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  • FINALLY got into the Mayo Clinic

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    Old 10-08-2013, 11:20 AM   #1
    wrmasylum
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    FINALLY got into the Mayo Clinic

    My doc has been trying for months to get me into the Mayo Clinic in MN and finally the ppthamalogy department set me up wth a two day appt end of Oct. I pray they can finally put all the pieces together for me..explain my eye syptoms, tie them to the Lyme. Good thing with Mayo is they work as a team fo youll also see other MDa as they deem necessary. So excited to have this opportunity to be seen by Mayo and Dec i have my appt with one of the best lyme specialist in DC..so God willing more answers and full proper treatment.

    My Picc line was taken out today after two months of IV rocephen. I am on twice a day Minacycline but i know this is not enough. My hair has not grown back so i know i still have an active infection. Lyme disease is so bad..affects so much of the body and without a LLMD you are sunk.

     
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    Old 10-09-2013, 03:59 AM   #2
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    Re: FINALLY got into the Mayo Clinic

    I went to Mayo about 10 years ago. I was highly disappointed. I too thought that would be my answer. I thought the doctors were suppose to be specialist.
    I thought they would put their heads together too. But what I found out is they were just like any other doctor. And they did not put their heads together. The infectious disease department, wanted me to hang out for a month for observation. I told her that this swelling on my head had been there for 4 years (at that time). I told her how it affected me, every month, the same way. She asked me, Did you bump your head? I was furious. I left and never went back. They diagnosed me with being early onset Alzheimer's, slightly retarded, or I drank too much in high school.

    It was a waste of money and my time, I left more frustrated.

    I found Mayo is not for Lyme patients. They did not even want to hear that part.

    I do PRAY that you have better luck. I found that sticking with a doctor that understands these diseases was the best thing for me to do. I found that there is "no" magic pill. And as treatment goes on, a lot of the symptoms calm down.

    I don't want to discourage you. I know you are excited. Just be aware. I walked in there thinking miracles were going to happen. They are just like any other text book doctors. I went to a different one than your going to, so hope you have better luck. And the different departments, had no idea what the others had done.

    I wish you the best!

    Jodie

     
    Old 10-09-2013, 05:14 AM   #3
    wrmasylum
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    Re: FINALLY got into the Mayo Clinic

    Thanks for sharing Jodie... helps so much. Have a wonderful day.

    Last edited by moderator2; 10-09-2013 at 05:23 AM.

     
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    Old 10-09-2013, 06:16 AM   #4
    wrmasylum
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    Re: FINALLY got into the Mayo Clinic

    Quote:
    Originally Posted by wrmasylum View Post
    Thanks for sharing Jodie... helps so much. Have a wonderful day.
    Hi Again Jodie..i wanted to let you know that you got me thinking about sharing your Mayo experience. Im actually going to call up there and find out what they plan on doing before i make the trip. If its just to reevaluate my eyes i have had my eyes checked more times than i care to recall..that i dont need. What i need is a LLMD to make the connection with the eye issues and test me for co infections which i beleive i have ( ID said he felt confident i had none) ..with no testing. So thanks for making me think a differernt way and getting facts before i take the time and money to go to MN>

     
    Old 10-09-2013, 06:42 AM   #5
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    Re: FINALLY got into the Mayo Clinic

    Many of us have eye issues along the way. My eyes got real blurry and I had tons of floaters. I also had really really bad pain. I went to a eye doctor, pre understanding all of this. He told me I had a "wart" behind my eye.

    Well my eyes are much better now. So I guess the wart is gone. HA!

    I started taking Serrapeptase, think I spelled that wrong. It helps to clean out the vessels. Our blood vessels are loved by the bacterias and viruses.

    I have seen others here on the board that tried that place. With no good results. Bottom line, as you know, we need a Lyme specialist. Some one that will treat us long term and try different protocols.

    What eye issues are you having?

    Jodie

     
    Old 10-09-2013, 07:42 AM   #6
    wrmasylum
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    Re: FINALLY got into the Mayo Clinic

    Is that herbal you mentioned? Something that can be purchased otc>

    My eyes syptoms started immediately after my first syptoms of lyme. And they ahve remained..blurry vision. i had the intense eye pain you mentioned but that has gottne better, i also have the floaters and i get what i best describe as seeing in my field of vision ..like a snowy tv screen sensitivity to light and light flashers. In every fiber of my being i beleive it all related to Lyme disease.. I beleive if the infection is hit agressively the eyes will improve. Treatment i have had simply is not enough and does not treat possible co infections. For me the eyes have been the worse part.

    Last edited by Administrator; 10-09-2013 at 10:42 AM.

     
    Old 10-09-2013, 08:00 AM   #7
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    Re: FINALLY got into the Mayo Clinic

    Yes you can get it at a health food store. It is a enzyme, made from silk worms. I take it in the morning before food. I just do that thinking it gets in my blood stream quicker

    My doc also has his patients do nitroglycerin patches. it helps open the vessels so plaque from bacteria, viruses pass through better. And the thick blood that many of us get.

    I went through the same as you with the eyes. Some times I would see flashes of light. But I can just about bet it is all Lyme related.

    In the mean time while you wait to see a good LLMD, find ways of raising your immune system. High doses of vitamin C is good for us too.

    detox as much as possible.

    Most of all, hang in there. You will get better!

    Jodie

     
    Old 10-09-2013, 09:03 AM   #8
    wrmasylum
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    Re: FINALLY got into the Mayo Clinic

    Hey Jodie can i tap alittle more into your knowledge of Lyme? What is consdiered high doses of Vit C? and you mention detox? How do i go about doing that? Thanks for all your help.

     
    Old 10-10-2013, 06:10 AM   #9
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    Re: FINALLY got into the Mayo Clinic

    My doc suggest, 5,000 to 10,000 mg of C. I use, Nature's Life, Pure C Crystals. Ascorbic Acid.
    It is in a powered form.
    When you do vitamin C you need to regulate it, beings some people it will cause loose stools. Not that, that is a bad thing, cause it does flush the colon out. But I myself don't like spending half a day by the bathroom.

    I was taking Lypo-Spheric Vitamin C for a long time, that you can order online. But it is more expensive doing that type. Suppose to be like IV vitamin C.
    If you can afford to go somewhere to get the IV vitamin C. That is a huge plus.

    Detoxing can be done in many ways. In fared sauna is a huge plus. I wound up about 7 years ago getting a indoor one. I love it!

    Other ways are, soaking in 4 cups of Epsom Salts, and 64 ounces of hydrogen peroxide. For 20 to 30 minuets. It is suppose to help pull toxins out, and putting oxygen back into the body.

    Taking charcoal, helps pulls out toxins. some docs use cholestyramine. both can constipate us. So be aware of that.

    In a book that Tess has talked about, The Salt/C Plus Protocol for Lyme Infection. It has many great ideas in it. Written by M. Fett.
    Even though I tried the Salt/C for a year, I saw no improvement. Were all different in what works. I still use the great information in it.
    Such as using food grade French Clay to help detox the body of toxins/heavy metals. And Food grade Diatomaceous Earth. (it is a clay) BUT on both of those you need to use FOOD GRADE. The D.E. also pulls out heavy metals, and kills parasites.
    I put them both in my green smoothies.

    Green smoothies are important too. Some people juice and some use blenders. You can find lots of info from where you sitting to do these. I use coconut milk, instead of dairy. And I also use Aloe Vera juice.

    I have learned also to take Castor Oil, that helps to cleanse the colon, and smothers intestinal parasites. I have learned to put that in my green smoothie. Yuck!

    Garlic is also a natural antibiotic, which I put in my smoothie also. You can get that in supplement form.

    Taking things to help cleanse the Liver, gall bladder and kidneys is a huge plus too. I have used Dr. Shultz detox for gall bladder, after a surgeon told me to have it out when I did rocephin. My doc at that time, suggested Dr. Shultz. I ordered the detox and saved my gall bladder. The products are expensive.

    I have had to learn a lot of this by reading and seeing what others do. And what I can and can't afford to do.

    It is a full time job getting and staying on top of this.

    Hope that helps some.

    Jodie


     
    Old 10-10-2013, 06:22 AM   #10
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    Re: FINALLY got into the Mayo Clinic

    Some also say if you have mercury fillings, to have them removed and replaced with composite.

    also there are many types of herbal tinctures on the market. Some people have good luck doing these instead of antibiotics.

    One thing about all of this, what may work for you today. You might have to switch it up with something else later. I have been on antibiotics, tinctures, chiropractic, acupuncture. I've never been able to do Rife or Hyberbarics.

    No matter what, if we have it chronically it takes many different ways of riding it. Then one also has to concentrate on the Parasite issue that we all have. The heavy metal load. And dealing with chemical sensitivity, mold sensitivity, then there are the co-infections.

    Sounds over whelming, and it is. But going to a GOOD LLMD that will help get you going.

    K think I have run out of things to say. lol

    Tess is a great one to talk to about the Salt/C protocol. You could always give it whirl until you get to see the doc in November. It is not expensive to do.

    Hope you have a wonderful day!!!

    Jodie


     
    Old 10-10-2013, 07:17 AM   #11
    wrmasylum
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    Re: FINALLY got into the Mayo Clinic

    Quote:
    Originally Posted by jojo View Post
    Some also say if you have mercury fillings, to have them removed and replaced with composite.

    also there are many types of herbal tinctures on the market. Some people have good luck doing these instead of antibiotics.

    One thing about all of this, what may work for you today. You might have to switch it up with something else later. I have been on antibiotics, tinctures, chiropractic, acupuncture. I've never been able to do Rife or Hyberbarics.

    No matter what, if we have it chronically it takes many different ways of riding it. Then one also has to concentrate on the Parasite issue that we all have. The heavy metal load. And dealing with chemical sensitivity, mold sensitivity, then there are the co-infections.


    By a

    Sounds over whelming, and it is. But going to a GOOD LLMD that will help get you going.

    K think I have run out of things to say. lol

    Tess is a great one to talk to about the Salt/C protocol. You could always give it whirl until you get to see the doc in November. It is not expensive to do.

    Hope you have a wonderful day!!!

    Jodie


    By any chance did you catch the Katie Couric show yesterday on Lyme. I actually forgot to record it but caught some online last night. A dr on there from upstate ny looks promising. Not sure if hes any better than the DC guy i hae an appt with. Whats hard is there are options for llmd out there and sometimes youre not quite sure which is the right one to go see.

     
    Old 10-10-2013, 08:49 AM   #12
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    Re: FINALLY got into the Mayo Clinic

    Yes I watched it. The LLMD was awesome.

    Maybe you can find it on her web sight?

    Enjoy your day!

     
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