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Old 02-23-2006, 11:08 PM #16 (permalink)
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Hi Al. I couldn't help but notice that you have been a member since 2004.
Have you been misdiagnosed with ALS, Lyme, andf if you dont mind me askin' "What's yur 20"?
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Old 02-23-2006, 11:48 PM #17 (permalink)
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Hi Theresa,
It is a self-trial basically - what we are doing. There are several persons on the Lyme forum, who have been diagnosed with ALS and are also positive for Lyme. One of them had negative results from Igenex, but is proceeding with IV Rocephin, anbx for advanced Lyme stage (which incidentally is also the subject of an ALS clinical trial).

The other debate is, that the main-stream Lyme tests give over 60% false negatives, while Igenex has about 70% positive rate... Take your pick. There are plenty of people who argue each side.

It seems so sad, that even though this debate/controversy has been around for quite a while - at the very least 2-4 years - no data has been collected from these "cross-over" cases in any sensible manner. Or, is it just now, with the popularization of the Internet, that people can exchange their own experiments? I don't know. Time will tell. It is with great apprehension that we have decided to take that route, because ALS and toxins in the body can spell faster progression, for sure. And abx are super toxins. My nightmare is that we may be dealing with both.

That is why I keep asking for anyone with any knowledge of reactions, results, anything dealing with the ALS/Lyme/antibiotics situation to please, share.
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Old 02-24-2006, 01:21 AM #18 (permalink)
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Hi Lilbro. I've been diagnosed with ALS by 3 Neurologists at 3 top notch hospitals in Toronto and area. Tested negative for Lyme. Have another Neuro that thought I might have MNN. Had all the tests MRI, Lumbar puccture, CT scan,buckets of blood and I am getting weaker, losing the use of my hands ,can't walk far and my breathing is crap. Used Bipap since Jan. 05. I'm about 45 min Northwest of Toronto.
Al.
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Old 02-24-2006, 12:57 PM #19 (permalink)
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Hi Al.
Thanks for replying. I have so many questions. What is MNN? I tried a search but came up with nothing medically related..?
My brother Darren is taking anbx just after his spc tap (is this test the same as the lumbar puncture that Upila mentioned?) due to his not feeling well at all. Before the tap he was feeling no pain whatsoever. I am curious to know if there's a possiblility that the docs (worldwide) are just experimenting with all of us. I will refrain from voicing; or rather punching of keys, my opinion on that issue!

PS Should I let my brother in on this Forum? I don't know if it is too soon to subject him to the reality of all of this. He's my baby bro and me the only (overprotective) sister of 43 years, ha! Go figure! He is a young 36 yrs. Works in aerospace since high school, no military, father in Korean War, and several uncles in War.
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Old 02-24-2006, 01:21 PM #20 (permalink)
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Hi LilBro,

Spinal Tap and Lumbar procedure are one and the same. (My father had that, too, before being diagn w/ALS. His spinal tap was clear, i.e. did not indicate some other involvement.)

My question in re your brother:

If they diagnosed him with ALS, what is the antibiotic for? Was it prescribed by the ALS doctor? Does he have an infection of any kind?

It would be helpful to find out what the 2 drugs he is on are.
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Old 02-24-2006, 01:47 PM #21 (permalink)
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Hi Upila
I will have to get back with you tonite (Calif. time) as I have to talk to my brother first. thanks so much. this forum is awesome..Raschelle
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Old 02-24-2006, 03:42 PM #22 (permalink)
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Hi LilBro. Don't worry about being patient. We don't get crabby like some of the other sites. We are all in this together and are here to learn. MNN is Multi Focal Motor Neuropathy. It's a little more obscure than ALS but is a motor neuron disease as well. They think it is an auto immune disorder. You can find about it and some of the other fun disorders at this website. It is quite technical but is the most thorough one I have found.
http://www.neuro.wustl.edu/neuromuscular/index.html
Take a look. Al.
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Old 02-24-2006, 08:23 PM #23 (permalink)
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Upila, hello again. Below is the email that my Bro sent me. Im hoping that soon he will be conversing with all of you for help in understanding all this crap! He still works full time and then some in management along with the high stress on top of that (at work and the homefront). Im sure that doesn't help his health. His doctor (who specializes in neurology/disease)hasn't suggested any kind of healthy diet plan. Is this right, or is this just "Alternative Medicine"?

Hello sis,

I had a spinal mylogram performed on me. Not sure if this is the same as
spinal tap. The drug I'm on now is called Rilutek. This drug is supposed
to increase my life by 2 - 3 Months. The other trial drug I start tomorrow
and I will give you the name then

Last edited by David : 03-08-2006 at 04:54 PM
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Old 02-24-2006, 08:59 PM #24 (permalink)
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Hi,
Your brother is on the only drug which has been so far formally approved for ALS. If you look back under that subject - there were numerous posts regarding Rilutek.

Most likely, many will share my opinion, that establishing a good diet IS EXTREMELY IMPORTANT. Yes, it's normal (irony!) for the neuro not to suggest anything in particular - happened to us as well.

Again, if you look back at our previous posts, we have been discussing that in length. The very basic idea is to introduce as much as possible natural, toxin-free foods, drink a lot of water to flush out the accumulated toxins in the body, AVOID at all costs foods containing artificial "stuff," MSG, flavours and a whole lot of other ingredients meant to help long shelf life, preservatives, SUGAR, especially processed white sugar, ALL diet sweeteners, SODAS, red meat, starches should be minimized and so on. Make your juices, instead of buying them. If it comes in a can, box or a bottle, chances are - it's not good for you. Organic produce is better in most instances. Many follow supplement regiments, most of which are self-directed, after we read and read and read, and then little by little we establish a regiment which seems to be OK, or so we percieve it to be.

By doing the above, the body should be made freer of toxins, the diet and the supplements should introduce greater flow of antioxidants which in turn are supposed to help chase the free radicals and thus slower the rate at which the neurons are damaged.

This is the general idea. The more you read, the more you will fine-tune what is best applicable to your brother.
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Old 03-29-2006, 08:52 AM #25 (permalink)
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Upila, I am knew to this forum and still don't have a diagnosis after 2 years of symptoms but I can tell you twice I went on cefuroxime a member of the ceftin family and all my symptoms went away. I know he would need large doses of it if his symptoms are far along.

whitey
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Old 03-29-2006, 11:39 AM #26 (permalink)
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Hi,

Thanks for your post:

Did you take Ceftin for Lyme? Are you also diagnosed with ALS?

What symptoms did the Ceftin get rid of while you were on it?

And, lastly - how far into either Lyme or ALS are you?

We are afraid of high dose abx - does not seem that the damage done during his abx taking will be fully reversed.
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Old 03-29-2006, 11:47 PM #27 (permalink)
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Upila, I was put on ceftin because of a sinus infection. It cleared my sinuses but also took away my stiff neck, cold, numb, and tingly feet. Twice ceftin cleared those symptoms but they returned after my antibiotics were gone. I don't have a diagnosis yet. My problems started jan. 2004. The last 3 months my symptoms have gotten worse with muscle wasting, fasiculations, cramping in hands and feet, and stiff thighs. Doctor said lyme disease test is negative but I believe I have lyme and now it has developed into als. I have an appointment in a neuromuscular clinic next month. I believe the only reason I am still mobile is because of the glyconutrients I am taking and the diet I am on which consists of water and green tea to drink. I eat chicken, fish, lots of green vegetables, and some berries. No sugar, rice, potatoes.
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Old 05-06-2006, 11:04 AM #28 (permalink)
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Hi Upila,

Just wanted to check in to see how you and your dad are doing.

How is the treatment fo lyme disease going?

Hope all is well.

Richard
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Old 05-09-2006, 04:03 PM #29 (permalink)
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Hi Richard,
Thanks for thinking of us.
It has been a hard month and we are just about out of our minds.
Father has been up and down, with days of horrific weakness followed by back to "normal" to weakness again. His speech has deteriroated just like that, then after he has a good meal (especially smoked/oily salmon & rich dessert) his speech clears completely. He is suddenly scared - the symptoms are erratic, for couple of days he barely walked. He stoped the Samento and the silver, just to see if this was a herx or what. Each time he stoped, he had these ups and downs, so now we are completely at a loss. The food/speech connection is so obvious, that I now think he is hypoglacemic and will call to see what doctor to talk to (we have none and in our immediate area they are so bad that should be behind bars). He will be seeing another doctor, just to see what he has to say and we have to decide what to do. I have to say, it is very discouraging at this moment. And it happened just out of no where.

Which brings a question for anyone on the forum who can reply from experience:

Can als symptoms of deterioration be experienced LITERALLY by the hour/day?

I have to sort this out. It has been so scary and so difficult, I could not bring myself to post...
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Old 05-09-2006, 09:05 PM #30 (permalink)
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Hi Upila,
I am bummed to hear that your dad is not improving. I have been wondering how the two of you have been. I check the Lyme forum every once in a while to see if you have posted and to see how your dad is doing. Dad's symptoms never seemed to change by the hour or minute, but things did seem to progress differently day by day. Some days it would seem like he was speaking really well, and then other days his speech was horrible. When his breathing began to decline, it was definately noticable each day. I think fear plays in when they see themselves getting worse. I think dad has been scared to see how far this disease is going to go before he passes away. I also think that he is afraid to leave us behind. I don't think he is scared to die, but scared knowing that he will be leaving my mom a widow. It is so tough to think about things like that. I hope that the whole Lyme thing works out more in your favor. I would wish Lyme disease on anyone before ALS. Good luck and do continue to post here every once in a while. I would like to keep you and your dad in my prayers and know how you are both doing.
Dana
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