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Hi there, just thought I'd post an experience for anyone searching. My daughter was on the usual path of motor/vocal tics for a few years starting at around age 5/6 till we really explored diet/environmental triggers and completely eliminated tics right around the age 10 mark, and she has been completely tic free for about 14 months. That includes many times of high anxiety, sickness, pressure, etc that can come with being a 10 yr old. In the past 6 months, we have tried challenge tests on a few foods. Eggs went well, and boy that made life easier. Dairy on the other hand was different. We tried challenging her with Fairlife for 2 days (lactose free milk, but it's still cow milk), and sure enough, mild tics showed right up and lasted approximately 12 days, then back to nothing. I only mention this because if you imagine a child who's system is being offended by multiple things, for a longer period of time, you can see how difficult it can be to isolate what is or isn't the offender.

Melbourne Australia. That looks like an area with high humidity and moderate temperatures. I see a LOT of problems in homes with those conditions because there's no AC running to control humidity and you're constantly battling condensation forming on everything during normal daily temperature changes, which in turn means you have widespread mold growth (doesn't even need to be gross visible growth over everything). Your drywall and blinds in the photos look like a humidity problem to me. Not sure about the setup, but it could be a prime candidate for a dedicated dehumidifier to help moderate RH to the 50-60% range.

I recommend you to read the books written by Dr.Jill Crista on "PANS and Pandas" and "Break the mold". I feel there is so much help out there in these books.

Can you please share jeanie info so I can contact her? The person who sells the treatment. Its so hard to find info online about it and im very interested after hearing a podcast about someone who healed after taking it. I appreciate it

Has anyone had any updated details on how their ozone therapy helped? what protocol was used? I’m going through this with my 13 year old ds and puberty has ramped things up His 3 rd ozone iv with saline 500ml bag Twice a week please tell me what protocol was used ?

@ 13 my son started ozone therapy in Iv form in saline 500ml @ 10 minutes ozonification (33 then 66 on the second round) he’s got ocd symptoms and we have tried for 3 years extreme supplements and deep medical exams that showed several infections in gut even trying to train the brain frequencies and therapy but no drugs … via herbs and food diet we were able to lower inflammation to gut and brain but with hormones / puberty on the horizon, I feel it’s gotten a bit more intense . has anyone had success on ozone procedures that worked with their ocd for teenagers?

Will do. Results will be in this week.

Hi Lulul4834, we would be interested to hear what the results of the swab are. I haven't heard of that connection with a flare but it certainly sounds plausible. Please let us know what you learn, and what treatment is recommended. I'm glad you wrote, and let's see if others have a response.

My daughter has been experiencing vocal and motor tics for 2 years. We are controlling via gut healing and avoiding food allergens. We have seen great improvement. However, vaginal discharge will accompany a bad tic flare. We are waiting for vaginal swab culture results but I was wondering if anyone else has seen this? Thanks.

I can really relate to your comment about feeling like you're in a trance, like it's almost unbelievable that this has happened. And, I totally get your observation about the focus on the severe tics; I think this is a big reason why the condition is so under reported. We were about on the same track with my daughter and really turned things around at about 9.5yr old age once we identified a few of the main triggers, and they were not obvious. If you would like to know more, feel free to reach out to me.

Hi HopefulJourney, Welcome to the Forums. It's great you give so much attention to your son and are trying to find answers. At the risk of repeating information, as you said you have read the forum, I'd like to make a suggestion for your diary. If one of the goals is to keep track of possible triggers for an increase in symptoms, it might be helpful to have a list of possible events or items that could play a role in increased symptoms. Our organization published a book, Stop Your Tics by Learning What Triggers Them (it's on Amazon), which breaks down various possible aggravating factors or triggers and provides feedback from families on what they discovered. Dr. Doris Rapp wrote a bestseller many years ago that focused on "unrecognized allergies." I mention that just to expand your thinking about allergy. I'm attaching a resource that gives an idea of what a search for underlying issues in Tourette's might include. That is not to suggest there are easy answers for everyone. And as you point out, everyone is unique. You could look it over and see if there are areas you haven't thought of yet. FYI, we have had feedback from numerous people who found that exposure to harmful chemicals -- both obvious toxins like pesticides, as well as more hidden toxins in everyday items (i.e., cleaning products, plug-ins and other air fresheners) triggered vocal tics. At the same time, many other agents, and also infections and imbalances, can be involved with vocal and motor tics. I know it can seem overwhelming. Hopefully, your diary will help you find some clarity. I'm wishing you the best with your efforts! You have every reason to be hopeful. A Checklist for Brainstorming Triggers.pdf

Thank you for answering my questions and providing background with such awesome detail. Please understand I'm not an expert nor a practitioner, but I thought I might be able to offer some suggestions at a global level. You are so bright and well-read regarding integrative approaches to Bartonella, Lyme, mold, and tics. You've tried an impressive number of logical treatments, though, unfortunately, without the needed improvement you are looking for yet. Dr. Nathan re: treating mold first Regarding the mold, which you say has been remediated but could, of course, still be an issue or you may have long-lasting physical effects from an earlier exposure--you may find these two links of interest. I see that you are following the Buhner protocol for mold. This is from Dr. Neil Nathan (I'm just it sending in case of interest, not suggesting you stop what you are doing or that he has special expertise. Just sending in case there are any insights for you. https://www.lookingatlyme.ca/2022/11/49-mold-lyme-and-bartonella-with-dr-neil-nathan/ https://www.lookingatlyme.ca/2022/11/50-bartonella-mold-and-more-with-dr-neil-nathan-part-2/ An article to consider Also, I thought of you when I revisited this article on our site--in case something pops out as something to consider re: mythelation: https://latitudes.org/unraveling-the-causes-of-my-sons-severe-tic-disorder/ Magnesium and other IVs I don't know anything about your financial situation or health insurance. But since you have described your tics as almost seizure- like, might you be able to go to an integrative doctor or emergency room that would consider an IV of magnesium? It is sometimes used to calm seizures. Or maybe someone would come to you--again, I don't know how far out you are. I noticed that a home-visit nursing site in Australia mentioned magnesium IVs for Lyme. Here's a text conversation below that I had with them just now. I explained you had a severe tic disorder and probably Lyme/Bartonella and asked if they did magnesium IVs. Note that they offer what I assume is a virtual consultation to determine what you might need. It could be costly, but if it is feasible to try one, you might see if an initial magnesium infusion brought any relief at all. Magnesium might just be a start. While international, I don't know what might be feasible for you as far as location, if interested. Hi there! 🌟 At Drip Hydration, we do offer a variety of IV treatments that include magnesium, which can be beneficial for various conditions. While magnesium can be helpful for muscle relaxation and nerve function, it's important to consult with a healthcare provider to determine the best course of action for a severe tic disorder and potential Lyme/Bartonella infection. If you're interested in exploring our IV therapy options, you can check out our website and book an appointment to discuss with one of our medical professionals. They can provide personalized recommendations based on his specific needs. 💧✨ This is the website, and perhaps there are others in Australia https://driphydration.com/ Allergy treatment I realize you are not in a position to drive. Some forms of allergy therapy might be useful; it's something to consider. We would have to look for some place accessible that offered the right type of assessment and treatment. I hope and pray something here is of some help while you continue what you are doing! I

Hello, My son is currently 12 years old and has had tics since he was 7. (my second son has nothing) At age 9, he was diagnosed with Tourette Syndrome by a renowned university. He does not exhibit any comorbidities such as obsessive-compulsive disorders or ADHD. According to our professor at the university, this would further enhance the positive prognosis, and we really want to believe that. The initial period was the hardest time of my life. The feelings of helplessness, sympathy, and despair were overwhelming, leaving my wife and me in shock. We were like in a trance. I know every study and publication on Tourette Syndrome and have devoured everything to help my son in any way I can. Since then, I have been keeping a sort of diary to record the developments. I only recently discovered this forum and have read everything. I understand you all very well and want to encourage both you and myself.I plan to share my diary, which I had previously kept private, on this forum at a later time. This condition is like a mystery box, making it difficult to predict outcomes, as ultimately, each case is unique. I often oscillate between hope and thoughts of naivety. Our son has a range of vocal and motor tics, which vary greatly in their fluctuations. There are few months where he has almost no tics, and then suddenly they start up again. Our most distressing tics are screaming (squeaking) and head jerking. It is a very loud and sharp squeaking. The squeaking draws attention from those around him, which triggers him even more. Sometimes I'm afraid that his vocal cords might get damaged. The head jerking causes headaches and discomfort, and there is nothing we can do about it. We never let our concern for him show. We give him a lot of love and support him in every way we can. He is very well integrated into sports clubs, has many friends, and performs well at school. He doesn’t like learning at all, and homework is a daily struggle, especially during a severe tic phase. The entire school and all the teachers are informed. The parents of his friends and the clubs he is involved in are aware of his condition. What makes it so challenging to grasp this condition is that online, you mostly see children with more severe cases, such as coprolalia or complex tics involving multiple movements. Our son does have tics, but generally, he does not have complex tics with his arms. For example, he makes grimaces and squeaks, or jerks his head and sniffs. When the tics are very severe, he might do them about 40 times a minute. Currently, he squeaks about 10 times a minute. What I always find missing are experiences regarding fluctuations. Some studies mention a peak in the condition around age 12, others from ages 12-16 or 10-20. I never know if we are currently at a peak and it will get worse or if it will stay the same. I sincerely hope for a calm period soon when the tics decrease. During these phases, like now, I feel completely beside myself. Due to the noise, I hear him constantly and feel a great deal of empathy and worry about the future. While motor tics are less noticeable, vocal tics inevitably make one feel sad. Of course, we ignore it. We encourage him by saying that it will eventually be over or greatly reduced. However, we don’t talk about it much, as our university professor advised that we shouldn’t focus too much on the condition. We also don’t attend support groups because we don’t want him to pick up tics from others. One of my greatest fears is that as he gets older, he will search online for Tourette Syndrome and come across videos of children with more complex tics, and then adapt those tics himself. When he was first diagnosed, he had a brief period of coprolalia, but it has not reappeared in recent years. We focus on a balanced diet and do not detect any allergies, at least not related to the respiratory system. He has no allergy symptoms. So far, our university and the Tourette's specialist society have not informed us about possible allergies, food intolerances, or other factors related to Tourette's. However, we are still open to having allergy tests or food intolerance tests conducted if necessary. On the recommendation of his psychologist and the university, our son is currently taking Tiapride, which he tolerates very well, except for occasional drowsiness. My diary shows that when we increased the dosage, there was a temporary improvement. Based on experiences from others that it is normal for calm periods to follow severe phases, I am uncertain whether we should discontinue the medication. Perhaps it has never been effective, and the improvement was due to normal fluctuations. Once a calm period returns, we will likely try tapering off the medication. For now, I am concerned that this phase may last longer or worsen. Recently, we have also started giving him magnesium, vitamin B6, and omega-3. We would be happy to stay in touch with other parents here and provide updates from time to time. This will help others after us to better understand this condition. If you have any questions, feel free to ask me everything. Kind regards

Currently I'm "all in" on mould & Bartonella. Hoping I haven't missed something else that's essentially blocking treating these. The gut is awful and my ige skin prick test provoked wheals to almost all of the foods I tested. IGG test was pretty typical. Carnivore/keto and being strictly whole foods for the past 18 months have done nothing. Neither have L reuteri yogurt/coagulans/slippery elm/butyrate/inulin/chia/undecylic acid/antifungals/mag citrate/P5P/L theanine/NAC etc. No matter what the gut won't budge! I've read Robert Naviaux argues the microbiome/gut won't heal unless the endothelial & mucin layers are restored to change the gut environment and re terraform the gut to foster a healthy biome. Along with remove root causes such as mould/Bartonella etc. So I've accepted the gut isn't budging as I've tried everything. Compared to the first 18 years of my life I feel like I'm in some bad dream with extreme tics but otherwise fatigue/aches/muscle twitches/itching all over/red knuckles/immense visual snow/dark floaters/hot flushes accompanied with sweating and mentally it just feels like I'm in a detached dream world. It's hard to believe the human body would evolve to exist in such a state! Even harder to believe it flicked off like a switch back in April. All these treatments haven't hit a thing so far! I've conceded to being patient and treating mould/Bart over the next 18 months. Next steps will probably be ozone/peptides/methylene blue etc! I'll definitely report back if I ever figure it all out. I guess this is what happens if you leave an underlying condition untreated for decades. The science simply wasn't available until the past 10 years. Doctors just told me this is genetic and from personal experience and being the only one in my family history with tics it most certainly is not! It feels like an illness and I certainly wasn't born this way ie attended school as per normal and lived a fully functional life aside from "mild aspergers", first tic in my life appeared 3 months after my 18th Birthday

Hi thanks Sheila! That day was bizarre not only did the tics go away but my rotten mood/state reverted back to my old self. It was literally like the flick of a switch! I haven't been able to regain that day for the past 5 months. But it indicates to me as severe as it is, it seems inflammatory and not damaged D1/D2 receptors/interneurons. At least I hope so! I live in Melbourne Australia in the bush the house is 50 years old. The house seems to have an aspergillus problem but I had these tics in 2 different houses prior. But my condition overall became untenable around 2 years ago. Before that I was able to ignore the tics and drive/walk around the block outside etc. It's a standalone 4 bdrm home on a 1/4 acre block! I live alone and have no pets, despite that my strep ASO was 370UI so perhaps I'm a carrier or reinoculating myself somehow. I never had any medications. When I was 18 I actually started using cannabis to blur out of my symptoms, which worked for a bit until I abused it and had to quit, which I have for 10 months but have gained no real improvement in my overall health from doing so. It seemed to work well but doesn't anymore so I'm stuck with facing symptoms until I identify the underlying condition. I strongly suspected Bartonella as when I was 18 the strae marks appeared all over my body and I was effectively bipolar having rage episodes and immense irritability. Which seemed to peak around 2012. I'm not as crazy as I was then, my behavior is actually good, but I'm incredibly fatigued/depersonalized/depressed etc and the tics are 10x worse. I did the IFA serology and came back with 1:128 to Bartonella at the start of the year, already confident I had it based on symptoms. I provoked it with oregano/knotweed/houttyunia and other things and the next IFA test came back 1:512. Which was only a few weeks ago. I've noticed no real herx/change in symptoms since treating it though, but I'm effectively doing the full Buhner protocol everyday plus oregano/berberine/black walnut/enichinea and about to add biocidin. No improvement so far I've been pulling the house apart looking for mould (safely) but I'm not sure how much related to my symptoms it is. I've been focusing on mould/bartonella/rebuilding the gut this entire year and now I'm looking at other things I've potentially missed. ie strep/reactivated viruses/MCAS/kryptopyrolles etc. It never ends! As taking mould binders/Buhner protocol for 5 months+ hasn't improved tics or other symptoms at all. The house has some black mould damage which has been removed, but the drywall itself seems to have some other type of brown mould which I assume is in all of it! I think my biggest problem is Bartonella I believe I have a severe neuro version of it but I'm not sure it can cause tics as severe as I have. I guess all I can do is hope to kill the infections. In the meantime the carnivore diet hasn't helped the tics, so I'm hoping to get relief from tics using herbals that repair/calm the microglia such as gingko/feverfew and some others. Cheers!

Hi Jimmy89, it's heartbreaking to read what you have been going through. I'm so very sorry you are dealing with such a severe situation. Your symptoms must be very exhausting and painful at different levels. That short period in April must have been heavenly! There is always hope for healing, hope for returning to that state. You seem very well-read and have tackled so many interventions. Please don't give up. These are some basic questions : Where do you live--the town/city? What kind of home are you in (apartment, single-family home, etc) Do you live alone or with someone else? Were you given medications for your tics when they started, and if so, what did you take? Thanks for any feedback. Sending lots of good wishes your way.

Hi all! I was diagnosed as mild aspergers at age 14. A couple months after I turned 18 I developed severe tics/ocd and have lived that way for 17 years (I'm 35 now). I've been reading a lot in regards to the basal ganglia damage caused by strep if left untreated. Is that true? Would that include tics? Tics are by far my worst symptom I've been housebound the past 3 years and unable to function (they're literally like seizures every second). They started out as whole body thrusts then 6 years later around age 24 I developed vocal tics that have progressed into severe motor/vocal tics the past few years. Literally everything (shouting swear words/noises/stomping/slamming tables/smashing my arm against my waist, violent head/neck/shoulder jerks etc). I've been suffering so badly I can't imagine being stuck with them for life, especially after never having them the first 18 years of my life. I seem incredibly unlucky to not only develop them but also have such an extreme disabling case. I've done a few functional tests which have given me an insight. Gut microbiome is stuffed, seem to have a severe chronic Bartonella infection (which probably started when the tics did), but I tested my ASO last week and was surprised to see it elevated at 370UI, despite not leaving the house at all for months. Anti Dnase B was normal. OAT test also showed marker 5 elevated (mold colonization), mildly high HPHPA and succinic/fumaric were elevated etc. I went medical keto with no improvement, found I was ige allergic to 98% of foods so I essentially gave up and went carnivore 4 weeks ago, which has also done nothing. No chemicals in the house, I installed an RO water system a year ago, clean with vinegar etc. I've lived extremely clean and got nowhere. The tics are just severe 24/7 with no relief. I also have severe visual snow/depression fatigue as my other main symptoms. Is it possible to recover from this ? I've heard stories of people getting better decades later from tics, but I guess it all depends on whether it's neuroinflammation or autoimmune encephalitis and I'm extremely worried given how severe they are. Feels like my brain is gone. I actually had one day this year in April where the tics disappeared for a few hours, along with my old personality returning, as though I'd woken up from a bad dream. That day is the only thing that has kept me battling. I don't think that would be possible with a damaged basal ganglia? I was literally amazed that such severe symptoms could just disappear. There seemed to be no reason for it either. I just woke up with a non irritable brain and good mood. 5 months later and every single day has been severe tics/mental . I've been doing the Buhner Protocol ever since along with so many supplements, which haven't helped in anyway.

Thank you for your response @KSandy. I have started doing that and have seen some improvement. Also I read in one of the articles, that the glutathione can cause bad breath. But it is definitely getting better.

Hi Sheila and Chemar, Thank you very kindly for your thoughtful responses. Yes I do feel she’s improved a lot since we’ve been started that path I mentioned. Although since she’s started school again (3rd grade) her tics have greatly increased which I’m assuming is stress or anxiety. (Probably lots of toxins in the cleaning products used at school too) Most people would not know she has Tourette’s. We do notice she tics a lot when it’s time to sleep like when she’s in her bed and we’re reading her a story and singing her a song. So I do feel it’s when she’s tired. She also tics when reprimanded, so anxiety over that too. But now that school is back in she’s been ticing a lot more randomly throughout the day then when we typically notice her tic. Although she doesn’t tic after going into chlorinated pools, her nose is always sooo runny after and for a day or so after that I think she is definitely allergic to chlorine. we are seeing an integrative doctor whom we are doing a gut zoomer test with to test her microbiome, But I was hoping to find integrative doctors and holistic practitioners that specialize or have helped children with tics/ Tourette’s before as our integrative doctor seems to know what she’s talking about but she doesn't specialize in helping tics/ Tourette’s. Thank you Sheila, I would love to chat with you, if that’s your personal email you’ve emailed me with then we hopefully can continue our conversation there. As far as household products go, I’ve always used products in the home that have rated well in ewg skindeep or think dirty app because my husband is a cancer survivor and we try to avoid toxic products. Granted I still keep some bleach, stainless steel cleaner and grout and granite treatment on hand as once in a great while I need to use them but have not used them anytime recently. I did just realize the seventh generation laundry detergent I was using isn’t in the green, so I just switched to another brand. The last two years since reading different books on health and Tourette’s have really helped us clean up what we were eating so we are trying to have food now that are very simple ingredients that we recognize and know are healthy. Last week my husband got diagnosed with multiple sclerosis so we are even more motivated to make sure we were eating whole foods and organic which I’ve always bought. I think stress and him eating out too much on the road put him in the position that he is now unfortunately. But at home, I always made sure fruits and veggies are organic, but now we are also avoiding all the vegan cheeses with all the added oils and such. We do not have a whole house water filter system, so we do have chlorine in our water. Just thought of that on the subject if chlorine. I would like to find a doctor that would do a really good food sensitivity test with her, because I kind of feel that taking out all the things we have just perhaps isn’t enough, or finding out what is making her body tic with reactions to stress and tiredness. Definitely there is always room for improvement as some things we thought we clean/ healthy, weren’t as good as we thought. Just realized my husbands native deodorant isn’t as clean as we thought it was with added fragrance, so we can try switching that, I may have never looked that one up on skin deep come to think of it as it was recommended by a friend to be very clean and affordable. Anyway, sorry for such a long response, maybe there’s more I’m missing? Thank you so much again for listening to us and making helpful suggestions. Always room for more, thank you!

We mixed half a capsule's worth in with breakfast and bath soaks in the evening. Definitely took down the "peaks" on bad days.

Hi @fgter We didn't split his extra magnesium. He had that as once daily, and we learned it was best for him at night as it did help him relax for sleep. He also got some (low dose) magnesium from his multi, which he had with breakfast or lunch.And when he wanted, a soak in an Epsom Salts bath (magnesium sulfate)

Hi Chemar, How did you split the daily dosage? I have started giving 100mg magnesium citrate(natural vitality CALM powder) for my 6 year old, started giving her in 2 doses, one in the morning and one at night before she goes to bed. Is this the right way for better absorption?

Hoping this may be the start of a wider recognition in the USA of the hazards to health that these chemical dyes are- especially for children! http://www.nbcnews.com/news/us-news/california-legislators-send-governor-landmark-bill-banning-six-artific-rcna168953