posted
Friday I felt better than in a long time and today I am back in a wheel chair because walking is causing me so much nerve pain, hips to toes. Hips being the worst because I can not avoid the touching anything!!
This is the 6th time I have been in a wheel chair in 4 years. This time though I didn't do anything like go to a doctor for help, and them giving me cortisone shots for this severe pain.
This is the first time nothing happened between Friday and today except maybe a possible UTI.
Friday I got my Lyme diagnosis. Should I call the Lyme Doctor or just wait it out? I did have antibiotics from my doctor here called in for the possible UTI. I could not get to her office, which is why I say "possible" UTI.
I feel so bad, I was so excited Friday, finally a forward step. Now I feel like I went backwards and for no reason.
The lyme doctor did not put me on antibiotics yet because he wanted my sleep to get better because my sleep disorder is one of my worst problems. So it can't be from antibiotics making me worse yet.
He said I needed my sleep fixed because I need to be strong enough to handle the next step, assuming the antibiotics.
I just can't stop crying now!!!! I know I am new here and most of you don't know me, but I figured I would post here.
I am hoping to hear that someone else used to go through bouts of not being able to walk. And I am hoping you can tell me it will stop!!!
the feeling of one step forward and two steps back is something most lymies feel...
Sleep is VERY important in getting better..
....and I think with treatment...antibiotics you will get out of that wheel chair....
It just takes time..
I'm sorry I don't have any real medical advice...I'm sure some one else will come along for that...
I hope you have a beter day....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Conny, I'm a fellow wheelchair Lymie. I spent most of my time in a wheelchair for the first 3 years after being bitten by a tick. I have multiple co-infections and after a long learning curve discovered that babesiosis was the culprit (for me). It made my legs very weak and sore.
The great news is that I am only rarely in the wheelchair now. My legs are acting up again right now because I'm aggressively treating babesiosis, something I've never done before. But, I don't fear too much that I'll be in a wheelchair for good, like I used to fear.
Treatment should help you tremendously. Hang in there! We're rooting for you!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Hi Connie, Stay away from the cortisone! (It's a steroid, right?) Very bad for lyme. I was misdxed with MS and just started lyme IV abx a couple of weeks ago.
I spent five weeks in a chair about a year ago, and still use one on occasion now. You have gotten out before, you will get out again. God bless you, Amy
Posts: 374 | From United States | Registered: Nov 2008
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I stopped them Christmas before last cause it was making me worse. The last shot put me into a wheel chair, it was a spinal block. I screamed for a month because of the pain it caused. That dr told my husband to put me into a nut house. Then told us he couldn't help us anymore, like he ever did.
Conny
Posts: 50 | From Charleston, SC | Registered: Jan 2009
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Honey you're not alone!!! I am in and out of a wheelchair and bedridden much of the time. BUT----please know that I went un-diagnosed for 15 years, I've now had Lyme and Co-infections for 18 so don't let that scare you!!!
What the Dr. told your husband so infuriating, and so darn common!! I bet everything I have that 99% of the people on this forum have been told that at least a few times!!
What you were talking about in your first post is fairly common. It is how I was for at least 13yrs. before being diagnosed. I would have great WEEKS and then be in bed for a week. However this is because I had no treatment and also because I didn't listen to my body!
What I mean by not listening to your body is when you feel yourself getting tired----STOP WHAT YOU'RE DOING!!! Make sure you rest! I used to think, 'well the more I 'push' through the pain, fatigue, the better I will get----wrong, it would put me back in bed everytime. So please dont' over do it!!!
Now that you are starting a good treatment plan, Conny you will get better!!!! Are you seeing Dr. J????? It just sounds like him. If so, you're seeing the best!!!!! That is who I see if I'm right. Would you mind sending me a PM and letting me know????
You will have GOOD days and bad days. I am so sorry as it is part of the beast. But, with the right treatment, supplements, a good diet and get rest---you have a very good chance of beating this!!!!
Did you hear me?????? Conny----you have a very, very good chance of beating this!!!! Most of us have had days where you just can't seem to stop crying and it sucks. That's when you get on this forum and you type your heart out!!!!
There is always people here who understand, will always be there for you and it really does help a lot!!! It's kind of like on-line counsling!!! lol
Please PM me and know that not everyday will be like this; I promise!!
Take care dear and hang in there!
Posts: 351 | From Georgia | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Lyme cycles.
A few good days mixed in with a lot of bad.
I remember prior to diagnosis having some days
When I thought I was better.
Only to awake the next day and feel as bad or worse.
Hang in there.
Get your sleep.
Remember that the cycling of symptoms and problems is part of this disease.
Sending you positive thoughts and prayers.
You've been diagnosed!
To me that is part of the major battle.
Now it is time to go win the war.
We're with you all the way.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Catnippy,
So sorry to hear this. I'm sort of hoping that maybe you just got some aspartame/Nutrasweet/Equal - or MSG - in your food by accident.
That has caused me huge neuro setbacks when I dropped by guard and forgot to look at ingredients of something someone may have brought by for me.
-
Have you ever used colloidal silver? That helped me so much when I was looking at going into a wheelchair a decade ago.
I used Source Naturals brand - worked up to several teaspoons a day - but started very slow.
MAGNESIUM, too, may be very helpful to relieve the crying and nerve pain.
Adrenal support might help, too. You may have just gotten too exhausted. When I get overtired, my legs simply won't work for hours at at time - and that happens a lot. But after resting, they will move again upon command.
Whatever is going on, I hope it turns quickly in your favor. Yes, if you can't walk, I would call the LLMD and say so. Ask if perhaps silver may be a workable option - but also if you have a UTI that is very important to have taken care of ASAP.
Best of luck.
-========
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
It meant so much to have your comments and support. It means a lot to know that the ups and downs are sudden for more people than just me. I always wonder about that. It seems like the way I feel is an hourly thing.
I said something last night when my husband got home and he blew up and screamed at me for 2 hours. That didn't help at all.
Thanks keebler- I try to stay organic and use agave and stevia for any kind of sweets. But my hubby did make ribs with store bought BBQ sauce so you are right I had MSG. I didn't know to avoid it so I will be more diligent about that now.
Snailhead- where did you come up with that name? ...lol
Geneal - It is good to know what I am fighting against. My big fear now is the reaction I will get when he starts me on the antibiotics. I figure if he is preparing me for 6 weeks it must be that he is expecting it to be bad.
I tried to explain it to my husband last night. That knowing I am going to walk through fire, even though I know there is cool water once I get through it. It does not make that fire any less scary or less painful.
LymeLady- thank for your post too. How much longer do you have till your treatment is going to potentially end? Do you expect days in a wheelchair after your treatment ends?
M-tree- thanks for your support!!
I really needed to hear all of your comments yesterday and I am grateful for this forum.
Thanks, Conny
Posts: 50 | From Charleston, SC | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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So, then, here's a call to anyone with a good (and safe) - BBQ sauce recipe to post in Off Topic for others who may get the urge for BBQ chicken breasts or such.
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Conny,
I hope you are feeling better.
I don't usually get into personal topics - neither my hands nor my energy can do that - but something you said struck a chord.
You said that you: " . . .said something last night when my husband got home and he blew up and screamed at me for 2 hours. . . ."
-
If you are preparing to start treatment for lyme it might be helpful to plan some time for your husband and yourself to sit down with someone who has been through all this.
If, by chance you have a counselor in the area who is LL that would be best.
Without needing details, if you are the target of yelling, that is simply not an atmosphere that will be condusive to healing. Even if an argument is two-sided, for 2 hours - there may be some help in going to a counselor to learn how to argue.
Really. You can both learn how to disagree in constructive and respective terms. Short bursts of anger are human, of course. But if something triggers a 2 hour match, I hope you both can iron that out so that a healthy environment becomes the norm.
If your husband is not interested in going to a professional to learn how to sort out your communication styles then you might consider still seeking help for someone to talk to about all this - and, again, a LL counselor or therapist would be best.
You might ask at your local support group for a name - or see if your LLMD has names for you.
Preparing in this manner is no less important than adjusting diet, etc. And all parties of a family are dealing with the illness, so it's so wonderful when a family can come together for the best outcome.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I plan to treat babesiosis for at least five months - till June. If I still have even one symptom I will continue. I want this disease completely gone and out of my body!
I still expect to have some wheelchair days only because I've not been able to completely avoid the wheelchair for such a long time now. I believe this is my new "normal" - which I thought I had accepted until I learned my niece took her two sons to Disney World by herself this week and I thought, "I could never take my two boys and do that."
I felt jealous and miserable about her abilities. Kind of pathetic but true. I don't think I'll ever be able to walk long distances again. I hope I'm wrong, though!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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mtree
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