does anyone just have brain symptoms?

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2long4this
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 1/22/2009 7:26 AM (GMT -7)   
Hi
I don't post much, but I have a question that's been bothering me.
My main and basically only symptom has been brain fog. It's actually worse than brain fog...it's more like half my brain doesn't work..the important part!! I can't think at all...I feel like I need a babysitter!
I was feeling very sick before the beginning of treatment and had light/sound sensitivity, and it felt like the life had been drained out of me, but most of that has cleared.
I've been in treatment since July and my brain is just as bad as it's ever been.
Everyone has expected me to see some improvement by now, so it's got me wondering if something else is going on.
I have been very fortunate that I haven't had any pain, but I find that kind of weird. I thought lyme usually causes a lot of pain.
If I could get some clearing in my thinking, I think I would be able to make some real progress, but it scares me so much I don't like to do much.
Anyone else have this problem?
Thanks

I had a positive Igenex test, although not CDC pos. and I do see a LLMD.

nunntrio
Regular Member


Date Joined Jun 2008
Total Posts : 51
   Posted 1/22/2009 8:40 AM (GMT -7)   
I Can completely relate to your symptoms. My number 1 symptom is brain fog. I agree the term brain fog does not even come close to how awful this feels. I just tell everyone it feels like my brain has stopped working. I feel like I am only a fraction of the person I use to be. I do also have a lot of cranial neuropathy. I also do not have any of the fatigue and pain that commonly go alone with lyme. My Lyme Dr. even said that my symptoms are very a typical of Lyme because I am missing the big 2 of fatigue and pain. However my WB is CDC positive for Lyme and I also have a positive SPECT Scan. My symptoms also hit me suddenly about 1 week after a tick bite. I have read in cases of neuro lyme you do not have to have pain. It is very frustrating because I sometimes question the diagnosis. I have been treated for just over a year and initally saw significant improvements. I still have a long way to go and it has been a while since I have seen improvements. Anyway know you are not alone.

2long4this
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 1/22/2009 8:50 AM (GMT -7)   
Is this something that is permanent? Wow a year with very little improvement is too scary to me. I can't function like this at all. I haven't had a SPECT scan yet, but did have a clean MRI. Does your doctor expect you to improve?

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/22/2009 9:39 AM (GMT -7)   
The best word to discribe it for me is dementia! I have had all the typical symptoms but the most lingering is brain dysfunction. When I felt "well", I never felt connected to myself or anything else. This produced an apathetic attitude bordering depression. Then depression actually hit along with the old symptoms of headache, muscle spasms, chills and pins and needles. I realize I was never well. It was just isolated to my brain. The bacteria are most virulent in your brain and it is the most difficult place to irradicate them. That is why I am going to a LLMD in two weeks - and can hardly wait.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/22/2009 10:48 AM (GMT -7)   
2long
you really need to read some books about the symtons of lyme. You can get them at Barns and Noble. I listed on in a post at is good and not depressing. Coping with Lyme.
I know it is hard to read. But yes, lyme effects the brain in a big way. And if not treated..it gets much worse. I too was out to lunch. Read others post. And read in introductions on the forum.
Personally I wrote about how bad I was. So without going into all of the gory details...red some of my past post.
And get a book. It will also put you at ease to know that you are not crazy, and also to inform you of what too be preparred for down the road.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


2long4this
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 1/22/2009 12:57 PM (GMT -7)   
Hi MV
Thanks for the response..I tried previously to get the book but our bookstore didn't have it ...I will try again.
I tried to read your old post but couldn't figure how to find the old ones without going thru every page.
When I call up your name only about the last 5 show up. How do I find them?
What do you mean, what I should prepare for? Is your brain better now? Should I prepare to be like this forever?
Thanks

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 1/22/2009 1:21 PM (GMT -7)   
My neurological symptoms hit very early for me. My aches and pains have never been that much of an issue for me. Fatigue and insomnia have always been a major problem. I have a co-infection of Babesia as well, which plays a role. People are affected in different ways.

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 1/22/2009 3:33 PM (GMT -7)   
Brain fog has been bad for almost 2 years now. Just tried something new today. The ADD drug adderall. I feel so with it today I have been on cloud 9! I feel I can think well for the first time in a long time. Got it from my LLMD to see if it helped the brain fog. And it so did!!!

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 1/22/2009 4:36 PM (GMT -7)   
I'm in this boat with you guys as well. I don't necessarily describe it as "brain fog". My description is "head and neck pain". So........... the big question, what is the best treatment protocol for breaking the blood brain barrier. Getting in there and getting rid of the bacteria in the head??? I see that one poster had success with adderall. But is that just masking the pain? Does is adderall kill the bacteria?

What kills the bacteria in the head best?

Chief

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 4:42 PM (GMT -7)   
Yes 2long,
the lyme recovery process doesn't exactly feel like recovery most of the time does it!?

and yes, lyme symptoms can be totally individual. I got fatigued first, then within a week or so my brain was totally wacked!

And I'm totally curious also about the relationship between the location of the tick bite (if you know, I don't) and symptoms. I read once of a guy who had massive neurological symptom very soon after being biten behind the ear/ hair line area.

You can order books online from barnes and noble if they don't have in the store. I've also ordered books from half.com, it's part of ebay.

hang in there and keep talking.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 1/22/2009 4:50 PM (GMT -7)   
The Adderall does nothing for the pain. But it did lift the brain fog for me. I can actually concentrate and think for a change. Feels very good to have a brain again!

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 5:23 PM (GMT -7)   
tt,
have you had any negative side affects from the adderal?
I think I might try it. I'm tired of feeling like a bone-head! lol

thanx for the info.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


nunntrio
Regular Member


Date Joined Jun 2008
Total Posts : 51
   Posted 1/22/2009 5:27 PM (GMT -7)   
2Long,

To answer your question they don't know if it is permanent. My LLMD is a little puzzled because at this point he thinks I should have had greater improvement. I would say I have had only about 50% improvement in systoms(I had 5 months IV Rocephin). I am suppose to start a new abx combo next week and if he does not see any further improvement he wants to start searching for other causes. I pray every day that this not permanent.

I was bit in the back of the neck right near hair line. which is why I think my symptoms are so neuro.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 5:42 PM (GMT -7)   
nunn,

that's very interesting about your bite location!
Do you have any co-infedtions? I've read/heard that's why treatment takes so long some times.

A Lyme friend of mine was biten on the leg with rash and misdiagnosed symptoms for ten years!! She is now on her 3rd year of treatment (PICC line, IM injections, etc.) and finally starting to do well. She can handle working 3 six hour days at work as a dietician. She was told that treatment usually takes about half the time as your symptoms lasted prior to treatment.

prayers and blessings to us all
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 1/22/2009 6:51 PM (GMT -7)   
The only side effects from the Adderall have been a clear head, more energy, feel happier, better concentration and I didn't need any naps today. And I only took one even though it says I can take 2 a day.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 9:40 PM (GMT -7)   
tt,
thanks so much for the info! I'll be talking with my LLMD about it.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


nunntrio
Regular Member


Date Joined Jun 2008
Total Posts : 51
   Posted 1/23/2009 5:46 AM (GMT -7)   
LupnerRN,

I do not think I have any Coinfections. I have been tested many times. Also my sysptoms are not really consistent with any coinfections.

2long4this
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 1/23/2009 6:29 AM (GMT -7)   
Wow!
You guys are awesome! Thanks for all the info!
I'm just scared to death that lyme has triggered something worse that I may not get rid off. My symptoms are with me all the time..I never get a break.
I would like to be able to think clearly again..so I'm happy to hear about the adderal. I may ask about that.

Nunntrio~
you're docs opinion sounds like mine. What else does he think may be going on? I've been IV for 5 months too..plus other things (forgive me if I've already said this) and not much has changed as far as my brain goes. Other symptoms have gone away.

What's really starting to worry me is that I get these body jerks at night. Not like the ones you get when you dream like you're falling. My body will just jerk and it wakes me up. Very strange...and scary.

Thanks for the info!

bridg3work
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/23/2009 7:49 AM (GMT -7)   
Just a word of caution on Adderall. First, Adderall is amphetamine, a controlled substance. I have been on Adderall XR since before I "came down" with Lyme and Co. Since then, I find it to be less effective but still I am able to focus more. However there are a lot of questions I have based on knowledge I have of the Lyme Disease complex, and the action of the Adderall XR.

The action of Adderall "is thought to" alter dopamine (sp?) function in the brain. I know it raises resting heart rate 10-15 beats per minute, and makes me more alert. I think the added alertness (stress) influences cortisol production too, as a cortisol saliva sample showed me to have 4 times the normal cortisol burden. We all know the adrenals are an important considreration in immune function and Bb treatment.

I know it allows me to function at work and at home, but I wonder if it's action is not counterproductive in the end. I suppose just like all meds there are pros and cons...

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/23/2009 11:50 AM (GMT -7)   
Just want to add that I read in one of my books that people bitten on the head or neck are more likely to get neurolical symptoms. I was bitten on the back of my neck. The fact that Adderall is a strong stimulent scares me. Can is worsen insomnia?

nunntrio
Regular Member


Date Joined Jun 2008
Total Posts : 51
   Posted 1/23/2009 1:07 PM (GMT -7)   
2Long4this,

My Doctor really does not have any other ideas. He wants to give the abx another few months and if there is no improvement he wants to send me to a diagnostic clinic near where I live. This is why I really wish the could come up with some better testing for this disease.

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 1/23/2009 4:23 PM (GMT -7)   
>>What's really starting to worry me is that I get these body jerks at night. Not like the ones you get when you dream like you're falling. My body will just jerk and it wakes me up. Very strange...and scary.

I think I've had those too, if it's the same thinking I'm thinking about. It hasn't happened for a while. For me, it happened mostly while I was falling asleep or when I just fell asleep. It's like a spasm. It can be frightening and even quite painful at times. It was just one thing that made me dread going to sleep at night. Thankfully it cleared up when I went on the right antibiotics.

I had neurological symptoms early on, but I never found a tick bite. I had a small rash on my ankle, so presumably that's where I was bitten. There are different forms of the bacteria and even different strains of it. Our bodies also may fight in it different ways. There are multiple factors that may explain why we each are affected differently.

bridg3work
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/24/2009 5:44 AM (GMT -7)   
I have had 4 months into treatment, which have subsided for the most part since i dropped the meprone. I take Adderall XR (extended release) at 6 a.m. and go to bed at 10 p.m.. I do believe that I sleep much better after 1 a.m. though. Like I said I am concerned with its role in immune function, and when I gone sans Adderall I have felt additional fatigue and perhaps depression - which could be withdrawal of part part of Lyme and Co symptoms.

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 1/24/2009 9:39 PM (GMT -7)   

I'll ask it again... anyone have opinions on the best treatment protocol for penetrating the blood brain barrier?  What drug, vegetable or needle can get in there and kill the bacteria?

Chief


chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 1/26/2009 10:49 PM (GMT -7)   

Still no real answers on this one.... how do we get the bacteria out of the head?

Chief

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