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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 9/5/2009 1:06 AM (GMT -6)   
Hi everyone...I haven't been posting lately...I'm on different tx now...I tried Amoxicillin 3000mg/day but didn't really notice much. Now I am on Doxy and within 24 hours felt awful...I can barely walk because my legs are so weak and my balance is so bad. I feel like I am not myself at all and am becoming someone else. I am also doing my Flagyl pulse right now...4 days into a 7 day pulse.

I know I can't throw in the towel because I know the result of doing nothing is nothing. And my family would be crushed if anything happened to me. I just don't know if I can do this anymore. Today has been absolutely terrifying. I could barely hold a conversation with my dad. I don't know if it's the Flagyl on top of the Doxy or what...but it's bad...I don't have pain; everything is neuro...but it's so, so scary. My fingers barely work (I'm amazed I'm typing right now). I know what I want to do but my body just won't do it...like walking or doing stuff with my hands or legs or feet or whatever...there is like a short between my brain and body. I'm just losing all function day after day and piece by piece I'm fading away...I'm afraid I'll never find myself again and I will just continue to decline until I die.

I've never been so afraid before. I think a lot of my fear comes from knowing that I have to fight for the sake of my family...no matter how I feel...I can't give up because I love them too much and it would devastate them if I did. So I don't have the comfort of 'if it gets that bad I can always throw in the towel.' It's just not an option. I can't do that to them.

But I don't know how much more I can handle. I wish I could see a light, but it's completely dark where I am, and as far ahead as I can see. I wish I knew the Doxy was doing something and that's why I feel so bad...I wish I knew it would get better...I wish I really knew I had Lyme or at least something the Doxy will kill. I wish I wish I wish I wish.

Sorry if I don't make any sense...I can't even think. I don't know when I'll be back to reply. I'm on my sister's laptop because I can lay down and use it and be okay.

Sorry also for the pity party. I'm just scared out of my mind.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"Breathe. Let Go. And remind yourself that this very moment is the only one you know you have for sure."
 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 9/5/2009 1:27 AM (GMT -6)   
Jen,

I was just thinking that i hadnt seen you post in awhile now. i am glad you did.

i'm sorry your not feeling to good right now. maybe the doxy is working, and this is why your so sick. have you done any detoxing? it may help you some. as they always say you have to feel worse to feel good.ugggg

your in my prayers

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 9/5/2009 3:54 AM (GMT -6)   
Hello - I am so sorry you are feeling sooooo awful - reading your post bought back memories of my stint on doxy - I thought I was loosing my mind - I hadn't had much in the way of 'brain fog etc. untill 'doxy' - I only took it for 10 days - I stopped taking it without llmds advice - just felt soooo bad - BUT - after about a week of unbelievable fatigue etc, etc, - I felt the best I had felt for a couple of years!![not exagerrating]
 
I have never had a positive test for lyme - I did have 'bite' though.
 
I have read posts here and on other forums that doxy. can have almost immediate effect - also can cause severe depression  - I believe it is all part of 'herxing'  - I changed from doxy to amox. - but I feel that the doxy did a excellent job of eliminating a huge amount of bacteria - so looking back I am glad I took it - very glad.
 
You can stop your meds - give yourself a break and see how you feel - being afraid is a terrible feeling -  your body may need a break - if you are herxing then your body is doing a lot of extra work.
 
Be kind to yourself - sleep/hot baths/light food/lots of water.
 
Thinking of you - from 'English Lymie' - gorbs. xxxxx
 
 

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 9/5/2009 7:37 AM (GMT -6)   
Actually the fact you switched meds and within 24 hours felt awful is a good sign. Sounds like you found something that works for you and you are herxing. The symptoms are being caused by the dead Lyme. The more you can do to flush it out of your body, the better you will feel. Drink LOTS of water and water with lemon. Stay away from sugar and carbs. Think about getting a portable infrared sauna. They really really help your body to detox. Ebay has them new for under $200. They look like you are sitting in a silver toaster. Drink Yerba Mate tea. Not the best tasting stuff, but another tool to fight the Lyme. Yerba Mate leaves contain saponins, which stimulate the immune system and help fight inflammation. I bought a bag of the loose tea from the local health food store and make it in my coffee maker. ALso try to eat as much foods that alkalize your body as possible. Disease loves an acid body. There are plenty of lists of food that alkalize your body on the internet. Think of it all as a swimming pool full of algae. The pool turned green and you just dumped a bunch of shock (heavy duty chlorine) in and the green is gone but the water is cloudy from all the dead algae. It takes the filter some time before it can clear the water of the debris and the process goes way faster if you keep backwashing the filter to remove the dead algae that is collecting. You need to remove the dead Lyme for your body to feel better. Your body just got a jolt of poison in the form of the dead Lyme. Do all you can to flush it out.

not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 9/6/2009 12:35 PM (GMT -6)   
Jen,Sorry you are feeling so bad. I hope you are doing better today. Hang in there. And dont be sorry for the pity party, Thats what we are here for. Please let us know how you are. We will be thinking of you.

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 9/6/2009 3:37 PM (GMT -6)   
Dear Jen,

Sorry to hear you are suffering so much. Sharing both the bad and the good news is helpful to all of us because we learn a lot about lyme, treatments, and symptoms that way. No apology is necessary.

I agree that you are probably toxic from all the dead stuff, but you could also be sensitive to the drugs. In my family's case, "too much of a good thing" had very negative results. Be sure your doc knows what is going on. You may have to switch meds, or stop them, in order not to over-burden your body.

I have always felt that the idea is to kill the germs, not our bodies! There has to be a balance of some sort, but that balance can be hard to find. Hang in there, but be sure to tell your doc when it is too much!! You and the doc can work together to make the treatment bearable.

Best wishes to you, bablymers mom

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 9/6/2009 4:15 PM (GMT -6)   
Jen,

I was wondering about you, and hoping that things were going better for you. So sorry that you are still having such a horrible time! Still been praying for your healing! Keep trusting that you will get better, and hang in there, something has to work soon for you!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/7/2009 9:16 AM (GMT -6)   
Jendays, I'm sorry to not have posted to you sooner. I am so very sorry about the way you are feeling --  you must feel miserable and very desperate!
 
A lot of what you have described sounds like what I was going thru w/ Amox.  So I HOPE this means herx.  I don't believe I was fearing I would die (except for that 'S' word that I won't listen to). But I had a lot of fear that I needed to go to a hospital or that I would do something drastic, like try running away.  Or sitting down and never getting up.
 
I felt completely mentally instable. If that is a part of what you are feeling, then you must hold onto the fact that it is this disease and NOT YOU.
 
When others say the doxy causes depression, do they mean the doxy itself or the herx is causes? 
 
I skipped several doses of the amox here and there because I feared it was causing a herx that I could not mentally handle.  Sat and Sun I felt much better, so I don't know if the Bb has gone into hiding or if the Amox is finally helping.
 
Considering the way that you are feeling, perhaps you should skip just 3 or 4 doses or so and see how you feel.
 
I am nowhere near as ill as you, yet I have an understanding of a lot that you are feeling.  It is a living nightmare -- I don't know how else to put it.
 
I/we really don't believe that you are going to die, and even if this thought keeps interrupting in your mind, try your best to ignore it.  Tell it to stop outloud.  I am beginning to believe that Lyme has the ability to put horrible thoughts in our heads.  Messes w/ our minds something fierce.
 
Skip some doxy, do a little detox, get a good rest.  Your head needs a 'rest' as much as your body needs the abx.  You can go back to the doxy (unless you need to change abx) again once you feel a little relief.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 9/7/2009 10:11 AM (GMT -6)   
You might be herxing. Stick with it as long as you can and let your doctor know what is going on.... you may go completely down hill for a few days or a few weeks... but then come out of it "cured" or at least "a lot better".

Hang in there! And keep us posted!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 


Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 9/9/2009 8:26 AM (GMT -6)   
Jen,
 
I wish I could show you my journals from when I was first diagnosed and first started treatment. They are identical to your posts. I was you exactly. I was terrified daily and lost myself due to the neuro symptoms. I couldn't think and I just didn't feel like me at all. I ended up bed ridden for I got so weak and my neuro was so bad that even the phone ringing would set me off into a frenzy panic mode. I thought all the time that I was going to die and that I would never be myself again. It was the scariest feeling I have ever had in my entire life. Well, the good news is, that I did get better and all those symptoms went away in time. The bad news is, it took a long time and it was a hard battle to go through. I wanted to give up so many times and just lay down and die already, but I continued on the abx (which made me so much worse at first). When I thought it couldn't get any worse, it did and eventually it started to get better again. I was 23 at this time and living at home and had to have someone with me at all times. I was on abx for 2 1/2 years before I was 95% better and could stop. It took about a year before I noticed feeling any better and was able to start exercising which just helped my progress so much. The second year on meds I exercised and was able to do more around the house and go outside. By the end of the 2nd year and into my 3rd I could go out again (I didn't drive yet alone), but had to relearn how to live a normal life again. It was awful and I feel for you so much for where you are in your treatment and in the illness, but stay with it. I was on Biaxin/plaq. It was hard to take knowing I would feel worse, but I knew in the long run it is what I had to do.
 
You can get through this. It may not be quick or easy but you can do it. Just stay with the meds no matter how bad you feel. take it one minute at a time on the really bad days. Keep family around you and good people and disregard those who don't want to wait for you to get better. I lost some friends when I was at my worst because they didn't want to wait but I don't miss them now and have made so many wonderful new friends when I got better. I have gone on now to get engaged, had a baby and just bought my first house. All things I didn't think were possible back in my 20's. I am 34 now and I still get sick from time to time, but nothing like I was and going through the hell was worth it to get to where i am now.
 
If you ever need to talk, feel free at any time. I have literally been in your shoes so I know exactlly how you are feeling and just how scary it really is.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35849
   Posted 9/9/2009 9:31 AM (GMT -6)   
Hi Jen,
I'm so very sorry to hear what you are going through lately. I've been through a couple of times where the neuro sx are as bad as what you describe. You are right about this being the pits!!

As for me, when those sx start - the biggest (& hardest) thing for me to do is to quit trying so hard!! I've noticed as for me - the harder I try to make something work (legs, arms) - the less I am able to get them to cooperate!!

I have to concentrate on relaxing - not concentrate on getting a part of my body to move.

Just a thought~
Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).

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