Will My Brain Ever Work Again? No Clarity Ever.

New Topic Post Reply Printable Version
44 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/12/2017 10:01 AM (GMT -7)   
And my heart, eyes, ears, etc.


But mostly concerned about my brain. Undiagnosed Neuro Lyme and Bart for several years. Just diagnosed a little over a month ago and treating with first round of abx.


But the brain fog and memory loss scare me to pieces. I can't even really remember things from a long time ago let alone a few minutes ago. I write everything down but have written down so much it just overwhelms me.

I can't function in my present state. Totally out of it 24/7. Feels like my brain has been disconnected for the last year at least and it only got worse. I've had some worsening of some symptoms since I started abx, for me it's been the fog, memory issues, lack of concentration, heart palps and racing, red, irritated eyes, worsening tinnitus mainly.

This is all years after suffering chronic, misdiagnosed intractable pain and migraines. Well, I basically rather have all that back then not be able to even think. I feel like my sense of self is gone and always in a haze and NO ONE around me understands. I'm staying with family because I lost everything. I feel like a complete failure and invalid. Not even 40 yet and scared all the time that I'm getting ALZ.

And today, I'm missing another family event because I'm too out of it and ashamed that my hands keep shaking from herxing apparently. I'm still trying to learn about all this but that didn't really get worse until I started ABX. No one around to visit or help or support me.

ANother lost and scared day. I know I posted something similar the other day. I would do anything to get my brain back and just even feel like myself again. Anything.

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/12/2017 10:16 AM (GMT -7)   
I'm sorry you're feeling this bad.

Are you doing anything to detox? A few things that really help my brain fog are burbur-pinella tincture, and chinese cats claw.

Maybe these would help you?

I know there are others who talk about detoxing ammonia from the brain -- I don't have experience with that but hopefully someone can chime in about it.

There is hope! Many feel better with treatment, but it does take time.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/12/2017 10:34 AM (GMT -7)   
Thanks countingstarsx smile


I was taking cat's claw caps along with my other supps and abx. Even though it wasn't one that my LLMD recommended. I'm starting to get more info online then him unfortunately and I'm starting to lose some faith. He didn't even recommend any detox methods either. Saw him twice and I try to tell him how bad this is but not really listening. He's the only one around for miles and is very busy, but it might be time to start looking for a new one.

Last week when I saw him he did suggest adding teasel root and another one I can't remember the name of right now. Start's with an A and ends with a gia or graphia I think? I need to go look at what he wrote down.

I did recently read about burbur-pinella and again, he never mentioned it but I decided to order a bottle yesterday to try. I'm just really going broke here. I can't work and need to be able to get back some functionality soon. I know it will take some time, at least he told me that but there has to be more I can do right now for this. My brain is wrapped in a huge amount of cotton right now. Early onset alz that my mother has as well. I'm terrified. sad

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/12/2017 10:40 AM (GMT -7)   
Oh, regarding the cat's claw. I thought it might have been making my herx worse but now I think maybe it was just the abx? I'm slowly giving it another shot as of yesterday but I'm probably not even taking enough for it to make a difference.

Some of my other symptoms have worsened the last few weeks like heart palps, tinnitus etc. Could this be part of herxing for me? The other things at least come and go and get better then return lately. But the brain stuff is consistent. I'm just a shell. When I talk or type people say I sound fine but my brain feels like it's floating and my personality is just gone. I want it all back sad

Hopefully the burbur-pinella will help when I get it. Thanks again.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3852
   Posted 11/12/2017 11:36 AM (GMT -7)   
There are so many possible issues going on with lymies in symptom mode - and the brain takes a tole from all of them. Detox is part of it, sleep is another biggie. Some people cant sleep, and some sleep all day without feeling refreshed. Finding what works for sleep is trial and error. The anxiety many people face makes you tired too. My brain always worked much better after a 10-20 min power nap, which I dont need to do as much anymore. D-limonine was the best detoxer I ever tried, still take every night for liver detox due to certain liver genes.

You will get better, it just gradually happens. Witnessing your body mind and soul whither away is a bottomless feeling at times. At my worst point, talking was hard. I sounded like a slow, stumbling, drunk re-tard, ......and people began to notice / they got impatient which made talking even worse. I'm pretty quick and witty again at work most days now..and can once again do things I enjoy.

Post Edited (astroman) : 11/12/2017 11:48:02 AM (GMT-7)


countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/12/2017 11:37 AM (GMT -7)   
Cat's claw does cause an increase in symptoms due to herxing for a lot -- I have read people here stating that it was a tough herb for them to start. I personally only herx a little on CC, but a TON with japanese knotweed. That could potentially be making things worse for you right now, and even small amounts can be enough to make a difference to sensitive people. With japanese knotweed I can't even take on drop of tincture a day without feeling miserable.

Detoxing is SO important. Have you implemented anything to help your body detox? I use alka-seltzer gold with lemon, milk thistle, cleavers tincture, burbur-pinella, chlorella, activated charcoal, and dry brushing. I take all of them daily, and it really makes a difference.

I'm guessing he suggested teasel and andrographis? Both are kill supplements, and will likely make things worse before they make them better. I would use caution adding them if you are already feeling this bad.

The burbur-pinella and chinese cats claw (the chinese part is important -- its used for neuro lyme and is different from regular), are both really great for neuro issues. I hope you notice improvement once you get the burbur-pinella!

For me herxing makes my normal symptoms worse. Not usually ALL of them at the same time, but its like my body picks 2-4 symptoms, and different ones each time, and they increase in intensity for a few days before going back down. Its different for everyone though.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1221
   Posted 11/12/2017 12:52 PM (GMT -7)   
I would be sure and keep a journal so you can look back and see if the cats claw is causing too much of an increase on symptoms , not herxing but more like you may not be able to tolerate the cats claw.

I had issues with cats claw and still barely can take the tomentosa one. However the Uncaria rychophylla i can take. That one is very helpful for neuro Lyme.


Also make sure to incorporate a binder into your protocol(activated charcoal or zeolite) This will help to get ri of toxins and help with some of the herxing. Just remember take it 2 hours away from any medications/ABX/Herbals. It will bind them too.


Take care and hope you have a better day soon, Jo

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27364
   Posted 11/12/2017 1:46 PM (GMT -7)   
Mergirl - it is scary when our brains are affected.

I can tell you that mine has improve ALOT. I think I'm at about 80% now. (It fluctuates)
It is worse when i'm stressed out.


I drove my car for two months without insurance. When the notification came in the mail, I filed it with my paid bills. Never have done that...ever.

I still pay several of my monthly bills with a cheque sent in the mail. I've had several returned because I didn't sign my cheque. Never had that happen before lyme.

It gets better with treatment and time.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/12/2017 2:47 PM (GMT -7)   
Thanks everyone,

Astroman. I appreciate the reassurance. Can I ask what you did to get you where you are? Herbals, abx, detox methods, besides the D liminione. First, I'm hearing of that one. Is it similar to alka seltzer with lemon? Someone recommended that one to me today.

My sleep is really bad. I'm trying hard to work on it but not much seems to help. Dr gave me pills, they don't do much, I tried the all natural stuff too. I get maybe 4 maybe 5 hours of broken up sleep a night if I'm lucky. A couple of hours of rem sleep where I have disturbing dreams. Napping during the day never happens as hard as I try sometimes. My body won't relax and the bad heart palps I get keep me up. I feel like this Is killing my major organs. I'm scared .


Countingstarsx,


You have a point there about the Japanese knotweed. That's a tincture and the cc I'd caps. I maybe taking too much of the Japanese knotweed and maybe that one has been making things worse. Although as far as my brain not working at all, I felt like that before I took any herbals. My llmd was just pretty much like here. Take all this stuff. Really not feeling good about this. My brain and heart are going haywire lately among other things

And come to think of it, I think that cats claw I have is just that. Not the Chinese kind. Wasn't even aware there was a difference. Trying to learn what I can to help myself but it's been so much and NY brain just isn't moving. I can't believe this.

I've been detoxing but maybe I need to step things up there. So far I do dry brushing and Epsom salt baths every other day, lemon water and occasionally taking charcoal. I'm now trying citrus pectin someone else recommended on another thread because I have possible mold injury as well.

My llmd didn't even warn me about the new herbals. I'm starting to feel like he takes a one size fits all approach. I feel so lost. If I feel like he's not going to listen or make me better what can I do? I need to be able to take care of myself. I lost everything I owned, my house, job, car, etc and living in a family's broken down old house. I feel like dying would be preferable. At least when I just had pain I could still thibk and remember.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/12/2017 3:19 PM (GMT -7)   
Thanks so much goshawk,

Yeah, I'm beginning to learn more about how important those binders are. Would you say citrus pectin is comparable to charcoal or is one better then the other? I'm also trying to get used to spacing everything out. I was never the most organized person even before I got sick a long time ago. I'm constantly timing everything as far as meds and sups and now binders. It's really hard with my brain.

Ill also try to remember to write in my journal. I started to when I started meds to try to keep track of my symptoms but lately I'm finding I forget to write in it most days and end up only doing it here and there. I need to use more post it's I guess. :/


Girlie,


Thanks so much for your continued support and comfort.

I know everyone is different but how long do you think it took you to reach 80% I wish I lived in an area with more LLmDs or more then just one who runs the place like a clinic. I want to be heard ya know, and so far it's not happening. Just like all the other docs I've been to over the years rush rush rush. I tried to get across how severe this is and he cuts me off telling Mr about another patient who was hallucinating in his office. OK, great but can you listen to me now?!

Driving is another thing that depresses me daily. I used to love to drive and miss any and all aspects of independence including that. I used to just drive when I was upset. Now I haven't driven in months. Not only because of the brain fog and memory problems but the blurry vision as well. That's one of my lesser symptoms that actually seems a little better. But I sold my car two years ago because I was in so much pain in my eyes and face and head and neck I had to stop, then in the last several months because of feeling completely out of my head and not knowing why until recently.

I want some normalcy back so bad. I have so much to rebuild. It's literally killing me that I'm close to middle age, am alone and have to depend on a couple of people to get around and survive with a roof over my head. I just can't believe this. Everyday I just want to give up lately. Every day.


I appreciate every single response. I really do.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1221
   Posted 11/12/2017 4:01 PM (GMT -7)   
I know its very difficult and you feel like it wont get better, but I have read here before that others have healed or had improvements. There is hope to get better.

I remember feeling like you do, and I thought I was going to die with all the neuro symptoms.

It has taken about 13 months but I'm near 95 to 98 %.

Sometimes we have to change llmd's or the way we are treating. We also need to address any other health issues/deficiencies/in balances we may have.

It is so critical for you to get some sleep , your body needs rest to help you fight these infections.

You had said you tried different things for sleep have you tried melatonin liquid?

if you have and it did not work, Buhner suggest trying Motherwort fresh plant tincture, 1/4 ounce(he says yes that amount) in liquid right before bed. (P.222 Healing Lyme 2nd Ed.) and/or

tryptophan ,1000 mg just before bed.(p.222 Healing Lyme,2nd Ed.)

If nuero is your worst symptoms I would consider reading and checking out Buhner's Neuro protocol.

Just please check for possible side effects and contradictions I am not a medical person, just reading from his book.

On Binders: I am only familiar with the zeo lite and charcoal, I haven't tried the citrus yet.
Hopefully another member will comment on that.

I know this is all very hard and overwhelming, but please know that we are here for support and even though we arnt there with you in person, we are here, we are real and we care.

I hope you have a restful night and I wish you the best of healing, Jo

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27364
   Posted 11/12/2017 4:04 PM (GMT -7)   
i have been treating for 3 years now.

I think I reached 80% brain function about 6 months ago. (so 2 1/2 years of treatment) but it has been getting better little by little with ups and downs from shortly after treatment started. It really picked up when I treated Bartonella.

I wish the rest of me was at 80%, too.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/12/2017 6:01 PM (GMT -7)   
Mergirl said...

Countingstarsx,


You have a point there about the Japanese knotweed. That's a tincture and the cc I'd caps. I maybe taking too much of the Japanese knotweed and maybe that one has been making things worse. Although as far as my brain not working at all, I felt like that before I took any herbals. My llmd was just pretty much like here. Take all this stuff. Really not feeling good about this. My brain and heart are going haywire lately among other things

And come to think of it, I think that cats claw I have is just that. Not the Chinese kind. Wasn't even aware there was a difference. Trying to learn what I can to help myself but it's been so much and NY brain just isn't moving. I can't believe this.

I've been detoxing but maybe I need to step things up there. So far I do dry brushing and Epsom salt baths every other day, lemon water and occasionally taking charcoal. I'm now trying citrus pectin someone else recommended on another thread because I have possible mold injury as well.

My llmd didn't even warn me about the new herbals. I'm starting to feel like he takes a one size fits all approach. I feel so lost. If I feel like he's not going to listen or make me better what can I do? I need to be able to take care of myself. I lost everything I owned, my house, job, car, etc and living in a family's broken down old house. I feel like dying would be preferable. At least when I just had pain I could still thibk and remember.


I would definitely up your detox methods. Before I started doing so much detox I really couldn't handle much.

I also think that it is really really important to have a doc that you trust and can communicate with. I didn't trust mine, so I fired him. I'm self treating now, and a lot better off for it.

Lightlife
Regular Member


Date Joined Jan 2017
Total Posts : 154
   Posted 11/12/2017 7:27 PM (GMT -7)   
I second Bruhners herbs for neuro Lyme. ( Chinese cats claw and chineses skullcap are the two, not sure if any others...add that to core protocol) Investigate... coinfections. Also can try ashwaganda at night for sleep and brain fog. ... check individually for trial period to see how you respond. Some help sometimes they make worse...
Also check your meds... did the brain fog get worse after treatment?? If so maybe back off on dosage or treatment. I like the herbal approach as you can modify...just have to keep reading studying... bruhner book can help. Go slow low back off on needed...
You Can feel better you will don't give up...

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3852
   Posted 11/12/2017 8:03 PM (GMT -7)   
Mergirl said...
"Thanks everyone,

Astroman. I appreciate the reassurance. Can I ask what you did to get you where you are? Herbals, abx, detox methods, besides the D liminione. First, I'm hearing of that one. Is it similar to alka seltzer with lemon? Someone recommended that one to me today."

-Well, I functioned with this for 20 years before it got real bad and I started goggling health stuff 10 years ago. No internet back then = screwed! All the lyme herbals seemed confusing and it was really hard for me to read/study this stuff, so I did ABX off/on for 14 months with a LLMD 2 hours away. Many here do herbs and get well, I took the easy route as my brain was fried. I had been Dxed hashimoto in 97, so this and adrenal issues complicated things with overlapping symptoms. And candida with leaky gut - more overlapping symptoms. It was a puzzle and I hated puzzles as a kid.

In a nutshell: LLMD treated leaky gut first, then four abx for 14 months with several candida treatments in between. Took adrenal support herbs the whole time and even a tremor Rx.

Last ABX was over two years ago, I've been rebuilding my muscles and tendons since then (I could almost be a PT by now minus the degree) while eating real clean to try heal gut more and to lower hashimoto antibodies (one of two did lower on two test times). Immune is in the gut. Some days I feel close to 100% better, some days 80%. I think whats left is hashimoto + lyme damage that might improve in time (nervous system and muscles).

Post Edited (astroman) : 11/13/2017 8:03:12 AM (GMT-7)


Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/13/2017 7:27 AM (GMT -7)   
Goshawk and Lightlife,


Thank you. Wow, 95 to 98%? That's definitely encouraging.

I may have to change llmds or methods but I'm wondering if maybe it's too early for that? I've had this for years and just getting diagnosed but only been treating for a month. Lately, I've been taking doxy and ceftin with many supps and a few herbals recommended by llmd. Now he wants me to stop the doxy for a week and just take ceftin. I started this yesterday and only took my first dose of japanese knotweed before reading on here that it could be making my brain symptoms worse.

Well, last night I felt a little more clearer in the head. It was coming in spurts and still had memory issues and trouble with thinking. But just noticed a slight clearing. Even this morning. At least a little more then when I made my original post yesterday. I'm trying to figure out what all this might mean.

My gut was bothering me this morning though. I'm concerned that may be one of my underlying issues that you described. I'm hoping to see a naturopath soon that may be able to help these other possible imbalances. Trying to scrape the funds together for that.

I have tried melatonin but in pill form, not liquid. Never did much for me but I wasn't aware there was a liquid form. Maybe that might work better for me?

I've been trying to decide which book to read first and I see enough people on here mention and have success with Buhner's protocol. I'm going to attempt to read and comprehand in my current state. But I especially want to read if he talks about how to treat these brain issues.

Anyone here know if I can try his protocol while taking abx? I'm not sure if I'm ready to let those go yet. Anyone else do like a half and half kind of deal?

Thanks Lightlife for telling me I'll get better. It's just so hard to believe lately.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/13/2017 7:36 AM (GMT -7)   
Girlie said...
i have been treating for 3 years now.

I think I reached 80% brain function about 6 months ago. (so 2 1/2 years of treatment) but it has been getting better little by little with ups and downs from shortly after treatment started. It really picked up when I treated Bartonella.

I wish the rest of me was at 80%, too.




Thanks Girlie,

That is also encouraging.

I wish for you the same, the rest of you getting to 80% that is and I'm sure you will soon. I think I've noticed a very slight decrease in some of my less serious symptoms. Then again, they might have just kicked up as part of a Herx and now calming back down to normal. All this seems so hard to learn and guage.

I feel like I wear myself out daily looking for answers. Hours pass, I forget to do things I need to do just to survive and before I know it the day is gone. Just frustrating.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/13/2017 7:42 AM (GMT -7)   
Countingstarsx,

I'm not sure if it's too early to fire my LLMD. I feel like I'm kind of stuck there for now because he's the only one for miles. He does have a good rep but I'm just not sure if he will be the right one for me at this point. Or if I should give it more time. I'm thankful he finally diagnosed and started treating me based on my symptoms and past history when no one else would. I'm just feeling so unsure and not liking the fact that he spends very very little time with you, esp on follow up appts. It's only been a month of treating though.

You said you fired yours and started self treating. May I please ask how? Herbals? What method or protocol you used?

Thanks again.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/13/2017 7:56 AM (GMT -7)   
astroman said...
Mergirl said...
Thanks everyone,

Astroman. I appreciate the reassurance. Can I ask what you did to get you where you are? Herbals, abx, detox methods, besides the D liminione. First, I'm hearing of that one. Is it similar to alka seltzer with lemon? Someone recommended that one to me today.

My sleep is really bad. I'm trying hard to work on it but not much seems to help. Dr gave me pills, they don't do much, I tried the all natural stuff too. I get maybe 4 maybe 5 hours of broken up sleep a night if I'm lucky. A couple of hours of rem sleep where I have disturbing dreams. Napping during the day never happens as hard as I try sometimes. My body won't relax and the bad heart palps I get keep me up. I feel like this Is killing my major organs. I'm scared ."

Well, I functioned with this for 20 years before it got real bad and I started goggling health stuff 10 years ago. No internet back then = screwed! All the lyme herbals seemed confusing and it was really hard for me to read/study this stuff, so I did ABX off/on for 14 months with a LLMD 2 hours away. Many here do herbs and get well, I took the easy route as my brain was fried. I had been Dxed hashimoto in 97, so this and adrenal issues complicated things with overlapping symptoms. And candida with leaky gut - more overlapping symptoms. It was a puzzle and I hated puzzles as a kid.

In a nutshell: LLMD treated leaky gut first, then four abx for 14 months with several candida treatments in between. Took adrenal support herbs the whole time and even a tremor Rx.

Last ABX was over two years ago, I've been rebuilding my muscles and tendons since then (I could almost be a PT by now minus the degree) while eating real clean to try heal gut more and to lower hashimoto antibodies (one of two did lower on two test times). Immune is in the gut. Some days I feel close to 100% better, some days 80%. I think whats left is hashimoto + lyme damage that might improve in time (nervous system and muscles).



Thanks astroman,

Your another poster on here who has been very supportive of me and helpful with the threads I post.

You sound like you were where I am now. Brain is definitely fried. In fact, I remember telling someone that a little over a year ago. It felt like fried mush and I had no idea why. Absolutely none, and it just got worse from there.

I definitely suspect I have Candida overgrowth and or leaky gut. Infact that is one of the things that concern me with my current LLMD. He doesn't seem very interested in those issues and I always had gut problems going back to childhood. So I can only imagine what's going on in there now. Only thing he recommends is probiotics which I am taking of course but I also know I won't get very far with treatment if I have either of the above issues. Now I feel like I have to see a naturopath or functional med doc , another doc that I can't afford just to address the other issues that my llmd doesn't seem interested in. It would be nice to see one that addresses all of these things. I'm broke and tired and confused.

I'm just starting to do things to try to heal my gut on my own. Just started drinking bone broth and taking binders. I cut out all the bad stuff from my diet a while ago.

Can I ask when you say you're eatting real clean what that entails?

Thanks for your help.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3852
   Posted 11/13/2017 8:04 AM (GMT -7)   
Mergirl said...
astroman said...
Mergirl said...
Thanks everyone,

Astroman. I appreciate the reassurance. Can I ask what you did to get you where you are? Herbals, abx, detox methods, besides the D liminione. First, I'm hearing of that one. Is it similar to alka seltzer with lemon? Someone recommended that one to me today.

My sleep is really bad. I'm trying hard to work on it but not much seems to help. Dr gave me pills, they don't do much, I tried the all natural stuff too. I get maybe 4 maybe 5 hours of broken up sleep a night if I'm lucky. A couple of hours of rem sleep where I have disturbing dreams. Napping during the day never happens as hard as I try sometimes. My body won't relax and the bad heart palps I get keep me up. I feel like this Is killing my major organs. I'm scared ."

- Well, I functioned with this for 20 years before it got real bad and I started goggling health stuff 10 years ago. No internet back then = screwed! All the lyme herbals seemed confusing and it was really hard for me to read/study this stuff, so I did ABX off/on for 14 months with a LLMD 2 hours away. Many here do herbs and get well, I took the easy route as my brain was fried. I had been Dxed hashimoto in 97, so this and adrenal issues complicated things with overlapping symptoms. And candida with leaky gut - more overlapping symptoms. It was a puzzle and I hated puzzles as a kid.

In a nutshell: LLMD treated leaky gut first, then four abx for 14 months with several candida treatments in between. Took adrenal support herbs the whole time and even a tremor Rx.

Last ABX was over two years ago, I've been rebuilding my muscles and tendons since then (I could almost be a PT by now minus the degree) while eating real clean to try heal gut more and to lower hashimoto antibodies (one of two did lower on two test times). Immune is in the gut. Some days I feel close to 100% better, some days 80%. I think whats left is hashimoto + lyme damage that might improve in time (nervous system and muscles).



Thanks astroman,

Your another poster on here who has been very supportive of me and helpful with the threads I post.

You sound like you were where I am now. Brain is definitely fried. In fact, I remember telling someone that a little over a year ago. It felt like fried mush and I had no idea why. Absolutely none, and it just got worse from there.

I definitely suspect I have Candida overgrowth and or leaky gut. Infact that is one of the things that concern me with my current LLMD. He doesn't seem very interested in those issues and I always had gut problems going back to childhood. So I can only imagine what's going on in there now. Only thing he recommends is probiotics which I am taking of course but I also know I won't get very far with treatment if I have either of the above issues. Now I feel like I have to see a naturopath or functional med doc , another doc that I can't afford just to address the other issues that my llmd doesn't seem interested in. It would be nice to see one that addresses all of these things. I'm broke and tired and confused.

I'm just starting to do things to try to heal my gut on my own. Just started drinking bone broth and taking binders. I cut out all the bad stuff from my diet a while ago.

Can I ask when you say you're eatting real clean what that entails?

Thanks for your help.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3852
   Posted 11/13/2017 8:25 AM (GMT -7)   
Mergirl.... "Can I ask when you say you're eating real clean what that entails?"

- A few here eat "cleaner" than I do though. I tried avoiding certain foods in the past because of candida, but short term. I might have had SIBO too, which there was talk on that here last year about this time. There are different variations of clean diets obviously. I started the Whole30 version of Paleo, its slightly more restricted than Paleo itself. So no added sugar, no grains, no milk products, no gluten, no alcohol.. I added nonGMO corn chips and almond/rice g/f crackers a few months later for snacks. Drink almond milk. I avoid the fake g/f food baking stuff, cause its not natural and still candida food. I still eat meat, but way less beef and pork. My gut feels great on this diet. If I eat offenders, my gut worsens. Its known that individual gut reactions have a big impact on autoimmune developments, which I have.

So this diet will also help leaky gut and is good for my autoimmune conditions.

Being very honest here, I never announced myself as healed, because if I was, I would have no symptoms and I could eat anything like normal people. Function way better, so thats pretty good, but 100% is my dream. I think I would have to fully cure Hashimoto to feel no symptoms. If I developed that from lyme or other things , I have no idea.

I never did bone broth, many here have, good start.

Post Edited (astroman) : 11/13/2017 10:09:12 AM (GMT-7)


countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/13/2017 9:21 AM (GMT -7)   
Mergirl,

I am self treating using Buhners protocol. I bet that even with the worse brain fog it would be easy to start, all you really need to read is about 2 pages. On those 2 pages he lists out the core protocol with dosages. The following pages list out individual herbs for different symptoms. There are sections for neuro lyme among other things. The rest of the book is definitely helpful and useful, but not necessary to begin treatment.

And yes, Buhners is safe with antibiotics.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/13/2017 3:35 PM (GMT -7)   
Astroman,

Thanks for answering that for me. I'm still in the process of learning about the Paleo diet too and learning what I can and can't eat. I've always been lactose intolerant for the most part so been drinking almond and coconut milk for a while now.

I won't lie, I do miss good food now and then lately but I definitely would rather feel better for sure. With the bone broth, seems the challenge is to find one I can order that has no sugar, yeast, gluten or other things like that in it. That is also relatively inexpensive. Maybe eventually I'll start making my own but lately it just seems to be a little too much for me.



Countingstarsx,

Thank you. I just ordered Buhner's book. Can I leave out any of the herbs? I'm trying to figure this out but I think either the japanese knotweed or doxy has been making my brain fog much worse. I stopped doxy yesterday and just taking ceftin for a week but also realized it may be the knotweed causing my symptoms to worsen. I think I was also taking too much underestimating it. I didn't take any last night and only took a couple drops today.

Last night I noticed the fog lift just a little bit more then usual. Today too although it's off and on but not nearly as bad as it's been lately. So I'm writing this down and trying to figure out.

My brain still isn't working normally nor my memory. Not even close but it's a little improvement from the severity the last couple weeks. A couple of my other major symptoms seem a little bit lighter today too.

So, if I find it is the knotweed can I cut it out completely if I decide to try the protocol or just continue taking it at lower levels even if it makes things a little worse? If it turns out to be that and not the doxy? Japanese knotweed is one of the only herbals my llmd suggested from the beginning but never explained why really or what it does.

Also, I received my pinella burbur tincture already today. Since I haven't received my copy of healing lyme yet, how should I take it? Start off low and slow and take it with my other supps everyday?

Hope I'm not asking too much. Just not sure how to use all this stuff just yet. I guess I still have a lot to learn about herxing, detox, diet, etc etc.

This is where my old brain would come in handy!


Thank you all sooo much.

Casa11
Regular Member


Date Joined Jul 2017
Total Posts : 197
   Posted 11/13/2017 6:20 PM (GMT -7)   
Hi Mergirl, so sorry you're feeling this way!

I understand the fear that comes with the neuro issues. I always think the neuro/ mental stuff is the worst! Don't get me wrong, the physical stuff can be the worst too, but somehow doesn't make me panic in quite the same way as neuro/ mental stuff can.

I also understand the feeling of having lost your sense of self. Its indescribably awful. So often I look at my life & think " this isn't me, this isn't my life..." I just want to step out of this horrible life & back into my own body , my own life...(but of course on some level I know that this IS my life. ) For now. Only for NOW.

I think being dependent on family brings its own challenges. I am also unable to work, and my father & brother have been helping me extensively. I am so grateful to them for helping me, but it still hurts. I also lost almost everything, and that hurts too. It's hard to be so sick & not have a leg to stand on. It's hard to be so sick and know that any stability you have is not your own.

I try to remember that having family willing to help me is a great gift. I also try to remind myself that I DO bring something unique & special into my family & my relationships with family members- even though I feel like a total bum right now. You might try to remind yourself of the same thing.

I have to hold onto the belief that my body & brain & every single part of me will get better. I honestly believe that we can both heal. I know it will take time, and money, and probably different protocols for each of us, but I do believe it's possible.

Sounds like you've already gotten lots of great advice reguarding treatments, and detox etc... but , if you don't already you might want to try yogi brand detox tea- it's easy to add into your day & actually tastes good too. I alternate it with another 2 detox teas, but I think the yogi is the most gentle & easy to drink.

I also try to increase my turmeric intake when I'm feeling this way. I make tea eaither from the powder & some black pepper , or use a turmeric tea made by Traditional Medicinals. ( I also add black pepper to their tea. )

But basically I just wanted to reach out & say I'm thinking of you! Hang in there...

I'd say more, but I'm pretty brain fried myself right now.
Ps. Hope the burbur/pinella helps you! It has helped me!

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/13/2017 7:21 PM (GMT -7)   
Mergirl said...

Countingstarsx,

Thank you. I just ordered Buhner's book. Can I leave out any of the herbs? I'm trying to figure this out but I think either the japanese knotweed or doxy has been making my brain fog much worse. I stopped doxy yesterday and just taking ceftin for a week but also realized it may be the knotweed causing my symptoms to worsen. I think I was also taking too much underestimating it. I didn't take any last night and only took a couple drops today.

Last night I noticed the fog lift just a little bit more then usual. Today too although it's off and on but not nearly as bad as it's been lately. So I'm writing this down and trying to figure out.

My brain still isn't working normally nor my memory. Not even close but it's a little improvement from the severity the last couple weeks. A couple of my other major symptoms seem a little bit lighter today too.

So, if I find it is the knotweed can I cut it out completely if I decide to try the protocol or just continue taking it at lower levels even if it makes things a little worse? If it turns out to be that and not the doxy? Japanese knotweed is one of the only herbals my llmd suggested from the beginning but never explained why really or what it does.

Also, I received my pinella burbur tincture already today. Since I haven't received my copy of healing lyme yet, how should I take it? Start off low and slow and take it with my other supps everyday?

Hope I'm not asking too much. Just not sure how to use all this stuff just yet. I guess I still have a lot to learn about herxing, detox, diet, etc etc.

This is where my old brain would come in handy!


Thank you all sooo much.


Mergirl,
You're welcome! All of us here are pretty happy to help when we can. Consider us an excellent support system!

You can take or leave out anything, and he encourages it. The key is to start one at a time at very low doses and SLOWLY increase. I couldn't tolerate 1 drop of JK each time I tried, so I moved on to the other parts of the protocol. I took eleuthero for a few week, and then began having heart palpitations so I stopped taking that one too. I also chose to not take licorice root as well. Last night I decided to try 1/4 drop of JK, and I am definitely feeling it and herxing, but this time it is tolerable, and I expect that I will be able to slowly take it after all, but we will see. Point of all that -- the protocol is not one size fits and, and Buhner welcomes you to add and subtract and change it as necessary. All of it is just a suggestion, but a really good one!

Writing it all down is such a helpful thing. I have a notebook where I track what I take daily, and my symptoms. That way I can try and see if the herbs cause anything that gets worse. Its a routine that takes some time to establish, but well worth the effort.

Burbur-pinella is actually a part of the Cowden protocol, so you wont find information about it in the Buhner book. A lot of people can just start taking it full dose and it makes them feel better right away. I tend to be on the sensitive side so I took a slower approach with 5 drops once a day, 10 the next, etc. But after 3 days it was clear that it was helping not making me worse so I went quickly to 20 drops 3x a day. Its also suggested if you have a strong neuro herx or brain fog or similar to take 20 drops every 10 minutes I think, until it goes away. Its a pretty safe tincture.
New Topic Post Reply Printable Version
44 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, November 23, 2017 5:23 PM (GMT -7)
There are a total of 2,897,280 posts in 317,993 threads.
View Active Threads


Who's Online
This forum has 157566 registered members. Please welcome our newest member, e2w3e.
270 Guest(s), 4 Registered Member(s) are currently online.  Details
PeppermintTea, Yellow1955, Cyclone-ISU, Lanie G


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.