posted
I have been sick about 2 years now. I just saw a new doctor who is running some further tests as he thinks I may have mold and antibiotics will just make that worse.
Over the past few months I have had random bouts of my right leg feeling severely heavy. It also feels stiff, legs cramp (especially in calves), lots of twitching too.
It seems weird to me it is only one sided. My joint pain seems worse on the right side, and my right hand cramps up and the joints in it as well as my toe joints right side are always bad.
I also have lots of tingling, random stabbing etc. I have been terrified of ALS. I was trying to find different lyme posts on heaviness starting in one leg and all I could really find was posts on ALS.
I know worrying won't change anything, but I have read the link between lyme and ALS. It is so hard not to stress and worry Posts: 53 | From Texas | Registered: Apr 2015
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Topic: MAGNESIUM - Informational Links set. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, lyme can cause what you describe and, yes, (as LymeToo says) so very often lyme is the underlying reason for ALS (as well as other tick borne or other chronic stealth infections such as Cpn).
And, what you describe also sounds like STATIN Rx reaction that affect so many of those taking these dangerous drugs. Over 42 % of patients have reported serious issues but doctors generally ignore them. Finally, they are listening. In the news this week. I think many more just don't report it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Aren't misdiagnosis of something vs cause of something different? I know some say it's misdiagnosed but is actually Lyme, others say it causes ALS, or triggers it, but that they are two different illnesses.
I'm not actually on any meds right now.
Posts: 53 | From Texas | Registered: Apr 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Chinese cats claw helped with the twitching, its is something getting at the nerves...do you have atrophy?...if not then nerves are still intact ...more lipids,fats will help protect the mylien sheith .maybe topical magnesium
posted
Not any atrophy that I've noticed. Just a very heavy leg, twitching and cramps. When I googled it ALS comes up
Posts: 53 | From Texas | Registered: Apr 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Of course, ALS will come up. Google has not been to ANY ILADS conferences. Google has not completed - or even shown up for one day of ILADS Physician Training Program.
Nor have those behind the ASL links that Google chooses.
If lyme CAUSES it, treat the lyme and "it" often then goes away.
This is where a good experienced ILADS educated LLMD or LL ND is so important to figure it all out, considering all the possible stealth infections that could be connected. And, if there are other considerations, they can sort those out as well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- In the film UNDER OUR SKIN, one of those featured was nearly paralyzed and so close to the end. His diagnosis was "ALS" -- turns out he had lyme and babesia -- and got proper treatment and recovered nearly fully.
Of course, there can be damage left but that is why it's so vital to not accept the bleeping labels that Google - or deficient doctors - want to slap on.
If you have lyme and if you have "ALS" symptoms, you are on your way to the answer. But you need a real expert. If you search at Google, fine. But find the sites / experts who are ILADS educated and know about stealth infections.
And, by the way, all the symptoms you describe are actually lyme symptoms, too, as well as symptoms of other TBDs.
In a way, this is very good because there is hope with the right approach, the outlook can be good. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Keebler: - Of course, ALS will come up. Google has not been to ANY ILADS conferences. Google has not completed - or even shown up for one day of ILADS Physician Training Program.
Nor have those behind the ASL links that Google chooses.
- Good point!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hang on, there's not a strong link between Lyme and ALS.
There's a link as Keebler said in that sometimes Lyme is misdiagnosed as ALS.
The ALS people are *very* aware of every link and possibility and they follow them pretty seriously. What they found was that some people ( not a significant number) who had ALS were also Lyme positive.
ALS has stronger links to formaldehyde than it does to Lyme.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
BTW, one of the reasons that the volunteer ALS research army followed up on this possibility was due to this e-pamphlet put out by this lady named Sarah Vaughter who claimed that ALS was Lyme. They did a whole review of her claims and matched them against everything they knew about it and came up with zero evidence that this lady and her husband knew what they were talking about.
Here is what they had to say about this e-pamphlet:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For those who have lyme, it is important to talk to your LLMD about this.
There have most certainly been some cases of misdiagnosed ALS that turned out to be lyme, other tick borne or other chronic stealth infection (there are many to consider) as the base.
And, for anyone with lyme or other chronic infection, chemical exposure should also always be considered.
There can be a genetic component to ALS but, here, we are talking about those who have been diagnosed with lyme, etc. So, yes, lyme can mimic ALS.
Is "ALS" diagnosis always lyme? No. No one here is saying that.
Can "ALS" diagnosis be lyme as its base? Yes.
Can it be other infections? Yes.
Can treatment of such symptoms with proper anti-infective therapy when there is a diagnosed infection result in recovery?
Yes. It can. But it may not always, or fully. There are many factors.
"Proper" treatment would be in the line of ILADS, not IDSA, though. And proper treatment would absolutely include liver / kidney / nutrient support methods as well. Absolutely.
Can ALS be that - and not lyme or other infection? Yes. Genetics mentioned earlier.
However, for those with lyme / other chronic stealth infections:
Talk to your LLMD. They are the experts in your treatment considerations.
For those who may not be sure whether they have lyme, other TBDs or other stealth infections, get assessed by an ILADS educated LLMD.
If consulting other neurologists, consider the fact that most are not at all educated regarding lyme, tick borne disease or other chronic stealth infections.
If your LLMD thinks you would need to consult a neurologist, the LLMD would know the best to consider in your area. They should at least know enough about lyme, etc. to be able to distinguish when it is / is not a factor.
GLUTEN. Also to be considered as a factor for some. Even for some non-celiacs, and even for some with relatively few digestive issues,
gluten can cause profound damage to the brain and neurological systems. Not for everyone, obviously, yet there is a growing body of work that shows it certainly can for some. -
[ 04-08-2016, 04:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
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