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03/07/2008 14:54
jaime1978
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I thought we should start a permanant post here of everyone's success stories! We seem to have so many of them here and that is great!!!! So share them all in this thread!!!! It's encouraging for all of us to hear.
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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03/07/2008 15:00
Julie4848
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Well I'm not sure if this is a Success just yet, but:

I've been off everything since December 2007. So far so good...Don't get me wrong, I still have some bad days, but still go to work, cook, clean, you name it, I do it. Nothing like July 2007 when I became sick..there is hope...

Julie


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03/11/2008 00:06
deputy643
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my true success is the hope i find here. my williness to keep fighting is my success! you all give me strength and i find that to be priceless!

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03/22/2008 09:12
tina.r
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So, at last, here is my story. I am sorry if it is so long.

I am a 40-year-old mother of two lively boys living in Columbus, Georgia. I am originally from Sweden and we try to go home every summer. I am teaching Art at a University and am also a ceramic artist. I love outdoor and gardening.

The summer of 2004 we were staying on the west coast of Sweden where we have a large number of ticks and every night we put our one-year-old boy up on the table and searched for ticks. I do not remember how many ticks we removed from all of us that summer.

In Aug. I noticed a remarkable mosquito bite on my sons cheek that did not heal, it was there for ever but I did not think about it that much until one day when it obviously developed to a Bulls Eye rash. I know he had not had a tick on his cheek but knew how the rash can migrate. He was put on antibiotics by our pediatrician immediately. A few days after I also got the rash at a site where I know I had been bitten. A few hours after I had gotten the rash I started a 14-day course of Doxycyclin.

My son and I had been co sleeping all summer long and I am pretty convinced that the same tick bit us and that this tick had just been on his cheek for a very short time before it fell off. Personally I am really questioning the common thought that a tick has to stay for at least 24 hours before you get infected with Lyme. On the other hand I was still nursing my son and have been thinking about that possibility.

We were both very lucky and got well quickly. Just a few days after I stopped my antibiotics I got pregnant again and both my kids seems fine today.

Last summer we went to Sweden again and got to deal with a huge number of ticks. One day I picked 16 of my two-year-old boy, that was our record. In the end of our vacation I got a bad cough that did not go away and I was really close to go to the dr. to get it checked up but after a good month it disappeared.

In mid. Sep. I got some kind of stomach problem. Every morning after breakfast I got severe diarrhea and I had to run to the bathroom 5-10 times and then after a few hours it stopped. It made me feel crappy and again I was close to go to the dr. since I started to think that I might have become lactose intolerant but then it disappeared.

Then, in late Sep. I woke up one day with Achilles tendonitis and went to the dr. after a few days and was put on Naproxen. My feet started to hurt but I thought it was because I was limping around. A week later I woke up with the most severe neck pain and I mean severe. That afternoon I went to the dr. but he was gone for the day but I got a prescription of Vicadin, it barely did anything. Next day I went back and the dr. asked if I might have been bitten by any kind of insect and I immediately thought about West Nile Virus and Lyme Disease and we ran lab for those (Lab Corp). A few days later I got the results and the Elisa was positive (1.19). The dr. ran West Lyme Blot and put me on 10 days of Doxycyclin. Sure enough, as many of you might have experienced I got a severe Hex reaction but did not know what this was all about. The Elisa took forever to come back and my family dr. really did not know what to do with me and sent me over to an infectious disease Dr.

At this point I had finished my first round of Doxy and were still so sick. I had developed additional ache in my shoulder and knee but worst of all was my neck. I could not sleep and my mental health was rapidly declining. I got my west Lyme back and if was positive with 2 bands of IGM and the ID dr. was convinced this was an early infection but I was so sure I had reached the second phase of Lyme Disease. Together with the ID dr. we agreed on a two-week IV rosephin treatment. Honestly, I do not know where I would have been today without that treatment. And remember, I am very questionable about traditional medicine. A week later I had a follow up and the dr. told me I could not ask any questions, he was a total A.H!!!!! I was strong enough to fire him and went back to my family dr.

My Family dr. told me that if he would not have known me as well as he did he would have thought it was 95% in my head, haven’t we all heard that before! But he also told me because of knowing me so well and knowing I am not a complainer he took it very seriously. I begged him to test me for Babesiosis and Bartonella and to put me on a month of follow up doxy and he agreed but also wanted to refer me to a rheumatologist because of all my pain and severely elevated Sed Rate. I was okay with that. The results of my tests were okay but one of them was a borderline, do not remember it was Bab. or Bart. and I am pretty convinced that I had recovered from it all by myself.

Since all this started I had educated myself quite a lot and had also been in contact with a fantastic LLMD who let me ask any kind of hypothetical questions over the phone.

At this time I had also found this fantastic support group and I do not think I would have been where I am today without you all . I had also found dr. Burrascanos guidelines for treating Lyme and was following them religiously.

I worked with diet, swimming, sauna and hot Epson baths. I was also seeing a therapist to help me deal with pain management and sleeping problems. My turn around point was when I found my best friend, Ambien. As soon as I started to get my sleep under control I started to feel better.

After a long wait I finally got to meet the rheumatologist and he switched me over to Mobic instead of Naproxen. A dream came through, my pain almost immediately started to decrease. For the first time in life I praise these drugs, I had barely before taken a Tylenol. The Rheumatologist also discovered a heart murmur, something that I had not had before. I got that checked out and it was fine. After all new labs the dr. figured out that I have the HLA-B 27 factor and it makes me more prone for rheumatic and autoimmune disorders.

I also started to see a wonderful podiatrist that started to prescribe me shoes that would position my foot in a more favorable position to heal better. He was not a drug pusher and just used very simple techniques. He has made wonders in my life.

It is now late March and I am doing so much better. I am still on Mobic, 7.5mg. most days and am almost pain free. Sometimes I am trying to get off the meds. but last week when I tried again my neck started to hurt and I panicked, I never want to suffer with that pain again.

The rheumatologist thinks I always have to deal with pain but I am much more optimistic myself and think I will fully recover. And even if I am not, I can totally manage the level of pain that I have today.

When I look back at this I now realize how sick I was. I remember a certain time when I did not even want to get well and were thinking I would be better of in life without my feet.

I am so glad I took control of my situation with educating myself about the disease. It helped me to make the choices I did. And I did all this with the help of a very uneducated but liberal Family Dr. with listening skills, a wonderful podiatrist and a drug pushing pretty negative rheumatologist and an awful awful ID. I took the pieces I needed from all of them to solve the most complicated (and painful) puzzle in my life. But most important of all, I did all this with the help of all you.

I am a strong believer of a combination of traditional medicine and alternative ways to heal from Lyme. Please let me know if there is anything I can help you with. I love to share my experiences if it can help someone else.

I wish you all a fast and successful recovery.

Thanks you all,

Love

Tina

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03/22/2008 09:54
Julie4848
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Tina:

WOW you have been through hell and back like us all...But you are better and that is the great thing.

Like you my neck was the worse and knee. I still have mild knee pain and my neck hurts at times but not like before. That all started 8 days after we removed my tick from the back of my neck....

I have more good days then bad at this moment...THANK YOU GOD...

I will be starting the natural route next month and I'm very excited to do that, I'm not one for abx. After what one pill of Cipro did to me 10 years ago scares the hill out of me. I was in the ICU for 10 days...I'm pretty much allergic to all abx, just like my one sister and mother.

Ok, time to shovel the snow...

Julie


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03/22/2008 11:55
tina.r
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I know I am very, very lucky.

I am not a religius person but yesterday I had a moment of enlightment, a moment of realizing the existance of God. I am so full of gratefulness for all support I have recieved, all prayer, positiv thoughts etc. It is amazing to see what good that have come out from what I have gone through during this time. I have learned so much on so many levels.

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