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Old 12-18-2011, 07:26 AM   #1
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Lyme Disease... Are you ever free from this horrible disease?

I've done my share of searching this board and have followed a few posts on here looking for a happy ending to their particular battle ( namely Romans77, betterlifeforme, and a few others my Lyme brain can not remember right now) anyway, these people were strongly involved on the board for years starting around 2005 and then just trailed off about three/four years later. Like I said, I just wanted to find that they are doing better, that they came out of this, that they are symptom free. I want that as much for them as I do for myself.

I am currently going to a LLMD in Columbia, Mo and have been treated with rounds of abs since July. I just started Clindamycin/Quinine protocol. So tired of this and I know it's not nearly as long as some of you all that have been seeking treatment for years.

Any hope out there? I want to eradicate this from my life completely.

 
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Old 01-10-2012, 04:45 PM   #2
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Re: Lyme Disease... Are you ever free from this horrible disease?

Hi Fightinglyme.

I may be one of those old Lymies you read about!

I miss those guys so much and I think about them all the time. (sniff sniff)

I can't say a lot now as I have to step away for a bit, but I just had to tell you that I beat the heck out of Lyme and I test negative. I even test negative for my Bart co-infection, hooray!

Unfortunately, my thyroid is in the crapper right now thanks to Lyme related Hashimoto's, so I'm working on that.

I'll write more in a little while. Peace and health to you,
Mickie

Last edited by 6Blues; 01-10-2012 at 04:45 PM.

 
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Old 01-10-2012, 05:02 PM   #3
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Re: Lyme Disease... Are you ever free from this horrible disease?

Oh thank you for responding! I am just looking for hope! Are your other "missed friends" free of Lyme as well? I feel like if I ever beat this, I'm going to shout it from the rooftops to give hope to those who are struggling like I am now.

 
Old 01-10-2012, 05:43 PM   #4
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Re: Lyme Disease... Are you ever free from this horrible disease?

I also feel like when I beat lyme that I will be posting all over the place haha! Maybe though, we will be able to move on with our lives and lyme will become a thing of the past. We should promise ourselves that we will post our success stories in all of the msg boards that we can though

 
Old 01-10-2012, 06:32 PM   #5
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Re: Lyme Disease... Are you ever free from this horrible disease?

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.

Every single person has a different immune systems so what worked for me may not work for someone else. 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,
Mickie

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

Last edited by 6Blues; 01-10-2012 at 06:49 PM. Reason: argh - spelling errors

 
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Old 01-10-2012, 07:25 PM   #6
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Re: Lyme Disease... Are you ever free from this horrible disease?

Thank you. Thank you. Thank you.
I am coming up on a year anniversary when I first experienced severe symptoms and I KNOW my story isn't as heart-wrenching as some of the ones I read but your story has made me sad for you while also identifying with your pain. The hope your story gives me will keep me going on rough days. I am so thankful for your response. I am very sorry that Lyme has left you with some horrible "after- shocks" in your health, but happy to hear you would say you are doing much better. And that you have defeated Lyme!
I am so thankful. Even through my pain, God has revealed so many wonderful things to me... And tonight, your encouragement was one of those things.

 
Old 01-11-2012, 04:46 AM   #7
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Re: Lyme Disease... Are you ever free from this horrible disease?

After 20 years of chronic lyme and always testing positive I now test negative. It hasn't been a full year yet, though, so I'm being cautious with declarations. If this is a success story it is completely due to the salt/c protocol. Had I started it when I first became ill with Lyme it wouldn't have been such a long haul, but like many of you I was misdiagnosed for many years. There are a number of other success stories with the salt/C protocol that can be researched.

I think some LLMDs don't emphasize detoxing but this is vitally important. There are many adjuncts available to help you feel better during the healing process. I also found it important, for my sanity as well figuring out what to do during new developments, to have a community of fellow lymies who were on a similar path to wellness.

Whatever method you are using, I wish you all healthier days ahead.

Jen

Last edited by jenj770; 01-11-2012 at 04:48 AM.

 
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Old 01-11-2012, 09:59 AM   #8
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Re: Lyme Disease... Are you ever free from this horrible disease?

Can a person do the salt/c protocol while doing antibiotics?

 
Old 01-11-2012, 11:10 AM   #9
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Re: Lyme Disease... Are you ever free from this horrible disease?

Quote:
Originally Posted by Larae30 View Post
Can a person do the salt/c protocol while doing antibiotics?
Yes.

 
Old 01-20-2012, 01:16 PM   #10
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Re: Lyme Disease... Are you ever free from this horrible disease?

A sufferer might have to go through a process of trial and error before they hit the bull's eye of what will really target their specific battle with this disease. I recall feeling so not pleased but puzzled!

But don't give up ever. First focus on determining exactly what infections you have in the tick borne disease spectrum. Then research as much as possible. See what has worked for others and get an LLMD to treat you preferably.

When you feel down, take each day at a time.


P.S I thought I might as well add something that might help those with bad arthritic symptoms like I had a long time because of lyme. I used to have bad muscle tension, muscle twitching, neck pain, headaches and more. On a trip to Asia, China specifically, I was coaxed into a Chinese acupuncture session. I immediately found it had a relieving effect on the whole body. Something about it just felt very good. Back in the States, I went in for more sessions for a while. I recommend it for those who have lyme related joint stiffness, pains etc which are common symptoms with this illness. These sessions also had a calming and soothing effect on my agitated mind at the time.

Last edited by stasis4; 01-31-2012 at 01:46 PM.

 
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