rowingmom

@ lovemylittleguy - What you are seeing may be a herxheimer reaction. It is a commonly recognized symptom of antibiotic treatment in lyme circles. It was discovered when doctors began treating syphilis with penicillin. Syphilis is a gram negative spirochete like borrelia (bartonella is also gram negative). Strep is not, and as such should not produce herxheimer die-off reactions. Gram negative bacteria have two cell walls, and in between them is contained an endotoxin. When the bacteria dies this endotoxin is released and creates inflammation and an increase of inflammation-related symptoms. Ticcing was a major indicator of die-off and toxin build-up for us. Whenever we changed abx protocols or added stronger dosages ticcing would always be the result.

It sounds like a vocal tic. Ask your son if he feels a sensation and the sound makes it go away. This is called a premonitory urge. For a good description of simple and complex motor and vocal tics: http://www.mayoclinic.com/health/tourette-syndrome/DS00541/DSECTION=symptoms Before the onset of motor or vocal tics, you'll likely experience an urge called a premonitory urge. A premonitory urge is an uncomfortable bodily sensation, such as an itch, a tingle or tension. Expression of the tic brings relief. DD has displayed both simple and complex motor/vocal ticcing.

Good for you. I hope you can find someone in your vacinity. But just a heads up: you can't even depend on a LLMD to know everything about herxing, mutations, inflammation, cytokine pathways, coinfections. They will help you out, but you really need to learn as much about EVERYTHING as you possibly can. Our LLMD didn't tell me about detoxing, I learned about it here. Our LLMD started DD on supplements for MTHFR before we even tested to find out if she had any deletions, and the dose was much too high. I learned to start low and slow here, and that overmethylation was as bad as undermethylation. I learned about the usefulness of anti-inflammatories here, and expanded on that by adding what I learned from herbalist Stephen Buhner.

Metanx: Generic Name and Formulations: L-methylfolate calcium (as Metafolin) 3mg, pyridoxal 5'-phosphate 35mg, methylcobalamin 2mg; caps; lactose-, yeast- and gluten-free. The dose of Metafolin (3mg) seems a little high, and could be causing problems. We started out at higher dosages as well, per or LLMD. Our were originally 1000 ug metafolin (1 mg), 30 mg P5P and 2000ug sublingual methyl B12 daily. After LLMD noted hypermethylation reactions we decreased to this dosage, but only dosed on Mon, Wed, Fri. The methyl B12 is included in the capsule, and may not be absorbed well through the intestinal lining. We find sublingual works well for that reason. Some other issues may need to be addressed (CBS, SOUX) before methylated Bs are started, or you will be just causing a log jam in a different area of the methylation cycle. http://www.mthfrsupport.com/other-gene-mutations-that-must-be-addressed-before-starting-an-mthfr-protocol/ Overmethylating can be as problematic as undermethylating. Check LLM's archives. She has addressed this issue before.

We saw this with DD as well. She has had years of CBT and understands the correct way of reacting to any specific situation, and could always tell you when you asked "What should be done in this situation?". When she was herxing she was still able to articulate the proper behaviour response, but was unable to follow through. When she is feeling good she behaves wonderfully. No ODD, no attitude, no impulsiveness, no disrespect, just happy and helpful.

I just googled mentax. It's an antifungal: Mentax® Cream, 1%, contains the synthetic antifungal agent, butenafine hydrochloride. Butenafine is a member of the class of antifungal compounds known as benzylamines which are structurally related to the allylamines. Butenafine HCl is designated chemically as N-4-tert-butylbenzyl-N-methyl-1-naphthalenemethylamine hydrochloride. The compound has the molecular formula C23H27N•HCl, a molecular weight of 353.93, and the following structural formula: Not sure how that should be addressing MTHFR mutations, or am I not understanding you? Sorry.

Is your son taking supplements for the MTHFR mutations other than B12? Have you done 23andme, or just MTHFR testing? Sometimes other mutations need to be tackled before adding methylated B's. There can also be problems if supplementation dosage is too high. http://www.mthfrsupport.com/other-gene-mutations-that-must-be-addressed-before-starting-an-mthfr-protocol/ http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

If augmentin isn't working, it must not be addressing the infection properly. Or addressing the proper infection. You can't do this without a doctor, and I am not suggesting that you try this on your own. Is your doctor versed in Lyme and coinfections? Several children here that haven't improved with IVIG and treatment for strep have been found to have other underlying infections, that if not properly tested for or clinically diagnosed, will go unidentified. We found monotherapy to work in the beginning, but that didn't last long. Are there any doctors in your area with ILADS (International Lyme and Associated Diseases Society) affiliations who can do some testing for coinfections? Contact ILADS and they may be able to give you a recommendation. Most lyme and coinfections treatment involves much more than simply taking 1 antibiotic and using IVIG. This may be helpful for resolving an autoimmune response to strep, but it will not work if lyme/coinfections are involved. If what you are doing is not producing results, you need to investigate further.

We had the same problem with antibiotics (we didn't do IVIG) causing large die-offs and increases in symptom levels, especially ticcing. For this reason we also ended up pulsing DD on her more involved combination abx protocols. Only with pulsing was she able to regain a good baseline. Read up on MTHFR mutations and detoxing in the archives here. If these issues are not addressed with proper supplementation our kids can't get rid of toxins and recover properly.

Our daughter's insomnia was caused by her bartonella infection. Treatment has resolved the problem, but in the meantime we used benedryl and melatonin which worked for us.

Collective wisdom is a wonderful thing. I truely belive that DD would not be where she is now without this forum, our LLMD and Stephen Buhner's newer books. Please make sure the LLMD you find is ILADS recommended and trained. SFMom will head you in the right direction. There are other doctors out there that purport to be lyme literate but follow IDSA guidelines (short term abx and cured) and not the ILADS ones. The LLMD will test for lyme and other coinfections, but also provide you with a clinical diagnosis and long-term treatment if needed. If you find yourself on the lyme/coinfections path please do purchase Stepehen Buhner's book on healing the lyme coinfections of bartonella and mycoplasma. Buhner is a master herbalist who has throughly versed himself in the nature of these bacteria. All of his information is supported by journal references and contains a lot of medical explanations on the specific cytokine pathways and inflammation induced by each bacterial infection. http://buhnerhealinglyme.com/bookstore/ I would also suggest getting up to speed on MTHFR mutations by reading LLM's archives. Many of our children are effected by these deletions and need proper supplementation.

Welcome to the forum! We are from the Niagara Region of Ontario and when I found this forum and noticed several parents suggesting lyme and coinfections I thought, No Way! It was January, we had never had a EM rash. But, Yes Way. Our daughter fit the symptom list : http://www.latitudes.org/forums/index.php?showtopic=10804 Dr C's (a lyme literate pediatrician) presentation is listed at the bottom of the thread. Please open it and read it if your son has any other symptoms - ADHD, sensory processing disorders etc. We don't use full doctors name here because the doctors that treat our children are often persecuted by the IDSA and CDC for their treatment protocols. Lyme is transferred everywhere by songbirds, white-footed mice and deer. If you have any of these animals in your vacinity, lyme is a possiblity. Did you see The Nature of Things last week? It was on Lyme in Canada and discussed some of the conflicting attitudes you are likely to encounter. Lyme is now endemic in the St. Lawerence River area. I grew up there, a beautiful place. Our Ped Psychologist told me that IVIG is not allowed in Ontario unless the patient is incapacitated. We could not afford to pay out of pocket for it in the US, however we did find an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor) in Buffalo who believed in PANDAS/PANS and told me it was caused, in our case, by a bartonella infection, which can be one of the coinfections of lyme, which can also be contracted through contact with infected cats, fleas, tics and lice (some doctors even think sand flies and mosquitos). She treated our daughter for two years and we have now weaned from abx, with very good results. All of her ADHD, Tourettes and Asperger's symptoms have resolved. She still has some low level bartonella bone pain (upon extreme exertion), but is otherwise functioning fully. Please read my signature line for more information on our journey. If you have any questions about finding treatment in Canada, please PM me.

DD's symptoms appeared years before probiotics were initiated. I only started probiotics when DD started abx, although I changed her diet to gf before that (didn't help the IBS). Her IBS symptoms (can be a symptom of bartonella) disappeared as soon as we started abx and have not reappeared, independant of the amount of probiotics given.

While DD was taking multiple abx, we were using about 75 billion mixed cultures: Culturelle, Align, RenewLife UltimateFlora daily. Now with our herbal protocol I am giving everyone sauerkraut innoculated with the above mentioned cultures. 3 tbsp Mon, Wed, Fri. DH hates it, the kids eat it and I love it. I am hesitant to give more for fear of stirring up histamine reactions. WildFermentation is a good site: http://www.wildfermentation.com/making-sauerkraut-2/

Which infections was your doctor treating with 16 months of abx? Which abx did he use? Sorry, I'm not able to remember everyone's treatment protocols like I know some here can .

These infections can sequester in joint and cartilage tissue, in organs and in bone marrow. PEX will exchange plasma, but the reservoirs will still be capable of releasing viable bacteria. DD has never had any reactive IgM bands. As we treat lyme/bartonella her bartonella titers decrease, while her number of lyme-specific bands on the WB increase. The idea on that being, lyme and bartonella suppress the immune system to such an extent that it is unable to react properly. As the infection load decreases the immune system becomes more reactive and capable of producing proper antibodies.

We never hired a babysitter - things could escalate out of control too quickly. A few times we left her with grandparents and went to a movie (I could count them on 1 hand), but usually we didn't go out together. One of us was always with DD. Things are looking up - this summer we made it to 2 concerts! My fav - Depeche Mode and (you have to be Canadian to know this one) The Spoons. Yay!

I second LLM's opinion, and also disagree with your doctor. Because PANS is not caught early doesn't mean all hope is lost. Our daughter's PANS symptoms started in 2008. We didn't find the cause (bartonella) until 2011. We didn't use steroids or IVIG because they were not available (or financially doable) for us. We did use 2 years of multiple/combination antibiotics, and also addressed nutrition (Terry Wahls autoimmune paleo) and methylation (MTHFR deletion) with supplementation. DD has gone from being unable to function in a classroom, being unable to follow simple repeated instructions and raging with frustration because of it to a B+, A student, capable of doing her own work and comprehending new concepts (math, science etc.) within the classroom setting. Her ADHD, Asperger's, Tourette's and sensory processing disorder symptoms have all resolved. It is possible, we are doing it. DD is not 100% (she does have some residual herxing with changing herbal protocols, and her bartonella titers are still positive), but has been 95% for the last 6 months off abx.

The link to the article on Pediatric Lyme is broken. I have found another one: http://www.lymedisease.org/resources/children_pdf/CorsonPediatricLymeTalk.pdf Ann Corson: What Everyone Needs to Know about Pediatric Lyme Disease.

To edit the signature line: Top right hand corner of the forum page - click on your user name Click on "my profile" Click on black box "edit my profile" On the left side under "profile settings" click on "signature" Then make changes in the "edit signature" box.

I like reading the abbreviated case histories in the signature line as I have trouble remembering the specifics for each child. I know mine is a little long, but I want to get everything in there. I think a pinned resource would be great.

Where to find SUOX on 23andme? Discussion in 'Genetic Testing and SNPs' started by Ema, Nov 1, 2012. Copy thread to group Ema Senior Moderator Messages: 1,911 Likes: 1,326 Midwest USA Hello - Does anyone know where to find the SUOX information on the 23andme raw data? What should I be looking for to know if I have this mutation? Thanks, Ema Ema, Nov 1, 2012 #1 merylg Senior Member Messages: 719 Likes: 411 Sydney, NSW, Australia Hi Ema, 23andMe and Yasko test different snps for SUOX. Yasko looks at SUOX snp (variation) S370S. 23andMe does not test this one. http://www.holisticheal.com/media/downloads/guide-to-nutrigenomic-testing.pdf and here is a link to a sample "Methylation Pathway Analysis" http://www.holisticheal.com/media/downloads/john-doe-mpa-sample.pdf however, in the example given, the person has no mutation for SUOX. To see the SUOX snps that 23andMe tests, go to Account (top right hand corner), select from drop down menu "Browse Raw Data", type SUOX in the box labelled "gene". Three snps come up in my case. merylg, Nov 1, 2012 #2 Last edited by merylg, Nov 1, 2012 http://forums.phoenixrising.me/index.php?threads/where-to-find-suox-on-23andme.20142/ I hope this helps.

We saw the same response with penicillin VK treatment for strep. Ticcing resolved on abx, only to return when treatment was discontinued.

I know exactly what you mean by this - a mom thing. When DD first developed a high fever and became really quiet 2 days after her 15 month MMR, I just had a horrible, horrible sinking feeling. I just knew. It was the beginning of everything. 3/4 of the way through her lyme/bart treatment, when malarone was added there was a sudden calming. The continuous life-long movement/agitation stopped. We were driving to dance class, and there she was, sitting beside me, hands in her lap, looking out the window at the scenery going by. No finger chewing, no ticcing, no squirming, there was peace. This time I had a wonderful, wonderful feeling. This was the beginning of the end of her problems. She went on to redevelop ticcing etc with new treatment protocols, but the calmness has mostly remained. It was like she matured in that instant. I totally get the Pink Elephant thing too. Nothing is as it should be anymore, but has to be accepted.

I couldn't say ours was a measurable cycle, but DD did flare with any type of infection, viruses included. At this time of year there are certainly no lack of illness being spread through schools, so it may appear to be cyclic if your child is responding to every infection going around. Interesting that hugs2day mentioned flagyl, because we had the same clearing of cold/flu-related flares with tindamax (another cyst-buster). Although DD's tindmax was combined with other abx, so maybe it was the combination as well.