I'm having brain issues

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CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/8/2009 11:04 PM (GMT -7)   
Ever since I took my meds on Friday, I've been having alot of brain issues. I feel like I'm struggling real hard to think. Harder than before. I've been having neurological symptoms. I feel like something is about to happen in my brain. Like I will lose control. It's a very weird feeling. My body has been jumping and twitching. My hands have been jumping completely off of my pillow. My head has been jerking too. I feel vibrating and moving in my lip and chin. I basically feel out of control.

I'm sorry to keep complaining. I just feel worse now than before I took the meds. I know that is normal but I feel like my body can't take it. I'm gonna do a detox bath tonight and see if it helps.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 5:53 AM (GMT -7)   
I completely understand the feelings of impending doom. All I can say is that most of the things I really feared happening never actually did. It was very black and white to me, very all or nothing, very extreme. I didn't fear that maybe my arms or legs would get worse...I would think the same as you and go all the way to the ending thinking "Maybe I will COMPLETELY lose control of my limbs." You're putting an incredible fear into your mind when you do this...and believe it or not that itself will take a toll on your body.

PLEASE try not to worry about the most terrible things happening, and just deal with things as they DO happen. They will happen whether you worry about them or not. But remember that worrying can exacerbate things simply by stressing out your mind and body.


http://www.myspace.com/399827188


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/9/2009 6:10 AM (GMT -7)   
Well, that's the weird part...I wasn't worrying about it that much. It just felt like that. By felt, I mean literally. I could feel some sort of weird pressure in my head. It's very hard to explain. I went ahead and took a detox bath and so far, it seems to have helped with everything. I sweat alot and got really weak in the tub but after, I was very calm and felt better. I still have some neurological stuff going on but not nearly as bad.....so far.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/9/2009 6:18 AM (GMT -7)   
I don't usually post here but your symptoms called out to me.  Have you had an MRI?  Your lyme sounds like it is neurologically involved.  It might help to see if you have the lesions that lyme can cause.  I don't know if that warrants a different treatment or not.  Just some thoughts.  Good luck.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/9/2009 6:25 AM (GMT -7)   
I've done an MRI years ago and it was fine but none recently. I'm ashamed to say it but I didn't know that muscles jerks were neurological until I read this board. I will talk to my doctor and see what he says.

Do you have Lyme, MS or both?

Btw, thanks for your input.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/9/2009 6:29 AM (GMT -7)   
I just have MS.  I am happy to give you input and support.  I don't have lyme but I am extremely sympathetic and supportive of Lyme disease.  You might ask for another MRI.  Your brain can show changes extremely rapidly.  I once created a new lesion in a matter of a few weeks ( I am so proud ). 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/9/2009 6:39 AM (GMT -7)   
LOL @ creating a new lession. It's not really funny but I understand what you mean. It's funny how our bodies react when we are sick.

I'm just wondering, do you have similiar symptoms? MS was never mentioned to me after the 12 million doctors I saw but my symptoms are really close. I had a negative Lyme test but was clinically diagnosed with it. I had similiar reactions while on Amoxicillian and my doctor said that that's how he knew it was Lyme. I had worsening of symptoms, new symptoms, old symptoms, etc. BUT, if it's likely I have something else, I'd really like to know.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/9/2009 7:05 AM (GMT -7)   
Hey CajunGrl, You might want to ask your doctor for another MRI and evoked testing just to rule MS out and give you peace of mind that you're being treated for the right condition, which I think you are. I had a few MRI's and then the doctor ordered evoked testing that he felt definitely ruled MS out for me. It's scary and I know I'm always looking for confirmation and proof of things and unfortunately with LD it's not always there. I was also diagnosed on a clinical basis but am confident all my symptoms do stem from LD.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 6/9/2009 7:56 AM (GMT -7)   
Hi Cajungirl & all,
I was first dxed clinically, but now test pos. even for the CDC. I have a lot of neuro sx. They ease & worsen constantly, but are never very far away. I have had several MRI's & have yet to show lesions, I believe.
I do suffer with exactly what you, Cajungirl, described. It can be a real pain!! My biggest concern is that my doc, who is not Lyme-literate, but is at least Lyme friendly - will miss something like lesions on my brain. I would assume that any good doc would not miss seeing someting like that - and he really is a good doc!!!
I find that it can be very hard to even follow a thought all of the way through on bad days (like today), & it worries me some. Although as hard as that is to deal with, I have been worse - having out-and-out hallucinations before.
I feel really bad for anyone dealing with those kinds of sx - but I figure as for me, I'm still very grateful that I'm not house-bound or bed-ridden any more (at least so far!!!)

My sympathies to you Cajungirl. I hope that you can either confirm or rule out brain lewsions & those types of things soon!
- Traveler


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/9/2009 8:22 AM (GMT -7)   
Around the middle of May, when my other symptoms where getting better, it seemed that my brain was getting worse for a week or two. I think all the toxins from the die off and even the meds build up., and your body is using all the energy it's got to heal. There is not that much energy left over for thinking or doing anything else but what is going on inside you right now.

The detox bath and drinking water and herbal detox tea helped me. It's scary when it feels like it is getting worse, and even now when I feel that slight muscle ache, I wonder if it is going to start all over again.

Try to keep focusing on healing and things that bring peace and calmness to you. The fears will still come, but just keep going back to the positive thoughts.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/10/2009 3:20 AM (GMT -7)   
Turquoise,

Thanks for the advice. The detox bath really helped. I wish I had did it sooner. Next time I know, LOL. My brain is okay again.

I told the nurse about it and when she called back, she said the doctor wanted to see me and change the medication. I told her I had only tried it for one day and would like to continue, but only with one medication at a time. She said that was okay, that some patients have to do that. She even told me to lower my dose of Mepron to 1/4 tsp 2x's a day. Anyway, I'm gonna try that and see if he can wait another month before I go in.

I was pretty upset about the amount of time it took them to call me back. I called at 8:30am and didn't get a call back until 5:00pm. I will talk to the doctor about that. I understand they are busy but I think my symptoms warranted an earlier call back.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/10/2009 5:20 AM (GMT -7)   
So happy that helped! It is scary when you can't think or speak right. I am figuring out that all my life I probably needed to detox! My brain gets goofy without even being ill! I was nervous about the MRI in April, not about having it done, but that there would be something wrong in there, or it would just be this big emty space. It was a relief to hear that it was normal!

That is also scary that the doctor took so long to call back, too! But it gave you the time to figure out what was going on and might have been for the best anyway. I'd still say something about it when you go in there.

That reminds me that I have to fill out the patient satisfaction survey about the care I received last month. The only issue I had was on the second day after the PICC was put in, a nurse had to come and change the dressing. There are only two and one part time nurses that are skilled in that, so the supervisor had to come to fill in. When she pulled off the tape, she took off a layer of skin. I didn't realize this until after she had left, and the exposed skin around the edges was still stinging an hour later so I called the agency. They directed the call to her cell number. I left a message, just to ask what I could safely put on it, that wouldn't interfere with the tegaderm. I didn't hear anything in the next hour so I just used alcohol, which stung like crazy, but at least I knew would be safe to do. I called again the next morning and got ahold of her around 10 am. She didn't really apologize, but said that what I did was okay and explained that the call was late in the day so she didn't get it until morning. Both of the other nurses that I met were very good, and friendly, and made up for that day. If it had been a more urgent problem or emergency, I could have called the agency back, so it was partly my own fault for not getting an answer when I wanted it, anyway.

The only other issue, which I have to call about, is that on the first day I received an epipen. The day after the PICC was removed, the delivey man came to pick up all the unused supplies. I asked if I am to keep the epipen or send it back. He said that if I don't need it that it goes back. Yesterday, I got the bill for the first week of treatment and there is a charge on there for the epipen for $97, so I either want that charge removed or another epipen!

Hope you are feeling better today!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/10/2009 6:18 AM (GMT -7)   
So glad you are feeling better.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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