I feel like something has changed, but it is hard to explain.
During the bad times with this illness, I would just feel like I wasn't living in my own head. Like "no one was home."
I had times when I sort-of felt like I was half-way in my old brain (the times I was doing better)....
...but now it's getting to the (even better) point where I almost feel 100% like I am living in my old head. That is the best way I can phrase it. I feel like I am thinking in a familiar way, like my old self. I feel like the personality/mode of thinking is at least recognizable to who I was from before I was sick.
I think this is due to treatment with drugs (Bicillin, Bactrim DS, Clindamycin, Quinine) and also due to "cleaner living" (eating healthier, exercising, not stressing).
BUT....I am still SUPER fatigued, to the point that it is still completely disabling. I am sleeping at least 10-12 hours straight through the "night"/day. I go to bed around 4 AM and get up around 3:30 or 4 PM.
And even when I'm up, I'm just too physically exhausted to push myself to keep up with the house, etc.
BUT, like I said, all of a sudden, I feel like I'm MYSELF. Just a VERY tired "myself."
Does that make any sense?
But at least it's better than being a foggy headed, confused, irritable, no personality shell of a person.
So I am wondering if the change I feel in my head/my "being" (lack of better phrase) means that I'm on the right track, and eventually the fatigue will follow?
Did anyone who got better feel like this before the fatigue went away?
Of course on it's own, this progress is a good sign, but I'm still completely unable to live my life, so I'm just hoping one type of progress leads to another??? That's my question.
Thanks.
Posted by sapphire101 (Member # 6638) on :
I think you are definitely on the right track. You sound a lot like me. I always felt like I was on the outside looking in. My head was always screwed up.
I really had a hard time describing it exactly. It did lift and it felt so good to have a clear head again.
Fatigue was my worst symptom always. I was never without it. It was so bad that at times I could barely walk to the bathroom.
I was pretty much housebound a lot over the last 20 years. It gradually started to lift, so just hang in there.
I'm having a relapse right now but it's different than in the past. The fatigue isn't my worst symptom. It's so strange but I'll take it.
Sapphire
Posted by bncrump (Member # 20374) on :
I have to say that I have had the same type of feeling...like I am getting back to normal (in my head) after a few month of treatment.
My fatigue has gotten better too over the months BUT I was thinking...have you had your adrenal function checked. That could be the cause for the excessive fatigue.
Good luck...glad you are feeling a little bit better!
Posted by sutherngrl (Member # 16270) on :
I can say that I have fleeting moments lately where I can feel my old self for a few seconds or minutes. It feels awesome and gives me much hope that small pieces of me are trying to return. Its as though the fight might be beginning to pay off.
The gradualness of the recovery of this illness is very bizarre, but for some of us, I feel its nothing, nothing, nothing, and then all of a sudden you start to see a light at the end of your tunnel.
It might take a while to get to it, but at least it is showing itself. It is no longer complete darkness and to me that is a positive sign that we are moving in the right direction, even if it be ever so slowly. We at least know the light is there now.
Wow, did I go off on some wild symbolizism or what??? But thats how I feel!
The fear is that you loose that little bit of light, as LD does play its cruel tricks on us from time to time.
Posted by johnnywv (Member # 23012) on :
I have been treating for almost two months now
and there are brief periods latley when i can
really focus on things. its a good feeling. I
guess the fog came on so gradual i didn't notice.
i believe i'm seeing improvements in joint pain
too! Stay the course!!!!!
Posted by ping (Member # 6974) on :
Hoosier,
I know exactly what you mean! After being off abx and in remission for ~2 years, I still battle fatigue on a daily basis. I'm on beta-blockers for extreme hypertension and tachycardia, so there's no way around it, for me. It's better than it used to be, but not altogether what I expected from recovering from this disease. Granted, I'm slowly feeling better, but I MUST have a minimum of 8 hours sleep and follow certain restrictions, else I'm knocked on my rear for a while. I've no doubt blasted out my adrenals and everything else associated with about 50 yrs. of having TBD, then, over 5 years of tx.
As I said, it is getting better, but very, very slowly and at my advancing age, it's questionable that I'll have the recovery that I could have had even 10 years earlier. Not intended to depress anyone but please let this serve as real incentive to those who are "considering" bonafide tx for TBD, instead of actually doing it! (Not directed at you, Hoosier.) The sooner you begin treatment, the better. DON'T WAIT!
Posted by Starfall1969 (Member # 17353) on :
Yes, I think you're on the right track.
I got to a point over the summer where I sat down and actually wrote a Bible study.
That's when I knew that something had changed, although I was still tired and achy and had visual issues.
Posted by springshowers (Member # 19863) on :
We should talk..
I am going through a transition myself such as yours and I think it is a very good sign.
I think its a very good sign.!
Keep On Keepin on!!
Good For you.. and hang on to those positives.
I know its tough.. I am struggling with it now..
I heard that the first things to hit are the last things to leave.
It was pure fatigue and bedridden that was my first symptoms and then pain.. and then all the other stuff.
So for me that statement is true...
Just something to keep in mind.. too
Posted by nenet (Member # 13174) on :
I recognize what you are describing Hoosiers. That's a very good sign, and means the Lyme encephalopathy (aka "brain fog" in Lyme-speak) is getting better.
This was the first sign of progress for me as well. My husband also saw it in my face - and my eyes - he said it was like "the life came back" into them.
Have you tried using Buluoke yet? It's the Canadian-made version of Lumbrokinase (which is made in China). It's a systemic enzyme that breaks down the fibrin that Lyme causes to build up and thicken the blood, and also supposedly breaks down biofilms.
I tell you about this because ever since I began taking it (I'm now up to about 1 pill every 2 days or so after starting it about 3 weeks ago), my energy has been coming back to me much more frequently. It is still hit or miss, but generally because I overdo it when I get a burst of energy.
You might want to try it out. It seems in many cases, inflammation (including fibrin buildup etc.) can lead to profound fatigue. The Buluoke in my case seems to be bringing down the inflammation, and in turn my energy is soaring.
Posted by Imaginit (Member # 20399) on :
Hoosiers, I hear you. I use to describe it as not being in my body. And nenet, my husband too use to say that he could see it in my face when I had checked out to lyme. I've been in treatment for seven months and am far from well. Still very tired and have a lot of pain, yet yesterday I bought one of those Christmas singing animals that are everywhere and caught myself dancing to it! Ah it was a brief glimpse of the past and hopefully a better future.
Posted by springshowers (Member # 19863) on :
I too started to use Buluoke and it is helping. I was told not to take more than 1 3 days of the week to start. It is quite powerful and will break down biofilm and all that nenet is describing.
Good Suggestion..
I am working up to more often soon..
Where do you get your nenet? I am looking for the best source and looking to save some money too..
let me know. if you would please?? thanks much..
Posted by trigal2 (Member # 20578) on :
Yup...brief moments of clarity of remembering or rather feeling what we use to feel like. I get fleeting moments of that as well. They don't last long but when I get them it puts quite a smile on my face.
I think of it as a gift - sort of a springboard to hope..Hope that we can once again get our lives back and feel "normal" again.
Posted by nenet (Member # 13174) on :
quote:Originally posted by springshowers: I too started to use Buluoke and it is helping. I was told not to take more than 1 3 days of the week to start. It is quite powerful and will break down biofilm and all that nenet is describing.
Good Suggestion..
I am working up to more often soon..
Where do you get your nenet? I am looking for the best source and looking to save some money too..
I think sometimes you can find it for different prices different places, so each time we make an order we shop around. You can usually find it for at least 10 dollars cheaper than from the manufacturer, which is like 90 something dollars a bottle.
Sorry for the OT Hoosiers, just thought since we were discussing it already, others might want the info too.
Posted by madge (Member # 13704) on :
to all of you...i can understand what your saying.. i am only a caretaker...my hubby is the sick one...
he has been so sick for soooo long...like over 8 years...but has be in treatment for Lyme now for over 3 years....
but in the last 2 months he is takling more... turning on the TV even for a few min...he toke the trash out a few times..he is eating a little better...
he is still weak and stays in the dark a lot and he still has head and eye pain...but these few things he is doing are a start i think...
and yes it will take much longer to say he is better...but i thank the Man above to see these little steps....
so all of you nice people please hang in and take it easy...every little step is a real good thing... Madge
Posted by sixgoofykids (Member # 11141) on :
Yes!! The fatigue was one of the last symptoms to go.
Posted by TF (Member # 14183) on :
Yes, this is a great sign. I am so happy for you.
Posted by SoSublyme (Member # 15185) on :
Great news!...hope you are on your way to wellness soon.
Posted by djf2005 (Member # 11449) on :
This is kinda how I felt last time I began to make progress.
Almost like you recognized the skin you were in again, albeit it slowly.
Hopefully this is a sign of things to come for you.
I am waiting to feel like my brain and body are mine once again... here's hoping we all get to a place of better health soon.
Best
Derek
Posted by Hoosiers51 (Member # 15759) on :
Thanks a lot...I am surprised how many people responded.
Hopefully this is a sign of greater things to come.
Interesting about the Bulouke, I'll have to look into it. I have gotten good results too with Wobenzym.
Posted by asummers (Member # 18068) on :
I posted this on lymefriends as well:
YES, yes, and YES! I don't feel this way now, but about 3 months ago, I felt like my 'old self' meaning all my symptoms were gone and I was functioning as my 'pre lyme self' and all I had left was this crushing physical fatigue. I could do everything but exercise. This lasted for about 2 months.
I questioned that this fatigue could be a co-infection or evidence that my lyme is still present. Or another thought was that I was better, and it was now an autoimmune problem.
That all changed once I started treating babs & bart and began rife. I am back to square one with brain fog and flu-like symptoms.
For me, I know I will be on track to feeling better when this damn fatigue is gone. I hope you continue to see progress.
I might not have answered your question, I guess I just wanted to let you know that I totally related to what you wrote.
Posted by sutherngrl (Member # 16270) on :
Also remember that especially for those of us that have been bed ridden or at least not very active due to LD; it will take some time even after we are well to recondition our bodies.
Even if we go into remission or get cured, we still have a long way to go to feel like our olds selves again.
Here's an example...Its like when you break your arm and its in a cast for months. It takes time to regain the use of your arm even after the break is healed.
Posted by Ariel1 (Member # 22227) on :
I nevewr had the brain fog but can relate.
After a month of treatment, I started to feel like my old self again.
My big main linigering symptom is fatigue.
I have days where I need 12 hours of sleep.
Posted by Ocean (Member # 3496) on :
Count me in too Hoosiers! I was just telling someone else this the other day who also has Lyme. Something is happening in my body and it's a good thing. I'm using big words again, I am feeling more like 'me' and I don't feel controlled by 'something' any more. My sister told me about 6 weeks ago that I'm the most emotionally stable she's seen me probably since 1996 before I got sick!
Praise God!
I'm so glad that you are doing better Hoosiers and everyone else who responded. It is incredible exciting and I am so so happy to be here! I know for all of us who went/are going through treatment that it is not easy, but when you finally start to come out on the other side, it's just so so worth it!
Take care, Ocean
Posted by CD57 (Member # 11749) on :
Yes! I can totally relate....I got the same feeling just this week after ending a crazy protocol....I felt so alive today and like my old self. It's so encouraging! Good for you!
Posted by janice victorov (Member # 22937) on :
Hey all, it's so rereshing to see everyone here supporting each other and know their is hope.
Sixgoofykids, How long were you treated before becoming symptom free?? I read your home page and am curious. JKV