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  3. Thanks Chemar! After treating for yeast did you see a difference with your son’s tics? Was treating for the yeast something you did daily over a long period or just once? I will check out the link. My son is doing pretty well but has a small humming tic. Can’t seem to get it to go away. Hence wanting to research yeast.
  4. Hi there, I'm so sorry to hear about all that you have suffered through. I am 25 and have had my own challenges with PANDAS and Lyme but not nearly as long or severely as you have. My guess is that a large cause of what you are dealing with is Lyme and some co-infections (Bartonella, Babesia, etc.). A few things I would recommend in addition to the above: - Cunningham Panel by Moleculera Labs (to see if you have PANDAS or PANS) - IGeneX Lyme and Co-infection testing - you should test for all the co-infections (Lyme, Bartonella western blot, Babesia, Anaplasma, Rickettsia, Relapsing Fever, Ehrlichia, etc) - IGeneX is the most accurate Lyme testing out there; the traditional western blot and ELISA is not very accurate, though if you do get a positive that is helpful) - ASO and DNASE B strep antibody tests (to further support PANDAS diagnosis) - Wheat gluten sensitivity testing through Cyrex labs (to see if you have gluten allergies causing increased inflammation) - Food, environmental allergy and mold testing (to see if food or other allergies are causing increased inflammation) - there is so much more...but this should be a good start I think you should definitely seek out an Integrative Medicine doctor, someone who looks at a variety of possible causes of why you are sick. Unfortunately for so many of us, there isn't one small thing that causes our symptoms, it is usually a lot of factors: mold, lyme, parasites, strep, allergies, mast cell, etc etc. If you are having difficulty finding someone to treat you in Germany, there are options in other countries where you can have phone consultations. It sounds like you have made some diet changes but the first step you can do today to start your recovery is improve your diet. No sugar, gluten, or dairy. This should help with everything. It may take a long time for you to see significant changes in symptoms (months to years for some) so hang in there. You may see small gradual improvements along the way. Some people recover quickly (weeks) but adults who have been sick for a long time tend to take months more often than weeks. So don't be discouraged if diet and other treatments don't yield results immediately. Good luck!
  5. This happened with my son, too—his first dental cleaning since being diagnosed with PANDAS seemed to set off a flare—but like you I think he was already in one due to loose teeth. A couple of days after cleaning, the teeth fell out and then a week later the adult teeth started coming in. All this to say that loose/lost teeth/cutting new teeth and cleaning seemed to set off the worst flare we’ve seen since the initial onset. I’d consider the antibiotics as well as a couple of days of Motrin to help with inflammation. Best of luck and glad he’s doing so well otherwise.
  6. I believe the PANDAS Physician Network recommends full strength abx before (not sure how long before) and 7 days after dental cleaning or dental work. My DS had his first major onset within 48 hours of dental work in 2012.
  7. Son (7) had his pandas onset in February 2018, treatment starting in April 2018, and mostly in remission by June. He was on abx until September with no problems. Had a dental cleaning in November 2018 and a few days later we were pretty sure he was having a flare. That said, we think the flare probably started the week prior to the dental cleaning. Being honest, we have no idea if the teeth cleaning had any correlation to the flare. In any event, once the flare was obvious, we started abx again and symptoms went away in a day. In February, his bloodwork showed low neutrophils so his doctor took him off abx again. He's been going strong without abx since then! He is scheduled for a dental cleaning on Wednesday. As noted, i have no idea if his previous flare was correlated to the dental cleaning. Should we be taking any precautions in advance, during or after the appointment? I'd prefer the least intervention as possible, but am open to advice.
  8. Hi mlee The yeast imbalance referred to is an overgrowth of Candida albicans ie candidiasis There are various ways of testing for candidiasis, from the non-scientific but interesting home "spit" test I see other "home tests" advertised on Amazon etc as well Blood, stool & urine testing can be ordered by a physician for the greatest accuracy. There are many websites with information & recommendations regarding Candidiasis. Just be aware, many are touting products as well which may or may not be effective! Here's one with good info (again check with your physician before just buying products that claim to "cure" ) How to Test for and Treat Candida Naturally
  9. How does one check for yeast imbalance? What foods “feed” yeast vs not?
  10. Thank you for the answers. I wrote down everything for my mum too. The Mcas sounds a lot like me, actually since early childhood. Thank you for that too. I will get checked for lyme in 2 weeks, I guess wish me luck.
  11. Just a thought...This might be totally out there but as well as checking out PANS, it might be worth investigating MCAS (Mast Cell Activation Syndrome) Look up the list of symptoms and see if they sound like you. No harm done if it's not. Good luck!
  12. Zanzarah, thank you for writing and you will find a good information and people here on this site. Your symptoms are very similar to my experience with Lyme disease, specifically: tics dizzyness moodiness poor handwriting sensitive gut problems headaches and neck pain / meningitis You mention you had a tick bite at age 14, then you had night sweats. Your naturopath said you cannot process meat protein. Do you feel bad after eating meat now? If so, you may indeed have a meat allergy called Alpha-gal which caused by a tick bite: https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608 I suspect that your other symptoms may be due to a tick bite when you were 3 years old. Tick-borne disease is certainly possible in Germany: https://www.ncbi.nlm.nih.gov/pubmed/12141751 Have you seen a doctor who specializes in Lyme disease and immunology? You can attempt to locate a doctor here: https://www.ilads.org I wonder if you would be able to travel to the U.S. I have a very good doctor in Washington D.C. who specializes in tick-borne disease, neurology, and immunology. I will message you with his contact information.
  13. Hello I'm a 24 year old female from germany. I try to make it as short as possible, thanks for reading . I've always was a sick child but the first time I really realized I was getting more sick and sick every day was around age 11. By now I pretty much had every symptome related to pans/pandas. I had my first tic at age 3. I would start stretching my limbs into every possible direction and stare into nothingness for hours, I also had sudden movements. I can't remember but my mum can. It went away by itself. By age 6 I started to have severe anxiety. From that time on I was scared of everything, I wouldn't go anywhere without my mum. In school I was so scared I started sweating as if I was taking a shower. By age 11 I started having severe sinus problems and I would get sick every 6 weeks, but I never had fever. I would get aggressive easily and was extremely moody, I also had severe gut problems Age 14: I started to faint randomly - in the bus, at school, In the subway, night sweats started, every night for 2 years. I had problems with my handwriting, it was becoming so bad my teacher couldn't read it. Age 16: I woke up one saturday and was dizzy and this is where the worst part started. I stayed dizzy for 2 years. I had severe migraines, it felt as if my head was exploding, my coordination was gone, I had extrem light sensitivity too. At 18 it went down to extrem pain in the neck and confusion.Because no doctor diagnosed me except with allergies to milk, egg etc. I started a raw food diet and went back to school to get my a level. At 20 I had a half year of no symptoms I finished my a-level and then suddenly the gut started again, I couldn't eat anything (2016), I had constant constipation or diarrhea I lost 7 kg and was so intoxicated I smelled from every pore when I entered a room, I had to get infusions from a doctor to get the poison out of me. 1 year later I started having auditory hallucinations (now for 2 years) . Also 4 months ago the tics started again. Since 2016 the sinus problems are back, I have nerve pain, my knee joints hurt after taking a shower, sometimes my skin burns and a lot of other symptoms. I will now start getting tested for infections. We start with lyme disease because I remember having a tick at 14, 2 months before I fainted for the first time. I have absolutely no clue what else I have to test for. It's also really hard to find a doctor that knows about pandas in Germany. So basically what I'm asking for is what should I get tested. I read a lot about co-infections, Lyme tests that aren't accurate, encephalitis, something about MTHFR gene and pandas but I don't know what to look for. I'm really confused and my mum (who loves me but...) is really bad at research doesn't know what to do. Until now we tested : -I had a spinal tab (they tested for encephalitis) - negative -MRI-negative -I had an autoimmune blood test - myelin antibodies positive + -They tried neuroleptics - didn't work, then they said they don't think I have schizophrenia -I had an eeg - they found slow waves and put me on keppra against seizures that I didn't have back then. + -I had a gastroscopy and colonoscopy - negative. I'm still waiting for the blood work they tested for gluten sensitivity. -2016 I went to a naturopath he tested me and told me my body couldn't process meat protein anymore. Also he diagnosed me with an illness not accepted by mainstream medicine called pyroluria. But he managed to get my stomach back to working, sometimes it was rock hard even after just eating a cucumber. He also said I don't have leaky gut (also not mainstream medicine) + I'm no expert I don't know where to start because my mum and me realized that doing the standart tests won't work. I'm reaching out for those mums that got their children tested and did their own research. Please help me to figure this out because my mum doesn't even know what a forum/board is and I'm at my limit and really scared. Also sorry for my bad english. Thank you very much. I would be so grateful if you could help. Zanzarah.
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  15. What is your issue with a blood test? My DD is extremely needle phobic. We are have trouble with blood tests as well. Insisting won't help in any way......:) I did search online and found a prescription patch that works very well in numbing the area, and related brain pathways. It is called Synera. I would love to know people's experience with this. OR any other suggestions. (We would need to do a standard blood test soon, and can't see how it will happen. Last blood test we had 3 people holding her down......Not going that route again....)
  16. Hi, garnerflys, welcome to the Forums. Sorry to hear your son's tics are getting worse. I'm sending you a message shortly-please look for it. Thanks! Sheila
  17. My 12 year old son was recently diagnosed with ASD and I'm pretty sure he also has Tourettes. I am a newbie to this site and am looking for Houston-area providers who take a more holistic approach to these conditions. Posters on the PANDA thread speak highly of Dr. Doctor, but does he also work with ASD patients? Would also appreciate the names of nutritionists who can help with an elimination diet and vitamins. Thanks.
  18. It looks like there are online purchases available but with all the fake or deluded prescription drugs I’m not sure how you can verify if they are real.
  19. DD symptoms ramp up when a period is coming. She takes boswellia. Before she started taking mitochondrial support supplements, She took Advil cold and sinus which is 200 mg ibuprofen with 30 mg of Pseudoephedrine. 30 mins before symptoms leading to an episode would stop an episode from occurring. It worked so well we got dependent on it for more than a year but then it cause her immune system to attack her thyroid and liver. If it works for you as long as you use it when needed it shouldn’t have any side affects. She took 1000 mg of ibuprofen during flares and it would curb symptoms but not stop an episode. The Advil cold and sinus works way better. DD would also experience symptoms with bacteria infections. I think urine test are less costly than blood tests. You can also ask the pharmacist for over the counter anti inflammatory alternatives.
  20. hi, my 12 year old son has had tics on and off for the past few years. They are definitely getting worse, is there a functional medicine or environmental dr that people recommend in new york or the north east??? thank you
  21. Many of us get caught up in a diagnosis name. I think we got lucky with a pediatrician that understood what we would struggle with in the medical industry if she diagnosed our child with pandas which at that time was concidered very rare. She made a diagnosis of “unknown autoimmune illness” in 2012. the result being we did not experience testing or treatment denials from our insurance. Example: getting an mri. Symptoms vary in intensity. We thought at first that DD did not have a tic but later realized her tic was verbal. Her tic also changed with a steroid blast treatment from verbal to head shaking. Having no experience with Pandas symptoms makes it hard to define or recognize symptoms. We think the underlying cause of antibody and protein build up in the Basal ganglia. we did eventually get a pandas diagnosis in 2015.
  22. Did you see the "oddball symptoms" thread a bit further down this forum? That talks about that. A lot of people seem to suspect a connection. I'll also point out that low muscle tone and general double-jointedness seems to be very common in people with Asperger's syndrome as well, although I'm not sure if it usually goes as far as that shoulder-snapping thing you described. Of course, Asperger's isn't at all the same thing as PANS, but they do go together disproportionately often, so a correlation in one would mean some amount of correlation in the other too, if you see what I mean.
  23. Ahhh - that would have worked but unfortunately naproxen is a prescription medicine in this country! So close but so far! I'll bear it in mind, though, perhaps it'll be useful some time in the future. Do you mean to say it worked noticeably better than ibuprofen? (I do take ibuprofen some of the time, in fact much more of the time than I should, I'm sure you shouldn't continue to take it several times a day for weeks and months on end, but it doesn't entirely seem to cut it.) Or maybe they might even be prepared to prescribe that - it's not going to be possible, by the look of it, to get to speak to any of them before we leave for Grasmere, but maybe they'd be prepared to speak over the phone and then send over the prescription for us to get cashed at the pharmacy there. Perhaps that'd be a thing that she'd be more prepared to prescribe without a blood test. It's infuriating because I get the impresssion, though I'm not sure, that what my GP is thinking is not so much "I don't want to prescribe this until I've seen the blood test" as "I don't want to go on just prescribing things at hazard without bothering to do blood tests, I want the blood tests to be done". Whereas, for both the reasons mentioned, the blood tests just ARE NOT GOING to get done for a bit, insisting is not going to change that, so just leaving me without any treatment until then is just a bit useless.
  24. Improvement of psychiatric symptoms in youth following resolution of sinusitis. https://www.ncbi.nlm.nih.gov/pubmed/28012531
  25. Thanks. I don't think we will have options with respect to where to get IVIG. I believe Dr. K still uses only one specific facility in the Chicago area.
  26. Anyone have any advice / experience on sphenoid sinusitis? Is it a piece of the PANDAS puzzle? I just got diagnosed with a “right sphenoid sinus disease” on a CT scan. ENT said it is a small chronic infection, but probably not worth worrying about if it is not causing physical symptoms. Is the ENT right? Or is this a must-surgically-remove-for-PANDAS situation? Please and thank you. Really need guidance on this one.
  27. My son was diagnosed and treated at age 12. He is now 16 and does a lot of the things you are describing. I know a lot of other boys who do the same things at this age though. I tend to think it is teenager boy stuff. And maybe boys in their early twenties also (think frat houses and bachelor pads).
  28. I can't speak to obtaining Augmentin without an Rx, but I thought I'd share something else that worked for us. My daughter went through two rounds of Augmentin with amazing results. When she started to flare a while after the antibiotics treatment ended, her PANS doc was hesitant to go right to Augmentin as my daughter's bloodwork was still ok. She suggested we first try Naproxen (brand-name: Aleve) anti-inflammatory for 30 days and see if that helped. It was amazing. Now that is our first line of defense when there are illnesses going around and my daughter starts to flare. I know not everyone responds the same way, but just thought I'd pass along how much Naproxen has helped us in place of antibiotics.
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