KeithandElizabeth

My son and I recently got Bartonella from fleas. Bartonella mimics PANDAS and it is considered the "cat scratch" disease. I agree with Wendy and I now believe everyone should do the IGENEX lyme test along with the co-infections, which include Bartonella. I would also include the IGG and IGM Mycoplasma tests and I would consider an elevated IGG and negative IGM to still be a possible current Mycoplasma infection. Elizabeth

Gosh, I really agree with LaurenJohnson'smom about every child doing the IGENEX lyme test!! Both of my children have PANDAS and lyme disease and the lyme disease really threw us for a loop because our son did not have any of the "typical" lyme symptoms. I have to say that so far, the lyme treatment has been amazing and has really helped both of our children dramatically. Usually, lyme is treated with multiple antibiotics at the same time in order to treat the lyme in the blood as well as the organs/tissues. On top of multiple antibiotics, an anti-cyst drug is used since lyme literate doctors now know that lyme will go into hiding from the antibiotics. And the dosage of antibiotics is shocking compared to what we were doing for our PANDAS treatment. I do wonder for our daughter, who never had IVIG, if she will even need it once the lyme treatment is over. Our son did have several high dose IVIG's and small dose IVIG's and he is now doing much better since we began the lyme treatment. Elizabeth

I completely agree with SF Mom. As I recall from one of your previous posts, your son had an almost positive lyme test in '08 with several indeterminate bands? The problem with lyme disease is that it can hide out. Have you checked your son's immune complexes (c3d) levels? This is another possible indicator of lyme disease. I also agree with Wendy in that the more I learn and read about bacteria's and viruses, the less I am inclined to believe in "pure" Tourette's or OCD. I would definitely consult with Dr. Harris in San Francisco. Don't give up!!! Elizabeth

Here is one article connecting infectious agents to Crohn's disease. The article mentioned that 40% of patients with Chron's disease had elevated streptococcal antigens. http://www.gastrojournal.org/article/0016-...0687-8/abstract Elizabeth

My daughter had a positive IGENEX lyme test after being on Azithromycin, but maybe there is a difference with biaxin. You can call the doctor at the 1-800 IGENEX number to verify about doing the IGENEX while on biaxin. I would say it would be important to find out because antibiotics alone do not usually treat Lyme disease since Lyme will eventually hide from the antibiotics and form into cysts. Most Lyme literate doctors will eventually treat the cysts with a drug called Tindamax or Flagyl. Elizabeth

Hello We are also dealing with Lyme and Pandas. So, did you once have a positive Lyme a and was it via IGENEX? LYME can go dormant and usually a Lyme doctor will incorporate a cyst buster such as Tindamax into the treatment to break down the walls of the cysts.

It sounds like your child is still fighting multiple infections. What antibiotics does Dr Jones currently have your daughter on? I would call his office in the morning to make sure you are on a good antibiotic for the positive strep. Azithromycin is usually good for both strep and Lyme, but not strong enough alone for Lyme. The immune complexes are strongly indicative that she is still actively fighting the Lyme and they can take a long time to go down. The high lymphocytes are also showing that your daughter is still fighting an infection. Have you checked the rest of your family members for strep?

You are correct in that the CD 57 cannot be used for kids. Some lyme doctors use the C3D and/or the ANA and C6 for kids since they all can help in tracking the illness. I know that a friend on this forum, whose daughter recently tested positive for lyme, just received an elevated ANA from Dr. Jones and her daughter's ANA was previous normal. Again, Dr. Jones's office just said that this was related to the lyme and should go down once the lyme was treated. Our lyme doctor does not actually use any of these markers. He goes based on the IGENEX tests, muscle testing and symptoms. So, every doctor is so different. Elizabeth

The C3D marker for auto-immune and/or inflammation is used for so many different diseases to track the progress of the illness. Now that we are in the lyme world, the C3D marker is heavily used to monitor the lyme treatment. Dr. Charles Jones recently told another mom on this forum whose daughter had a very high C3D level that that number would go away with the lyme treatment of multiple antibiotics. I am curious as to the direction Dr. K is heading in with the C3D marker. It seems as though not all PANDAS children have elevated numbers. Elizabeth

Post IVIG can be so dramatic. We are 17 weeks post our 1.5 dose IVIG and we have had a bumpy ride, but the lows keep getting better. I would say that at certain points, like 4 weeks and 8 weeks post IVIG, I thought we were failing. We are still bumpy, and I still get paralyzed, but I have to say that the further out you go from the IVIG, the better it gets. My son is currently ranging from 75% to 85% better now. I believe that Dr. K said that to only consider a possible relapse if you see a downward trend for greater than 2 weeks. Hang in there and PM if you ever need extra reassurance. Elizabeth

A few other tidbits about the IGENEX kit.... I believe you do need a MD signature on one of the sheets with their PIN number. You can only fedex it to them on a Monday, Tuesday or Wednesday because they want to make sure they get the kit before the weekend. And this is especially since the tubes do not need to be on ice, like the Cunningham test tubes. Just a note on lyme, since unfortunately, I am reading way to much about lyme since both of my children have lyme and its co-infections on top of the PANDAS. Lyme can lay silent for years and then present itself with another bacteria/virus. It is opportunistic infection and it can mimic 300 other diseases and illnesses. My son has zero symptoms of lyme and then did present with a bartonella rash when he developed the co-infection bartonella. He never had the joint pains, etc...... My daughter did have lyme symptoms, but she also had the co-infection babesia, which presents with more physical symptoms. Elizabeth

Hello: I called the IGENEX doctor to ask when we should do the blood test for our son post IVIG and he said after 4 weeks. Another mom on this forum recently had a positive IGM IGENEX test 11 weeks post IVIG and Dr. Charles Jones felt that the test was accurate. Elizabeth

I am so sorry.... I can relate to the pain your whole family is experiencing right now. I can say that our son always reacted to anyone else in the household who had the flu or even a cold. I would recommend using motrin as often as you can to help reduce inflammation. During our worst episodes, bentonite clay and/or charcoal pills really helped bring our son back. We would try to give him a cup of bentonite clay (you can mix it with frozen strawberries in the blender so you cannot taste it) or ten 260 mg. charcoal pills. Is your dose of antibiotics high enough? elizabeth

We are big advocates of the bentonite clay. We work with a nutritionist who guides us on how best to use bentonite and following is her You Tube video about what bentonite does within your body. I have to say that my son will not take bentonite, so I give him charcoal pills instead. My daughter takes 1/3 cup of bentonite a day. It REALLY helps with herxing, but we mainly use it to rid the body of acidity. Elizabeth

I just want to second what Wendy is saying in terms of possibly switching the antibiotic to azithromycin or omnicef. Our son had a relapse after his first IVIG and he was on Augmentin and then developed mycoplasma and lyme (which he could have had before the IVIG). Augmentin is not helpful with myoplasma and lyme disease. We also decided, per Dr. K, to not do any more IVIG's for a while. This has really helped our son. He said that his "money was on the one IVIG to reboot the immune system." He said to only consider another high dose (never the small doses) if we see a relapse for greater than 2 weeks. Good luck and we are thinking about you and your son. Elizabeth

I would definitely suggest to consult with a LLMD. And you have two great doctors in San Francisco, Dr. Harris and Dr. Strickler. Many lyme doctors consider anything with Indeterminate and 41 to be potentially positive. Indeterminate means that there was "something" there on the band. My daughter presented with mostly Tics (and mood lability) and her tics have almost dissipated with the lyme treatment. And, we live in Colorado, which is considered to be one of the lowest lyme states in the U.S. Of course, I am biased now that both of my children have lyme and PANDAS. I just don't think it could hurt to further evaluate. Elizabeth

Yes, both of my children have lyme disease and its co-infections plus PANDAS. cfrei: How are you currently treating the lyme disease? Elizabeth

My son is also having a hard time getting rid of the mycoplasma. He has been on azithromycin (8 months) and omnicef (6 weeks) as well as the herb Noni (6 weeks). My son also has lyme and bartonella so I am thinking that these co-infections have made it difficult to treat each infection alone. Elizabeth

I would also suggest having your son tested for lyme (via IGENEX) since you were positive for lyme disease and I believe the 70% of lyme cases test positive for mycoplasma. Zithromycin would be a good start (versus Augmentin) since it addresses strep, myoplasma and lyme. But if there is any chance your child does have lyme, Zithromycin would probably not be enough. Most ILADS lyme doctors use multiple antibiotics for lyme and then treat the patient for 2 months after the symptoms are gone. I know this can all be overwhelming, but I feel that there is so much hope once you treat the underlying infections. Elizabeth

Just to add our experience to this.... Our son's IGG Mycoplasma was greater than 5 (again, we do not know the actual number because 5 is as high as the IGG goes) and his IGM was considered negative. Our lyme doctor, who did not know of the results of our son's Mycoplasma bloodwork did muscle testing and said that Mycoplasma was doing more damage to our son than the lyme was doing to him. So, we are treating our son aggressively for the Mycoplasma and I am now wondering about these negative IGM values on the Mycoplasma tests. Elizabeth

Karen: I am so happy you are done! I think the headaches can last up to a week. Our son also had stomach aches for a couple of days after the IVIG. Where did you fly to to get the IVIG? Are you keeping your son on antibiotics post IVIG? My other big recommendation is to make sure you check the ASO/ANTI DNASE B titers on the whole family to ensure no one could be harboring strep in the household. I wish you so much luck with your old son next week. Elizabeth

Yes, we were treating our daughter for lyme, babesia, mycoplasma and strep. She no longer has mycoplasma and strep, but we are still treating her for the lyme and babesia. She is currently on 3 different antibiotics. Elizabeth

Stephanie: What fantastic news about how well your sons are doing!!!! So, how long are you supposed to use the Spirolactone? Elizabeth

I highly recommend the IGENEX over the Western Blot since my daughter had positive lyme results on the 31 and 34 bands of the IGENEX, which are not on the Western Blots tests and which are highly indicative of lyme. I would also recommend testing for co-infections. Elizabeth

The first 6-8 weeks can be very rough!!! You should then still see "bumps" after this time period, but your lows should be higher and I have heard that you will see continued healing throughout the year. Elizabeth