological symptom! elizabeth

Cobbiemommy: This is a great post. Thank you for sharing the news that your son is doing better!!!!! Elizabeth

After almost 2 years of "PANDAS" issues and tremendous amount of family toxicity and emotional pain, I just have to say that these lyme doctors are few and far between (just like the PANDAS doctors) and I cannot say enough or give them enough kudos for what they are doing for these children/people. Please remember that they are dealing with ridicule from their physician peers and they are constantly protecting their medical licenses in order to help an epidemic of suffering people. I am still in shock that we are dealing with lyme because our symptoms were mostly psychological and I am in awe in terms of what these "microbes" can do to the mind and body. Our LLMD recently told us the Dr. J has paved the way for all lyme doctors. Elizabeth

Justine: We see our lyme doctor every 6 weeks and he changes a few things during each appointment. Currently, almost 6 months into lyme treatment and 1 year of antibiotics for PANDAS, our son is on Tindamax and biosil and bolouke (both natural products) for the cyst form of lyme and Mepron and Artemisinin for the babesia. He began his treatment with a good 4 1/2 months of azithromycin and omnicef. He is doing fantastic and doesn't really have any "really bad" days anymore. He is ranging between 90% on a bad day to 95% on a good day with the last few days being 95%. The charcoal really helps with the herxing and you may see quite a bit more herxing than you already are right now. The first couple of months can be bumpy, especially when you add the second antibiotic into the regime and you begin to see some real die off. Have you added a second antibiotic yet? And if so, what antibiotics is your son on ? I do give the antibiotics and herbs and Mepron all together and than I space the charcoal and probiotics a couple of hours out. Elizabeth

Well, we definitely change things frequently around here. Initially, when we began the multiple antibiotics for the lyme treatment, we did 6 charcoal pills every night followed by 6 probiotics every night. There is so much die off initially with treatment that I felt the daily detox was very important. And if we had a couple of bad days in a row, then we only did charcoal and did not use the probiotics. The only reason why is that my son will only take so many pills and 12 is quite a bit for an 8 year old in one sitting. Now we alternate and so no, we do not do the probiotics every night, but do a very high dose on the nights that we do use them. elizabeth

Gosh, this was our life at one point in time as well. My son could not go to sleep and then when he did fall asleep, he would wake up a few hours later with horrible hallucinations. And then he would be up for the day at 4:00 in the morning. I think this is all part of the inflammation. Melatonin did help my son go to sleep, which was very helpful, but did not keep him asleep. So, I would recommend the melatonin for at least part of the problem. Is your daughter currently on antibiotics? Elizabeth

Emerson: Pitand's definition is: PITAND - Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders Basically, I believe PITAND refers to the same symptoms as PANDAS, but with a different microbe than strep causing the symptoms. So, for instance, some families have children with PANDAS symptoms who do not have elevated strep titers or have PANDAS symptoms in response to other infections, such as mycoplasma, lyme disease, bartonella, etc.... After all that our family has been through this year, I would highly recommend that you do the IGENEX test to confirm the lyme aspect of this illness and double check the mycoplasma titers because elevated IGG levels have also caused problems for many of these children. I know that Texas is lacking in ILADS doctors. Please feel free to PM me about some potential doctors who are close to you and I would still contact ILADS to get their list of doctors who are near you. Elizabeth

Emerson: Like Grace is saying, you have just discovered one of the microbes that is probably causing your PANDAS, or PITANDS, symptoms. My son has every single PANDAS symptom listed on Dr. K's website and he also has lyme as one of his microbes and he is doing fantastic on the lyme treatment. And strep was the trigger for his PANDAS symptoms, but not dealing with the lyme appropriately was hindering him from fully healing. Lyme treatment usually entails multiple antibiotics (bactericidal and bacteriostatic) at one time and for long periods. I think the most important thing you can do would be to find an ILADs doctor to help you navigate the lyme disease. Lyme can be tricky to treat because there are often coinfections and ILADS doctors are very skilled in treating all of the microbes, including strep and mycoplasma. Below is the ILADs website: http://www.ilads.org/ Good Luck and keep us updated. Just remember that Dr. J in CT says that these kids always get better!! Elizabeth

Dawn: I believe that unlike most antibiotics, Biaxin is both bactericidal and bacteriostatic. It is great for strep, mycoplasma and lyme disease. I do not think, however, that it can be used for long term treatment, unlike some of the other antibiotics. Elizabeth

Wendy: Thank you so much for sharing your information. Again, I just want to reemphasize how important the IGENEX lyme and coinfection testing is for all of these children with PANDAS. You have done such a fantastic job in searching for the answers! Elizabeth

Hello: We are working with a nutritionist who feels that repairing the gut and ensuring proper detoxification are critical to healing the body. So, every other night, we give our son 12 capsules of 50 billion units each of probiotics for a total of 600 billion units. And then every other night we do the same, but with charcoal pills. However, when we were just starting the lyme treatment and our children were herxing quite a bit, we incorporated the bentonite or charcoal pills more frequently than the probiotics. This really seemed to help both of our children. Elizabeth

Yes, my daughter is in school and my son is finally starting school, after being out for a year. So, I just give them either 12 charcoal or 12 probiotics every night before bed. I do not give them charcoal or probiotics during the day. I do still find it a struggle to get everything into them!!! elizabeth

We combine antibiotics, herbs, supplements and Mepron after breakfast and after dinner. Then, a couple of hours later, we do the charcoal and/or probiotics. We are in a phase now where we do not have as much herxing so I switch off between the probiotics and the charcoal every other night. Elizabeth