Tapering With Neuro Lyme and Autoimmune Enceph

[[Li...]]

Hello,

I began taking Klonopin 4 years ago to cope with convulsions, agitation, and cognitive impairment caused by chronic tick-borne illness (TBD) (Lyme, Babesia, Bartonella) as well as autoimmune encephalitis and a systemic scleroderma-like presentation. These infections and AE are well documented and all still active despite 5 years of treatment (for all of them, which all made me worse) with a several of the top specialists in these fields. I have tried nearly all the traditional and alternative treatments sufferers in this space face. I have one very slightly elevated scleroderma biomarker, but all my doctors think the fibrotic connective tissue presentation is a result of the inflammation from immune cells attacking the infections, while drive deeply into body tissues. A grim situation.

I am 35 year old man and extremely ill (95% bedridden). Cutting to the point, my last resort treatment option requires I first detox off Klonopin. I began tapering off 1 month ago from my daily dose of 4mg to 3mg. I realize this is a quit cut now that I am more informed. It did lead to some night-time agitation, mast cell inflammatory flares, severe insomnia, and obsessively thinking about taking my next dose, but I am at my baseline already. 

Is there anyone in this forum who has gone through or is experiencing severe neurological tick-borne illness and tapered off benzos while still symptomatic?

If so, I would love to connect. I am in a seemingly unique situation because I want to get off Klonopin with a fairly quick taper. This is because I may die or become morbidly impaired (paralyzed/demented etc.) if my illness progresses over the course of a conservative 12-24 month taper. However, I think all my neuro-inflammation probably puts me at a higher risk of developing a protracted benzo withdrawal. To be honest, the neurological symptoms of TBD & AE seem extremely similar to protracted withdrawal so I don't think I could even tell which is causing what at the end of a taper.

I am also very open and grateful to anyone in this group who has advice they think might benefit me....?

Is a 6 month taper from this time point very risky? Maybe decrease by 15% instead of 10% every 2 weeks? Again, I am tapering off Klonopin in order to try my last resort treatment approach for my potentially deadly illness.

Sorry for the long post. Just trying to provide thorough context.

Thanks you so much for any thoughts you could share!

LG

[[Co...]]

Hello @[Li...]. Welcome to BenzoBuddies.

It is very late for me, so I have only time to approve your first post and welcome you. I am sure others will be along to properly welcome soon. I will try to catch up with this tomorrow.

[[Li...]]

Thanks for the welcome and any future thoughts

 

[[Pa...]]

Hello @[Li...], welcome.

We’ve had quite a few members discuss Lyme disease, you might try using the search function to see what others have documented, in case we don’t currently have anyone dealing with it.  I believe you’re correct in surmising that benzodiazepine withdrawal symptoms and Lyme disease are difficult to distinguish, I’ve seen many members think they have it only to find its the drug.

Are you working with your doctor for your taper or are you on your own?  Your first reduction was rather large but we’ve seen those on the high doses typically do okay with large reductions in the beginning. 

Your goal is to be Klonopin free so you can take this other medication?  I believe you can meet your goal and be benzo free but probably not symptom free in the time you’re suggesting.  You have strong motivation for doing this which I hope will give you the strength to persevere.

 I wouldn’t worry about protracted withdrawal at this point, it happens but its typically a small percentage and its not a good idea to start this journey expecting it to be longer than it already is.  Hope is one of our strongest tools so we don’t want to doom you right out of the gate. 

 

[[Li...]]

 

Hello @[Pa...]

I have a complex chronic illness doctor who knows I am tapering, but I am doing it on my own. I also have a parent who I live with who is a psychiatrist.

My goal is to be benzo free so that I can try a controversial treatment method that requires I be off all medications. I was kinda vague and deliberately omitted the treatments name because it is fairly controversial, and I don't want it to become the subject of this. Whatever tho. It is called medically supervised fractional dry-fasting. Basically, successively larger rounds of fasting without drinking water for up to 9 days while being supervised by a doctor who developed this method as well as a proper way to rehydrate and refeed the body after. It's become a popular last resort treatment for people with very serious tick-borne illness, auto-immune diseases, and Long-Covid. A woman who had severe neuro-lyme recently wrote a book how it saved her life that sparked its popularity. 

When you say "be benzo free but probably not symptom free in the time you’re suggesting," do you mean that it is common to have some lingering benzo withdrawal symptoms for a period of time--without it necessarily becoming a protracted situation?

Thank you for your encouragement. Yes I am focusing on the positives. I have already been through serious hell so and have developed a tolerance for suffering. But I know to be prudent about removing this drug. Thanks again.

Edited October 1, 2023 by [Li...]

[[Pa...]]

I’m encouraged you have another avenue to pursue to treat your illness, that’s what matters and if it gives you and others their life back then it will be worth it. 

Full recovery for those of us who suffer from benzodiazepine withdrawal typically takes between 1 and 2 years for those who’ve taken the drug long term, short term users, around 4 months can hope to be recovered in terms of weeks and months. We don’t consider someone protracted until they pass the 2 year mark.  Not everyone who withdraws from benzodiazepines will suffer like we do, I hope I haven’t discouraged you but its important you have the facts. 

Many people can work and take care of their daily tasks while tapering and recovering, others aren’t so lucky, we never know who will be hit harder or why.  You could be one of the people who can still function during and after your taper, we don’t feel good but we can live our lives while waiting for recovery.

I guess I’m trying to soften the blow I’ve just delivered, I don’t want to discourage you when you’re dealing with so much. 

 

[[Li...]]

No, this is very important information for me. Thank you for the guidance.

[Guest [...]]

Hi Liam,

Chronic TBD suffer here. It's a horror show. It all started 4.5 yrs ago when I tapered a psych drug and finally went to a Lyme literate physician for treatment. In that same time frame my world crashed down and I was never ever the same, only became worse.

I am on my 2nd lyme doctor and even she cannot figure me out.

Everyday is ground hog day. These "diseases" what ever is plaguing me not only stole my life and soul, but alot of other things taken as collateral. I was never the same once I entered treatment. I've been sick for about 26 yrs. I'm 38 yrs old.

Like you, I have neuro lyme, Bartonella,  Babesia. As well as EBV, mycotoxins, MCAS. My mental health is the worst it's ever been in my life. I've exhausted so many financial resources (with help from family too),to regain my health but it's only putting me deeper into a hole.

I'm very sorry to hear of your struggles.  You don't know who or what to believe anymore and dealing with these ailments that are still so controversial.

[[Li...]]

Hey Sunflower,

Yah my story is nearly identical to yours. 

Horrible we've spent so much of our lives this way.

Certainly one of the worst diseases on the planet. Everyone, including most doctors, think it is like a flu. 

I hope you make some miraculous turn around. It does happen. 

[[me...]]

On 01/10/2023 at 02:51, [[L...] said:

Hello @[Pa...]

I have a complex chronic illness doctor who knows I am tapering, but I am doing it on my own. I also have a parent who I live with who is a psychiatrist.

My goal is to be benzo free so that I can try a controversial treatment method that requires I be off all medications. I was kinda vague and deliberately omitted the treatments name because it is fairly controversial, and I don't want it to become the subject of this. Whatever tho. It is called medically supervised fractional dry-fasting. Basically, successively larger rounds of fasting without drinking water for up to 9 days while being supervised by a doctor who developed this method as well as a proper way to rehydrate and refeed the body after. It's become a popular last resort treatment for people with very serious tick-borne illness, auto-immune diseases, and Long-Covid. A woman who had severe neuro-lyme recently wrote a book how it saved her life that sparked its popularity. 

When you say "be benzo free but probably not symptom free in the time you’re suggesting," do you mean that it is common to have some lingering benzo withdrawal symptoms for a period of time--without it necessarily becoming a protracted situation?

Thank you for your encouragement. Yes I am focusing on the positives. I have already been through serious hell so and have developed a tolerance for suffering. But I know to be prudent about removing this drug. Thanks again.

Liam GallagerLg. I'm interested in the dry fasting regime would you mind giving me the name of the book don't wry if you can't I have auto immune disease 

Wishing you healing you are going through alot you sound strong🙏

 

[[Li...]]

Dr. Filonov Dry Fasting 20 questions & answers - he also does online group meetings, retreats, courses

Another resource is thedryfastingclub dot com

There is also a book on amazon written by this former astronaut called The Phoenix Protocol - the book cover looks hokey but it dives into the science pretty well

[[Co...]]

https://www.webmd.com/diet/is-dry-fasting-safe

https://www.healthline.com/health/food-nutrition/dry-fasting

https://www.latimes.com/lifestyle/story/2020-02-13/dry-fasting-benefits-dangers

Careful, peeps.

 

[[Li...]]

Thanks for the "links of caution." These are medically supervised fasts. Science is just beginning to look at dry fasting and is seeing it has profound effects on the human body. For example, it is by far the most potent inducer of autophagy. Yes, there are risks. But none of those articles are informed, at all. Imagine citing Webmd or Healthline about benzo withdrawal 10 years ago......

I deliberately did not advocate using this method if you read my feed. I am dealing with an illness that will very likely kill me in my youth and have exhausted all traditional and alternative medical interventions. So I am willing to take some risks. I've talked to hundreds of people who have healed from illnesses like mine using this method. There are groups similar to benzo buddies growing rapidly surrounding this method. 

"You will be rewarded no points and may god have mercy on your soul"

JK ab that last part.

LG

[[me...]]

On 08/10/2023 at 07:10, [[L...] said:

Dr. Filonov Dry Fasting 20 questions & answers - he also does online group meetings, retreats, courses

Another resource is thedryfastingclub dot com

There is also a book on amazon written by this former astronaut called The Phoenix Protocol - the book cover looks hokey but it dives into the science pretty well

Thanks Liam Gallagher Lg 

I will look out for the book desperate means mean I will try anything...my body and mind has took alot of batterings operations.provedures medication spousal abuse. To name a few. I could do with going to a deserted island for a couple years away from polypharmacey.and the stress of it all. And family that don't or won't understand I wish you healing and thankyou🙏