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Dear lamotta,

I just love to read your posts because if nothing else they do make you pause and think about what is going on with your body. I can remember the first time you responded to one of my threads and I couldn't believe that you told me that if the Rocephin IV didn't work after 9 weeks then I need to look elsewhere. Whoa! It kind of blew me away to be honest with you.

I had finally gotten the good news it wasn't MS and I was on my way. I know the IV only started to get rid of minor symptoms but it was a start. I also am aware that many many diseases can have the same symptoms. There were a few that I found with lyme that others didn't have. And then of course there was the one band, not enough for CDC but why did it even show up. I still believe I am fighting lyme but have to be realistic about my approach.

I'm sure that you have seen the posts I have put on this site about colloidal silver and possibility of taking Samento and don't know if you approve or disapprove of this approach. I knew long before I went to the homeopathic that the Doxy wasn't working and of course he confirmed it. It didn't take a brain scientist to decide to stop this med.

I may be trying to treat something that isn't there but if nothing else the homeopathic did confirm a bacterial infection because of the way the magnets he uses responded to the silver. He doesn't like traditonal meds but agrees there are times when necessary. Unfortunately you don't get the same response from an MD about natural stuff. I think if that would happen there would be a lot less suffering. You cannot tell me that one is any better than the other for everything you could contract. I myself may never respond to Samento but it is no worse than all the other stuff I have put in this tired old body.

I agree that you have to be sensible about labelling everything lyme. When they told me MS I was blown away but the more I researched I just couldn't believe it. Too many things didn't fit. Of course now I know it's not MS. Is it lyme? That I don't know either but for right now it is a good possibility. I would have even considered CFS although no one ever said that to me but my symptoms were so gradual and when I look back on it now really not bad at all. Of course back then the immune system was working okay prior to the steroids. Not 100% because of stress but working better than post steroids. You know that I feel my downward spiral started with those stinking steroids. I know they have there place but definitely not with lyme sufferers. I may someday get some validation on this when the true extent of lyme is revealed but then again maybe not.

I agree with you that there are doctors out there who just want to make a buck. I truly don't think my neuro who was saying MS was an evil person but this was his expertise and I fit the "box". Unfortunately that isn't a diagnosis when so many other things say no. He did even throw his hands up in the air on my last visit after seeing a new brain and optic nerve MRI and say he just wasn't sure anymore. This was after sending me home to decide on what MS med I wanted to go on when the solu-medrol was done and even before he had seen the MRI. But he and the MS specialist were wanting to put me on MS medicine. Thank God I used a little sense there.
I even wondered if another name on the MS list would bring in more money for research of this disease but don't really want to think they would do that to a patient. I even worry that there are LLMDs out there who are just hanging out that shingle to take advantage of peope crying for help. As with most doctors I don't think this is true on the whole but there are a few bad apples in every barrel.

I am sorry for rambling and hope you don't mind. I was enjoying your discourse with deejavu but was beginning to think I would have to play both of your mothers and tell you to take the gloves off. Just joking. I consider you both highly intelligent with opposite opinions that are based on fact and
what you are both going through. I would like your honest opinion on the silver and Samento. I know you are a pharmacist but I also think you are open to alternative measures too. Some of the testimonials on Samento are pretty encouraging. Of course I'm also sure they won't print any bad stuff either.

I hope you are doing well in this weather. It is nice here in Texas today and I went out for about an hour today and made a dent in my flower beds. It felt good and I didn't even stumble on the way back inside. I still say I wish you could meet my daughter.

Dear lamotta,

My reason for stating it was not MS was because the first MRI that was done was a cervical and there was some shadowy mark around the C6 so then a brain MRI was done with nothing showing. My husband loves it when I say that! :D I told the doctors I had been hit on the back of the neck just about in that spot from a very large branch that fell from a tree while we were looking for property to build a retirement home about 6 weeks before the problems started. This was blown off but could have been nothing more than inflammation from the hit. And of course we had stayed in a cabin in Virginia and then stayed in one in Bar Harbor, Maine and did a lot of hiking there too.

My first symptom was the left side of my head went numb in the back, the next day the left side of my neck went numb, the next day it was my left arm and hand. I went to the emergency room and they checked for a stroke. Of course after three days I think I would have been in trouble if it had been a stroke.

I was sent to a Neuro surgeon who requested the cervical one be redone in 3 months. It was, and the mark was less than pencil point size and in his wisdom he said it must be MS because tumors don't shrink. Pay at the front desk and thanks! :D

I also had a spinal done that was perfectly clear and normal. Then an EMG to check for carpal - normal. Then 2 days of testing for an evoke potential. This is a screening tool measuring brain reaction to lots of different stimulus to see if it takes longer to go around a lesion that the MRI might not be picking up. Lots of visual, hearing, and shocking of extremities. Thank goodness I had a great test technician. Again everything was normal.

I went for 18 months with absolutely nothing changing, every symptom from day one was with me 24/7 the whole time but nothing got worse. My hands were stiff and tingly, the left side of my neck, left side of the back of my head were stiff and numb, my left leg was weak. With what is going on now I look back and say it was nothing!

My family doctor thought it might be a virus so he asked me to try valtrex. At first I wasn't to sure but he said nothing would happen except maybe get rid of what was going on. I didn't even take Tylenol for a headache. I know you are a pharamcist but I just don't like taking medicine. Sorry! After 2 pills I couldn't see out of my left eye. I had never had a problem with vision to this point.

I went to an opthamologist who did a visual screening and it was horrible (the results). My sister works for an opthamologist in Tennessee and I sent her the results. Her doctor said it didn't make sense because my vision was way to good for the screening to be so bad. It just didn't make sense at all.

I was then sent back to the neurologist and he was sure now it was MS and set me up for the dreaded solu-medrol I speak so fondly of. I was supposed to get 5 days at 1,000mg per day but the night after the 4th day my heart went crazy and I landed in the ER. Everybody disputed the fact that it might be a reaction to the valtrex except the ER doctor and my family doctor who gave it to me. Of course since then I found an article that on rare occasions this can create vision problems. I guess that would be me!

During the IV steroid treatment I had to have another brain and an optic nerve MRI done and the neuro told me to go home and pick out which MS med I was going to go on. This before he even saw the results. Both MRI's came back fine. Now the neuro is saying he doesn't know what it is. I do give him credit for that.

Of course the MS specialist is saying the vision problem was an MS attack when at the last visit he told me no MS. Crazy!!! By the way the nurse giving me the solu-medrol was really questioning why I wasn't responding in a positive way to the steroids if it was really MS.

I started to develop problems now on my right side after the IV's and then when my youngest daughter's engagement broke off I lost 27 pounds in a week and back to the ER I went. I had never been to the ER before in my life. I truly think the steroids and stress just put me in a tailspin. Who knows? :confused:

I went slowly downhill and after a few years was just about losing it strength wise and had fallen a couple of times and somebody told my husband that maybe I had done some damage and to see a orthopedic surgeon. He didn't care for the quality of the first 4 MRI's and said be prepared for it to be MS because he didn't see anything in his field wrong with me but he couldn't understand why after almost 4 years nothing had changed like MS does. You know, it comes and goes. Plus I was a little too old to be getting MS. There were no good days at all.

He went ahead and ordered another cervical and brain MRI. I went back to his office convinced it would finally confirm MS. He had a neuro-radiologist read the MRI's and he said absolutely it was not MS. There wasn't a mark to be found and he didn't have a clue what was on the first one that had been done. Again, he really didn't care for the quality of the original 4 MRI's.

He thought maybe that MS had been so firmly planted in my brain that maybe it was even psychological but you would think after the good news it would eventually go away.

As I've told you before my one band came up for lyme, not 2 mind you but why did even one come up? And even though it wasn't great steps I was achieving with the Rocephin it was getting rid of 3 or 4 of the problems. Does this make it lyme? I don't really know but was told that it had to be fighting some kind of bacterial infection to get rid of even the minor things. The drug was not made to stop hair loss, twitching, insomnia and help me start to walk better with less equilibrium problems. I do know the doxy is doing nothing so I chose not to continue it at this point. I mean all the problems that went away with the Rocephin have come back. Of course it was just 100mg 2x a day. Not enough for the people on this board.

I seem to either be responding somewhat to either takemylife's protocol with the greens and enzymes or the colloidal silver. I don't know which but really don't care either as long as it helps. I won't go on with this unless I continue to see improvement because there would be no point.

I don't know if you agree or not but I still say that the steroids really fouled up my immune system and that is why it has taken longer to respond to anything. It may not be the right reason but I have read on numerous sites that you don't give even the smallest amount of steroids to somebody with lyme. I'm not sure you could have given me much more than was given. Maybe down the road we will find out why. Does it compromise the immune system so much that it won't respond to antibiotics? Who knows. Until the "full" truth about lyme is discovered I don't think any of us has a clue.

So there's my story in a nutshell and I hope it makes some sense to you and explains why I choose to believe it is not MS. I hope this allows you to sleep better. :D And as usual it is a novel. Sorry again!

By the way I don't know if you saw the thread I sent jon but I am going to start a new one " mailbox angel".. You need to read it. Maybe it will help.

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