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Lyme Disease Message Board


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[QUOTE=jojo;5217028][COLOR="Teal"]JusDebbie, I went to Mayo also. I told them of the mental issues I was having from the Lyme. they set me up for evaluation, and told me that I was border line retarded and, or, early onset alzheimers. The other thing they said, could be I partied too much in high school Holy cow, that was 30 some years ago.
I also went to the infectious disease doctor beings I have something between my scalp and skull. It is hot to the touch, and it throws me off mentally. The infectious disease doctor listened, then said, Did you hit your head? I told her it had started 9 years prior...Other words she did not know and passed it off with a dumb answer.

What I am trying to get at is Mayo is "not" a good place to go for Lyme treatment. I honestly wouldn't waste my time. Infectious disease doctors are not specialist in the disease or the co-infections. Even if you got one to treat you it most likely would not be the right protocol for Lyme.

I have "one" doctor now, makes things so much easier, he treats viral, bacterial infections, he treats thyroid, he is a Rheumatologist.

He has his own practice and treats Fibromyalgia and chronic fatigue by looking for each individuals problem. could be bacterial, viral, heavy metals. By getting rid of the problem it lessens the pain and other physical problems we get from these infections/heavy metals.

Fibro and C.F.S. is not a one size fits all. And there are ways of getting better besides taking antidepressants and other meds G.P's put us on for the run of the mill treatment. I had one doctor eons of years ago, he had me on 14 prescriptions at ONE time. They did me no good and made me worse. That was before I figured out, he wanted to give me a label for something. But did not want to even look into Lyme. good lord I had been bitten by ticks then got sick. ugh!

I was thinking you could of had the borrelia bacteria (lyme) all along, and it re-activated itself. Especially being on steroids. Steriods are the worse thing any one can do that has Lyme and co-infections. They lower the immune system and allow the bacteria to create more havoc in us. Been there done that before I understood what was going on.

also taking the antibiotic, you will want to take probiotics from the health food store. Put good bacteria back into your colon. Having chrons and taking a antibiotic you could have more problems without a good Lyme Literate Medical Doctor, (LLMD) helping you through this.

From where you are sitting look for a Lyme support group in your city, county, state. There should be a contact name, see if you can request a LLMD from them. You may have to travel, and most of us have to pay out of pocket. Beings many do not take insurance. It is your life and your health.

It's a hard road to travel, but you can bet all of us on this board totally understand what you are going through.
Hope you find your answers soon!

Jodie [/COLOR][/QUOTE]


Hi Jodie and thanks so much for replying. I know the deal about Mayo... Ive been there before and i am not expecting to get the answer from them. I was scheduled to do this back in March when i couldnt stay any longer from a crohns workup, then was scheduled in May but i was too sick to go, so it was rescheduled for Sept 5th. In the interim, i was dx with Lyme by my local GI. I have an apt Friday with someone he suggested but ive been researching all around all these forums for a somewhat local LLMD. I have a few names Jemsek, Harbor, Shor, Horowitz, and Malik. Today i plan to call them and set something up. I can NOT believe your treatment at Mayo and if i get setup with someone that goes that route, i will just walk out! You guys have given me such great info and im not going to waste my time hearing them poo poo what i have when i know i have something and feel like im dying. That must have been so frustrating for you. I will report back on how that goes! I do also see an alternative medicine doctor, i started the end of May. I am following his treatment plan and using 18 "remedies" that are sprays to help boost my own immunity to fight off all the conditions i have. I also have had about 6 needles in my ear over the course for celiac and pain. They stay in about 3 weeks and are to "cure" the problem. According to him i have crohns, celiac, disease, lyme, hypothyroid, mono, metals, parasites, and so on. I have not had any relief yet from these treatments tho he says that i am improving by his testing methods (auricular medicine) but it may take me a long time to "feel" better. As for what you say about the steroids, i too believe they were what put me over the edge and to what i feel like is the point of no return. Everything got worse after that however, its been steadily getting worse and worse almost like compounding. When i think it cant get worse, it does! Its the craziest thing ever. I also have been on many different chemo drugs for my crohns so im sure they also contributed to any co-infection wreaking havoc on me. I am just learning about these co-infections but it all sure makes total sense to me. Its so frustrating that very few doctors even believe in all this, especially when i feel like i am such living, breathing proof and there are many others out there just like me. It blows my mind! What is their purpose to denying the reality of it? Thanks again for your thorough reply, and i will keep you updated.

Debbie





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