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Lyme Disease Message Board

Lyme Disease Board Index

Hi, I'm back.

I remember the suffering I went through with this darned disease. My heart goes out to all who are on the throws of fighting it.

The best thing I can say is treat those co-infections, check your thyroid and adrenals, keep your spirits up and never ever ever give up!

I was misdiagnosed for about two years. The result of that is Hashimoto's thyroiditis, permanent bilateral vestibular loss and oscillopsia, which is a fancy way of saying I have complete loss of balance and bad vision because of it.

My favorite misdiagnosis was from a neurologist who said I had early onset dementia! LOL.

One day I was so desperate for help that I dragged myself into a random physical therapy office and begged for an appointment saying that I would pay anything if they could teach me to walk again. The woman behind the counter asked me what my symptoms are and I began to list them and then burst into tears.

The woman was so nice, she took me in the back, handed me some tissues and asked me to start from the begining. After I summarized my symptoms, she said "You have Lyme" and she gave me the name of a top notch LLMD two towns over.

It turns out that she had Lyme. She was a professional bicyclist who fell off her bike one day because of loss of balance. She now has a pacemaker because the bacteria settled in her heart tissue.

I won't list what my Lyme symptoms were, there are too many!

However, I saw the doc she recommended and I began treatment in January 2005.

I pretty much tried it all: you name it, I tried it.

I tried at least 12 different high dose antibiotics including two different IV's (Rocefin & Ceftrioxone). I even tried those nasty Penicillin injections. I was also on a few drugs that made me so nauseous I vomitted frequently.

I tried detoxing diets, detox foot pads and detox baths of hydrogen peroxide + epsom salts at 104 degrees after dry brushing my skin.

I tried going sugar and carb free for 30 days straight.

I tried aromatherapy, raindrop essential oil massage therapy, magentic necklaces, and that weird light beam thing in your ear. I also tried the machine where you have to hold a damp sponge .... sry, I can't think of the name of it.

I tried trampoline therapy to drain my lymph. I tried parasite removal, and every single vitamin, probiotic and supplement that exist.

At one time I was taking 72 pills a day of different sorts. I carried them around in a basket for years along with a chart in a plastic photo frame so I could keep track of when to take what because I couldn't take pill A within two hours of pill B.

The Herx'es, the rashes, the pain, the fatigue, the spots, the brain fog, the loss of income, the side effects, the cost - holy mackerel I probably spent $75,000 in total.

This suffering lasted for about three years. It was awful. I even had to give away my dog. At times I truly wanted to die. My poor poor kids ... they were small and I was / am a single mom.

Once, my washing machine and kitchen sink broke and I was too sick to call for repair so my kids washed the dishes and their school uniforns in the upstairs bathtub. When I say our life was rough, believe me, it was.

I don't know how we made it through but we did. If it wasn't for this board, I don't think I would have made it. There were days I posted here more than once just because I had no one to talk to.

The drug that worked for me was Zithromax. It worked so slowly that I barely noticed the improvement at first.

[B]Every single person has a different immune systems so what worked for me may not work for someone else. [/B] There are many strains of Lyme so different treatments works for different people.

In addition, I had Bartonella as a co-infection. I had to tackle that first.

I am now symptom free as far as the Lyme and Bartonella go. It feels wonderful to be able to walk pain free without limping and weaving into walls and having strangers glare at me as if I'm drunk.

A few months ago I test negative for both Bartonella and Lyme. yay! Although I will never donate blood again, just in case.

However, I am battling some serious thyroid issues as a complication from the Lyme. I found a great doctor to work with me so I know I will get this under control.

When people recover from a long term illness, they never forget it. All the Lymie's who beat this thing aren't here because they don't care, it's just that they now can go back to work and back to parenting and back to life. Also, maybe some want to leave it in their past because it was traumatic for them. Or perhaps when you talk about nothing but disease for years on end, it's nice to focus on other topics for a while.

Even I haven't posted myself in ages because of my thyroid issues and not having the strength to lift my fingers to type.

Again, the best thing I can say is treat those co-infections, check your thyroid and adrenals, keep your spirits up and never ever ever give up!

I will try to come back once in a while and offer some hope and support. Hang in there everyone, this too shall pass.

Peace and health to all,

p.s. Didn't mean to write a novel, sry! Feel free to PM me if you don't see me around.

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