djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hey guys-
just wondering if anyone else can relate to this feeling. i have it most of the time. its like you are high but can't concentrate on things well. i especially notice it at the grocery store. its like you see everything but cant really focus on any one things, like one big blur. i know about "brain fog" but i am not sure if thats what this is, its almost like living in an altered state of reality, but i notice it gets worse too when i try to process multiple things at once. has anyone had this feeling clear w abx use? ITS DRIVING ME NUTS I FEEL LIKE A COMPLETE @!#$%@%#$@!# also, anyone have tremors? my body shakes when i try to do anything, ie bend over etc.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I've been wondering over the past year or so whether these are seizures? Anyone?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
That was probably the best description of what I call brain fog / altered state or reality. I have told my doctor that I have felt like I am living in a dream world all this time. YES, what you are describing is Lyme related!! And it does get better with abx. Unfortunatly, it gets worse with treatment so strap yourself in. (Herx)
I just changed abx and it has been really bad for the first 4 weeks. The good news is that when you are having a 'good day' the big blurr as you describe it, is gone!
As for seziures... My Step Mom has petite mal sezuires and is on medication to stop them. What she described as a sezuire is going places and not knowing where she is or why she's there. I could see how the big blurr could be confused with a sezuire because you really do feel 'out of it'.
As for tremmors.. before my treatment started, I would notice that my jaw would tremmor when trying to drink from a coffee cup.. sort of like I was shivering from the cold. Now with treatment it has gone to parts of my body will tremmor when I put stress on it. Like with I lean on my arm, sometimes it will shake like crazy. It's just another fun part of this strange disease.
Don't be surprised if new things pop up when you start abx. And be prepared for your current sypmtoms to get worse. Not permantely, although it feels like it sometimes. It will get better, you just gotta cope and believe that you will get better soon.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks for the info. what tx did you start on? what are you on now? i finsihed 4 wks 4 g/d rocephin, just added tindimax. i do pulse, 4 days a week. do you also notice out of it feeling more when you drive? i do.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Geneal, You speak as if you are better. Are you? As for spouse getting Lyme from an infected partner.. My wife tested positive as well, although she's not symptomatic. The abx have caused some symptoms to surface, but it's been a pretty easy treatment for her. Her main complaint is on the the way the doxy makes her stomach feel queezy.. I don't want to be little her complaints, but I would KILL to have that be my only complaint!!!!!!!!!!!!!!
Goodluck to you and your husband.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Djf 2005,
It sounds a lot like brain fog & lyme anxiety. All central nervous system involvement. I had this big time & still do sometimes on a bad day.
It got alot better with treatment but took a very long while in TX to clear.
Are you in treatment right now? If so it can get somewhat worse durning herings or durning a lyme monthly flare.
I hope you have a good LLMD & can find some relief soon
It really does stink but if you get treatment it WILL get better in time.
Take good care
Dana
ps: I used to get tremors. I used to call them my aches & quakes. It is an unnerving symptom but that also got better in TX over time for me.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Visual,
My husband's main complaint is of fatigue, pain and short term memory issues.
Not sure, but doesn't seem to be exhibiting any co-infections.....yet.
I, myself, have Lyme, babs, and bart.
He wonders why I feel soooo ill!!! I am like you, I wish I only had a couple of complaints!!!
He gets his Igenex results tomorrow....when he sees my LLMD. He had a positive Elisa.
I just found out yesterday as I was filling out his forms for LLMD that he has Had a couple of tick bites.
I guess it didn't seem significant enough to share with me at the time.....oh, well.
He doesn't always take his doxy either.
Right now he is in this "super work out mode".
He goes to the gym for 3 hours a day for weights, aerobic activities and sauna.
Maybe that is why his symptoms aren't as severe....he's oxygenating those ketes to death!!!
However, he is sore constantly, incredibly fatigued and this just keeps getting worse.
He believes that if I worked out I would get "better" too.
He just ordered some creatine this week to see if that makes a "difference".
Of course, no offense meant, if he does have Lyme, he will be much "sicker" than I am.
I'll let you know as soon as he lets me know his test results.
I am dying to see what an Igenex test looks like. I was unlucky enough to be tested via Quest.
Hugs,
Geneal
PS: am having children tested next week via Igenex.
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Im new to this site. The symptoms you are describing are my most bothersome. I describe them as "brain fog" or having depersoanlization/derealization. Basically this symptom sucks and i have it every day and have had it for 2 and a half years now. Nothing has really seemed to help me so far with the brain fog. I also think that vision plays a part in the foggy "drugged" feeling and places like supermarkets and busy areas only make it worse. Its like a sensory overload. I havent been able to be on antibiotics for a while becuase Iv treatment gave me a bad fungal infection that i am trying to clear now. I plan on going the herbal route from here on out and am going to the Haverford Wellness Center in PA. Hopefully they can help me as i have heard some good things about them. Once i get an appointment and get on treatment i will keep you updated with my response in getting rid of the fog.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
yes, on 4 g rocehpin 4 days a week. also added tindimax recently. ill be starting week 5 of iv soon. i just wish it werent such a slow process. but such as life.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
The path to recovery is a long, bumpy one... but atleast you are on the right path. Think about how many others are out there, getting misdiagnoses like I did... everything from ALS, to Lupus, to MS.
I honestly consider myself lucky to have found a Doctor that figured it out!!!
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
you perfectly described brain fog. i'm better now but i still get that awful feeling occasionally, especially when i'm in large stores - i think this has something to do with the fluorescent lighting + sensory overstimulation.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I lived in a state of brain fog for many years! I was terrified to go in to a department store, because I wasn't sure I would ever get out. Once I did, I rarely came home with what I went in for.
Driving was scarey. I used to run red lights without realizing what I was doing. I'd get lost going somewhere fairly close to home. Highway driving was terrifying.
My answers to most of my kid's questions, especially in the afternoon were....uh huh. My word search would fail, and I couldn't have conversations, even though I wanted to express an idea.
I eventually went on a low level cortisol replacement. The brain fog is gone, as long as I mintain healthy cortisol levels. In addition, my need for cortisol is dropping as I reduce my infection level.
I believe that lyme brain fog is mostly cortisol level related. It can come from neuro lyme affecting the pituitary, from lyme disseminated into the adrenals, and from adrenals fatigued by fighting so much infection.
There are several posts discussing the best supplements and treatments for adrenal fatigue.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yes Joe,
Good question! Cortisol is a steroid. Its the same thing as cortizone. Your body is supposed to supply about 40 mg a day to help you deal with stress of any kind (including infection.) If it doesn't, you crash.
If you take too much cortisol, it can cause serious immune deficiency problems!!!
Too low, and you can't fight infection effectively either. The usual recommended low dose supplement is 20 mg. See James R. Wilson, Adrenal Fatigue.
If people can get by with adrenal support rather than cortisol supplements, so much the better! I couldn't. My pain and confusion were so intense I was a danger to myself and others. Plus, I couldn't sleep at night, nor get out of bed in the morning any more.
I used adrenal support supplements for a while, and they made a huge difference. But I had a high needs baby that wouldn't sleep more than two hours at a time for about eight months. On top of undiagnosed lyme, it put me over the edge.
I crashed so hard that I could no longer stand up or even hear the phone ring without getting nauseaus and dizzy. Cortisol supplements brought me back to the point that I could figure out what else was going on with me, and get on a path to healing.
Best wishes for your good health!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
The best way I can describe my brain fog is to use 2 computer analogies:
1. Sometimes I feel like someone has erased a good chunk of my hard drive and when I go to get a name or some other piece of info from my memory, my brain just whirrs blankly.
2. I feel like I am accessing my brain on the slowest, crappiest dial up connection, while the rest of the world is running on high-speed DSL.
I think we are all experiencing a similar side effect, maybe we just feel it or describe it in different ways. My husband calls it (jokingly) adult-onset ADD.
xoxo C
Posts: 56 | From southeastern PA | Registered: Jul 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Gosh, your experience of whatever is, for me, what my experience of babesiosis was!!! Every post you write I'm like= wow Babesiosis!!! MY Babesiosis experience!!! But just because those were my Babs symptoms does not mean it is Babs with you because they are non-specific- however- I just have to say again, because often there is an overlapr of the same presenattion for the same disease-
sounds like Babs to me*!!!!!
Best wishes, Sarah p.s. And when I Herxed with Artemisia I felt so spacey and SO spacey I felt HIGH and I don't do drugs!!!!!!!!!!!!!!!!!!! Hadn't felt like that since high school when... I *did* do drugs!!!! Seriously, felt WAY WAY WAY floaty!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Big time, hence my appropraite moniker.
Cortef didn't help my fog.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
The best way I can describe this would be like my brain is in a high altitude and instead of getting dizzy I just stay at the point of where you would be if you were going to pass out but don't . I am also very sleepy and the sleepiness is so bad that the first few years I could fall asleep putting my shoes on. I could not I could sleep 24/7 it felt like and spacy is almost sever drowsiness. My daughter was in Kindergarden back then and she would be late almost every morning and then I went home a fell asleep until the afternoon and I would be last parent picking up there child. I had sleep studies and was tested for seizure and things looked supsicous. Everything the drs gave me made me more sleepy except Neurontin. For some reason I can take that in very high doses and it helps.
Another way I can describe my spacy feeling is like if you ever had the breath knocked out of you and those moments of knowing what was around you but you could not think. Still almost like just before you would feel if you were going to faint but things never got dark or dizzy. It always made me feel like my brain had to much oxygen or some how oxygen was doing it.
That started in 1987. It is some better but still a problem. The first time I saw a MD he mentioned depersonalization and when I ask what that was he said losing touch with reality. I just thought OH WOW. It took from back then until about three years ago to find out I had lyme . I know that I could look at a red light and know it meant go but could not think so every thing was on automatic piolet.
I hate that symptom and the flue like weakness the worst of all. travis
Posts: 29 | From south | Registered: Dec 2005
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