Not sure I can really do this...

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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/3/2009 2:14 PM (GMT -7)   
Today has been the most terrible day. I feel there is a huge disconnect between my brain and my body. I know what I want my body to do (move my feet, point my toes, move my legs quickly, type, play piano, etc)...but my brain will not tell my body quickly enough how to execute these tasks. I really feel like I'm completely losing it.
 
I sat in a panic state for almost an hour today until I finally gave in and took about 3 mg of Valium (I bit a corner off one of my 10 mg pills). After the Valium kicked in and I calmed down, so did everything else and now I feel okay. I sat there crying and asking what is happening; why is this happening (?)
 
I have disconnected feelings on a daily basis but today it was terrible. I don't know why, but this doesn't feel like it's a lyme thing. I really feel like my brain is just deteriorating inside of my head, and some destructive force is sucking the life right out of me as I watch, helpless to stop it.
 
I'm not sure I can keep going. Today I really felt I was going to die.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 7/3/2009 2:23 PM (GMT -7)   
i'm sorry your feeling this way today.. many hugs going your way..

i never felt this way either, if i got sick, i was sad for a couple days, or if i had the common cold i was annoyed for about a month at most.. but having lyme has totally changed my brain and how i think..its really sad.. The lyme does add more anxiety than what we are use to. and its health anxiety which is way worse.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/3/2009 2:27 PM (GMT -7)   

Hi Jendays

I'm so sorry you're having such a tough time! That does sound like a terrible day.

I'm still very new to Lyme, but I can tell you that not only does it cause brain fog- it also messes with your emotions. That is one of my worst symptoms. The combination of the two can really make you feel like you're "losing it."

But you can do this! It's scary, and crazy (oops, almost said "scazy and cary"), but you can do it. Do you have friends or family you can talk to for support? And remember that everyone here is here for you as well!

I'll be praying tommorow is a better day for you!

Nicky

 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/3/2009 2:42 PM (GMT -7)   
Jen,

Hey hun. It's always something huh? I definitely know how you feel. It almost feels like it finally gets a tiny bit better, then we're taking 2 or 3 steps back again. Do you think you're cycling yet? Maybe that's why it's so intense?

I also want to say that I have had the brain disconnect feeling too. Not nearly as bad as you but I remember wanting to get something inside of my purse and my hand just didn't want to go there. This happened several times in different situations and I remember telling my husband that my brain wasn't working right. It is very scary!

Have you ever looked this symptom up to see what comes up? Maybe it is something else going on with Lyme? I'm stumped:(
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:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/3/2009 2:45 PM (GMT -7)   
Oh Jen, I feel terrible for you and often feel the same way about the brain deteriorating. Could it be getting worse from herxing? If I remember correctly, you recently started on a new protocol so try and hang in there. If the valium helps you get through so be it. I'm sending you lots of hugs and prayers.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/3/2009 2:55 PM (GMT -7)   
Jen, I wanted to let you know that I also have some of the same problems although probably not as bad. I would often go to pour a glass of water and entirely miss the glass or go to put food in my mouth and hit my face. These are just a few examples of the many. When I first started orals it got a little worse but has since gotten much better. The brain fog and emotional stuff has gotten much worse. I know what I want to say or do but my brain just can't make the connection or process the information properly. Then there are times when I have no idea what I want to do or should do. My brain literally shuts down. It's very scary but can get better.

You're not alone and you will get through this.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/3/2009 2:55 PM (GMT -7)   
Thanks, everyone. The Valium does help, but after 5 years I am finally getting off of it slowly. I don't want to build back up to the dosage I was at, but for now, I will take it if it gets me through the day.

EDIT: The only place I have found "slow movement" is on Parkinson's websites. They say it is an early symptom...along with gait difficulty, which I also have. The only thing I don't have is tremor. (Knock on wood)


Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
http://www.myspace.com/399827188 

Post Edited (Jendays247) : 7/3/2009 3:59:11 PM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/3/2009 3:00 PM (GMT -7)   
I also wanted to tell you that the disconnected feeling you get from your limbs could be anxiety or even panic attacks. I had depersonalization really bad. I used to feel like I was standing outside of my body. I still sometimes feel like that but it's not as bad anymore. The brain can do some horrible and scary things.
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:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Post Edited (CajunGrl) : 7/3/2009 5:10:01 PM (GMT-6)


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/3/2009 3:11 PM (GMT -7)   
cg i get the feeling of standing outside my body too at times. and yes it it very starnge.

Jen i am so sorry your haven so many issues. i can only think as your new meds maybe waking the lyme up and they are moving around in your brain causeing this. JMHO
i pray tomorrow will be a better day for you :)
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/3/2009 3:22 PM (GMT -7)   
Man...I never thought about Parkinson's more than I am right now. I am a textbook case.

I'm terrified.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/3/2009 4:11 PM (GMT -7)   
I still haven't looked up the symptoms but I am really curious. I will probably scare myself to death.
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:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/3/2009 4:15 PM (GMT -7)   
Jendays, I am so sorry. Try reminding yourself that this feeling is temporary. I would sure help you if I knew how.

I do not really relate to how you are feeling now, but today I HAVE felt exactly what your subject line says. I don't want to do this or be this anymore, ya know?

I will at least say some extra prayers for you, OK? If healing miracles are not coming our way, we must at least pray for strength!
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/3/2009 4:32 PM (GMT -7)   
+Lyme,

That is the problem...I do not know that it is temporary. I wish I did know that.

If I knew for sure I had lyme or perhaps believed it, maybe I would know it could be fixed. But I do not know.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/3/2009 5:06 PM (GMT -7)   
yes i did 39ind and 41 +++
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/3/2009 5:14 PM (GMT -7)   
Jen,

It's weird that out WB tests are so similiar but our symptoms are way different.
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:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 7/3/2009 5:33 PM (GMT -7)   
For those of us with the psychiatric symptoms - the herxes can mess with us big time. Confused, unable to follow a converstaion, anxiety, depression, periods of being very emotional. Crying at the movies anyone?

If you're just starting - it looks like you're hitting the Lyme pretty hard. Perhaps you can talk to your Dr. about backing off the abx some while you're having a bad herx. When I start a Flagyl week I only take it once on the first day, then twice a day after that.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


kandinsky
Veteran Member


Date Joined Sep 2006
Total Posts : 2300
   Posted 7/3/2009 7:24 PM (GMT -7)   
Hi Jendays ~

I am sorry to hear that you are having such a hard time, but happy to see that you are on treatment for the lyme. I have been on the board for sometime and remember how difficult and confusing a decision it has been for you.

I experienced the same type of symptom you describe having a disconnect between your brain and body. For a long time I had to consciously move by body through everything I did - think about walking across the room, about putting one foot down after another - rather than it happening more automatically.

You are not losing it, nor does this mean you have parkinsons and are going to continue to deteriorate. Scientists who do lyme research speculate that many neurodegenerative illnesses (ms, als, parkinsons, alzheimers, etc) for which we know no cause at the present time may be caused by lyme and the other tick borne pathogens.

Lyme treatment is very difficult to go through, but I know that you can do it. Unfortunately things get worse often before they get better and it is a lot for a person to go through. I am much much better than I used to be, but it took a whole lot of treatment for lyme and bartonella for me to get here.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/3/2009 9:19 PM (GMT -7)   
Kandinsky...thank you so much for your reply...I feel you know exactly what I'm talking about...it's terrifying...I think you expressed it perfectly in that you said it doesn't just happen 'automatically.' Although, sometimes even when I think about things, they still don't happen as quickly as I'd like - for example, I do a lot of stuff to keep my muscles moving because I don't get around much - and when I'm laying down, I will point and flex my feet, tighten my calf muscles, etc. Lately, when I do this it becomes difficult on my left side to point my toes, or do fine movements. Do you know what I mean?
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 7/4/2009 5:41 AM (GMT -7)   
Jendays,

I'm so sorry about what you are going through now. I know this feeling very well when your arm and legs don't do what your brain tells them. I had it for months (Sept- Dec.), when I was in a bad shape and I didn't know that I have Lyme.
Also, one of my worst symptoms is my brain fog with memory and concentration problems. I alway feel as if I am drunk all the time. I have emotional numbness too, for example when I look at my parents or sisters, I don't feel that they are my family. I feel they are strange. But my home is strange too. I have derealization and depersonalization too. Now these are better than it was Sept.-Dec..
Now I'm very scared about starting ABs, because I know how bad symptoms can be, and maybe it will be worse than it was ever before. :(

I see you take Biaxin. Could you tell me how many mgs did you start it and how fast did you reach the 1000mg? I also have to take Biaxin with Cipro and Tindamax, but this is my firts time to treat my Lyme and I'm scared.

Also, I was addicted to xanax before and when I stopped it I had hallucination and my anxiety is still bad. Because of my previous addiction I'm afraid of taking Benzodiazepine again, but i know maybe I won't be able to avoid it
I was thinking about Valium, because it is lighter than xanax, but I never tried it. I see you take Valium.

I just read:

"Interactions between your selected drugs

Moderate Drug-Drug Interaction Biaxin (clarithromycin) and Valium (diazepam) (Moderate Drug-Drug)
MONITOR: Macrolide antibiotics may increase and prolong the CNS effects of certain benzodiazepines. The mechanism is inhibition of CYP450 3A4 hepatic oxidation of the benzodiazepines. Midazolam, triazolam, and alprazolam have been specifically studied in this regard." http://www.drugs.com/drug_interactions.php

Did you notice it with the Biaxin and Valium?

I hope you feel better soon.
HUGS
have lyme for about 4.5 years. I've just got positive lyme test.
(sorry about my English, it is not my mother tongue)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/4/2009 7:23 AM (GMT -7)   

Jendays, many people with Lyme have the disconnected feeling you describe.  I have a name for it: "OPS" which stands for outer-planetary surrealness.  It can be very scary but realize it is the disease.  It will get better. 

It sounds to me like the antibiotics are stirring things up.  I agree with kandinsky, it is normal to feel worse before feeling better and it can take time.  Take things one day at a time and when that is too hard take them one minute at a time.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/4/2009 8:52 AM (GMT -7)   
Jendays, I am so sorry that you misunderstood what I intended to say. I'm sorry I was not more clear. By reminding you that this feeling is temporary, I was not referring to the disease you are fearing. I was referring to your feelings of hopelessness, despair, and desperation about all of this. You will have a day (I believe very soon) that you are feeling emotionally and mentally stronger, and you will be better able to deal w/ all your fears. I truly believe this.

This illness is messing w/ my mind something fierce. Even tho I have experienced a lot of relief (knock on wood) from a lot of my pain, (was it a few weeks of abx for other stuff? Is it the vitamin D?), I feel more exhausted and depressed than I had been. That makes everything seem worse, doesn't it?

Again, if we aren't blessed w/ miracles, we must continue to pray for strength. I am praying for yours.

Suspect TBI back in 1972 (year corrected by Mother!)  Attacked tonsils, neck, pregnancy (miscarraige), appendix, heart (Mitral Valve prolapse)               Hypoglycemia, depression (in the 70's)                                                             Scoloisos (genetic), chronic neck and back pain.

Next suspect discovered Mother's Day 2007. Diagnosed Lyme and Bart June 2009. Awaiting many other test results.                                                                 In treatment for recurrent depression, anxiety, low thyroid.                                       Bit again 7/1/2009  Began 200 mg Doxy

 

 


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/4/2009 9:43 AM (GMT -7)   
Thanks again, everyone...

Hope_29~

I started right away at 1000mg/day with Biaxin. The only thing I noticed initially was that it was a little more difficult to fall asleep (I am dealing with this again now 4 weeks into treatment). I didn't notice anything but I was aware of the interaction with the Valium. I had been cutting back and only take between 1/4 and 1/2 pill every day of it (2.5-5mg), so it wasn't much.

By the way, I'm not sure if Xanax is really stronger than Valium. I know for sure that the half life of Valium is much longer than Xanax, and doctors are more reluctant to prescribe Valium these days because of the addictive quality. To be honest, I think it helps me IMMENSELY, and I'll take any kind of relief I can get right now.

Let me know if you have more questions about the abx.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/4/2009 12:23 PM (GMT -7)   
Jen,

I don't know if Klonopin would help with your dizziness but it is awesome at calming down anxiety real fast. You place it under your tongue and let it melt. It has a longer half life than xanex. It lasts up to 12 hours. It really helped me and still helps me when I need it.
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:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/4/2009 1:27 PM (GMT -7)   
CG~

Valium helps so much with my dizziness, and it has a longer half life than even Klonopin. I was on Klonopin before and I liked it, but that was before all this dizziness stuff.

I remember liking it a lot actually lol
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/4/2009 2:07 PM (GMT -7)   
I know, LOL. I like is alot too. I only take it prn and that is usually twice a month. My husband takes a low dose now too when he has restless legs. It works really well. I remember giving him a tiny piece of mine when he couldn't sleep because of the restless legs and he says, "Its not working.". I told him to give it another five minutes. Then he says, "Oh, I feel it now" and rolls over and falls asleep, LOL.
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:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

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