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lyris Posts: 276
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 A few months ago the left side of my jaw became numb, and I have constant screeching in mostly my left ear, but it's now starting in my right ear, plus now I have ringing in my ears. I had an MRI and they found a couple of tiny lesions in my brain, and the neurosurgeon thought it might be MS and recommended a neurologist. So I've had a few of MS tests and one showed an indication for MS, but I'm older (62) and the neurologist had me take more blood tests mostly for Lyme Disease. I was told yesterday that there are twenty three tests for Lyme Disease. Two down twenty one to go.   I don't know if this fits Lyme Disease, but I am forgetting things which is frustrating, I am so tired but can't sleep. I have to run the t.v. all night because of the noises I hear. I never get a decent nights sleep. I'm in limbo and it is frustrating as I'm losing weight, don't have a real job, but a part time job at federal minimum wage, and while I do have health care (MA made it a law) I don't know how long I will be on it. I also had Crohns Disease, Colitis, and Asthma. If I were a horse they would have shot me by now.  But I do have reasonable control of the other diseases I have. |
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lyris Posts: 276
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Last Sunday I had yet another MRI. I wish I knew what they found but I'll have to wait until August I guess. That's when I go to see my neurologist. I guess that means there's nothing major going on inside me. |
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cmany Posts: 6204
Group Leader
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Lyris... Hang in there... I am wondering what all of the Lyme tests are...as there is absolutely NO single test that is 100% accurate in diagnosing Lyme... Hopefully one of these tests will give you the answer that you need... It does sound like Lyme - what are you doing at home? How is your diet? Gluten Free can be very helpful to Lymies - and having Crohns it should help too... Lots of veggies - are very important for Lymies - not to mention your other conditions...fruits for energy - in moderation... I would seriously suggest getting on a whole food supplement - it will help with the digestive issues...and help you to absorb many of the nutrients that you are needing. PM me for more info on this... Lots of water too...water is very helpful for the digestive tract...half your weight in ounces daily minimum... hang in there - this is a very difficult disease to diagnose - and diagnosis REALLY should be based on CLINICAL presentation..as NO test is 100% accurate... If you want to find an LLMD - let me know and I will see what I can find for you... Christine [b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
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"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid |
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lyris Posts: 276
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I rarely eat white bread, but whole wheat helps my Crohns and Colitis. Some vegetables and fruits can raise havoc with the Crohns and Colitis. Sometimes even the "safe" foods can raise havoc with the Crohns and Colitis. I walk on egg shells. So I take lots of vitamins to make sure I get some nourishment. One no no I do is drink cola, it doesn't upset my digestive system. |
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toothfairy55 Posts: 3856
Senior Member
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Your very right about the coke being a no no. Our LLMD said absolutely NO soda coke and pepsi in particular. Sorry  Carol
I am NOT a doctor, anything I share is based on my experience & research. I encourage you to discuss any and all information that I share with a health care provider. |
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lyris Posts: 276
Member
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Oh well, I can't drink fruit juice or milk because I would be living in the bathroom. I do drink water but worry about the toxics that come along with it but it faucet or bottled. I have to have something in liquid form as I don't have saliva another side effects of my brain lesions. |
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toothfairy55 Posts: 3856
Senior Member
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There are some products that help moisten your mouth that can be gotten at your larger chain food stores or pharmacies. Biotene is one of them. They have a mouth wash as well as a gel that I recommend to my patients. Its called Oral Balance. You put it on with your finger and it moisturizes your gums for 8 hours. Good for bedtime. They also make gum too. Coke and pepsi will disolve a baby tooth. If you have kids who are losing teeth, throw one into a glass and see how long it takes for it to disolve from the acids. Not pretty LOL Drink LOTS of water and you should also take a probiotic. Carol
I am NOT a doctor, anything I share is based on my experience & research. I encourage you to discuss any and all information that I share with a health care provider. |
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cmany Posts: 6204
Group Leader
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Definately get on a whole food supplement - it will get you the nutrients you need in a better way... I know how hard this is...but you can get through it. IDK if you have tried any alternatives that are gluten free...but it is an option Hang in there [b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid |
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lyris Posts: 276
Member
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I have nine grandchildren and a great-granddaughter. I know about Pepsi (hate Coke) but it doesn't cause problems with my digestive system, as you may know I have Crohns and Colitis. I wish I had pure water around here but I live in a city where our water is chemicaled* to death.  I grew up in the country, now suburbia, and had fresh tasting pure water. I was spoiled. We called it magic water, our clothes washed cleaner using less detergent, less fabric softener, and less shampoo on our hair. Now thanks to the greedy corporations there's no pure water anymore. Not even the bottled waters that come in poisonous plastic containers. I know soda does too, but I can't taste it as I can the water. I wish we could go back to glass containers, I know they break, but they were safer. * yes I do like to make up my own adjectives. Post edited by: lyris, at: 05/22/2009 01:41 PM |
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lindaca Posts: 1009
Member
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Lyris, you can get whole house water conditioners that help to remove some of the ucky stuff from the water. These are not water softeners, just filters. These do not make the water as soft as a water softener, but do help to remove a lot of the nasties. In my prior career, one of my clients was a nationally-known testing lab (not a medical lab). They told me the whole story about bottled water, and how unpure it is. It does contain nasties, even organisms, just to a lower degree (supposedly) than the stuff that comes out of the tap. All they need to do is have samples fall within certain boundaries for the ucky stuff, not to have an absence of it. |
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