NOT getting better!

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Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 11/6/2009 8:52 PM (GMT -7)   
Well, three months into treatment, and I'm worse than ever. This latest reaction to my new antibiotics made me feel worse than I had every before treatment, and it's not going away! It's been over a month, and I'm still getting worse!

I was hoping my new antibiotics would help clear some of my brain fog, but instead, I'm having more and more trouble! I cannot remember how to spell the simplest of words most of the time, I mix-up and mis-use my words, and most of the time when I talk it makes no sense! (see- I used to be a grammar-fanatic, and right now, I can't remember if that last "no" should be a "know" or a "no"....)

I have been in much worse pain nearly 24/7 for a month now, and my fatigue has been crazy. I can't exercise at all now- I don't have the energy, and my heart starts to go like crazy and I get light-headed if I do more than a couple minutes of walking! Besides, half the time I'm in so much pain I don't even want to walk.

I don't need to be getting better yet- I can understand it will take a long time- but boy would it be nice to be back to where I was!

And my Dr is in a different country, and we only have 15 minutes phone appointments every month, so I can't talk to him every-time something new and scary happens- especially since my family couldn't afford extra appointments.

I'm just so tired of all this! It's frustrating, annoying, and scary as heck! I hate not knowing what will happen next, and how I will feel each day....

Just needed to rant...

Nicky

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/7/2009 6:11 AM (GMT -7)   
Nicky,

I can relate to everything you've posted above. I've been having a terrible time spelling myself. "I" was the one my family called to ask how to spell words. Spelling is a pet peeve of mine but lately, I've been having to edit all of my posts.

I too am in pain 24/7. It is not fun at all.

Just a few suggestions that I have right off the top of my head:

•Check your Vitamin D levels (Low Vitamin D can cause severe pain)
•Have your thyroid checked too (Low thyroid levels can also cause pain)
•Make sure to detox regularly (This won't cure the brain fog but will help it)

Were you checked for co-infections?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 11/7/2009 9:02 AM (GMT -7)   
Nicky,
I feel for you. Especially being so far away from your doctor. I think most of us, even ones like me who are only an hour away from our docs, still go through things each month where we feel uncomfortable calling them. Do we call, go to the ER,or wait a few hours and hope it passes. There are so many ups and downs and scary symptoms. And sometimes when you feel fine the day before a horrible day it's hard to imagine things can change that fast. If you are going through a scary herx or something I would think a call to your doctor would be necessary. And I hope he wouldn't charge you for a phone consult. I have had to this a couple times and my doc would call me back to see what was up. I think they want to know because it could be you reacting poorly to the antibiotic and be nothing to do with Lyme. This info will help him in your treatment plan. I used to feel bad calling until I realized this and came to grips that this is what I am paying for.

Even though you are far away from him you are still his patient. Remember that okay? Docs that put their career on the line to help us really want to. It is their passion and without him knowing what a rough month you are having does neither of you any good.

And the exercise thing...same thing for me. It kills me. I know it is something we need to do to recover but boy it knocks me out! Actually I am going to bring this up to my doc when I see him in a few weeks. Let you know if he has anything interesting to say on the subject.

One more thing, I didn't see any improvements until about 5 months into treatment. So hang in there. I had a few rough months that I felt awful for weeks. It's hard to think all your hard work will pay off, but when you notice yourself feeling even a bit better it will be worth it.

Hang in there and call your doc. I think you will feel better with hi/her take on how you're feeling. My doc always makes me feel better.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/7/2009 10:57 AM (GMT -7)   
Nicky,

I'm sorry you are having such a difficult time. This Lyme journey is so unpleasant. I've been on meds for two months; the first month I felt pretty good, but now I feel worse. During the first month I was getting discouraged because I felt so good and thought that the meds must not be working or I'd have a reaction. Now that I am hurting I'm discouraged because, as you say, it is difficult to live this way. The fatigue is bad enough, but chronic pain brings with it a fateague all its own. It's also frustrating not to be able to exercise - that was always my secret to success regarding staying healthy. Now if I go to the gym and do practically nothing I'm much worse off than before I went, and while I'm there my heart is beating hard and racing. It is difficult to know if these symptoms are a positive thing because it means I'm killing bacteria or a negative thing because it means I'm getting sicker or having an adverse reaction to the meds. I tried working for a day yesterday and came home in complete defeat. I didn't have the energy to do the job well and by the end of the day I was in so much pain I couldn't think straight.

I am sharing my experience to let you know that you have a lot of company here. It's a small comfort, I know, but I do find it reassuring to know I'm not alone in this.

Take care,

Rose
I have Lyme; it doesn't have me.


blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 11/8/2009 2:05 AM (GMT -7)   
Rose and Nicky D, are you guys detoxing and having good bowel movements? the more you go the more that "die off" and the toxins released can exit your body quicker. do whatever you feel you need to have a BM at least 2 times a day I think it really helps to push lots of water too. I know these seem like simple things and maybe you've already got this covered, tongue heehee, but it really makes a difference for me. Research toxin binders- Chlorella is an excellent one - see if it is okay to take with your meds, it really should be as it is a "food", it is a green super food that binds to toxins- molybednum is supposed to be a toxin binder as well according to Dr. J. Chlorella really helps me with energy levels- yeah plus since its an algae it helps with constipation- as does any green foods. I know a lot of people use flax too. Anyway even if you do neither of these things at the very least do something to help detox- like the epsom salt baths or sauna if you have one. I don't have a sauna yet but i sure can tell you green super foods really do help! As do green smoothies- look at deejavu's post under the newbie section and you will see both smoothies and super foods are listed- i think she put "green vibrance" as her choice of superfood- there are many brands though. You can read up too on the reasons why green smoothies are beneficial to every disease- blending greens up in your blender helps release the chlorophyll which does SO many healing things for your body. Even if you just type in "benefits of chlorophyll" on the net you will see what i mean. You can also buy chlorophyll as a supplement at any vitamin store- although getting it straight from greens is probably always a better choice. Anyway thats just my little 2 cents- i'm still so new to this myself but reading and research really is helping.  smurf Don't stop reading and when you find something good to share PLEASE, please share it!
I refuse to stay sick! Period. 
 
 

Post Edited (finding721) : 11/8/2009 2:11:15 AM (GMT-7)


blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 11/8/2009 2:14 AM (GMT -7)   
Man Cajungrl, good info on the Vitamin D! made me realize i need to check and see if i'm getting enough!
I refuse to stay sick! Period. 
 
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 11/8/2009 7:14 AM (GMT -7)   
I still have brain fog pretty bad but it is nothing like it was the first few months of treatment. I even forgot my own son's name once! I know how you feel about words, what means what. It will get better. I know the die off just overloads your body with toxins so what everyone suggested is excellent advice. I am going to try it myself - if I can remember!!! I also would encourage you to call your doctor because he will either assure you everything is ok or he will decide to alter your treatment. Hope you feel better soon.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/8/2009 7:49 AM (GMT -7)   
finding - I'll check into the greens. I eat salad and other raw veggies every day, and have a powdered green drink that I don't use often enough. There are so many things I don't eat right now that it's difficult to get enough of the right nutrition. Thanks for all the info., I'll look for Chlorella, too. Sounds like a good supplement.

Rose
I have Lyme; it doesn't have me.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 11/8/2009 9:52 AM (GMT -7)   
Hi guys,

Thanks! I'm already on thyroid medication, and that did help me a lot. I take a bunch of pills and supplements that are supposed to help with detoxing (anti-oxidants, stuff like that), and I do some things a nautropath recommended as well (dry rubbing etc.). But my LLMD thinks this may be due to my liver just being overloaded by crap, and not able to detox everything, so he wants me to try IV glutathione, twice a week, for 2 weeks. (Apparently whey powder is another way or getting this? Maybe? My brain was a little too fuzzy to fully understand everything I read).

And I should start taking Vitamin D. I was taking it, way back when, but then I got "distracted" by Lyme disease, and forgot about it. So I'll try to dig some out of a cupboard today. I don't have a blender, but there is a place near me that does all-natural, no sugar, smoothies, and one of them is some sort of green veggie smoothie. I've never tried it, because I thought it sounded kind of icky, but maybe I will try now!

Nicky
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