posted
I was diagnosed with persistant chronic lyme in 2003. I have been on all the antibiotics I think my body can tolerate. This has significantly affected me in the following ways: 1. Huge weight gain, despite strict 1600 cal. idet of fresh foods. 2. Deep depression. I'm seeing psychopharmacologist who has me on Lamictal for mood stability and Lexapro for depression and clonopin for anxiety when needed. 3. I have pain thoughout my body. IT seems to rotate from severe migraine, to horrible back pain to constant leg pain, and then the cycle oes round nad round, never gone. 4. I love my family and children, but have no desire to get out of bed. When I do, I go downstairs and work on the couch. I do stil work from my laptop. 5. I have significant memory problems. Sometimes, things happen and they don't ever go into my memory bank at all, and it's as if it never happened at all. I have all of the congnitive problems, however, I can work on the computer, it just takes me about 4 itmes longer. 6. I have no desire to get up and get dressed. It's such a chore. I hate to take a shower because I hate being cold and it makes me cry that it is such a difficult task.
Any suggestions? Am I still just depressed and that's why I find it hard to get out of bed? I used to be so active, taught aerobics, had my own business, took care of my two boys and husband and large house, and now, as you all know, I've lost my life. I've lost me, and it's difficult for anyone to understand.
Everyone wants me to get better, but I just don't believe there's any so called "cure". I'm trying y best, believe, me, but I'm scared this is it for me. I'm trying to get into the Columbia U. Lyme study, but I'm wondering if it's worth it.
Sorry so long, but I guess we're all in the same bag, but at different levels.
Thanks everyone!
Posts: 75 | From NC | Registered: Dec 2004
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Sorry you are going through this NC.
I dont know how to help you, but just to tell you to hang in there.
I hate getting in the shower too. I end up sitting in the tub just crying everyday. Lately its been better for some reason.
Please dont feel any guilt about your children and husband. You are sick and all of us Lymies have had those times where you just cant get out of bed.
Youre body is just tired. Its not your fault. One day I believe you will get better and then you can spend more time with your family and they will understand.
posted
think about co-infections..I was on abxs and thought was depresed....bartonella was the culprit..now my mind is as sharp as before.
Posts: 983 | From The sky | Registered: Feb 2005
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posted
LisaS - thank you for your kind words. You are right, I am ill and that is why I'm so tired. I know I didn't bring this on myself, but as we all know, we want to live life.
It's nice to know that I'm not the only one who cries during bath/shower time! Perhaps it's our time to release our stress?
I have been tested for Everything - and have no co-infections - thank God! Don't need that too.
Posts: 75 | From NC | Registered: Dec 2004
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posted
sorry to ruin your hopes...I was tested twice for co -infections and negative both times....treating them was the answer after 6 years on abxs....the best LLMD in the world told me once "your lyme bactria load is under control in your system....babesia and bartonella are the ones bugging you....that's why even on Bicillin LA I was still sick....
Posts: 983 | From The sky | Registered: Feb 2005
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posted
I'm glad you found the answer for you. I was treated for co-infections even though I tested negative. I was on 9 months of IV antibiotics and they cycled through all of the antibiotics that would kill the co-infections as well.
I have neuro-lyme disease and have significant memory and cognitive problems. It's funny that any time I post something to Lymenet, the first thing I hear is either it must be "co-infections" or Yeast. Boy, wouldn't life be easier if there was such an easy answer. Ive dealt with it all. Thanks for your comments though.
I can't believe you were on antibiotics for 6 years! How did it affect you? I became toxic and regardless of how I ate and took probiotics and yogurt, I ended up with yeast of the gut. Everything time I take antibiotics, I immediately have intestinal problems. Obviously, I know I'm herxing, but I get so sick, I'm rushed to the emergency room.
Posts: 75 | From NC | Registered: Dec 2004
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posted
NC: Just a thought , but sometimes ( every year or so ) I HAVE to change my antidepressant as it seems to lose effectiveness . Everything seems much more bleak than the usual very challenging obstacle course called life. Sometimes changing meds can help our outlook and the hopelessness ( the messages that go thru our minds that better days will NEVER come) and despair .
Or another thought , but maybe you need a break from ABX and herxing for a little while .
I am encouraged when I read posts from people who found relief from Buhner's protocol and rife .
Many of them had taken ABX for years . That tells me I need to keep hanging on and trying different options.
God bless you as I know you are suffering terribly . I will put your name on my computer and pray for you to be led to a path of treatment that brings relief and better days . May God supply you with some hope SOON !
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Jennifer, I sent you a private response after you pm'ed me and wanted some alternative info. You haven't read my response yet. Do you need info on how to open/read private messages?
Thanks, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Cobweb
Unregistered
posted
"2. Deep depression. I'm seeing psychopharmacologist who has me on Lamictal for mood stability and Lexapro for depression and clonopin for anxiety when needed."
Treating Lyme and co-infections is like a crap shoot I think-a tedious game of tweaking a combo of medicines till effective treatment is found.
Treating my depression and mood swings has been like a crap shoot too- still don't know the correct formula for me-but it also sounds like you don't have the correct formula either.
I assume you were treated by an LLMD for Lyme.
Does your psychopharmacologist know this combination is not working for you since you are still so depressed? Also antidepressants can cause weight gain-regardless of how you eat-very frustrating. There are probably as many different psyche meds as there are antibioitcs.
I don't think I would have as much fun on Lymenet as I do if I was "stable"
posted
[QUOTE]Originally posted by Jennifer Geddie: [QB] NC: Just a thought , but sometimes ( every year or so ) I HAVE to change my Or another thought , but maybe you need a break from ABX and herxing for a little while.
Jennifer: Thank you for your very kind words and thank you for your prayers. We all need to pray for each other.
Just wanted to tell you that I started my medications just about two months ago, and perhaps the other fellow is correct in this isn't the right combo.
The other thing is that i am not on ABX anymore. I found that I just couldn't take it.
I am going to call my doctor and let him know that I'm still depressed.
Thank you all for your comments.
Posts: 75 | From NC | Registered: Dec 2004
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posted
NC: I bet getting a depression med that hits the right notes will make a SIGNIFICANT difference all of the way around and suspect the one you are taking is not the best mix for you .
I am fortunate in that I can take prozac or zoloft and rotate them every year or two .
I just ordered Stephen Buhner's book on alternative lyme treatment ( used at amazon) and am looking into rife . I am also thinking of combining the Cowden protocol ( samento and cumanda ) with Buhner's , as I do not want to take ABX forever and have limited funds . I do not think ABX alone will work for me.
Also , I have a friend who treats lyme patients in WA and uses pulsed minocycline ( every other day ) and glyconutrients , which seem to make the therapy work BETTER in most cases ( ambrotose ) . They increase cell to cell communication.
Check out the posts on rife here by folks who got sick of ABX and got better . Maybe I will buy one for myself for Christmas .
There are other ways to attack this pathogen that have been successful for others here .
We have ALL been down the dark depression road and know the suffering , but you will find a way that gets you to a better place !
posted
As many people said, finding the right meds is not always easy. Sometimes something works for a while and then it doesn't.
I only used a few for many years. Then, when I got REALLY sick, NOTHING seemed to work.
I had the anitdepressents and mood stabalizers and I can not even tell you how much therapy.
About a year ago I went off all of them. I had all my neuro levels tested and was treated "naturally."
The reason my LLMD checked the neuro levels was to see exactly where my body was at so I was not taking something that I had too much of already and to be sure I was getting extra of what I really needed.
I did notice a difference.
Partly because my doctor moved and partly because it was expensive, I have gone back to a script. (but I still take 5HTP)
If I remember correctly, (and with my brain I may not) I believe I was taking certain amino acids (and other stuff) to help my body use or absorb the "antidepressants" properly.
You just have to keep going, let your doctor know what is going on and make changes as needed.
I can HONESTLY tell you I KNOW EXACTLY how you are feeling.
I had to FORCE myself to take a shower, forget getting dressed in real clothes!
Sometimes, I would look at people I loved the most, but I could not "feel" it. I really couldn't. I was "void" of anything but pain (physical and emotional), hurt, sadness and despair.
And sometimes, I didn't "feel" at all. I just "was" (if that makes sense).
Being sick and removed from "the living" (as I saw it) can do that. Sometimes all the meds in the world can't totally help.
You may go back and forth for a while. I know I have.
In the times I am really down and out, I think of the times I bounced back from it. I hold on to those times for dear life.
I am not sure if anything I am saying is helping or even making sense. Just know that if you keep going, you will get through it.
AND YOU ARE NOT ALONE! Posts: 240 | From MA | Registered: Nov 2006
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quote:Originally posted by NCLymie: I was diagnosed with persistant chronic lyme in 2003. I have been on all the antibiotics I think my body can tolerate. This has significantly affected me in the following ways: 1. Huge weight gain, despite strict 1600 cal. idet of fresh foods. 2. Deep depression. I'm seeing psychopharmacologist who has me on Lamictal for mood stability and Lexapro for depression and clonopin for anxiety when needed. 3. I have pain thoughout my body. IT seems to rotate from severe migraine, to horrible back pain to constant leg pain, and then the cycle oes round nad round, never gone. 4. I love my family and children, but have no desire to get out of bed. When I do, I go downstairs and work on the couch. I do stil work from my laptop. 5. I have significant memory problems. Sometimes, things happen and they don't ever go into my memory bank at all, and it's as if it never happened at all. I have all of the congnitive problems, however, I can work on the computer, it just takes me about 4 itmes longer. 6. I have no desire to get up and get dressed. It's such a chore. I hate to take a shower because I hate being cold and it makes me cry that it is such a difficult task.
Any suggestions? Am I still just depressed and that's why I find it hard to get out of bed? I used to be so active, taught aerobics, had my own business, took care of my two boys and husband and large house, and now, as you all know, I've lost my life. I've lost me, and it's difficult for anyone to understand.
Everyone wants me to get better, but I just don't believe there's any so called "cure". I'm trying y best, believe, me, but I'm scared this is it for me. I'm trying to get into the Columbia U. Lyme study, but I'm wondering if it's worth it.
Sorry so long, but I guess we're all in the same bag, but at different levels.
Thanks everyone!
-------------------- Nancy B Posts: 3 | From Sarasota FL home | Registered: May 2006
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