JTs-Mom

I responded on another post, but thought I'd add my respond here too since this post is about yeast. The white tongue can definitely be a sign of a yeast infection, and I'm surprised that your dentist didn't mention it as a possibility. There are tests that his doctor can order (e.g the Organic Acid Test [OAT] by Great Plains Lab), but personally I would just ask for a prescription of Diflucan. If your doctor wants to run tests first before prescribing an anti-fungal medication, I would start on other over-the-counter yeast rememdies while you are waiting for the results. I give my son Candex and it does seem to help. (My son is on long-term antiobiotics, so yeast is a constant struggle for us.) I also ordered Candidate by Native Remedies, but haven't used it yet. I have also heard of natural rememdies such as Grape Seed Extract, Oil of Oregeno, Olive Leaf Extract, Pau d'arco, and several others, but haven't tried any of them yet. Hopefully others with more experience using the herbal remedies will give you some feedback. Plesae be aware that your son's symptoms might get worse before they get better when you begin treating for yeast overgrowth. There is a 'die-off' effect where the yeast release toxins when they die that causes symptoms to get worse. Once the body starts to clear the toxins, then symptoms will improve.

The white tongue can definitely be a sign of a yeast infection, and I'm surprised that your dentist didn't mention it as a possibility. There are tests that his doctor can order (e.g the Organic Acid Test [OAT] by Great Plains Lab), but personally I would just ask for a prescription of Diflucan. If your doctor wants to run tests first before prescribing an anti-fungal medication, I would start on other over-the-counter yeast rememdies while you are waiting for the results. I give my son Candex and it does seem to help. (My son is on long-term antiobiotics, so yeast is a constant struggle for us.) I also ordered Candidate by Native Remedies, but haven't used it yet. I have also heard of natural rememdies such as Grape Seed Extract, Oil of Oregeno, Olive Leaf Extract, Pau d'arco, and several others, but haven't tried any of them yet. Hopefully others with more experience using the herbal remedies will give you some feedback.

This is really sad, but also infuriating. The medical boards that are trying to 'protect' us are going to kill us. Here's the best part (NOT!)... the quote from the ID doc... "It's not that these people do not have real symptoms, but that medicine does not have a solution for them." Actually... medicine DOES, but medicine (mainstream) doesn't want to provide it due to... what else... cost. Oh, and absurd claims about the risks of long-term antibiotics. I'm not saying they don't have risks, but compared to a late-stage Lyme infection.... Seriously?? There are FATAL documented cases of Lyme Disease, not to mention the documented cases of blindness, disability, etc., etc.

What about elevated IGG's of these viruses...do they have the potential of giving a false positive lyme result? I honestly don't know, but my gut feeling is 'yes'. (That's certainly not based on anything scientific.) Did Dr. J see these test results, and did you specifically ask about the possibility of them causing a false positive on the Lyme test? If not, you might want to call his office and ask about it. I also believe that continually elevated IGGs are an issue that needs to be addressed. I think there's a reason that there is a 'normal' range associated with IGGs, so if IGGs are continually elevated above the 'normal' range, I believe that is indicative of a chronic infection or possibly an autoimmune process going on. Otherwise, after acute infection, you would see IGG levels rise, but then eventually drop back to within the normal range. That's all just my personal opinion though. I don't know if there's any scientific info out there to support that theory. I think this is another area where there are differences of opinion... some docs think elevated IGGs are nothing to be concerned about, while some think they are a concern.

I have never heard that band 31 is possibly a false positive so I will have to ask my llmd about this. Dr. Jones, the lyme pediatrician who has treated more kids with lyme than anyone in the world, told me that band 31 means that a person was exposed to lyme and it takes a year to show up. He and other llmds we have used have never said that 31 is possibly related to another infection and I have discussed band 31 with all three. Band 41 could be related to syphilis as you mention as well as a dental infection that is a spirochete. However, I am puzzled by the reference to band 31 in your post b/c I have been told that it is considered a very specific antibody for lyme. I had the band 31 confirmation test that you refer to but it was explained to me differently. I was told that it is used to look at an indeterminate band more closely to see if it matches a positive band 31 in their database. I see my llmd next week and will ask him about this and let you know what he says. My son's band 31 on the IGG was positive (not indeterminate), yet they still performed the confirmation test, which was also positive. This is what I found on a couple other sites... "IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses." "Sometimes bands 30-31 can cross react with viruses such as EBV. A 31 kDa epitope test can determine if band 31 cross reacted with a virus or not." So, this was just my understanding based on what I'd read on other websites. Kenneth Singleton mentions in his book the various viruses that can cross-react on Lyme antibody tests, thus causing a false positive. The excerpt at http://www.lymebook.com/chronic-lyme-testing-and-diagnosis lists quite a few. I don't think these viruses have flagella, thus they would not necessarily be cross-reacting at band 41. Dr. Singleton doesn't specifically mention what bands they might cross-react with. I'll also ask my son's LLMD next time we see her. She does believe in differential diagnosis, as does the Lyme-literate ID doc that we saw, so my ds has been tested for many of the viruses listed to ensure they aren't a factor in his case. I think it's a good idea to get a thorough diagnostic work-up, just to be sure nothing else is being missed. In my son's case, everything else is coming up negative, so... all roads lead to Lyme.

Just want to point out for anyone new to Lyme that there are certain viruses and other bacteria (HSV, EBV, HCV, or syphillis) that can cause a false positive result on the western blot, particularly the IGM. IGeneX even states this on their IGM results page. They have a test called the 31 kda epitope test that is specifically for the purpose of determining whether the reaction at band 31 is actually Bb or not. Of course, that test is not full-proof either, but if your child has high titers for any of these other viruses/bacteria, you should point this out to any LLMD that you see so that he/she can make a fully informed diagnosis. Also, if you haven't already done so, it might be worthwhile to pursue testing for HSV, EBV, and HCV to help rule those out as a possible cause of symptoms, as well as a false positive Lyme result.

Does anyone know if it matters if my son is on antibiotics at the time of the blood draw for the Cunningham test? Does abx alter the results in any way?

Wow! That is truly overwhelming. We just took my son to see this same doc and our regimen is much less intense. My son is very functional though, so I don't think she felt he was that bad off. He is 6 and his primary symptom is motor tics. Most of his motor tics are in his toes right now (flexing, flaring, curling) so there wasn't a real visible issue with him other than one lip tic (even though we told her about the toe tics). She is actually taking him OFF one of the antibiotics that he's been on for several months. I really wasn't too thrilled with that, but can no longer get the abx anymore because the other Lyme doc we had been getting it from is retiring at the end of this month. I'm not familiar with your daughter's symptoms, but I'm surprised she is going right to IV without trying orals first (or has your ds already been on orals?). Personally though, I would like to try IV for my son. While IV is a bit scary due to the risk of sepsis and a huge hassle, I tend to think it's the best option for late-stage Lyme. I really question whether these oral antibiotics are penetrating the CNS sufficiently to do much good, especially in my son's case where the primary region affected is likely the basal ganglia. From what I've read, this is a very deep region of the brain. There's a reason that even the IDSA guidelines say that IV is recommended for late-stage infections. (I'm not totally discounting orals though, as I have certainly heard that some people have gotten well on them.) Good luck with the treatment and please do let me know how it goes!

IGeneX uses 2 different strains of Borrelia burgdorferi, whereas most commercial labs use just one strain. IGeneX also uses a 12% solution instead of the 10% solution used by many labs. The higher % allows for greater separation of the bands on the western blot. Most importantly, IGeneX shows all of the bands, not just those that the CDC has selected for its surveillance criteria. Since IGeneX specializes in testing for tick-borne diseases, I would also assume their staff is very well trained in reading the western blots compared to staff at commercial labs that run tests for many different things.

Just curious what lab you used and what made you suspect Lyme (or was it suggested by your doc)? Are you seeing an LLMD?

Culturelle... but I give it AWAY from abx.

If you search Google Scholar for "borrelia and epilepsy", several interesting articles/abstracts come up. Here are a couple. http://www.ncbi.nlm.nih.gov/pubmed/8009148 http://wple.net/plek/numery_2007/suplement-3-2007/kacinski-38-40.pdf

Will do! We got in a little sooner than expected due to a cancellation in her schedule.

Sorry to hear your dd is having a rough time (and consequently you too). I'm in VA also and LLMDs seem to be few and far between here, especially ones that take insurance. We just went to see my son's LLMD a couple days ago (who does take insurance) and he said is retiring at the end of the month. Ugh! Fortunately, we had been on the waiting list for another LLMD in PA (who does NOT take insurance) and we have an appt next week. I just really wanted to have another closer one to work with as well. I have the names of a few in VA, but I think only 1 of them take insurance and I'm not sure if she takes kids. I tried to get my son in to see her and her office told me she didn't. However, my son was only 5 at the time. Since your DD is older, perhaps they might. I can PM you the names if you'd like.

I had an HMO at the time we tested, so I didn't even bother to try because they don't cover anything 'out of network'. If you have a PPO or fee-for-service (FFS) plan, you would probably have better luck.

Most often in the acute phase, I believe it is associated with respiratory type symptoms. It is the bacteria that causes "walking pneumonia". My son's main symptom was a cough. However, when the infection becomes chronic, it can cause all sorts of other problems. It is suspected in many cases of chronic fatigue and has been cited as the cause of motor tics in children. See Garth Nicolson's publication "The Pathogenesis And Treatment Of Mycoplasmal Infections". http://www.immed.org/illness/infectious_disease_research.html

Yes, both of these antibiotics should be effective for treating the mycoplasma. I don't think there is any way to know whether minocycline would make your son's tics worse until you try it. Just remember, with a lot of these treatments, things tend to get worse (for a short period of time) before they get better. A doctor does have to sign the IGeneX test form. I don't know if they accept specimens from other countries. I'd suggest you call them and ask.

Other lake/stream type microbes include cholera (vibrio cholerae), e coli (escherichia coli) and other coliform bacteria. I haven't really looked into what type of havoc these can cause since I don't believe any of these are a factor for my ds.

I wouldn't assume this band pattern means definite Lyme without a thorough evaluation from a Lyme knowledgeable doc. It seems odd that she wouldn't have band 41. With Lyme, this is one of the first bands to appear. It is not specific to Lyme (meaning a person could have band 41 and it may be something other than Lyme), but if a person has Lyme, you would expect to see band 41.

My son is only 6, so we haven't tried Doxycycline. Thanks for the responses! Has anyone here tried doxycycline? My son is 9. I would also like to know if anyone has used it, thanks, Char

Was it your doc's idea to test for Lyme or did you suggest it? Just curious since most docs wouldn't think of Lyme right off the bat. You need to have a pretty strong antibody reaction to show up positive on a standard lab test. Hope you start feeling better soon!

Anyone know what "current wisdom" he's referring to in the following sentence? There is a reference number cited, but the reference list doesn't appear to be included with this particular article. "Because of the defense mechanisms inherent in the Bb and co-infections, current wisdom suggests that 18 months of antibiotics would be curative in many cases (25)."

Custom Probiotics (6 strain) powder My ds is approx. 55 pounds (6 years old). I give him approx. 400 billion cfu daily... 200 at lunchtime and 200 at bedtime. I also give him a Culturelle at bedtime (open up the capsule and pour the powder in his drink). That's another 30 billion or so.

Doxycycline can be used if your son is over age 8. It is also used for Lyme.

My son also tested positive for Myco P, both IGM and IGG, at the same time he was tested for Lyme. He was treated by his PCP with Clarithromycin (Biaxin) for 4 weeks. When we started Lyme treatment, we began Azithromycin which is also used for Myco P. His IGG level was still high 2 months after the initial test result, but it had come down some. We haven't tested it again lately, but he continues on the Azith so I'm hoping that covers it.