JTs-Mom

Yes, mycoplasma is a common coinfection of Lyme. From what I understand, ticks can actually transmit certain strains of mycoplasma, but also a person with Lyme is simply more susceptible to other infections, such as mycoplasma pneumoniae, due to a weakened immune system. I think this was the case for my son. He tested positive (quite high) for mycoplasma pneumonia (and had some symptoms for several months before testing), but I believe it was a secondary infection that he acquired well after the borellia infection. (He had Lyme for 2 years before being diagnosed.) Monarchcat - I would also recommend testing through IGeneX unless you and Dr. B are both comfortable with the results from Imugen. If you read the info about Lyme on the Imugen website, you'll see they are very dismissive of chronic Lyme disease and strictly follow CDC criteria.

I agree with Justine. Unfortuntately, band 41 is a mystery. From my understanding, it is representative of the flagella portion of bacteria. So... it CAN be Lyme, but it could also be any other type of bacteria with flagella such as H. Pylori, E. Coli, Salmonella, etc. So... that's why most docs would usually want to see other bands besides just 41 before concluding Lyme. A history of a known tick bite with just band 41 might be a little more persuasive for concluding Lyme. I agree with Elizabeth that your son should get the IGeneX western blots if you live in an endemic area, he has a history of a tick bite, or you just want a more conclusive test. My son was CDC negative, but he had positive bands 31 and 34, plus 3 others. (He was positive by IGeneX criteria.) As Elizabeth has mentioned, 31 and 34 are very indicative of Lyme, and my son had a history of tick bites 6 months prior to his symptoms starting. Band 31 has some cross-reactivity with viruses and IGeneX has methods of dealing with that, but they also have a 31 kDa epitope test that can confirm that the positive reaction at band 31 is due to borrelia and not some type of virus. My son was also positive on that test. Good luck!

My ds had one incident of bowel incontinence plus a couple bouts of urinary incontinence (both daytime and nighttime) about 4 or 5 days after he started taking both Azith and Omnicef. We weren't sure which abx caused it so we pulled him off both and put him back on Amoxil. (My son has Lyme, not PANDAS... just FYI.) I restarted the Azith a couple weeks after he had been back on Amoxicillin and he had no problems. Just this week, we restarted the Omnicef and he hasn't had any issues. I think loose stools is a more common side effect of abx, so I really try to push the apples, bananas, rice, and toast to help fight this. I also do probiotics twice a day... approx. 100 billion cfu at lunch and again at bedtime, and S. Boullardi (sp?) at breakfast.

For anyone who is interested... this info was posted on LymeNet.org. Lyme & Tick-Borne Diseases Forum Wednesday, June 2, 2010, 7-10PM To help the public, officials, physicians and constituents learn more about tick-borne diseases, Congressman Christopher H. Smith is hosting this Lyme and Tick-Borne Diseases Forum. Featured speakers will include national experts on treatments and testing for Lyme and other tick-borne diseases, on ticks and pathogens, and on the impact on patients. Forum Location: In the Wall Township NJ Municipal Building (Monmouth County) 2700 Allaire Rd Wall, NJ 07719 (behind the Wall police station and Wall library) An audience Question & Answer session will follow presentations from the following speakers: Dr. Joseph Burrascano, MD, an Internist, is recognized internationally as a skilled Lyme disease clinician and founding member of the International Lyme and Associated Diseases Society. He has authored a number of papers and three textbook chapters on Lyme disease and has provided expert testimony before state legislatures and before Congress. He will focus on the clinical diagnosis and treatment of tick-borne diseases. Nick Harris, PhD, is the founder and CEO of IGeneX, Inc., a specialty laboratory devoted exclusively to patient testing and research related to Lyme disease and its associated co-infections. He has spent over 25 years researching and developing tests in this underserved area. He will focus on the role of the laboratory in the diagnosis of Lyme and its co-infections. Ellen Stromdahl, PhD, (invited) is an Entomologist with the Tick-Borne Disease Laboratory for Entomological Sciences with the US Army Public Health Command. She will focus on tick species found in the US and the pathogens they carry, focusing on New Jersey and the Northeast. Pat Smith, President, national Lyme Disease Association (LDA), is a Member of the Columbia University Lyme and Tick-Borne Diseases Research Center Advisory Committee and former chair of the Governor’s Lyme Disease Advisory Council (NJ). She will focus on the spread of Lyme disease, its impact on patients, and what is being done. http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24680

Thanks for posting this. I think it is extremely important for everyone to know how insidious Lyme Disease, and the many coinfections that go along with it, can be. It can manifest in many different ways and look like MANY other diseases/disorders/conditions, including tic disorders, Tourette's, and OCD, just to name a few. Although the disease is 'recognized' by most docs, most have NO CLUE how to treat it properly. After my son's tick bites, his pediatrician prescribed the WRONG antibiotic (she chose one that is ineffective for Lyme) and the script was for a completely inadequate length of time (5 days) even if it had been the right one. I didn't know anything about Lyme Disease at the time, and sadly my son paid the price for both of our ignorance. Thanks to this board (someone posted an abstract on Lyme Disease presenting as Tourette's.... THANK YOU!), I sought testing for my son and he was positive for Lyme. Because of a weakened immune system, he had also acquired mycoplasma pneumonia. He is currently in treatment, but unfortunately he went undiagnosed/untreated for almost two years. I know many parents on here have already sought testing and confirmed PANDAS, but for those who are new and still exploring, this is just a reminder to look at ALL possibilities.

The sites below will give you referrals based on where you live. If you are looking for one that treats children, you'll need to specify that in your request, since not all of them do. Lymenet.org “Click on Flash Discussion, and then click on Seeking a Doctor.” You will be asked to provide your city, state, and contact information, and a Lymenet.org forum member will contact you with a physician referral. Lyme Disease Association Doctor Referral Service: Visit www.lymediseaseassociation.org and click on Doctor Referral.” You will be asked for your contact information and a referral will be provided. International Lyme and Associated Diseases Society (ILADS). Visit their website: www.ilads.org or call them at 301-263-1080.

Since your son is complaining about joint pain, have you considered Lyme Disease? It may be a long shot since the gymnastics could certainly explain the aches and pains, but it might be worth checking into since Lyme can cause joint pain AND neurological issues, including motor tics. I read on this board about Lyme disease causing motor tics and remembered 2 tick bites my son had 6 months prior to his motor tics starting. I had him tested and sure enough, he was positive. Many people with Lyme don't even remember being bit by a tick.

Fixit - I did the complete panel for Lyme and coinfections. I think it was around $1100, but I don't think you need to start with all of those. Really, I think the western blot IGM and IGG would be a good start. My son has had motor tics for 2 years. He is 5.5 years old. We just started treatment about 3 weeks ago. His tics got worse at first (then came back down to their usual frequency). I have read that this is due to die off. So far, we have seen minimal improvement. Last fall, we saw very quick improvement on amoxicillin (for other things.... strep and URI), but not this time. I think the infection went deeper after those 2 bouts of abx, so it will be more difficult to get rid of now. I've heard from several other parents whose kids have motor tics... some have indicated the tics are gone or rare, while others have said the tics are still there even after years of abx, but are not nearly as prominent as they once were. My son's doc thinks he might have babesia, but we are focusing on the Lyme right now.

I just want to echo what Joanne has stated... be sure to consider Lyme when exploring the possibilities. My ds would have surely receieved a diagnosis of Tourettes if I had not pursued testing for infections based on info I had read on this board. He tested positive for Lyme through IgeneX, as well as mycoplasma pneumoniae through a different lab. His Lyme test is negative according to CDC criteria, yet he had positive bands on the western blot that are VERY specific for Lyme (31 and 34), that the CDC excludes. This is why it is important to use a specialty lab when testing for Lyme so that ALL of the relevant bands are reported. When my son's motor tics started I didn't even think of Lyme, even though I knew he had tick bites 6 months prior. I had never heard of Lyme causing motor tics. Well... I now know, and have recently heard from quite a few parents, some on this board, and others on Lyme specific boards, whose kids have motor tics caused by Lyme. The good news is that they have all reported improvement on antibiotics, the bad news is that it can be a LONG road with Lyme and coinfections. I am really beginning to think that infectious agents may be the root cause of many chronic issues, but many doctors are just too busy (or any number of other reasons) to look for them.

Kara, Has your dd ever had any tick bites? Just wondering if Lyme Disease might be a possibility. Looks like you are in an endemic region of the country. Lyme has manifested as OCD in some children. In my ds(5), I believe it is what's causing his motor tics. He just recently started on abx. I know you saw improvement on Omnicef, and I know Omnicef is used to treat Lyme. Just something else to consider in addition to PANDAS. Mary Beth

Since your ds was positive on the ELISA, you should consider getting an evaluation by an LLMD (Lyme-literate doc) or, at the very least, consider getting the WB done through a specialty lab such as IgeneX or Clongen. You can order the western blot test kit yourself. You just need a doctor to sign the order and do the blood draw (or give you the necessary paperwork for the blood draw through another lab). We are now seeing a DAN doctor who has been very cooperative with any tests I have wanted to run for my ds. If your current doc will not cooperate, I'd find one who will. I definitely think Lyme is an avenue you should explore further.

I think I read somewhere that you can ask the labs (that don't routinely report those bands) to do so. I'm not positive though. PacificMama or Lyme Mom might know. I'm just not sure that those labs will do as well at analyzing the blood sample. IgeneX specializes in testing for tick-borne diseases so they see it all the time and know exactly what to look for. I think it depends on your insurance whether testing through IgeneX would be paid for. If you have a PPO... maybe (though you'll likely have to pay out of pocket then submit a claim for reimbursement.) I have an HMO and they won't cover anything 'out of network', so we had to pay out of pocket.

My DAN doc tested for mycoplasma pneumoniae (IGM and IGG) through LabCorp. We used IgeneX for the borrelia (lyme) and bartonella tests. I believe Clongen is another good lab and possibly Medical Diagnostics (not positive). I'd recommend the western blot tests (IGM and IGG). Just be sure the lab reports bands 31 and 34 on the western blot (some don't), as these are important indicators. You can actually order the test kit from IgeneX and they will mail it to your house free of charge. You can then take it with you to the doc's office and have him/her sign the test order paperwork. They drew the blood at my doc's office, then gave it back to us in the test kit to drop off at FedEx. (They did offer to ship it out for us from their office, but said it wouldn't go out until the next day, so we chose to do it ourselves.)

My ds recently tested positive for mycoplasma and my DAN doc said we had several choices... erythromycin, zithromycin and one other I can't think of. I mentioned biaxin (clarithromycin) since I had seen so many on this board who were already taking it for mycoplasma and he said sure... that one would be fine also. My ds hasn't had any stomach issues with it. He takes it with meals and I think his dosage is 'by the book' for his age (5). My ds was both IGM and IGG positive, thus he appears to have a chronic case. His cholesterol level was found to be low (too low). I found several articles online indicating that mycoplasma feeds on cholesterol. So, if your doc hasn't checked cholesterol level, this might be something to look at also. My doc only prescribed 14 days initially, but when I emailed him the link to the article someone posted on this site regarding mycoplasma manifesting tics (my son's primary issue), he agreed to extend abx for another 2 weeks. We started the clarithromycin while awaiting other lab test results. (I decided to explore every major avenue I had seen on this board... PANDAS, lyme, yeast overgrowth, food intolerance, etc.) My ds had a known deer tick bite in May '08, so I had the lyme test done through IGeneX. I just found out on Friday that he is IGG positive for lyme. I now think the mycoplasma is a coinfection secondary to the lyme, and the neuro symptoms were likely triggered by the lyme. He was also found to have yeast overgrowth, probably due to being on abx many times in his 5 short years of life (ear infections, strep, URI). I think my son's case (and many others on this board) shows how important it is to check into every possibility. By the way, my son's lyme results would be negative by CDC criteria since they exclude bands 31 and 34 on the western blot.... some of the most specific bands for lyme, from what I understand. Had I not done the test through IgeneX or another independent lab that reports bands 31 and 34, I may never have discovered the lyme. If lyme is even a remote possibility for anyone on this board, I encourage you to use an independent lab that will report these bands. We are now starting the journey of finding a lyme-literate doc to treat my son, and I am hopeful that we will see improvement once treatment is underway.

Thanks for the info. I am highly suspicious of Lyme in my son's case. He had a tick bite (2 actually) in May '08 and neuro symptoms (motor tics) began 6 months later. There have also been some other interesting 'coincidences'... reduction of tics on amoxicillan (for other reasons) and recent mycoplasma infection (a common coinfection). I'm exploring this avenue now... anxiously awaiting IgeneX results, but still planning to consult with a Lyme expert regardless of + or - .

I believe it varies by practitioner. My son just started seeing a DAN doctor who is a family practice MD that accepts most major insurance. His practice is made up of 80% autistic kids. He has an autistic child himself, so he's been active in that community.

My ds(5) is taking antibiotics for a mycoplasma pneumoniae infection, but I am concerned about yeast. He has been on antibiotics a lot in his 5 short years of life and twice last fall. He has shown a few symptoms, so I'd like to go ahead and treat it. I am currently giving him probiotics, but am not sure if that's enough to keep the candida in check. Is it OK to give candida treatment (such as Candida Clear or Candex) while my ds is taking antibiotics or should I wait until he finishes the antibiotics? I don't want to do anything that will reduce the efficacy of the antibiotic because I am also concerned about the mycoplasma. Any thoughts on this would be appreciated.

Fixit - I have been wondering the same thing .... do I try to avoid the things the mycop feeds on or do I increase his cholesterol intake (my son's cholesterol was quite low) to draw it out of its hiding places so the antibiotic can better get to it ????

Cheri - Don't worry... your message is getting through loud and clear (at least for me anyway). Thanks to this board, I decided to seek out a DAN doctor in my area who would (hopefully) run a bunch of diagnostic tests to look for any and all possible underlying conditions that could potentially be causing my son's tics. Fortunately, he was willing to order many of the tests I requested. I specifically mentioned mycoplasma after reading it on this board and sure enough... he has it. We are also testing for Lyme and related coinfections (my ds had a deer tick bite in 5/08, but has never been tested), yeast, food intolerance, and a few other things... still waiting for those results. The test results we have already received also showed my ds has low cholesterol (too low)! I have since found several articles indicating that mycoplasma feed on cholesterol! Like Fixit, I am frustrasted with conventional medicine docs who constantly blow you off as the 'paranoid mom'. I am not convinced that mycop is THE cause in my son's case, but I am extremely glad we found it and am very curious to see what happens with this course of antibiotics. My ds was on antibiotics twice last fall and both times I saw a significant decrease in his tics. At first, I thought it might be coincidence, but the second time I really began to wonder if there might be something to it. I do not suspect PANDAS because my ds had strep in Oct with no exacerbation of symptoms and his titers have been tested twice... normal. I have actually searched through old posts when researching a specific topic, but I had not seen those articles, so they were very timely for me. One of the articles mention a 4-week course of antibiotics, which is what I would prefer (rather than 2). I understand there is some risk to long-term antibiotic use (though 4 weeks doesn't seem excessive to me), but we are talking about the potential of bugs in my kids brain here! To me, the risk of NOT treating for a longer course and running the risk of not fully eradicating the bugs is far greater than the risk of a few more weeks of antibiotics. I'll continue to explore as many paths as possible until we run out of paths... then, if it's TS, it's TS. Thanks to everyone on this board for continuing to share info and ideas!

Thanks so much for posting these!! My ds just tested positive for mycoplasma pneumoniae (both IGM & IGG). My doc only prescribed 14 days of antibiotic and I fear he may need a longer course since the infection appears chronic. These articles may help me convince him!

Thanks for the info. I'd love to hear from others who've tried the mouth appliance from Dr. Sims, Stack, Garcia or other doc. I think my son is a bit young for it right now (non-compliance would be a big issue), but am curious (for future consideration) if anyone out there is having a good experience with it. Please keep us posted on how well it works for you.

Does anyone know anything about Life's DHA algal oil by Martex? It's a vegetarian source of omega 3. My family doesn't eat fish and I can't even stand the smell of the fish oil capsules. I'm wondering if I should try it or if I'd be better off with flaxseed oil.

Hi Laurie, The questions the OT asked are very curious. My son is 5 and I also suspect he has TS. He also throws things (not all the time though... just when he is really frustrasted/mad). I recently read that TS can be associated with a quick temper which he DOES have. As for saying "butt" all the time, I thought all 5 year old boys had a bit of a fascination with those types of words (butt, poo, pee, fart, etc.) Perhaps not. My son has been on a poo poo and pee pee kick lately. I hadn't attributed it to the TS, but perhaps need to rethink that. I'm not sure what to make of your son's behaviors. Some do sound like they could be tics (screaming, belching, throat clearing) if they happen consistently enough. Others sound more like they could be OCD type behaviors/tics (licking things). I'm no expert though, as I've only been dealing with this for a little over a year. There are others on this board who've been dealing with TS a lot longer. Hopefully they will share their thoughts also. Cheri is right though... there are a lot of different things that can trigger tics, so it is worth investigating. I am just beginning this process myself. I would recommend you push the doctor for some testing. I saw a pedi neuro about 2 months after my ds' tics started and was told "it's probably transient", then we were sent on our way with no testing. Well... here I am a year+ later wishing I had pushed for more testing early on. We are seeing a DAN doctor next week, so I'm hopeful he will order all the tests I want done. Hang in there! Mary Beth

I posted on the TS side, and Faith suggested I try over here also. My ds had a deer tick bite in 5/08. I didn't recognize it as a tick (had never seen one before... thought it was a tiny blood blister.) It was removed after 4 days and he did have a small red spot at the bite site one week later. His tics started in 11/08. I did take him to the pediatrician at the time and she prescribed Keflex. I just recently read that Keflex is ineffective for Lyme, so I am getting nervous about it. My ds only has tics, no OCD or any other major behavioral issues, so I don't know if that fits for Lyme. I ordered a Lyme test kit from igenex.com, and I was planning to just get the IGG and IGM Western Blot, but the "Complete Lyme Panels" also includes Lyme IGG/IGM/IGA IFA Screen and Lyme Multiplex PCR Serum & Whole Blood. The Western Blots are $200. All of these tests combined cost $475. Can anyone tell me if the IFA and PCR are really worth it/necessary? Most of what I've read online with regard to Lyme testing references the western blot. Are the western blots reliable enough or should I really get the additional tests (IFA & PCR)? Any feedback would be appreciated (especially from Lyme Mom). Thanks!

Thanks Faith, I'll look her up.