Some of you know me, and know my story, but for those of you just starting and are needing some encouragement, I thought I would share my success story. Although my story might be hard to read (meaning, it has some details in it that are very sad and scary), it does have a happy ending!
I got bit in 2000 and had symptoms here and there, but not until the birth of my 3rd child (last year) did my disease kick into high gear. Each day brought new symptoms and more doctor and more tests. I was going downhill very fast and experiencing major nervous system and brain symptoms. I also was loosing the ability to think, which was very scary.
My symptoms were similar to each of you but here are some of them listed: extreme spine pain, trouble walking, numbness, neuropathy, electrical feeling up and down body, tremors, feeling like I was going to pass our or have a seizure, twitches, extreme panic and anxiety, mood swings, lyme rages, loss of 30 pounds, air hunger, night sweats, rotating pain...and so on.
When I started treatment, I went to a natural clinic that gave me Cats claw, a natural antibiotic. Instead of starting me off slowly, they gave me way, way to much (at least 180 drops a day if not more) and I experienced my first horrific herx reaction. My symptoms multiplied by 1,000 and sent me into a whole new world of pain. If felt like I was being cut open by a knife and operated on, and also like someone pouring battery acid on my brain. It was horrible, and because I didn't know I was herxing, I kept taking the herbal medicine religiously. I started having seizures, OCD episodes, anxiety, convulsions, black outs, extreme air hunger,...and so on. I didn't leave my house for 2 1/2 months. The pain was sooo horrific that suicide was on my mind 24/7. It wasn't like a choice, it was my body screaming to get out of pain. It felt like someone put my hand in boiling water and held it there, while electrocuting me at the same time. (and my family wondered why I couldn't just do normal things during that time- arrrrg!).
Because of the pain, and lack of understanding and support from my family, and the feeling like I was going to die every second of the day, I tried to end my life. I landed in the hospital for a week and strangely started to feel better. Now, I know, that it was because I had stopped the herbal medicine! If I would have known, i would have cut WAY back a lot sooner. I shouldn't have had to go through that. They 'naturalist' should have warned me.
The hospital and family threw me into the psyc ward where they diagnosed me with "post-partum depression". What a joke. They mentally abused me daily about 'my obsession' with lyme. They tested me for it (without my consent) and since it was negative, told me to never speak of it again. I eventually had to do everything they said to get out of there without them doing shock therapy on me.
I made it out, and started antibiotics SLOWLY. I know herxing is a good sign that something is working and something is dying, but you should not put your body through such torture like I unknowingly did.
Day by day, I slowly got better. It took a long time, but little by little, my symptoms went away. The last to go were the tremors, twitches and brain zaps. I have no more anxiety, very little mood swings, and no more pain!!!
I am still on antibiotics...only two weeks out of the month. But I'm calling it a success story. I am basically symptom free!!! I remember being on this board, thinking, I'll never get better. I'm going to die from this. I will always be in pain!!! But now look at me!!! I'm living life again. I'm smiling, laughing, working some. I've come sooo far from where I was. I still have nightmares about it, but I get to wake up and be alive without pain!
So, I owe a big thank you to Lymenet for helping me through such a hard time. There were many board members that encouraged me and helped me keep going. And although I tried to end it, I'm so glad to be alive now. I never knew it would get better, so I want you to hold on to that when you are at a really dark place. It CAN get better! I know some people really struggle for a long time, but don't give up!
I know I might relapse (on or off antibiotics) but I'm enjoying life again now, and I'll take what I can get. I thank Jesus for my progress.
My focus now is my 3 little girls. One of them had symptoms as an infant, but seems to be in remission right now. It breaks my heart to know I could have passed this on, but I'm strong enough to fight for them now.
Keep fighting, and I wish all of you a pain-free holiday! Love, b
Posted by missing (Member # 22437) on :
Awesome thanks!
How long did it take?
Brain zaps! I love it! That used to happen to me too!
Those are gone!
I just mostly have to deal with pain now.
IT is horrible pain that is torture.
I am glad you made it! that is awesome!
Thank you for taking the time to tell your story.
Posted by Brandimc (Member # 22017) on :
This month is my 16th month into treatment. So, about that long. The pain ended around one year.
I heard this from someone:
My worst day this year is still better than my best day last year!!!
Posted by seibertneurolyme (Member # 6416) on :
Brandimc,
Have you sent this message to the J clinic in Kansas? I honestly think you should share this with them. Hubby also ended up in the psych ward after a suicide attempt back in 2002. Like you he tried the herbal route (with the same clinic) before antibiotics. And it was just too much too quickly.
He has had a much longer road to recovery than you unfortunately, but is now on IV antibiotics again and doing the best he has since he got sick 10 years ago.
Congratulations on your improvement.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
That's really really wonderful news, Brandi!! I remember when you were so very ill and on your last knot in the rope.
I'm praying for much continued success!!
To God be the glory!
Posted by triathletelymie (Member # 26456) on :
Thanks, Brandi, SO much for sharing your story! Most of us here are still way deep in the trenches and need to hear stories like yours!
Thanks SO much again!
I have had these #$%& brain shocks/zaps for 11 months now...they totally SUCK! I will know that I am turning this very sharp corner when they are GONE!!!!
Congrats!!!!!
Posted by Hambone (Member # 29535) on :
Thank you for sharing.
So glad you feel better.
Were you diagnosed through IGeneX or clinically? Just curious.
Posted by feelfit (Member # 12770) on :
yay Brandi!!
I remember that last Christmas you were not well at all. Wishing you continued success and health.
Thank you for sharing your story.
Feelfit
Posted by Brandimc (Member # 22017) on :
Thanks everyone!
Bea, I've thought about contacting the clinic. I probably need to. I know that he usually sees people after they have tried the antibiotic route, so I thought maybe he didn't take into consideration that I hadn't had my first herx yet. Either way, he should have warned me. It almost cost me my life.
Herxing that bad was literally from hell. I hallucinated, visually and hearing also. I had those brain zaps about 20 to 30 times a night, so violent that my body shook each time. I would wake up and have a seizure where my eyes would bounce rapidly back and forth. It was the worst experience I have ever been through.
So, yes, I need to tell Dr. J what happened.
Hambone, I was diagnosed through IGenix. The combo of drugs that helped me so much was doxy, zith and malarone, with pulsing flagyl sometimes. Hope that helps.
Posted by seekhelp (Member # 15067) on :
Congrats Brandi! I hope it continues for you. Good inspiration. 2010 seems to be the year of wellness here for so many. Hopefully one of these years I'll make a post like this. It sounds like you went to hell and back.
Posted by Fuel1212 (Member # 29312) on :
Great stuff...thanks so much. It is nice to hear positive words of encouragement.
BTW - Those brain zaps and internal tremors are NO FUN...thought I was going crazy.
Posted by mbdq (Member # 26277) on :
thanks so much for your post Brandi! Very inspirational to me.
Posted by sutherngrl (Member # 16270) on :
Thanks for posting your story. Very inspiring and helpful for those of us still fighting.
I'm 2 and 1/2 years into treatment and started to really notice improvement at the 2 year mark. Still not back to normal but getting closer; and hearing stories like yours helps me want to continue the fight.
Posted by just don (Member # 1129) on :
I remember how down and out you were.
Miracles do happen dont they.
There was a topic here on general,,,, 'suicide',,, in last few days.
Can you pay it forward and respond to that lady??
SHE needs your help, to help herself.
She so sounds identical to where you were. Throw her a 'rope of hope' if you can.
Just this thread is inspiration to untold masses,,,you never know how many people read and are inspired by it!!!!
Many many have written to say they read and was helped by this little tidbit or another in their life.
Keep on keepin on,,,and give those 3 kiddyhoos a extra hug tonight!!!
Posted by Karen Mc (Member # 23354) on :
SO glad you are doing better...Have a VERY MERRY CHRISTMAS sweetie..you deserve it (:
Posted by BoxerMom (Member # 25251) on :
Big big hugs!!!
And Merry Christmas!
Posted by Brandimc (Member # 22017) on :
Just Don, I responded on that thread. I hope she reads it!
Posted by Dekrator48 (Member # 18239) on :
Brandi,
Oh yes, I remember your hopelessness well.
I am thanking God that you were able to figure out why you worsened so much and then stuck with treatment until you got better.
You are a strong woman and I know you will help others with your story.
I pray that you and your family continue to be blessed with good health and happiness.
Merry Christmas!!!
Posted by venus (Member # 16991) on :
Thsnks for sharing.
Posted by jlp38 (Member # 27221) on :
What a wonderful story! So glad you're not in that horrible place anymore!
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