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 11/14/2017 12:49 PM (GMT -7)   
Casa11 said...
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!



Hi Casa,


I agree totally. I lived in horrific physical pain for years, I still get some but not to the extent that I used to. Lately, all I've been thinking is that I rather have all of that unexplained physical agony back rather then my current brain and heart issues. Not saying one is easier than the other by any means but It just felt different.

Infact, I've been so out of it I keep forgetting I make these threads then realizing a day or two later that I forgot and what I said. I thought last year, maybe I can get a job working from home if I'm in too much pain to leave the house. Now, I wouldn't last working for a day with being so out of it and forgetful. It scares the pants off me. I knowI keep saying that but it does. I was already afraid since early onset alz runs in my family. NOW the past year I started to think that's what was happening to me, and my docs kept telling me I had "fibro fog" or even better ADD. Ha!


"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 reallly relate to this too. I feel like that's the worst part. Feeling like a zombie and finding it hard to even remember who I was or even the things I liked and enjoyed doing. Just everytime I try to use my brain at all for anything there's just this huge block there. I also say all the time, "this isn't me and my life". I have a very hard time accepting the way things are and have for a long time. Thanks for reminding me that it's temporary. I just hope your right.

I hate to say this but I honestly don't feel like I'm adding anything to anyone's life lately. Really. My family is very small. Most are gone and the one who took me in was great in doing that but doesn't understand. I feel like I outstayed my welcome long ago. She doesn't make me feel that way but it's just how I feel in this specific situation. I was only supposed to stay with her for a year after surgery and that surgery was the beginning of the end as far as this taking over my whole body bit by bit.

I do think we can heal too. It just hard to keep believing sometimes when I don't feel/see any changes taking place yet. But I'm sure your right. I'm just not sure how much longer I can go on feeling like this some days.

I just started taking the pinella/burbur yesterday. Does it take a while? My fog actually feels worse then yesterday or is this something that's supposed to help right away?

Thanks for the detox tea suggestion. I definitely give it a shot. I already do take tumeric caps but I'm thinking maybe I should go back to doing tumeric / black pepper shots in water. I'm not sure if these caps have the black pepper or not. I'll have to check.

Thanks again casa. Really appreciate it and I hope your brain heals soon too!

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/14/2017 1:08 PM (GMT -7)   
countingstarsx said...
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.



Thanks Counting,

I am definitely finding this place very supportive so far and I'm so thankful for that.

My heart palps have also been bad as well. They have been all along but sometimes seem worse along with the fog. So far the burbur / pinella doesn't seem to be doing much for me yet. Just took more a little while ago and I don't feel any different really. Not yet anyway. Is it supposed to be immediate?

The fog today is hitting me hard too. I'll have to try to remember that I don't have to go by the book so to speak with the protocol. It could be my other abx I'm on is causing some of this to be worse too. I can't tell anymore I guess. I try to write everything down every night as far as symptoms and severity and what I'm taking and not taking, then I find I forget to write these things down and only remember every couple days if I'm lucky.

Thanks for specifying that it's part of a different protocol too. I'm trying to learn so much with a brain that doesn't move or absorb. So I guess if Buhner doesn't work out that's another one to read about and try.

Thanks again.

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/14/2017 8:26 PM (GMT -7)   
Youre welcome. smile

It was pretty immediate for me, but everyone is different.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3841
   Posted 11/14/2017 9:10 PM (GMT -7)   
Heart palps were such a joy!

I thought a little green slimy alien was going to pop out of my chest.
Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then. What an adventure this has been.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1141
   Posted 11/15/2017 1:53 AM (GMT -7)   
no, i don't think our brains will ever work exactly like before neuro lyme, but the question is do you realize that your condition is degrading and going to get worse if you do not treat it ? it is always a good idea to continue treatment even if there is little hope for a full reversal of all symptoms, just to prevent more damage and even worse situation.

in this german clinic i treat myself, there are many people that i heard they just abandon treatment out of desperation seeing no progress, just to return one year later IN A MUCH WORSE CONDITION, begging for antibiotics ... so what ever you do, do not stop treatment unless you are asymptomatic, even if you lose hope for a cure or "getting your brain back". it's not wise ... it can and will get worse if you stop all treatment.

LymeBeast
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/15/2017 2:11 PM (GMT -7)   
I'm really sorry you are feeling like this. A couple months ago, I had similar worries - would my brain ever work like it used to? I would echo the comments on switching up your protocol, detox, and the biggest ah-ha for me was diet. I completely eliminated gluten and dairy, and after about 2 weeks, I noticed I was feeling WAY better. I don't know if I was already gluten and/or dairy intolerant, or if Lyme brought it about, but it has been the single biggest change I've noticed. I had to do it 100% (not eliminating 98%, eliminating it 100%). I based this off the "Lyme Diet" book that I got on Amazon...I know there's other food detox programs out there, they may be worth doing.

I am getting back to normal, there is hope for you, please keep hope. All of this is so complicated and different for everyone, it takes a lot of trial and error to find what works. But when I was at my worst, I spent time finding positive stories - they are out there, people do get better all the time, and that is important to remember. Sometimes I would get sucked into these boards and all the bad stories, that I got pretty down. Here's a couple of the links I have saved:

http://www.cfsrecoverypath.com/tools/lyme-disease-recovery-stories-oh-yes-its-possible/

http://www.healingwell.com/community/default.aspx?f=30&m=3509582

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/15/2017 8:10 PM (GMT -7)   
Thanks countingstarsx,

Still not noticing much difference with the pinella burbur but I keep trying. Already looking for something else to try in it's place but man, it's getting very expensive.



Astroman,

Haha your comment made me smile. There definitely feels like there is a green alien or maybe an angry elf in my chest. Either way I wish it would kindly go along with the brain stuff. Actually in the process of getting an appt with a cardiologist to see if there's any damage. As far as I know the cardios here no nothing about Lyme but at least maybe she can do some tests. More fun!



Mpost,


Thanks for the good advice. I have no intention of all at stopping treatment. Maybe changing it up eventually but I'm currently only 5 weeks in on abx. I know I have to try to be patient and keep going no matter what. Doing nothing and giving up just isn't an option for me. It just scares me as it does many others. That's all. I'm alone in dealing with this too so I feel like it's all up to me to try to figure out how to best make myself feel better. I think if I can just get some of my brain function back, I could be doing more for myself and I want to make sure I'm learning what I can. This is all still pretty new for me.



Lymebeast,

Thank you so much. As far as diet, I've cut out all sugar and dairy going on at least a few months now. Even before I found out I had lyme. ALways allergic to dairy anyway so that part was really easy. I'm eating as healthy as I can but my appetite has taken a hit from all this as well. But I don't think I've ever eaten this healthy before in my life. I used to be a sugar, sweets and carbs junkie and I don't even miss any of it at all.

I actually did notice that Lyme diet book on amazon the other day and was thinking about ordering. I definitely need to expand my diet a little bit. I find I'm eating a lot of the same things pretty often. Mostly veggies but I need to have a better idea of what to get when I go grocery shopping too. I'm usually so confused, fogged and overwhelmed that I need to write down exactly what I have to get or I leave with nothing I needed. Something that used to be so simple for me now seems so difficult. That's pretty much with everything lately.

I'm so happy to hear you're getting back to normal. That gives me hope and that helps a lot. I was looking for positive stories earlier. Having another rough night tonight with this and it does help so I'm going to go check those out now.

I really appreciate it. I wish you continued success in healing.

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/15/2017 8:53 PM (GMT -7)   
Have you looked into detoxing ammonia? I remember something about it being related to the brain fog, might be worth looking into.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/16/2017 6:03 AM (GMT -7)   
countingstarsx said...
Have you looked into detoxing ammonia? I remember something about it being related to the brain fog, might be worth looking into.



How would I detox specifically for ammonia? Is that always the cause of the brain fog? I'll look into it.

So far, most of the detoxing I'm doing is lemon water, binders, dry brushing and Epsom salt baths and I ordered some alka seltzer gold but haven't received it yet. Ill start that as soon as I do. Currently looking for things I can add on as well.

Thanks

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3841
   Posted 11/16/2017 7:50 AM (GMT -7)   
Well, your definitely getting some use out of this forum.

Just so you know, your path and obstacles your encountering are vary familiar, like pretty much all of it to many people including myself..

Lucky for you, you found this forum. When one is alone with this stuff happening, it maddening and unbelievably confusing. The condensed version of what to do (here) with all the info all at once has got to be overwhelming itself though LOL.

Many here had heart palps, followed by a heart scan (forget the name) - the digital video of your heart working. Most likely they will find nothing major, a few flutters.

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 201
   Posted 11/16/2017 9:12 PM (GMT -7)   
I wish I had more information for you. All I have is knowing I read something in passing, but it didn't seem like something I needed at the time, so I didn't retain it. I think l-ornithine was mentioned, calcium d-glucarate, and ....I'm blanking. Here is a website I found quickly!

http://www.tiredoflyme.com/ammonia-a-lyme-disease-exotoxin.html

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/17/2017 6:27 PM (GMT -7)   
astroman said...
Well, your definitely getting some use out of this forum.

Just so you know, your path and obstacles your encountering are vary familiar, like pretty much all of it to many people including myself..

Lucky for you, you found this forum. When one is alone with this stuff happening, it maddening and unbelievably confusing. The condensed version of what to do (here) with all the info all at once has got to be overwhelming itself though LOL.

Many here had heart palps, followed by a heart scan (forget the name) - the digital video of your heart working. Most likely they will find nothing major, a few flutters.



Thanks,

I'm really trying but the last couple days have been really rough. Today a lot of my symptoms are all attacking me at once. The brain stuff still being among the worst. Totally out of it, confused, can't organize, remember anything, etc. Still feeling really scared right now. At the same time my stomach won't stop making noises, my eyes have been less irritated lately but that's back again today with blurred vision, ears weren't ringing as loud earlier now they are back.

I have purchased lyme books, need to order more herbals, I have a whole list of things like that I need to do to try to help myself here written down and just cannot seem to get anything accomplished at all. And speaking of heart flutters, the cardiologist's office where I'm trying to make an appt never answers their phones for appts and won't call me back. Very frustrating.

Thanks for the feedback again and letting me vent. Having one of those days. I feel like I'm doing everything I can at the moment to detox lately but it doesn't seem to make a bit of difference so far. Feeling rather hopeless at the moment again. I feel like I'm literally losing my mind here.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/17/2017 6:32 PM (GMT -7)   
Mergirl said...
countingstarsx said...
Have you looked into detoxing ammonia? I remember something about it being related to the brain fog, might be worth looking into.



How would I detox specifically for ammonia? Is that always the cause of the brain fog? I'll look into it.

So far, most of the detoxing I'm doing is lemon water, binders, dry brushing and Epsom salt baths and I ordered some alka seltzer gold but haven't received it yet. Ill start that as soon as I do. Currently looking for things I can add on as well.

Thanks


I believe Jernigan has a product - it's the Neuro-Antitox II - CNS/PNS
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

Post Edited (Girlie) : 11/17/2017 6:35:36 PM (GMT-7)


Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/17/2017 6:37 PM (GMT -7)   
countingstarsx said...
I wish I had more information for you. All I have is knowing I read something in passing, but it didn't seem like something I needed at the time, so I didn't retain it. I think l-ornithine was mentioned, calcium d-glucarate, and ....I'm blanking. Here is a website I found quickly!

http://www.tiredoflyme.com/ammonia-a-lyme-disease-exotoxin.html



Thank you smile


Looking into this now. Purchasing more supps at the moment is also a prob. I'm living check to check at the moment and living in someone else's house. I'll try to see if I can get some of them somehow. It may have to wait till next month. As it is I'm trying to buy a few of buhner's herbs.

How do people afford to have this illness? Seriously? If you can't work and have no support system and trying to do all this alone. I need so many questions answered that I haven't had answered and my llmd so far isn't answering them. I need to find a new one but that will take a long time for me to save up for. My current one takes insurance but I feel like he is too overwhelmed with patients as he is the only one around and doesn't spend much time with you listening to the whole picture. I'm still not even sure if I'm just dealing with Lyme here or other things too making things worse. I feel like I have dementia lately. All the time among other things.

I want to feel better so bad. Anyway, thanks for listening and the support.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/17/2017 6:40 PM (GMT -7)   
Girlie said...
Mergirl said...
countingstarsx said...
Have you looked into detoxing ammonia? I remember something about it being related to the brain fog, might be worth looking into.



How would I detox specifically for ammonia? Is that always the cause of the brain fog? I'll look into it.

So far, most of the detoxing I'm doing is lemon water, binders, dry brushing and Epsom salt baths and I ordered some alka seltzer gold but haven't received it yet. Ill start that as soon as I do. Currently looking for things I can add on as well.

Thanks


I believe Jernigan has a product - it's the Neuro-Antitox II - CNS/PNS[/quote



Thanks Girlie,

I was just looking into that one as well. I see there are more products out there that can help but my brain gets so overwhelmed in trying to decide which to chose and what I can afford at this point. But I keep seeing that one mentioned a lot too so maybe worth a shot. I'm so confused and mentally exhausted. Thank you so much.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/18/2017 11:10 AM (GMT -7)   
It does get expensive - I have a graveyard of supplements I have tried.

Hope you find one that works!
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 11/18/2017 11:34 AM (GMT -7)   
Thanks Girlie. Me too!

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3841
   Posted 11/18/2017 5:41 PM (GMT -7)   
I used lots of post it notes all over the counter top, fridge, on wallet for morning and on the car dash (seeing speedometer is overrated) LOL.

Walmart brand is way cheaper than original 3M.
Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then. What an adventure this has been.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/19/2017 12:04 AM (GMT -7)   
astroman said...


Walmart brand is way cheaper than original 3M.


You know you're using a ton of post it notes when...... tongue
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
New Topic Post Reply Printable Version
44 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, November 21, 2017 8:55 AM (GMT -7)
There are a total of 2,896,231 posts in 317,883 threads.
View Active Threads


Who's Online
This forum has 157473 registered members. Please welcome our newest member, Johncb88.
409 Guest(s), 15 Registered Member(s) are currently online.  Details
alephnull, RedSparrow, Energetist, Doggiedo, Casa11, Johncb88, adamas, Missouri, Jaxy, BJD55, Sherrine, ASAdvocate, SharonZ, kmclark1, straydog


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.