Has Anyone's Brain Fog Become Worse with Treatment?

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scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/26/2009 5:54 AM (GMT -7)   
Has anyone's brain fog become much worse with treatment before becoming better and how long did it last?  I'm definitely not referring to a herx.  I started treatment in February and although other symptoms have gotten better the brain fog remained the same until about 3-4 weeks ago.  Then all of a sudden I started to feel that the brain issues were becoming even worse and on a more constant basis.  My llmd told me to stop the IV Rocephin for two weeks and come in for an appointment which is scheduled for Tuesday. 
 
Just wondering what the heck is going on.  I was prepared for the herxes and for any sort of recovery to be a long process but I wasn't prepared for this!  I was hoping to see even slight improvements in the brain issues by now and not have it get so much worse.   
 
I have to admit that I'm not detoxing the way I probably should be.  Most of the time it's difficult for me to get out of bed or off the couch no less get in the tub.  I do drink a lot of water but my eating habits have also slipped lately - due to severe cravings and a bit of emotional eating.  lol
 

judy3
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Date Joined Nov 2006
Total Posts : 667
   Posted 6/26/2009 6:25 AM (GMT -7)   
HI,
I got much worse when I started meds but the end of the 3 months of Rocephin I was much better

scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/26/2009 7:31 AM (GMT -7)   
Hi Judy, I'm so glad the Rocephin worked for you. Was it a gradual improvement or did you find one day that you suddenly felt much better? How long were you sick before starting the IV's?

I recently finished my third month and now my doc thinks I will need to continue with the IV's for a year more because of how long I've been sick and how severe my symptoms are. If only this was diagnosed and treated appropriately in the beginning, I probably would have only needed one month of IV's, if even that.

For all those with neuro lyme, please consider starting IV Rocephin right away. It can and often does make the difference in whether someone recovers or not. I realize that everyone's situation is different but I don't want my "if only" to become anyone else's.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 6/26/2009 7:35 AM (GMT -7)   
Scorpio,

My brain fog has come back since I started oral meds. I'd probably be a zombie if I were on a picc line. I do know that it is very important to detox especially when you are on IV. It's probably toxins. I notice that when do detox, it gets a little better. Why don't you try doing that for the next 3 days and see what happens? I know it is hard. I am in the same position as you....from bed to couch, vice versa, but you need to get those toxins out of your body. Squeeze a lemon in your water too. It's great for detoxing.

I sure hope it gets better for you soon. I hate that feeling.
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
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/26/2009 9:38 AM (GMT -7)   
Thanks CajunGrl. I did force myself to get in the tub last night and will try again today. How long do you soak? I find it so hard to just lay in the tub doing nothing although I have no problem doing it on the couch or anywhere else for that matter. LOL

I also realize I have to be more careful about what I eat.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/26/2009 11:17 AM (GMT -7)   
scorpio, maybe if you try turning on some music and lesion to at lest 4 songs i think they said to stay in the tub for 20 to 30 mins. maybe even take some friut to snak on will help. light some candls set the mood so to speck. to help you relax in there more so you can stay longer.

as for the IV Rocephin my ID was going to place me on it. knowing i am allrgic to penacillin. maybe i should tell him to try me on it next week and see what happens. cant be worse then what i am going thro now.

I hope your better soon :)
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 6/26/2009 12:49 PM (GMT -7)   
Scorpio,

I usually stay in about 20 minutes or longer but if you're just starting, I'd say 10-15 minutes. You do want to make yourself sweat. That's the only way the toxins come out. Don't forget to use a dry brush on your skin before you get in and rinse off after. I know it's a pain in the rear but it does help. I usually take an empty cup and fill it up with the water in the tub and pour it all over me.
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 6/26/2009 6:57 PM (GMT -7)   
RottenDog, I think you should consider taking whatever the doc offers you. It just might help you. I sure hope so. I am also allergic to penicillin and have had no problems with the Rocephin. I think they can do a test dose for you.

CajunGrl & RottenDog, Okay I'm taking your suggestions and going to attempt to get in the tub now and hopefully detox a little. lol Just not sure how long I'll be able to stay in there. I've been living here for 8 years and for some strange reason never liked taking a bath in this tub. It's shallow and far from the luxurious tub I dream of soaking in. LOL If I don't soak long enough in the tub maybe I'll at least soak my feet in a bucket. ****!

RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 6/26/2009 9:13 PM (GMT -7)   
scorpio, just think i live in a trailer and you they have the worlds smallest tubs. and i am thnkfull to have it, as when i was married we lived in a 30 foot RV, no tub at all. just a little shower. i couldnt even shave in. your butt would hit 1 wall and you head would nit the door and it would pop open..lol

like CG said use a cup to pour it over you.

i hope your feeling better soon
   RD
                                                                                                                 
 
still looking for answers
 


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/26/2009 9:46 PM (GMT -7)   
RD, LOL! I did use a cup as CajunGrl suggested. I hope you feel better soon too.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/26/2009 10:13 PM (GMT -7)   
i'm not sure but i think i am getting worse. today i felt as tho my eye was swollen. i asked my b/f if it looked swollen and he said my hole face was, then right after that i felt like i was burning up in my face only then the creepy crawlys started in my face. and everything was blurry for awhile.

its all stoped for now, but it sure is scary then it happens. and to make matters worse is knowing i wont get any help for it. i hate this disease and Dr.s more and more each day. the only thing good i can come up with in all this. is that i have made some great new friends.

i hope you better soon.
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/27/2009 7:41 AM (GMT -7)   
Omg! Y'all are both too funny!! I needed the laugh.

Scorpio: How are you feeling today?
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 6/27/2009 9:26 AM (GMT -7)   
RD, I'm sorry you're feeling so horrible and hope you feel better.

CG, RD always makes me laugh. lol I hope you're feeling a little better and adjusting to your meds.

I really don't feel too well today. Flu-like symptoms are back along with the usual fatigue and brain fog. I'm so tired of trying to figure it all out. Not sure if it's because I'm on a two-week break from the IV Rocephin, if it's because of the rainy wheather we've had or if it just is what it is and has been for years.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/27/2009 9:38 AM (GMT -7)   
Scorpio,

When I finished up the Amoxicillian the first time I was on it, I had really bad brain fog hit me really hard. It has to be the toxins because my head hadn't felt like this in a while.
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 6/27/2009 9:41 AM (GMT -7)   
CG, I wonder if the toxins are also causing the flu-like symptoms again too.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/27/2009 9:44 AM (GMT -7)   
That may be just your regular Lyme symptoms. Are you going to take orals or are you gonna get back on the IV?
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 6/27/2009 9:58 AM (GMT -7)   
I've been taking orals (Mepron, Zithro, Mino, Zithro, Art) since February and the doc wants me back on the IV's again for another year. I'll find out more when I go in for my appt. on Tuesday.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/27/2009 11:14 AM (GMT -7)   
Good luck hun.
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


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/27/2009 11:14 AM (GMT -7)   
scorpio i was talking to another friend of mine last night who just whent thro cancer and she told me that tomoatoe was good to help remove toxins in your body, that you should eat 1 a day kinda like the saying a apple a day keeps the doctor away. i am going to try it and see what happens.

what do i have to lose, but the creepy crawley :)
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)

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