posted
The answer is no -- an EMG only shows nerve damage not the cause.
In fact many lymies have nerve damage which is less severe and will not show on an EMG. There is a new test that can show that nerve damage, but it is very expensive. I think it is only available at NYU. One of the neuros who treats with IV IgG developed it.
Hubby did not have the $'s to have that test done as at the time it was not covered by insurance (late 2007) -- not sure about current insurance coverage. May still be considered investigational and experimental.
Also -- it is my opinion that bartonella could also cause nerve damage comparable to lyme. Not sure if there are any pubmed articles to support that. But it has been proven to cause MS type symptoms and I think even the brain lesions.
The problem with the ALS presentation is that sometimes aggressive treatment can actually speed up the nerve damage rather than slow it down.
If I was in your shoes I would do a couple of things -- first get a bloodsmear from Clongen to make sure there is not some other bacteria such as bartonella involved. I would also be looking for a 2nd opinion from a LLMD with experience treating ALS presentations -- you need someone with very specialized knowledge.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Lyme can produce wasting like ALS, and no one knows what causes ALS. So, the idea that you have ALS instead of lyme may not be the right way to look at it.
Bea is right about aggressive treatment sometimes making this presentation worse. Did you watch Dr. Martz talk on the streaming ILADS conference? He had a whole group of these people, including me.
In my case, it is a catch 22: don't treat aggressively and the lyme bacteria create an inflammatory environment that kills neurons and therefore causes muscle wasting and other things. Kill the bacteria and creating herxing which is inflammatory and does the same thing.
So, you really need to know whether the herxing makes you worse faster. I could tell.
Unfortunately, people like me have no alternative except to treat with low doses, which does not stop the wasting, just holds down the other symptoms. But we don't know if that is your situation.
Seems to me like I suggested that you read the chapter about Dr. Martz treatments in Pam Weintraub's book. Did you do that? It might help you understand the situation. He did well on aggressive lyme treatment for an ALS presentation, but as I said, not everyone does.
It is a group of lyme patients that needs research to help figure it out.
I know lyme is causing this, in my case, and the EMG and nerve conduction testing was abnormal. All those tests do is measure damage. They don't diagnose.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Bea is right about aggressive treatment sometimes making this presentation worse. Did you watch Dr. Martz talk on the streaming ILADS conference?" (end quote)
Now, I was not able to see that presentation but I remember that the LL ND whom I consulted a couple times (two years ago) with the last of my money had precepted with Dr. M. and follows his thinking that A HERX IS NOT GOOD FOR THE PATIENT and there is no need for it. She manages a dose the patient can handle with supplement to support.
Remember: Inflammation can be MANAGED. A herx can be MANAGED - Rx adjustment to optimum dose for the patient, and then mainly with liver support. Endocrine and cardiac support also really matter. Nerve support is essential. Anti-oxidants.
I would never do any antibiotic - even for one day - without serious and deliberate support methods. SUPPLEMENTS, diet, massage, warm bath, Tai Chi, rest, laughter, singing, listening to music, art appreciation. It all supports my body. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm starting PT soon, I hope that will strengthen my arms and neck. I haven't had an EMG done for 6 months and I know my llmd wants me to have another to prove the ceftriaxone is working.
I hope the PT won't do more damage to my nerves.
I don't really herx anymore. Sometimes I cry but it's when I'm considering the ALS future.
-------------------- 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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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I remember when my neuro was talking about possible ALS for me. I cried a lot of course. I really do think your problems stem from co-infections. Like I said in your other post... see a Lyme friendly neuro, or just another neuro and don't mention ALS... so that you can keep on your treatment with your LLMD. He has to cover his butt, ya know? *hugs*
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
2young, look at it like this. Lyme creates toxins, not unlike botox. Both the botox and the lyme toxin block the communication between nerve endings, relaxing the muscle.
Both are eventually removed from the body by the body. That is one of the problems with botox, you have to have the shot yearly just to maintain the effect you want.
Lyme present in your body supplies toxin daily causing progressive blockage as the toxins match up with nerve cell endings.
Kill the lyme and stop the supply of toxins.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
I'm trying to stay positive but losing the ability to do things sends me into despair.
I feel like I'm losing a little more of myself each day.
If you have muscle wasting and an abnormal EMG, why don't you think you have ALS? The ALS chatrooms are filled with people that call themselves PALS who also tested positive for lyme.
-------------------- 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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posted
I don't know what else to tell you. A tick did bite me, I had multiple positive tests for babesia. This wasting is caused by lyme/inflammation/autoimmunity.
Whether it is wasting caused by lyme or something else, it is still wasting. If it is something else causing it, then maybe you are out of luck. If it is lyme, you have a chance. Those people in the chatrooms don't understand that because the "ALS" did not get cured by antibiotics, doesn't mean it isn't lyme causation. It is one of the more difficult presentations of lyme to treat, and we do not have all the answers we need.
My suggestion is to stop obsessing over ALS, and get on with the treatment. Paralysis of decision making by fear will not improve your situation.
Posts: 8430 | From Not available | Registered: Oct 2000
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I agree with Lou. Fear of ALS made me SOOO much worse not just mentally but physically! Concentrate on getting rid of Lyme and co-infections. Realize that you have a long road ahead of you and stop obsessing about the ALS and constant muscle testing for wasting etc. You've already said that your legs got so much better with abx. In true ALS..that simply doesn't happen.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Methyl B-12 shots to help protect the myelin sheath around your nerves? That's what my LLMD says about it (plus VERY good for all things CNS for me, including emotional regulator). Does take about 2.5-3 months to "kick in". Just a thought.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
I have found it impossible to function if I believe I have ALS. I've gotten thru the past 6 months concentrating on lyme treatment but now my llmd wants me to go to a neuro to "cover his own butt" as he put it.
I understand llmds have to be careful for legal reasons but the thought of having another neuro tell me I have ALS sends me into a panic.
I don't feel strong enough to look for another llmd right now. I know I will in the future because my doctor isn't treating coinfections at all.
-------------------- 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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posted
Well, sweetie, you are in a fix right now and have been brave up to this point. So, maybe cool it for a while until your courage comes back. It will. We are rooting for you.
Posts: 8430 | From Not available | Registered: Oct 2000
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