mama2alex

Hi and welcome to the forum. I tested neg for Lyme and coinfections for many years - and my doc used Igenex. This past spring advanced labs found spirochetes in my blood via culture. The tests that rely on the immune system to respond are extremely unreliable. I would recommend seeing a good LLMD (Lyme literate MD) - they will do a lot of testing but also take symptoms and medical history into account. Most if not all good LLMDs know about PANDAS/PANS and will check strep titers among many other possible culprits. You can start a new post asking for dr recommendations in your area/state and someone in your area will probably PM you with a name.

I have Lyme too, but over time have come to realize that my headaches had more to do with mold exposure than Lyme. Are you 100% sure your living environment is mold free? This could be something to revisit when you're able. (Sorry, I know this is not the "immediate relief" type answer you were looking for!)

I don't have much time to write, but wanted to welcome you to the forum. You don't sound nuts at all! There are others here who saw a sudden onset of PANS after a vaccine. I'm sure they will respond when they see your post. And 7 - 9 is a very common a age period for the onset of PANS. Our sons have a lot in common. My ds was also diagnosed with asthma, sensory processing disorder, and auditory processing disorder before he developed PANS just before his 9th birthday. He also had chronic constipation from about age 2 - 5. Kids can develop OCD/tics as part of an autoimmune response to things other than strep - vaccines, viruses, mycoplasma, Lyme and its coinfections, etc - often it's some combination of the above. You might want to get on Dr. B's wait list and then see if you can find a Lyme doctor (LLMD) in your area in the meantime - they know how to test and evaluate for all these infections, including chronic manifestations of them, which may be what you're dealing with since you've been seeing symptoms for over 4 years. In our case, Lyme and company turned out to be the underlying problem, and we've seen much improvement through that treatment, including treatment for coinfections and chronic viruses.

I'm not sure I understand your question Mayzoo, but in any event, I'm no expert on this, as we just tested our son for this - he did not turn out to have SAD. You might try searching the forum for "SAD" or "specific antibody deficiency." This topic has been discussed in the past.

I think there may be some confusion. The streptococcus pneumoniae titers check for antibodies to bacteria that cause ear infections, pneumonia, and other infections. They are not responsible for the strep you are thinking of (strep A/strep throat/the strep implicated in PANDAS). Doctors check these titers to look for a particular type of immune deficiency. The mainstream protocol is to vaccinate with a pneumococcal vaccine such as Prevnar for younger children/babies or PCV (Pneumococcal Conjugate Vaccine - 13 strains) and then recheck titers. If they rise a certain amount, your child is not considered immune deficient because they mount an immune response to the vaccine. This process does not check their immunity to strep and there is no vaccine for strep. The overlapping terms make it very confusing, but if you do some googling, it will become clear.

So sorry you've had a rough time! Is he taking anything for detox? I agree - Burbur is a good one. Our LLMD had my 65 lb kid taking 15 drops, 2-5 times a day for a while. He said you can do it more frequently with no side effects. If you suspect he's herxing, you need to detox, detox detox! There are lots of options. Good luck and enjoy your time off!!

I think that Lyme test is through Quest?? A better option would be Igenex testing. If you haven't given her abx yet, your best bet would be to run a Lyme culture through Advanced Labs, in addition to testing for coinfections through Igenex (VERY important to run co-infection tests). If at all possible, please get her to an LLMD asap to be tested for all possible infections. Even if you have to drive a few hours, it will be worth it. You won't have to deal with anyone not "believing" in this at a Lyme doc's office and once you know what infections you're dealing with, you'll be in a much better position to help her. Frankly, I don't buy the "just Tourette's" or "just OCD" diagnosis any more. I think there is something medical going on with all these kids. It's just a matter of figuring out what it is.

That's amazing and so interesting! My dad had Alzheimer's when he died and struggled with anxiety much of his adult life (don't know about childhood).

Is he back on the Azith? If so, maybe he needs to try another antibiotic this time. Have you done testing for underlying chronic infections such as strep, mycoplasma, Lyme and viruses? I'm so sorry you're going through this. Hang in there!

So if I'm understanding correctly, you're using the Motrin to fight the headaches brought on by the diflucan? Headaches are a common symptom of yeast die off, so you may want to start low and slow with anything that kills yeast and really focus on detox - such as lots of lemon water, exercise (just walking is enough) and anything else she tolerates - at the same time.

We finished the 3 week intensive program at Rothman 9 weeks ago today. It felt like a good time to share that we have seen amazing results. DS 13 has struggled with school anxiety and refusal (which also extended to summer camps) since sudden onset of PANS in June 2009. We've been able to resolve or improve many other symptoms with medical treatment, but this one just wouldn't budge. Last year, between Mono and school refusal, he missed about half the school year (including the last 6 weeks of school when he didn't attend at all), and we were beginning to think that he wouldn't be able to continue in a traditional school setting. Since seeing Dr. R for 3 weeks at Rothman, ds has gone to school every day for 8 1/2 weeks. There have been a few bumps along the way - especially in the beginning - and he's only made it in for 1/2 or 3/4 of a day a few times (maybe 4 days) due to anxiety. But on the whole, he seems to be on track and is feeling very proud of himself! As always, there have been a few potential obstacles to success - lots of homework, a mild concussion that's given him headaches and nausea, and kept him out of P.E. and recess the last few weeks, a new boy who's a bit mean - but he has pushed through all of these problems and we are just thrilled. In addition, we spent the first couple of weeks of therapy working on ds going to bed by himself, I think as sort of a practice run for the bigger issue of school. He has never gone to sleep without one of us in the room with him, but since seeing Dr. R. he has been doing it on his own. Dr. R (and I know there are other excellent therapists there) is absolutely incredible. I really don't know how he does it, but all of us learned so much. I think he was working on various levels of the problems simultaneously - talking about it, educating all of us on a more intellectual level, confronting Alex about behaviors, encouraging him, reworking routines for more consistency, doing gradual exposures with the bedtime routine, bringing up buried emotions, etc. I wanted to post this in case there's anyone on the fence about going to Rothman. I spent almost a year deciding whether to make the trek out from California, and my only regret is that we waited so long. Thanks so much to all who recommended this program to us and took the time to post, answer my questions, and talk on the phone with me!

I'm so glad things are going better. How long has she been on the Motrin? Ibuprofen (and all NSAIDS) cause gastrointestinal damage/leaky gut, so I would wean her off the Motrin if at all possible. If you find she still needs an anti-inflammatory, I'd talk to your doctor about what the alternatives are and the pros and cons of all the options. Restoring gut health is really important. Hope to hear more positive updates in the near future!

So happy for you! This is a great step - regular bowel movements are so important for detoxing.

You need to decide what is right for your child. Is it for Hep B? Because Hep B is contracted through unprotected sex or by sharing dirty needles. If you think your 5th grader might do either of these things any time soon, then it might make sense. (Apologies for the sarcasm, but I've always found it ridiculous that infants and children are vaccinated for Hep B without any regard for health status or family history of autoimmune disorders.) A number of parents on this forum have reported that a vaccine(s) kicked off PANDAS/PANS in the first place or caused an exacerbation, so the vaccine is riskier for your son than the general population. If he's still flaring when he gets sick, then his immune system is especially sensitive. Also, I hope you didn't let that school nurse push you into hurrying. They have no right to give you an end-of-day deadline on something like this. I agree with S&S - it smacks of bullying.

Great news!

This throws up all kinds of red flags. No good PANDAS doctor will rule it out without a lot of blood work, especially when the child has the hallmark symptoms of tics and OCD (even if mild right now). When you have a chance, please send PANDAS Network a quick email and let them know about your experience - they should not be recommending this doctor to desperate parents. Please get your dd to a good PANDAS or Lyme literate doctor - someone who will run a full battery of lab tests, including a blood test for strep, mycoplasma, Lyme and co-infections, viruses, parasites, heavy metals and methylation defects. Most of these can be hard to detect, but a doctor who's experienced with them can use the testing as a guide while making a clinical diagnosis. If you post your approximate location, forum members can recommend doctors in your area.

It sounds like there's something going on that's preventing her from healing. Have you done the 23andMe testing or just tested for MTHFR? Looking for any other methylation defects and treating those could help. I read one of your previous posts saying your doctors weren't really on board with this, but I think if you read the first 5 chapters of Yasko's book - http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf - it might help you understand why these genes matter for our kids. Some have found that KPU is a roadblock to healing from Lyme. Personally, we found that mold was a big issue for us, and after moving out of our house and treating with cholestyramine, we are both doing better.

If he is 15, then he was vaccinated before the CDC ever announced they were going to phase out the multi-dose vials which contained Thimerosal (mercury). Once they announced in 1999, they did not recall the mercury containing vaccines, but used them up and phased them out over several years. The last of the mercury containing vaccines expired in 2003. Even now, there are still trace amounts in some vaccines and the full amount in the flu shot (unless you ask for the singe dose vial). You can't determine mercury toxicity through a blood test. You need to do a "challenge," which means giving the person a medicine that binds with heavy metals, such as DMSA or DMPS, and then testing the urine. If there are methylation problems, even this test isn't accurate. The methylation defects need to be resolved with supplementation before testing. If you decide to do the urine challenge, most DAN! docs know the right way to do it. I do think it's worth investigating further.

I'm so sorry this has happened to your son. I remember the unbelievable pain and fear of watching my son turn into a different person over night. Reading back over your original post, what struck me was the joint pain that resolved with abx. This is not a symptom of PANDAS. Between that, the PANS (psychiatric) symptoms, your Lyme diagnosis, your neurotic dog who's had (has?) Lyme, and where you live, I think you need to RUN, not walk, to a reputable LLMD who treats children and has experience with PANS. Dr. B will look at Lyme testing, but he is not an expert. Dr. L doesn't even consider Lyme that I know of. Many of us treated for PANDAS for a long time before figuring out that Lyme, coinfections such as Bartonella and Babesia, mycoplasma, chronic viruses and other factors were all interacting to make our children sick and mentally ill. If I were in your shoes, knowing what I now know, that is what I would do first.

I've read here and there over the years about a connection between Hashimoto's and mercury toxicity. T.Anna, has your son been tested for heavy metals? Mercury can come from amalgam fillings, fish, and vaccines (15 would certainly be in the window when they got too much mercury in the childhood vaccines). A genetic mutation in the methylation pathways could cause a problem with detox and allow the mercury to build up and wreak havoc. JoyBop, you might also consider being tested for mercury levels. Do you have amalgam fillings? An integrative doctor is the best bet for figuring out whether mercury is an issue for you. It can be hard to detect if you're not detoxing well.

Thanks to all 3 of you for responding. This helps, but I still have a long ways to go. Quick question on SUOX - I read in the heartfixer doc that +/+ on SUOX means there is no defect. In other words, the sulfite oxidate enzyme works fine if you are +/+. Is that correct? (So confusing!) I've ordered molybdenum from Amy Yasko's site and will start low and slow when it arrives. How do you know when you're giving enough? Also, I am working on reducing sulfites/sulfates via diet. Once it arrives, I'd like to have him on molybdenum for at least 2 weeks before proceeding. Did you all run any tests before proceeding to the next phase (treating MTHFR, MTRR, COMT, etc)? LLM - figured out through my reading that TMG is used to treat BHMT defects (which aggravate CBS). But TMG is a methyl donor and above you seemed to be saying that Alex is an "over-methylator." So does that mean anything that is a methyl donor is bad for him? Also, how do you know he's an over-methylator? I haven't gotten that far in my understanding.

The folic acid is just plain folic acid. In the Coenzymate B Complex its listed as "Folate (as folic acid)." This is something that really confuses me, and I haven't yet found a document that explains the differences between all of these - folic acid vs. folate vs. folinic acid vs. methyl folate, etc, as well as methylcobalamin vs. methyl B12 vs cyanocobalamin vs. hydroxyl B12, etc. All the terms make me a little crazy! As for why I've given him what I have, I've just been following doctor's orders without having done the research myself. I was too brain fogged to even tackle the reading this past spring and for much of the summer. Its astounding to me that the doctor could have gotten it so wrong. This week I started to understand/think that we should be giving him molybdenum and asked the doc about this when I called to tell him my suspicions about the supplements. He gave me a vague answer about some kids needing molybdenum and some needing manganese, but as far as I can tell he's added neither to the protocol (just what was already in the multi). He's taking 50mg "Reduced Form CoQ10 as ubiquinol" (UBQH by Integrative Therapeutics). We added 12mg of just plain CoQ10 from the Coenzymate B Complex this summer, but I've stopped that supplement now. He's been on the UBQH since the winter when he tested low on CoQ10 and now tests in the normal range. I haven't stopped the UBQH. I am on Chapter 3 of Yasko's book that you linked to and have read the heartfixer doc. Any advice for putting this all together faster? I'm not a fast reader. Thanks for taking a look! I may PM you in the next couple of days with questions.

After speaking with the doctor, I stopped all of Alex's methylation supplements on Tuesday. The wild mood swings, defiance, nastiness and crankiness went away almost immediately. Unfortunately, his anxiety has gone back up some. So the bad news is we got it wrong the first time, and the doctor possibly doesn't have as good a handle on this as he (and I) thought. The good news is I think this means that if we can get the supplementation just right, we may be able to bring his anxiety way down or possibly eliminate it. I have hope for the effect on attention as well. That said, I'm going to list out his SNP's and the supplements he was on (he's still taking the multi). If anything jumps out at anyone in terms of what we were doing wrong and/or how far off the mark we were, please let me know. I am continuing to read up on this as fast as I can, but definitely don't have a handle on it yet. Homozygous (+/+) for: ACE CBS A360A MAO A SUOX VDR Bsm/Taq VDR Taq BHMT 08 Hetero for: COMT - all 3 MTHFR A1298C MTHFR P39P MTRR S175L MTRR R415T MTRR S257T MTRR A664A VDR Fok BHMT - all except 08 TMG – 175mg 2x/week Folic Acid – 5,000 mcg 3x/week Folic Acid – 50 mg/day Zinc Picolinate – 25mg/day B12 (methylcobalamin) – 1mg every other day Folate (calcium folate) – 1600 mcg/day Coenzymate B Complex: B6 (from P-5-P) – 5mg/day Folic Acid – 200 mcg/day B12 – 430 mcg/day Niacin – 20mg Thiamin – 6.5 mg/day 500 mg blend of NAC, ALA, L-Theanine, and CoQ10/day (TheaNAQ) Multi: 8mcg Molybdenum 65mg calcium 65 mcg folic acid 33mcg B12 (cyanocobalamin) 3mg zinc 8mg Niacin Phosphatidyl Choline – 450mg 2x/week

Welcome! I just wanted to let you know that if you post on the PANDAS/PANS (Lyme Included) forum, and say in the subject line that you're from Canada, I think you'll get a lot of help. There are several members on that forum from Canada, and they can direct you to the doctors most likely to actually help you. In the meantime, I would read as much as you can on that forum. You can do a search on any word/topic that interests you and find all the threads discussing it, with the word itself highlighted in the body of the posts. I'll say up front, you're in for a tremendous amount of work, but you CAN get your son well.

I just saw your post - I don't know how I missed it! I'm so sorry this is happening. I'm reading the heartfixer document that LLM has posted a few times, and the doctor who wrote it says CBS is "the most important Methyl Cycle defect and is present in 90% of the patients who we have tested." With that kind of rate, it might be safest to assume he has that mutation and limit the sulfur, to the extent possible, until you know for sure. Is there any other medicine you can try for the GI pain? Oh, my heart goes out to him. Please tell him he's in our thoughts.