posted
I just read about a Hollywood producer who passed away on Monday and guess what they gave as the cause of death? Respiratory failure due to Lou Gehrig's disease and Lyme Disease! Bless him...I hope he has peache now.
I don't know if that means that the Lyme caused his ALS or if he happened to get both. I still have not received a good explanation of whether ALS can be caused by Lyme. Anyway, that was pretty sobering to see. I had hope until I saw that. Posts: 331 | From virginia | Registered: Nov 2005
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luvs2ride
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posted
Do you have ALS?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I have thought I did in the past. I have gone to numerous neurologists with muscle weakness, fatigue, twitching and jerking and they cannot figure out the cause.
My original symptoms started almost a year ago. If I have ALS, it is very slow in progression I guess.
Posts: 331 | From virginia | Registered: Nov 2005
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Foggy
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luvs2ride
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posted
Think positive, vachick!
It is a very scary disease because it provides opportunity for so many other illnesses.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Marnie
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posted
Malic acid chelates (removes) Al.
That makes Mg malate the supp. of choice. Small doses often...divide the RDA.
It is used for fibromyl. in higher doses.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Vachick, are you on abx? If you are, stay positive. ALS may have been a "misdiagnosis". And even though it includes Lyme disease, it's hard to know what kind of treatment he's been getting and who's been treating him.
I believe in attacking this any way I can, and that includes abx, herbs, and alternative forms of therapy.
I plan to beat it.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Yes, I am on abx (omnicef). I haven't been able to tolerate Biaxin or Ketek. I am also on Co Q10, acetyl-L-Carnitine, ALA, multivitamin, B12, Quercitin and milk thistle. I am starting Vit E soon. I do massage and acupuncture, too.
I am having a hard time figuring out the right combination of vitamins/supplements and what interferes with abx. It is all so confusing.
I am very concerned about taking abx long term and deeveloping abx resistance. I don't know how long to give this abx therapy to determine whether it is working or whether I should try the natural route for a while.
Posts: 331 | From virginia | Registered: Nov 2005
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quote:Originally posted by vachick: I am very concerned about taking abx long term and deeveloping abx resistance. I don't know how long to give this abx therapy to determine whether it is working or whether I should try the natural route for a while.
Hi Vachick,
Me too!! I think that there is no easy answer to this for any of us.
What gives me a little encouragement (since there is so much controversy, little support, and
conflicting evidence, and few studies, and clinically such variance in response to antibiotic treatment)and this may sound naive,
but it is that people like Amy Tan and Daryl Hall and Rebecca Wells are out there speaking.
They have the monetary resources to research, and at least Amy Tan and Daryl Hall are doing the long term antibiotics.
Of course, this does not mean it is the accurate thing to do, but gives support to the avenue.
As well, the specialists, and it doesn't help that they are under such scrutiny and attack -- believe in the long term antibiotic therapy, but at the same time, do not guarantee its success.
One of the first things I signed was an awareness that the long term antibiotic therapy is not gauranteed to work. But it at least offers some hope. For a little while.
I have done antibiotics just over six months and just finished a week off of them (mepron/zith) but have been doing wormwood and a couple other things.
It is very sobering to see people dying of complications from a disease others are sure does not exist.
God Bless Scott Brazil, it is a sad thing that just over the last year I have learned more have died due to complications of lyme.
My intestines could not handle any more antibiotics for the time being and I plan to continue my break for awhile longer, listening closely to the symptoms. In some ways I feel worse on antibiotics anyway, even though they have help lift a covering of total madness!
I have a good indication that I will need to go back on the antibiotics but I firmly believe in the wisdom of my own body telling me it is not only okay but necessary to take a break from them...and this is for so many reasons.
What I have learned most is that I must listen to my self and be my best advocate even over my lyme specialist and other medical consultants, whom I trust very much and need to help guide me, but in
the final analysis, it is me who has been living with this disease undiagnosed for over 30 years (I am 40 now).
I was able to manage this thing as it came and went in spurts or flares, all the while a slow
underlying deterioration occuring that was barely noticable to my own self.
It was just over the last few years, it started to get the better of me! I plan to continue to get the better of me back as I continue the trial and error of treating something so mysterious and stealthy!
So even though I often forget my symptoms on a daily basis!! Or have for extende dperiods of time, outside myself... I know my own experience.
I do not want to be a pessimist, but do want to be realistic and after having lived with so much devastation to my bodymind for so long, I simply cannot even fathom that there is any probability that a good portion of this is not recoverable by antibiotics, but is simply the damage leftover in the bacteria and parasitic wake.
And even the specialists agree that antibiotics alone are certainly not enough.
I try not to worry about any continued progression of the disease. I have lots of trouble speaking full sentences anymore without losing grip of the simplest of words.
But as the others have said....we must have hope!
And realize that what may seem like weakness to us, is really a great strength!
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