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Old 08-24-2011, 09:39 AM   #1
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Question Lyme Disease? Treatment? Undiagnosed 6yrs!! Please, please help.

I have a number of LD symptoms, the only truly debilitating symptom being horrible fatigue that makes me feel unable to stand from more than 2 minutes at a time...virtually all day, every day.

I have been horribly ill for 6 years, many specialists, still no diagnosis (besides CFS), only possibilities. I'm now being treated w/100 mg Doxycycline 2 X's per day for 3 months, in case it is Lyme. 2 mos in no major improvement.

Question: is this a high enough dose to test out the theory of Lyme?

Illness began w/mono, crushing fatigue that would improve and increase sporadically, but after over mono I never fully recovered...many mos after mono, I still had severe fatigue & burning arms. Then many mos later I Had several mos of improvement, 30 min to hours of energy per day and would be slammed w/fatigue...but atleast there were moments I felt ok. Now it has worsened and I never feel normal, well, healthy, or have energy. never.

Years later, I now have symptoms from burning thighs, traveling burning sensation in extremities, crushing debilitating fatigue, insomnia, traveling joint pain, palpitations, chest pain, shortness of breath, headaches daily, sound sensitivity, tooth sensitivity, insomnia, ringing ears, muscle twitches, iritis few times, vision fog 2 X's, recurring UTI's & bladder pain, stiff neck, back pain, teeth clinching night (2 cracked molars!), etc. Only constant symptoms are fatigue, insomnia, ringing ears.

 
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Old 08-24-2011, 05:33 PM   #2
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Re: Lyme Disease? Treatment? Undiagnosed 6yrs!! Please, please help.

Sad to hear what you are going through.

There are 2 threads above, "Lyme Newbies" and how to share Lyme doctor names". that you should read over...

The strength of doxy that you are taking is definatley not enough. This is the run of the mill treatment. Lyme has a few phases of life, so you would need one to kill off the young form of it, one to break open the cyst it creates around itself and one to kill off the older ones.

There are alternative things you can do also. Such as the Salt/C Plus protocol. This is not table salt nor the ascorbic type of vitamin C. You can find info from where you are sitting, and from doing a search here on the boards.

I think you also need to be tested for the other things that ticks and insects can carry, Such as Babesia, Bartonella, Erichliosis, on and on.
If you call Igenex Lab, which you can find their info from where you are sitting. Request a test kit from them, tell them where you live or have been and they should be able to tell you what strains of all of these you should test for.
You will need a doctor to sign it off to get the lab to draw blood.

When we have had lyme and co-infections for many years. It will be hard to get it into remission. There is no majic for sure pill to take, treatment is expensive and for some of us never ending. We get better, not cured.

Any questions ask away!

Jodie

 
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Old 08-26-2011, 06:23 AM   #3
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Re: Lyme Disease? Treatment? Undiagnosed 6yrs!! Please, please help.

Thank you so much for the help, I will look into the threads & salt/C. It is so frustrating to have zero help in the form of a doc...so, I'll ask what I would be asking my doc...if I thought he'd know the answer.

Do you think, after being on the doxy for 3 or 4 months, that even though it wouldn't be potent enough to make me well....that it would still somehow help me to know if I do have LD or not? For example, if after 3 solid mos of antibiotic, if I had LD, wouldn't I see some changes while on it...and maybe when I come off it? If there's zero change, I'm wondering if I could assume that it must not be Lyme? But...then there are co-infections possibilities, UGH. At the end of the doxy, should I beg my doc to treat me for co-infections and see if then there's a change?

Do my symptoms even sound like Lyme?

My doc is ready to send me to the Mayo Clinic in an attempt for a diagnosis, since he can't figure it out. But, judging by their website, they know no more than I did in the beginning. I don't know what to do. This illness is now starting to feel dangerous...I have an 8 year old...so, I'm feeling even more motivated to get it figured out.

I could go to Mayo, since this could be a different disease all together, or, I go sent blood work off to IGenex, and if I get a positive....drive to the end of the earth for a Lyme Literate doc, which would be difficult since I do have a young child.

If I pick the wrong route (Lyme Doc or Mayo), it's wasting more time, money, and being away from my family for nothing, etc. Any words o' wisdom???

Thank you so much for your help!

 
Old 08-26-2011, 07:30 AM   #4
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Re: Lyme Disease? Treatment? Undiagnosed 6yrs!! Please, please help.

I had cracked teeth too, infact I had some pretty teeth until this all hit. My gums bled, my molar broke apart and cracks in other ones...

I went to Mayo, don't waste your time or energy going there. They did nothing for me except tell me I had alsheimers, slight mental retardation, and that I it couild be cause I dran when I was younger...

They are NOT specialist in anything from what I saw.

Get to a Lyme Specialist and get it ruled in or out. From your symptoms, and if you have had it for 6 years. You need the proper help.

I have read somewhere that doing low doses of doxy just makes the bacteria run and hide more. At this stage of the game you need someone on your side that knows half way what they are doing.

Jodie

 
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antibiotic, doxycycline, fatigue, lyme, treatment



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