posted
I've had trouble with my neck about 5 major times in the last 30 years since a car accident, usually during very stressful situations.
I was recently dx with ALS/Lyme and am on ceftriaxone. My energy is better but my neck has gotten worse and I can barely hold up my head.
I'm also having hyperextension in a knee that had athroscopic surgery 15 years ago.
Could the Lyme be attacking an area of my spine or knee that was previously damaged?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Could be, but since you're treating lyme, it could be a herx reaction, intensifying fatigue and mitochondrial weakness.
Borrelia does like injured tissue, though, so be sure LLMD also plans on addressing the cyst form of lyme.
I've had times when I could not lift my head and when I relaxed about it, supported my head and neck, it usually got better at least for some time each day.
Still, there are some hours each day when I can't move some limbs and aggressive rest is the only solution during those times.
Ask your LLMD about this, though. My guess is that it will get better with treatment. Along the way, if you need to rest your head, listen to your body. It can get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
At my worst I was in the hospital and couldn't raise my head either, and had those times that I couldn't move my limbs. I hadn't been diagnosed at the time, so I think it's probably a herx and you just hadn't quite reached that point yet, but I think it shows how sick you were before you started treatment. Lyme definitely attacks the joints so that sounds par for the course.
FWIW, I got worse in some ways after I started treatment also.
I hope you're treating Babesia.
Posts: 975 | From California | Registered: Apr 2007
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posted
I have the neck/head thing too. Usually when I'm on antibiotics, my neck feels too weak to hold up my head and my head will want to fall to the side...always the left side. It comes and goes.
Posts: 618 | From NC | Registered: Oct 2009
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posted
i feel ur pain i too have probable als/lyme 6 months now and getting weaker i just wish i knew either way
Posts: 61 | From limbo | Registered: Nov 2009
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posted
Tamboski, are you on antibiotics? I sure hope you are being treated with them. Are you seeing a LLMD that knows how to connect ALS and Lyme?
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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There are a number of treatments for Babesia. Some are very expensive and some are not so. As with LD, not every protocol works for everyone. It can bbe very difficult to get rid of and has many of the same symptoms as LD. You could do a search of old threads here for it, or you could also see Dr. Burracano's protocol under the files section of this site.
I just feel strongly that one should treat for Babesia if they're not. I tested negative for Babs in 2005 and didn't get treatment for it for over 3 years. When I just couldn't get well, we started treating with some herbs then other meds just based on symptoms.
After a year of treatment for Babs, I finally tested positive. I'm still treating now and am a lot better, but when you think that the Babs went untreated for over 3 years, i.e., it grew unchecked for over 3 years, then I think I have so much of it in me that it's going to take a long time to get rid of.
jwall, I don't know for sure that it is a Babesia symptom. It very well may not be. That symptom disappeared a long time ago for me. But many of Babs' symptoms seem to overlap w/LD.
Posts: 975 | From California | Registered: Apr 2007
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posted
Lyme loves to attack the weakest parts of our bodies. I had a terrible "neck herx" when I first started treatment. (I've had two bad whiplashes.)
I feel for you and sure hope it lets up soon!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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quote:Originally posted by 2young2die: I've had trouble with my neck about 5 major times in the last 30 years since a car accident, usually during very stressful situations.
I was recently dx with ALS/Lyme and am on ceftriaxone. My energy is better but my neck has gotten worse and I can barely hold up my head.
I'm also having hyperextension in a knee that had athroscopic surgery 15 years ago.
Could the Lyme be attacking an area of my spine or knee that was previously damaged?
Do you have daily headaches?
Posts: 20 | From Washington, DC | Registered: Jun 2003
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quote:Originally posted by jwall: I have daily headaches and the weak neck/head comes and goes.
I think it is a strong possibility your HAs are caused by a cerebrospinal fluid (CSF) leak. Some force happened in that accident that could have punctured your dura membrane. When there is a tear in the dura membrane, the CSF leaks out. When the CSF leaks out, then there is no cushion between your brain and your skull. One leaker defines it as "My brain is banging against my skull." He's correct. Do you remember when the HAs first started, did lying down help them subside?
P.S. There are fewer neurosurgeons who will correctly evaluate you for a CSF leak than there are LLMDs. It's documented as being commonly misdiagnosed. The good news is that sometime they can be located and fixed. Mine isn't.
Posts: 20 | From Washington, DC | Registered: Jun 2003
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