posted
On march 19,2007 my life virtually ended.I was a endurance athlete,enjoying life,no money or family health issues. Then the sympthoms stated,weakness,fatigue,drop foot,twitching. Doctor to doctor,testing,more tests.Finally the crushing diagnosis,,,,ALS. I refused to accept this.Being an athlete ,I would conquer this hill as well. Knowing I was bitten in 2005,I explored and took the time to learn about lyme.Discussed it with the doctors.You all know how that was received. Finally a llmd told me what I longed to hear.Some of my sympthoms didn't add up to als. A window of hope,a diversion from the dismill future ,for sure As my condition progressed,kept telling myself.it's got to get worse before it gets better. Knowing Iv treatment was my last window to open,and that it could immflame my condition worse,i knew i had to try,or I'd be always wondering,what if,,,,,,,,,,,. Well,it did make me worse,barely moving with a walker,hands and arms getting worse,etc. Now no more windows to open,it's very depressing,I know when I pull the picc line,It will be like pulling my last hope,and all those smuge neurologist will have been right.All I ever wanted was to one day walk in their office again and say,,see.you didn't even give me a benefit of the doubt. So my depression deepens everyday,knowing tommorrow will be worse then today. I am a catholic,I pray hard daily,but I guess he is busy,,,maybe you all could find him for me and say a prayer for me,,thanks
[ 02. August 2008, 01:59 PM: Message edited by: NElyme ]
Posts: 27 | From Rhode Island | Registered: Apr 2008
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posted
There is always hope, please remember that. I have been as low as you are now and if you just take every minute, every hour, every day to keep your chin up......things will get brighter for you.
I did want to let you know that I was on IV twice for lyme and it always made me worse.
Can you talk your doc into a brain spect scan? It was really the only test I had that "showed" something was wrong.
I'm Catholic too, and I am going to say extra prayers for you every day that your hope comes back and that you feel better!
Posts: 867 | From PA | Registered: Jan 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Said a tear filled prayer for you. I was a competitive athlete too, intend to be again one day.
IV abx did not work for me either.....but there are other avenues to explore. Pls. do not lose hope. Keep trying.
As an athlete, you will appreciate one of my favorite quotes: "Winners never quit, and quitters never win".
Hugging you tight and wishing you well, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Keep on the IV! The worsening of your symptoms is temporary. You CAN still WIN!!!
God answers all prayers, just not always how WE want him to answer them.
Hugs and prayers!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
How long have you been on IV? On orals?
I ask because it can take a very long time to turn things around for some.
Posts: 7052 | From Colorado | Registered: Mar 2003
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Do not give up hope. These diseases are Hell but you will win if you continue to fight this.
Make sure you are detoxing. It could be the major problem.
And could you have something else along with the Lyme, a co-infection that the abx is not hitting or mold, heavy metals, etc.
Do not give up..Continue to research and ask questions. Find a good psychiatrist or someone to talk to asap..Get help to hold you until you are better. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Lyme does make us think and act as we would not normally.
I started tx about the same time you have and know that it is a long road. I have gotten worse symptoms too that have freaked me out.
Even though we do not see improvement on a day to day basis. Each day brings us closer to better health. YOu started in March and you are that much closer to being healthy.
YOur body is fighting for you and needs the abxs help right now.
I believe that we are the stongest people on earth to deal with this #$(@*.
talk to someone and let it out. It does help and someone said crying relieves toxins.
I pray that God will give us all strength and carry us when we can not do it ourselves. TO give others strength to help us.
barb
Posts: 167 | From USA | Registered: Jul 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Have you been tested or treated for bartonella? This makes me feel really depressed. When the bart acts up for me, its like spiraling down a deep hole into depression.
posted
NELyme- I've been very ill since March 2006, so can relate to the feelings of hopelessness.
One thing to consider is that the IV antibiotics may be too much for your body to handle right now. I am following a much more gradual approach to cleansing my system: starting with Cholestyramine for 4 weeks, then Minocycline 4 weeks, Doxicycline 4 weeks, THEN IV antibiotics.
This way, hopefully my system won't be overwhelmed with toxins. It is working so far, and I also have pain medication to deal with chronic and flaring pain. With the pain meds and gradual detoxifying, I believe I WILL get through this! Don't give up, but instead talk to your doctor about options that work at a level your body can deal with right now!!
-------------------- m2 Posts: 13 | From Redmond, WA | Registered: Aug 2008
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posted
Thanking all for your prayers and encouragement
Posts: 27 | From Rhode Island | Registered: Apr 2008
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Dear NElyme,
I am greatly saddened by your story.
I'm not familiar with your case or treatment.
I wondered what your IV meds were? Dosage? How long was your IV treatment?
I second what Melanie and tutu said.
From my own experience it can take a very long time on IV meds......very very long!!!!! It can take many months before any improvement is seen. I was at a point where I had nothing to lose but to just keep going month after month......it paid off.
Have you seen the new movie "Under Our Skin"? If you haven't, I hope you get the chance real soon. You can order your own DVD. I just saw it and it tells it like it is and in that.....there is hope.
It looks like from your post that you have been in treatment just a little over a year.
Depression is also a symptom of the TBI's....it helps us to remember that too.
My thoughts and prayers are with you.
Good luck.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
posted
God is NEVER too busy for you. YOU are the most important thing to Him in the universe!!
15 years ago when I didn't think I was going to live due to heart complications, I remember talking with God and crying at 3 am, outside so I wouldnt' wake anyone.
That day I turned it over to God, and decided to just do the best I could do.
Research, good nutrition, rest, trial and error, no sugar...none at all, and all natural foods..all the while talking with God. It took a year to get well.
The bad news is you can't do your Lyme Dance at the ALS doctors just yet. You will one day when you are well again! =)
The good news is, ill or well, you are never alone.
I'm sure it was no accident you arrived here at Lymenet for support from these wonderful people. Those who have traveled your path can advise and encourage you.
Give God a chance. He's with you every second. His timetable is just not as fast as yours.
Enjoy a little one on one time while you are healing. =) Every day, BELIEVE things will get better.
Spend time talking it all out with God. After all, you've got all eternity, and there's no one more important to Him than YOU!
Keeping you in my prayers.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
On march 19,2007 my life virtually ended.I was a endurance athlete,enjoying life,no money or family health issues.
Then the sympthoms stated,weakness,fatigue,drop foot,twitching.
Doctor to doctor,testing,more tests.Finally the crushing diagnosis,,,,ALS.
I refused to accept this.Being an athlete ,I would conquer this hill as well.
Knowing I was bitten in 2005,I explored and took the time to learn about lyme.Discussed it with the doctors.You all know how that was received.
Finally a llmd told me what I longed to hear.Some of my sympthoms didn't add up to als.
A window of hope,a diversion from the dismill future ,for sure As my condition progressed,kept telling myself.it's got to get worse before it gets better.
Knowing Iv treatment was my last window to open,and that it could immflame my condition worse,i knew i had to try,or I'd be always wondering,what if,,,,,,,,,,,.
Well,it did make me worse,barely moving with a walker,hands and arms getting worse,etc.
Now no more windows to open,it's very depressing,I know when I pull the picc line,It will be like pulling my last hope,and all those smuge neurologist will have been right.
All I ever wanted was to one day walk in their office again and say,,see.you didn't even give me a benefit of the doubt.
So my depression deepens everyday,knowing tommorrow will be worse then today.
I am a catholic,I pray hard daily,but I guess he is busy,,,maybe you all could find him for me and say a prayer for me,,thanks
....I seperated your post so I could read it. I have trouble taking in things so was not able to read what the others wrote.
...There is hope. I was bedridden for many years and am now able to get out daily. I use a power chair and am able to walk at times.
..I do not think there is just one treatment plan such as IV. I too thought the IV would make me well.
...I have not had overnight success yet. But, I am slowly improving. It has taken many different things.
...I could not use a walker as my arms were too weak. I drank from a star as I could not sit up and drink or eat.
Now, I prepare my own meals again as long as I keep them simple.
The rabbit in me is gone. I am a turtle now but at least I am moving and staying in the race.
I tried antidepressants and they took the wind out of my sails.
I did better off of them. But, I know it helps others.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
kam, god bless you for breaking up his post that i too could not read any of.
nelyme, please hit the enter key 3 times after each paragraph so we neuros can read and comprehend; big thanks.
so sorry your in your depression, but as everyone has stated emphatically....
DO NOT GIVE UP! fight as hard as you can!
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi NELyme,
Don't give up. You will get better. It takes time for the body to recover from this devastating illness.
I went thru 2 years of orals before being put on IV's. It takes awhile to kill all the bugs.
Don't give up hope.
I know I've done the same thing, questioning why God, why???
After 4 years I still don't know the answer but I'm sure I'll get one.
Hang in there!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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I'm a newbie and was searching for help for my mother, who was recently diagnoised with Lyme's, so I know nothing.
But I do know that in her case, PRIOR to being diagnoised, I took her to a therapist due to her threats of suicide (from depression) and she was given an antidepressant.
For her, it helped, but unfortunately, she had side-effects. She tried another kind, but it also caused side-effects.
And with what I'm learning from this board, when you're on ABX's then taking non-related meds may not be best.
I'm sure other, more experienced folks will give you their feedback on that subject.
But I CAN say from her experience that the antidepressant was really a life-saver for her. It DID at least resolve her suicidal thoughts.
And remember (from what I've learned in my research) --
The depression is actually chemical, due to the changes in the body from the disease, not to mention psychological due to the disappointments and obstacles that you are facing.
Even without taking anti-d's -- as someone else said, talking to someone, letting it all out CAN be helpful.
Being the athlete you are, I know you have it within you to 'push on' and make it. Use your inner strength to keep on fighting.
I know a lot of things I read on this board sound discouraging (all the struggles many are enduring) but there is always hope and light at the end of the tunnel.
God Bless !!
[ 05. August 2008, 02:35 PM: Message edited by: brit5467 ]
Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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posted
NElyme, I can relate...not personally, but watching my 82 y.o. VERY ACTIVE, VERY SELF-SUFFICIENT mother struggle with the limitations. It has got to be most frustrating for you to not be in control. THAT is what caused her depression, along with the fact that, as I said, it in itself is also a symptom.
Prior to being diagnoised with Lyme, she struggled with major fatigue along with a myriad of other symptoms that were being blamed on post-operative complications. She had a cervical diskectomy early March and all her Lyme symptoms started after that (but we didn't find out it was Lyme until last month).
We thought the pain meds, recovery issues, etc. were the cause of her shaking, double-vision, nausea, etc., etc. and she just got sick of feeling that way. I guess what I'm trying to say is - she was so vital and energetic at her age, still able to paint kitchen cabinets, hang wallpaper, put up crown molding, cut the grass, walk the dog, crawl up on the roof and clean gutters, sew, etc. So I can understand how you must feel as an athlete, since I sort of viewed her as an 'athlete' for being able to do be so capable at her age, all the while struggling with her neck pain (prior to the surgery).
I have no answers. Just wanted to say I understand and I'm sorry that you're going thru this. Saying 'hang in there' and 'think positive' don't mean much, but that's all you can do right now and just believe in your Higher Power. Prayer is powerful, but things are done in God's time and not ours. My thoughts are with you, Bonnie (Brit)
Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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Are you herxing? I would stop the antibiotics for a few days or possibility pulse the antibiotics until your body can better handle them. Do this only with the OK of your doctor.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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