Am I doomed? Untreated PANDAS/PANS for 17+ years

[Jimmy89]

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.

Edited September 9 by Jimmy89

[Sheila]

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. 





 

[Jimmy89]

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!

[Jimmy89]

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

Edited September 13 by Jimmy89

[Sheila]

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!  




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[Swetha]

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. 

[Atex]

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.