JTs-Mom

My son tested IGG positive through IGeneX (30+, 31+, 34+, 39 IND, 41+++, 58+). He also tested positive on the 31 kda epitope test through IGeneX. (For those unfamiliar with this, it is the test that confirms whether your result at band 31 is due to borrelia or possibly due to cross-reactivity with some sort of virus.) My son had two tick bites in May '08, with one being a nymph that was attached for 3-4 days. He developed a red spot at the site of the bite that persisted for several weeks. He was improperly treated by his pediatrician after the tick bites (wrong antibiotic). His neurological symptoms (motor tics) developed 6 months later. He has been diagnosed with neuroborreliosis by an LLMD. Lyme exposure has been confirmed by a pediatric infectious disease doctor (member of IDSA!) and a neurologist, though these two docs weren't ready to immediately attribute his symptoms to Lyme. They both wanted to run a bunch of tests. I'm actually not opposed to testing, so we are following through on some of their recommmended tests while continuing the abx treatment with the LLMD.

I've read that mosquitos have been found to carry borrelia (Lyme bacteria), BUT... whether they can transmit it is up for debate. It typically (NOT always) takes a tick quite a bit of time to transmit borrelia to a human host. Could a mosquito transmit the bacteria in a matter of seconds? I haven't found any information that definitively answers this. The mechanism for trasmission in a mosquito may vary greatly from that of a tick. Sorry... I know that doesn't answer your question. Just sharing what I've read.

I know this thread has veered far away from the original post, but just thought I'd add my two cents about the cost of LLMDs. At my son's previous pediatrician office, he got less than 15 minutes with the doctor at his appointments. They charged around $125 for each appt. Thus, the hourly rate for these pediatricians is $500 ($125 x 4 patients per hour). My son has an appt with an LLMD who charges $1100 for the first office visit. Sounds outrageous you say? Well... she allows 2-3 hours for the first appointment and thoroughly reviews all medical records, test results, and a chronology of symptoms provided by the parent PRIOR to the appt. So, in actuality, she is charging about the same hourly rate as the pediatrician with whom you get only 15 minutes. Furthermore, I would consider her a "specialist" because she is well trained in the disease that is affecting my son. So from that standpoint, her fee seems like a bargain to me!

Has anyone (Lyme Mom?) read the Baker's Dozen and the Lunatic Fringe? Just curious if it's any good. I bought it, but haven't read it yet.

You can also get referrals from the lymediseaseassociation.org website, though be cautioned these are NOT all ILADS trained docs and not all believe in long-term abx, but they will at least be more familiar with Lyme than your average doc and may be a little more open-minded, just not as fully versed as ILADS docs. I would use this as a back-up option if you don't get any responses from ILADS or LymeNet, but I think you will.

I also give my son extra vitamin C. It's an anti-oxidant, thus it should be helpful for overall immune system support. I was giving extra magnesium for a while, but haven't been lately. The magnesium is controversial... some docs believe it 'feeds' the borrelia (they use it to form biofilms), thus you shouldn't give it. Other docs feel that borrelia depletes the body of magnesium, therefore it is necessary to replace it with extra supplementation. Personally, I don't know what to think on this one.

Yes. I attended a Lyme support group meeting in our area (VA) and there was a lady there with Lyme who took her children to see Dr. Jones because she was concerned about congenital Lyme and thought one of her sons was "just off" (as she put it). They had been tested through IGeneX and had some positive bands, but were overall negative by both CDC and IGeneX criteria. Dr. Jones told her that he did not see evidence of Lyme in either of her children.

Philamom - Florastor (Saccharomyces boulardii) is sometimes referred to as a probiotic, but you are correct... it is yeast, not bacteria. So, dut is right on. You want to keep the antibiotics away from the probiotics and the antifungal away from the yeast. The former kills the latter in both cases. But, the antibiotics won't affect the yeast and the antifungal won't affect the probiotics, so you can give those things together, i.e. abx w/Florastor and antifungal w/probiotics. I also read that on the Florastor pamphlet (not to give it while on antifungals), but it doesn't seem much different to me than giving probiotics while on antibiotics. The point is that you are tyring to replace the "bad" types of bacteria and yeast with good types. That being said though, I did slack off on the Florastor while I was giving my son Diflucan, but I am absolutely religious about giving him probiotics while on abx. It is critical to helping avoid gut issues from the meds. I try to give probiotics at least 2 hours after antibiotics.

Well... I can't answer with certainty, but I can tell you what I am doing with my son based on what I've read and/or been told. 1. I think it would depend on the particular medication whether you can give it at the same time as the antibiotics. I would recommend thoroughly reading the information sheets that come with each medication. They list what types of foods, supplements, and other medications might be contraindicated and would therefore need to be avoided, either for a certain period of time, e.g. 2 hours before/after, or possibly altogether. I do think many medications can be taken at the same time as abx. Do you give the Flagyl and Azith once per day or twice a day? 2. I have been told by my son's doctor that 2 antibiotics can be given together and we are doing this now (Omnicef and Azith.) This is done all the time with Lyme. Again, I'd advise reading the inserts though just to be sure that the 2 particular antibiotics you are using are not contraindicated. You should probably also check with your dd's doc just to be sure. 3. I believe it is OK to give (bacterial) probiotics at the same time as the anti-fungal, and I have done this. The bacteria should not be affected by the anti-fungal med. I have also given the anti-fungal at the same time as abx. 4. Unfortunately, I think the activated charcoal probably needs to be taken away from both the abx and the probitiocs, which makes it a tough one to fit in. I'm not positive about that though, so hopefully someone else can provide more info on that. I do know how you feel. I have struggled myself to figure out how to fit everything in. I feel like I am shoving stuff at my son all day long. Perhaps you could try giving the meds in the AM (together if possible), send her to school with probiotics for lunchtime, give the antifungal when she gets home from school, 2 hours later give the activated charcoal, meds again around 6:00p (if your abx is twice daily), then vitamins/supplements, and probiotics before bed.

I'd love to go to either, but they're just a bit too far for me. I'm very interested in Dr. Corson's presentation at the ILADS conference and Dr. Hardesty's presentation at the LDA conference. I hope anyone who goes will share some info with the rest of us.

Also being in VA, I would sure like to know the name of the institution... so I can stay away! I agree... the arrogance of some docs is APPALLING! Some went to med school eons ago, subscribe to one or two magazines that they skim through each month, attend one conference per year, and think they are "current". Yet, they can't comprehend that a parent who spends COUNTLESS HOURS for months, or even years, researching a particular disorder just MIGHT know a thing or two about the current thinking, latest clinical studies, treatments that are working for others, etc.

I sent you a PM.

Trg Girl - An elevated IGG may be causing problems or it may not. Here's what LabCorp says on their website: Significant concentrations of M. pneumoniae IgM and/or a four-fold increase in IgG levels between the initial sample and the convalescent sample indicate an active or recent M. pneumoniae infection. Increases in IgG, without IgM, can also be seen with a re-infection. Ditto what Tired Mom said... Augmentin will not help if the symptoms are from mycoplasma. A macrolide abx is typically needed (e.g. azithromycin/zithromax or clarithromycin/biaxin). Tired Mom - I came across a few abstracts recently on macrolide-resistance being seen with mycoplasma. Since you are still seeing elevated IGM after such a long period of time with abx, you might want to check into this. I believe there are alternative abx that can be used such as minocycline or levofloxacin, depending on the age of your child. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1140515/ http://www.springerlink.com/content/k5741331xk0xm922/

What lab did you use for the Lyme testing? If you had it done through a commercial lab such as LabCorp or Quest, you might want to consider having it redone through a specialty lab (IGeneX, Medical Diagnostic Lab, or Clongen) if you have any reason to suspect Lyme, such as a history of tick bites. I think you've covered the 'main' three... strep, Lyme, and mycoplasma... that cause the type of symptoms typically seen on this board (i.e., tics, OCD, emotional lability, etc.) Bartonella is a coinfection sometimes seen with Lyme that causes a lot of neuro issues, so that may be one to check for. I've also read about Epstein Barr and yeast overgrowth causing related issues.

Staten Island, NY - Dr. Ernest Visconti My son was being evaluated for Lyme, but Dr. V said he wanted to check for PANDAS also. He said the treatment for PANDAS involves IVIG and antibiotics, so he is obviously a 'believer'. He's also a believer in chronic Lyme.

If the cough lingers, you might want to consider testing for mycoplasma pneumoniae. A cough was the primary symptom of this infection for my son. One of abstracts below seems to indicate that it is found more often in people with TS than the general population. My son's cough wasn't nearly as frequent though as what you have described. Just something to consider. These abstracts have been posted before, but I'm reposting in case you haven't seen them. http://www.psy-journal.com/article/S0165-1781(04)00208-2/abstract http://ajp.psychiatryonline.org/cgi/content/full/157/3/481-a

tpotter - I don't think that ALL kids with PANDAS are going to test positive through IgeneX, but if you have ANY reason at all to believe it is a possibility... known tick bite, endemic area, spend a lot of time outdoors, etc... then I would recommend testing. As I stated in a previous post, I do believe that it is possible to have a false positive test, especially the IGM western blot. IgeneX IGM results actually state "Infection with HSV, EBV, HCV, and/or syphillis (RPR+) may give false (+) results." I also think it is possible to have a negative test, but still have Lyme. Everyone's immune system is different and will mount differing responses. Overall, the testing just isn't terribly reliable. That's why I think it takes a multitude of tests for various infections to help rule things in/out. Jag10 - If you keep looking around on the internet, you will find statistics all over the board (from 30% - 90%) regarding the bulls-eye rash. The truth is probably somewhere in the middle, but I also think that atypical rashes (red, but not a bulls-eye) are under appreciated in medical literature, and LLMD's will tell you this also. About band 41... yes, that's basically it... any microbe with flagella (tail) can cause a reaction at band 41 such as E coli, salmonella, and others. That's why so many people have a positive reaction at this band. It is not specific for Lyme. As stated above, Epstein Barr (EBV), Herpes Simplex (HSV), and other viruses can cross-react at band 31 (and possibly others) of the western blot and make the band appear indeterminate or positive.

I think it should be clarified here (and also if a poll is done) that testing positive for SOME bands on the IGM or IGG western blot (whether IgeneX or another lab) does not mean the overall test result is positive. However, just because an overall test result is negative, it doesn't mean a person does not have Lyme. I do believe IgeneX testing is accurate, and I have heard of negative IGeneX test results (with only a few positive bands) on other Lyme forums. I do think, though, that there can also be false positives... particularly on the IGM. In addition to syphillis, certain viruses (Epstein Barr, Herpes Simplex, etc.) and other flaggelar bacteria (E. coli, H. pylori, Salmonella) can cross-react at certain bands (31 and 41 especially) of the western blot and make the band appear indeterminate or positive. IgeneX even states this possibility on the results. One study I read indicated that over 40% of the 'normal' (non-Lyme) controls tested positive for band 41, likely due to exposure to one of the flagella-type bacteria. My son's LLMD said esentially the same thing that was reportedly said by Dr. Jones... that a positive band 41 alone, with no known history of a tick bite, is not enough to determine Lyme. This article explains the sensitivity and specificity of IgeneX criteria compared to the CDC criteria for determining a positive or negative result. It's long, but very informative. You will see that they do report a few false positives, but overall have a much better detection rate for late-stage (chronic) Lyme. http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170380/ I am in NO WAY trying to steer anyone away from Lyme testing or a possible Lyme diagnosis. Quite the contrary... as I am confident in my own son's Lyme diagnosis. However, I do think it is important to consider testing for some of these other infections (EBV, HSV, etc.) if there is no known history of a tick bite. This would help rule out a false positive result and ensure you don't go down a path that you don't need to. (It's not a fun one.) That being said... I agree with some of the other posters that Lyme can truly be the underlying monster that can "look like" a thousand other things. Other infections can come and go, while the borrelia remain. In worse case scenarios, because of the weakened immune system, a layering of chronic infections can occur. It's horrid! I agree that a good LLMD can help sort it all out, but not all LLMD's are created equal (as in any field). Go in educated.

Hadn't seen this one. Thanks for posting!

Yes, it has been posted before, but it certainly doesn't hurt to post it again for newer members. This abstract, and one of the ones below, are what prompted me to request testing for my son. He tested positive (in addition to Lyme). See also... http://ajp.psychiatryonline.org/cgi/content/full/157/3/481-a http://www.ncbi.nlm.nih.gov/pubmed/19818942

Melinda, These are the types of viruses (Herpes Simplex, Epstein Barr, and Hep C) I was referring to in my other post about the 31 kDa epitope test. Since your daughter's epitope test was negative, I would suggest getting her tested for these viruses. It is possible that one of these viruses is causing a false positive result on her Lyme test. Mary Beth

Yes, Dr. C is in Cochranville. If she is the doc you are going to see, I think you'll be in good hands. I'd actually be very interested in hearing how it goes. I don't think we'll be getting in to see her until this fall. (I called in April and was told she had a 6-7 month waiting list.) In the meantime, my son is being treated by an LLMD in VA, but he's not well-versed with kids unfortunately. I'm also taking my son to a pedi ID doc in NY and a neuro in NJ, both of whom are familiar with Lyme from what I understand, in a couple weeks ... just for additional opinions.

Melinda, Yes, "some type of virus" means an actual virus rather than bacteria, which is what borrelia is. Borrelia burgdorferi (which causes Lyme Disease) is a spirochete bacteria... same as Treponema Pallidum, the bacteria that causes syphillis, which was known as "the great imitator" because it could mimic so many disorders. Borrelia is now known as the 2nd great imitator. Lyme coinfections such as Bartonella, Ehrlichia, and Mycoplasma are also bacteria, while Babesia is a protozoa. Your daughter's test results are interesting. The negative 31 kDa epitope test would seem to indicate that the reaction at band 31 is perhaps due to a viral infection (cross-reactivity), but with a positive titer and several other positive and indeterminate bands on the western blot, it certainly makes diagnosis more difficult. The LLMD will hopefully be able to help interpret the results and perhaps order some additional diagnostic tests to aid in diagnosis. Keep in mind, an LLMD is always thinking Lyme, so they will be more likely to "see" Lyme in the results. I'm not knocking LLMDs... in fact, we are on the waiting list for one of the top pediatric LLMDs in PA... but, I do feel it is important to try to keep things in perspective. We all know docs can be wrong (very wrong) and make mistakes in diagnoses, and that goes for all docs on both sides of the Lyme/PANDAS/etc. fences. With your daughter's history of c-diff, I agree you would want to be fairly certain of the Lyme diagnosis before proceeding with treatment. Perhaps you could retest in 6 weeks or so. Also, keep in mind, there are some 'natural' treatments (herbs) for Lyme that may be more tolerable for your daughter than abx, such as Samento, Banderol, Cumanda, etc. If you research the Cowden protocol and Buhner protocol, you will find lots of info. SF Mom - You're welcome... glad I can help. I have been researching Lyme non-stop since my son was diagnosed in March. I also feel I have a debt of gratitude to repay to this board because this is where I first saw info connecting Lyme to motor tics (late last year), which is what led to testing for my son, and his eventual diagnosis.

Hi Melinda, The 31 kDa epitope test is to confirm (or not) that the reaction seen on band 31 on the western blot is due to borrelia rather than some type of virus. Band 31 has some cross-reactivity with viruses, meaning if your daughter had one of the viruses that causes cross-reactivity at the time she was tested, then the reaction at band 31 may be due to the virus and not borrelia. What bands were positive on her IGM and how strong (IND, +, ++, or +++)? Does she have a history of tick bite(s)? Mary Beth

We did the 6050 (Complete Lyme Panel... which includes the IGM and IGG western blots, PCR, and IFA tests), 5090 (Complete Coinfection Panel... tests for Babesia and Bartonella), 488 and 489 (31 kDA epitope test for IGM and IGG). 488 and 489 are only done after the western blot is performed. There isn't a "CDC Western Blot" per se, they (the CDC) just use different criteria than IGeneX to interpret a western blot test as positive or negative for Lyme. Most labs that perform a Lyme western blot will only go by the CDC criteria to determine whether the test is positive or negative. The CDC developed their criteria for reporting purposes only. (Positive cases of Lyme disease must be reported to the CDC by medical practitioners.) The CDC criteria is very restrictive. IGeneX has developed their own criteria for determining a positive or negative western blot. They will show you on the test results whether your test is positive/negative according to CDC criteria and also positive/negative according to their own criteria. This article explains why the CDC criteria is problematic. http://www.lymenet.de/labtests/brenner.htm My son's western blot was done by IGeneX and he tested positive on the IGG for bands 30, 31, 34, 41, and 58. He was "IND" (which is indeterminate) on band 39. The CDC requires 5 bands on the IGG for a positive result, but they require a different 5 bands than my son has. The interesting thing is that some of my son's positive bands are MORE specific for Lyme than the bands that the CDC includes in their criteria. So, his western blot test result from IGeneX showed that he was negative by CDC criteria, but positive by IGeneX's criteria. I sought out a Lyme-Literate MD (LLMD) and he diagnosed my son with neuroborreliosis (neuro Lyme). This board is actually what led me down the path of investigating Lyme Disease. Someone here posted an article about Lyme Disease presenting as Tourette's. It never occurred to me that my son's motor tics could be due to Lyme, even though he had tick bites 6 months prior to symptom onset. I have since found a number of references to Lyme causing motor tics and many other symptoms similar to PANDAS and Tourette's. I have also talked with other parents (on Lyme forums) whose kids have motor tics, OCD, ADD, etc. from Lyme. It's a horrid disease.