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Posted 10/26/2018 1:40 PM (GMT 0)
I can grind my jaw and endure this 99% of the time and I never, ever ever write posts like this but this is the 1%.

Is it possible? To recover? I'm such a severe encephalopathy case and have been this bad for 5.5 years, sick for 7.5 with zero success. I try to not ask these questions and just focus on what's in front of me but this surfaces from time to time.

Has anyone heard of a recovery from this level of illness, this late in the game? I'm not a "tell me the sky is green" type of guy, i like to face reality regardless of what it is.

I read one post from Buhner on his website about a lady he worked with who seemed to be somewhat close to my level of psych damage and he said she recovered fully within a year. That was so amazing to hear! It's the only story i have read though so im wondering in general what the odds are here. Give it to me straight, no b.s. i like to know
Posted 10/26/2018 2:22 PM (GMT 0)
I was misdiagnosed for 10ish years before being correctly diagnosed and treated for Lyme and Co. My short term memory was on par with a goldfish-that is to say basically worthless. I even forgot who I was one day. I just blinked and suddenly I had no clue about where I was or even my name. I saw I had a pen in my hand that appeared to have been working on some kind of homework and ergo the name at the top of the page must be my own. I looked around and saw two girls were featured in most of the pictures in the room and I was either one of those girls or a stalker. A quick look in the mirror confirmed I was one of the girls-but still a stranger to myself. Thankfully after 30ish minutes of playing Sherlock my memories came flooding back and I feverishly wrote them down and began taping them to my dorm walls in case it happened again. I forgot how to do things like drive a car (not that I knew where the mess I was anyways-I barely recognized my hometown neighborhood) and the name for things/how to use them (e.g. screwdrivers). I had migraines on a daily basis to the point a day without them felt weird. This of course was on top of my other lyme symptoms (joint pain, heart issues, extremely low blood pressure, going days without being able to sleep, numbness over 80 percent of my body, air hunger, etc.). It got to the point that my doctors finally sat me down at age 21 and told me that they would make me as comfortable as possible in my remaining time. They didn't think I would make it to graduation let alone to 30. I didn't fear death because I knew exactly where I was going. I was tired of fighting but my mother begged me to just see one more doctor. Thankfully this doctor was the one who correctly diagnosed me with Lyme & Co. A couple of years of treatment brought me into remission. My memory is not a great as it was pre-lyme but it is significantly better and gets better each year. I had to relearn some things and I still stumble across a random object that I know I should know but the word just escapes me so I have to relearn it (e.g. squash or how to turn on the lawn mower). I was in remission for 5ish years and just recently had a mild relapse. So far just a few intense headaches but my previous neuro issues thankfully have not reared their ugly heads. In short there is always hope. I'm 28 now and will be 29 in a few short months. Even though I have relapsed I still plan on having the biggest 30th birthday party. Most women I know dread that year but for me it marks a victory that I never thought I would reach. My hope is that by then it will be a double celebration and that I will be in remission by then as well.

Happiness can be found, even in the darkest of times, if one only remembers to turn on the light--Dumbledore.
Posted 10/26/2018 3:14 PM (GMT 0)
I think recovery is possible. Maybe not perfect 100%, but 90%+ for most patients, even severe cases. Something is driving that inflammation and encephalopathy, and hopefully once the driving cause is addressed it should improve with consistent treatment.

Does your doc suspect babesia is key in driving your symptoms?

How are you doing with your starting protocols? I think the response to the babesia protocols will be telling. If you herx a lot, or improve a lot, either response will be good because it means the meds are effective and you are on the right track. Such a response would indicate that babesia is an important player in driving symptoms. I really hope they prove effective for you, would give you a pathway forward for improvement which I really really hope you find.

My guess is if you asked your doc they would say recovery is possible but it will likely be a long tough grind.

Def would hold on to that recovery story you read about. Maybe print it out. It always helped me to revisit those stories that mirrored my own where people recovered. Showed me it was possible. And hope is so important with this stuff!
Posted 10/26/2018 3:39 PM (GMT 0)
I had a death sentence that was bs...the question is what lenghts are you willing to go to, in order to get well?
Posted 10/26/2018 4:03 PM (GMT 0)
I was twice hospitalized with brain encephalitis, my head swelled up I could not put on a baseball hat.

My symptoms were severe; memory loss, confusion, seizures, vertigo, falling down, nerve damage, sight and hearing issues, constant head pain/pressure et etc.

I have tried so many things to get better. So many protocols. Changed everything in my life. But I’m lately feeling some positive momentum and had some good days in row! I’m not 100% but I’m leaving the house, feeling better in many ways.

I had to treat for ammonia, mold, parasites and babesia (tick born protozoan blood infection)

The cheapest most effective treatment that helped was a triple combo of;
1-3 pints homemade 9v colloidal silver, Ozonated Water, and MMS. 2-5 x per day. Helped me out immensely my first go around.

This last phase the dr klinghardt protocol, with invermectin, pyrantel, albendazole, alinia have been clearing my head nicely.

I also work with magnetic pairs especially on my thymus and back of neck. Practice neuroplasticity. Neural retraining, meditation and Deep breathing through the top of my head down through my body. Trying to rewire the body.

Be well
Posted 10/26/2018 4:23 PM (GMT 0)
Thanks, guys. Yah I've been in the psychosis/don't know who i am/dont know who my parents are/ paranoid delusion state for 5.5 years without ease or relent. The full moon or eating one wrong food will cause me intense night terrors where ill wake up in the woods, drenched in sweat, spitting out pieces of my teeth from grinding my jaw so hard and with pulled muscles from being too tensed. This is minimum 5 nights/week for 5.5 years now. If Dr J's treatments don't show soke effect soon i don't know how much more i can take.

BookWyrm- it's awful that that happened to you but badass on your recovery. 30's are better than 20's, you're just as youthful but smarter and more refined. You have earned it more than anyone.

Sebreg- good to hear from you, dude. I need to email you back but i just haven't been able to muster up the mental energy to write it. The anxiety is so bad this morn that it gave me the overdrive gear to write this post.
I go back Nov 6 for the first round of abx. The nurse told me (i think) tgat they start lyme treatment, then add in protozoa, then add in bartonella. I'm hoping that she starts me on lyme and babesia together since it seems i fit the babesia symptom profile so closely. I'd rather go too hard and have to pull back vs going too slow and end up sitting around till my next appt.

The "stabalization" med.s they have me on def do me no favors- really they just make existing problems worse. Im much more spacey, mentally detached and my memory has declined further. Whatever though, i have to do them. Anxiously awaiting Nov 6
Posted 10/26/2018 4:38 PM (GMT 0)
Dang, I was hoping the "stabilization" meds might help. It is so hit or miss with that stuff. I probably mentioned this to you before but I find gabapentin helpful for all my autonomic nervous system symptoms. It's annoying because it zombifies me but it helps me tolerate treatments. I tend to get real bad ANS symptoms when I treat babesia aggressively (I'm talking suffocating air hunger, insomnia, head pain, inability to concentrate, anxiety/restlessness, etc), I still have to be careful not to overdo treatment because I can still trigger bad episodes of those symptoms but the gaba helps increase my margins.

And absolutely no worries on the email front. 100% get it, just keep fighting and keep hanging in there. I hope you will make progress on the babesia protocols (and all the protocols in general). And if you herx strongly fingers crossed they can give you stuff that helps you manage through it.

No matter what, I think that the upcoming protocols will help give you clearer answers as to what direction you need to keep taking treatment.
Posted 10/26/2018 4:40 PM (GMT 0)
Hey Aerose,

im just writing to tell you to hang on longer.. i was absolutely bedridden in Feb 2017... i didnt know who anyone was.. it was awful...i couldnt leave the house because i would have awful attack of anxiety and stuff... i would hyperventilate in a grocery store...
but ive been treating for 16 months and im soooo much better... i work full time, coach, take care of my kids, cook, etc....
so there is hope... you got this.. we all do!!

btw what stabilization meds are you on?
Posted 10/26/2018 5:06 PM (GMT 0)
Aerose - So, are you on stabilizing meds only - ie sleep/anxiety....etc.?

No abx yet?


I'm thinking they may just start you on lyme abx for a few months...before hitting babesia.

I see that happening often.

I'm thinking I got babesia meds right away because I had already treated Babesia on my own for several months...and I was quite stable.
(although my husband rated my cognitive function really low - like a 1 or 2 out of 10). The NP pretty much scolded him and said that a 1 or 2 is pretty much non-functioning...and she could see I was functioning quite well.
I had rated my cognitive function as a 7 at the time...and the NP said that was more accurate from what she could tell.
His explanation is he was rating my absolute worse 'moments'. And, yes I've had some hours...days where I was quite bad...cognitively...but I have always been able to take care of myself...ie get dressed...feed myself...etc.


He hasn't lived that down yet.

I know you want to hurry it up...get to the 'meat' of the treatment...but try to be patient...you will get there.


Feel free to email me anytime, Aerose. If you have any questions about the J clinic process (I don't like to get into too much details on the forum)....or if you just need to vent.

And, yes people have gotten better who have had really severe cases.
Many of us have gone through periods that were really bad...just ask my husband....lol.
Posted 10/26/2018 6:00 PM (GMT 0)
Aerose,

I am of the personal belief that anything is possible. My belief is rooted in the Bible.

Mark 10:27 says
"But Jesus looked at them and said, 'With men it is impossible, but not with God; for with God all things are possible'."

In other words, even if doctors don't understand it, treatment doesn't seem to fix it, and no one one else has ever recovered from it, it STILL is not impossible with God.

As you've already heard from some of the posts here, some other people have also been through some pretty severe and hopeless type stuff and come out better, if not fully recovered.
Posted 10/26/2018 7:19 PM (GMT 0)

bluelyme said...
I had a death sentence that was bs...the question is what lenghts are you willing to go to, in order to get well?

That's something you don't need to worry about with me

After 2.5 yrs of severe illness and no diagnosis or improvement i decided I'd had enough. I got rid of all my belongings, built a portable kitchen setup and a self sustaining water filtration system and took off for the desert. I drove for 7 days until i found a spot far off the grid and set up camp there. Despite a couple coyote attacks it was the happiest id been within my disease because it was the first time i saw any slight improvement. An ill fated sandstorm cut my time out there short but i now knew how important environment was so i drove back to Connecticut, pulled the passenger seat out of my truck and built a wooden platform to sleep on. For the past 3.5 years ive been living in my truck, cooking on a small butane stove and relocating throughout the country based on seasons and climate. I could write a 400 page book on all of my experiences to this point, even my doctors tell me to, lol.
Dr J is it, he's the last stop. He's the 26th doctor. After this there's nothing left to try but if something new comes up, i will do it without hesitation. I care nothing about my comfort or safety, only what the illness requires. If i find that eating dog crap will surely get me better, im not complaining- im going out and buying a dog.
Me not putting in 100% is not something that is a concern here.
Posted 10/26/2018 7:33 PM (GMT 0)
Thanks so much for the support, guys. Ill be honest, after so long with no progress, the idea of 2-3 more years, even if seeing improvement feels insurmountable. If someone told me 6 months i could handle that but years more seems terrible.

Girlie- no, no abx yet. She said 1 month of the stabalization stuff then abx when i go back next. I believe she said 4 to start? I don't remember tho. I have one more "stabalizing" med to start next week- Diamox- then back to the clinic Nov 6.

I may reach out to talk to you more about your experience there.
Posted 10/27/2018 1:40 AM (GMT 0)

WalkingbyFaith said...
Aerose,

I am of the personal belief that anything is possible. My belief is rooted in the Bible.

Mark 10:27 says
"But Jesus looked at them and said, 'With men it is impossible, but not with God; for with God all things are possible'."

In other words, even if doctors don't understand it, treatment doesn't seem to fix it, and no one one else has ever recovered from it, it STILL is not impossible with God.

As you've already heard from some of the posts here, some other people have also been through some pretty severe and hopeless type stuff and come out better, if not fully recovered.

Thank you for sending that, Walking. I'm not a religious man, personally but i sincerely appreciate the expression of support. I sure hope God has a reason for us enduring all this
Posted 10/27/2018 12:03 PM (GMT 0)
Monolaurin is what has saved me. I hate to say it on so many threads but it has truly been the best treatment I've found. Also, food grade diatomaceous earth is great too. Kills germs, parasites, contains minerals, etc..
Posted 10/27/2018 12:19 PM (GMT 0)
Aerose, I don't think you have to worry about going too slow and sitting around with Dr. J's clinic after the stabilization phase. He's aggressive. I'm always pulling back and toning it down because it's too much for me. I think you're in the right place!

My issue is more what bluelyme raised. I am getting despondent because I'm afraid of most of the meds I'm not already on due to some scary reactions. But anyway.

I am looking forward to hearing how treatment there goes for you. I expect that you will see progress.
Posted 10/27/2018 2:14 PM (GMT 0)

Dahlias said...
Aerose, I don't think you have to worry about going too slow and sitting around with Dr. J's clinic after the stabilization phase. He's aggressive. I'm always pulling back and toning it down because it's too much for me. I think you're in the right place!

My issue is more what bluelyme raised. I am getting despondent because I'm afraid of most of the meds I'm not already on due to some scary reactions. But anyway.

I am looking forward to hearing how treatment there goes for you. I expect that you will see progress.

That's good to hear, i want to go hard! Much rather have to pull back than speed up. How much progress would you say you've made in 17 months?
Posted 10/27/2018 3:39 PM (GMT 0)

Dahlias said...
Aerose, I don't think you have to worry about going too slow and sitting around with Dr. J's clinic after the stabilization phase. He's aggressive. I'm always pulling back and toning it down because it's too much for me. I think you're in the right place!

My issue is more what bluelyme raised. I am getting despondent because I'm afraid of most of the meds I'm not already on due to some scary reactions. But anyway.

I am looking forward to hearing how treatment there goes for you. I expect that you will see progress.

I pull back sometimes too. Today I’m not taking the minocycline with the Clindamycin,Rifabutin, flucanazole and Flagyl.
I have a celebration of life early afternoon and mino hits my head hard. I’m seeing people that I haven’t seen for many years and I want to be fully functional.
Posted 10/27/2018 3:45 PM (GMT 0)

Aerose91 said...

Dahlias said...
Aerose, I don't think you have to worry about going too slow and sitting around with Dr. J's clinic after the stabilization phase. He's aggressive. I'm always pulling back and toning it down because it's too much for me. I think you're in the right place!

My issue is more what bluelyme raised. I am getting despondent because I'm afraid of most of the meds I'm not already on due to some scary reactions. But anyway.

I am looking forward to hearing how treatment there goes for you. I expect that you will see progress.

That's good to hear, i want to go hard! Much rather have to pull back than speed up. How much progress would you say you've made in 17 months?

I don’t think you will be disappointed then.

But please stay safe!
Posted 10/27/2018 4:31 PM (GMT 0)

Aerose91 said...
That's good to hear, i want to go hard! Much rather have to pull back than speed up. How much progress would you say you've made in 17 months?

I've been with the clinic for 12 months now (first 5 months of treatment were elsewhere). When I started there, I couldn't drive, couldn't walk from one end of a store to the other (or sometimes even into the store), couldn't walk across a street because I was afraid I'd pass out in the middle. My eyes didn't want to work together. I would get dizzy just from sitting up too long. I had to wear support stockings to keep more of my blood in my torso and head. I would drop food because I'd miss my mouth. I'd lift my arm to get something and then startled by the sight of my own arm lifting. I'd look at a street sign and have to work for several seconds to think what the 4 and the 5 and the mph meant together. Also have had phases with night panics and drenching sweats.

By May there were days I would say I was 75% better. I've had some setbacks since then, so maybe 60% right now. I feel like it's constantly trying to attack and take over again, and I have some new symptoms, but no doubt I am so much better than last year at this time. The best part is that I can think without feeling like I'm trying to shove the thoughts through a brick wall. And I can stay on my feet without the blood draining from my upper body and pooling in my legs (as much, anyway).

Post Edited (Dahlias) : 10/27/2018 10:39:41 AM (GMT-6)

Posted 10/27/2018 4:35 PM (GMT 0)
I do second Girlie's comment to stay safe. His protocols can cause really strong herxes. It was a flare and a herx that made me as sick as I was last year (with a different doctor). I'm glad you're ready to pull back a bit if needed.
Posted 10/27/2018 4:44 PM (GMT 0)

Dahlias said...
I do second Girlie's comment to stay safe. His protocols can cause really strong herxes. It was a flare and a herx that made me as sick as I was last year (with a different doctor). I'm glad you're ready to pull back a bit if needed.

Dahlias - do you think it is supportive meds from the J Clinic...or the treatments to reduce pathogen load has been the game-changer for you so far?

Sorry for the hijack, Aerose. But, I think this is a helpful query.
Posted 10/27/2018 5:38 PM (GMT 0)

Girlie said...

Dahlias said...
I do second Girlie's comment to stay safe. His protocols can cause really strong herxes. It was a flare and a herx that made me as sick as I was last year (with a different doctor). I'm glad you're ready to pull back a bit if needed.

Dahlias - do you think it is supportive meds from the J Clinic...or the treatments to reduce pathogen load has been the game-changer for you so far?

Sorry for the hijack, Aerose. But, I think this is a helpful query.

I refused all the supportive meds (well, I tried one for inflammation and reacted badly to it). It's all pathogen load.
Posted 10/27/2018 5:41 PM (GMT 0)

Dahlias said...

Girlie said...

Dahlias said...
I do second Girlie's comment to stay safe. His protocols can cause really strong herxes. It was a flare and a herx that made me as sick as I was last year (with a different doctor). I'm glad you're ready to pull back a bit if needed.

Dahlias - do you think it is supportive meds from the J Clinic...or the treatments to reduce pathogen load has been the game-changer for you so far?

Sorry for the hijack, Aerose. But, I think this is a helpful query.

I refused all the supportive meds (well, I tried one for inflammation and reacted badly to it). It's all pathogen load.

okay - lol...you sound like me. I'm more leery of the support meds than the anti-infective treatments.
I was given Gabapentine to try (had already previously tried it) so I did take it for two weeks, but wasn't willing to go higher in dosage.
Last appt., Dr. J. prescribed lyrica (for nerve pain ) since I told him the Gabapentine didn't work.
Plus another med (anti-seizure) to take with it.
I haven't taken either.
Posted 10/27/2018 8:59 PM (GMT 0)

Girlie said...

Dahlias said...

Girlie said...

Dahlias said...
I do second Girlie's comment to stay safe. His protocols can cause really strong herxes. It was a flare and a herx that made me as sick as I was last year (with a different doctor). I'm glad you're ready to pull back a bit if needed.

Dahlias - do you think it is supportive meds from the J Clinic...or the treatments to reduce pathogen load has been the game-changer for you so far?

Sorry for the hijack, Aerose. But, I think this is a helpful query.

I refused all the supportive meds (well, I tried one for inflammation and reacted badly to it). It's all pathogen load.

okay - lol...you sound like me. I'm more leery of the support meds than the anti-infective treatments.
I was given Gabapentine to try (had already previously tried it) so I did take it for two weeks, but wasn't willing to go higher in dosage.
Last appt., Dr. J. prescribed lyrica (for nerve pain ) since I told him the Gabapentine didn't work.
Plus another med (anti-seizure) to take with it.
I haven't taken either.

Yah im doing badly with the supportive med.s so far. Prazosin does very little and Lamictal makes me so spacey and distant. Hopefully they'll take me off them when i go back
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