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» LymeNet Flash » Questions and Discussion » General Support » A Message of Hope for the Hopeless

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Author Topic: A Message of Hope for the Hopeless
MissMari
LymeNet Contributor
Member # 11274

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Hey Everyone,

It's been a very long time since I have logged on here.... it's been a long and often difficult road.

However, I am happy --- no, not happy, DEEP IN MY HEART AND GUT GRATEFUL that today I am so much HEALED!

For those who don't know my story, my tick bite occurred in 1995.

I did not have the tick on me at the time my arm exploded in a 4 inch round red rash, so I self-treated, thinking it was simply an infected bug bite of some sort.

Here is where I kick myself, because I am a former nurse, as well as a lab tech with a degree and specialty in --- of all things --- microbiology.

I should have known better. However, I was taught in my lab classes the very same thing many doctors are taught about ticks and Lyme Disease: the IDSA guidelines.

With no visible tick (although I was living in a high-endemic Lyme area), it couldn't be Lyme Disease.

With only a round red rash (and a fever and a stiff neck and not being able to get out of bed), it couldn't be Lyme Disease.

"It couldn't be Lyme Disease" was the line that ruled my life for the next 5 years:

Regardless of double vision, losing my balance, round red rashes that appeared and disappeared on various body parts, choking on food, swollen joints that came and went,

stiff necks, massive headaches that made me want to put my head thru a wall, anxiety, depression, suicidal thoughts and acts, and --- worst of all ---

losing my ability to think, reason, or even lock a door...

"It couldn't be Lyme Disease". It "could be":

MS, rheumatoid arthritis, lupus, a brain tumor, atypical autoimmune disease, bipolar disorder, mixed depression, personality disorder, hypothyroidism....

I WAS diagnosed AND treated for every one of those. Even though the test results were normal.

Here's how that happened. (I'll bet this is common in alot of us.)

In 2000, after BEGGING my doctor for a Lyme test, he agreed. He called me at work the next week, with a (quote) "You got it! It's Lyme!"

The test was an "equivocal". I received 3 weeks of doxycycline, and was to follow up in a month.

I did, and received ANOTHER Lyme blood test. This one came back negative.

And my doctor said "you can go home now" and he walked out of the exam room on me. I had to call to him in the hallway -- "hey, I'm still sick!".

And he answered (quote) "you don't have Lyme. You never had it."

The end. He retired. I had no further medical treatment of any kind for another year, when I could no longer get out of bed (again).

My doctor's replacement insisted I had RA, depression, and the other diseases I mentioned above.

He treated me for every one of those, at wasted time & expense.

Not only did I get far worse, but I could not work, could barely take care of myself, made horrible decisions, and generally could not function.

Two years ago, I lost my job, my health insurance, my savings, had my car repossessed TWICE, almost got evicted, and not a day went by that I did not think of killing myself.

I found this website. Off and on I made it here and tried to get better.

Finally, my desperation here brought me to the attention of TIN CUP, who reached to me out of the darkness and got me to see an LLMD.

I was so sick, so frustrated, and so defeated, that she had to make the phone calls for me. But I got my appointment.

I had to scrape money together to do it.

It has been just over a year of treatment; during that time I have had several setbacks, physically, financially, and personally.

I had to beg, borrow (alot of borrowing) and virtually steal to be able to afford the doctor visits and the meds and the supplements, but...

Last week I woke up, and felt.... normal. I have not felt "normal" in 15 years!

I had to think what was different --- there was no headache. A little back pain and a little neck pain, but not terrible.

I could get out of bed and I went food shopping and I walked in the mall and I READ A BOOK all the way through without having to re-read paragraphs over and over to figure out what they meant!

I SLEPT 5 whole hours at night!

I can drive without thinking how to do it, can open and lock a door without vebally telling myself how (I used to have to do that out loud! talk about embarassing!)!

I can actually write this message, and even have a coherent conversation with you!

I know, I know --- I've been long-winded here. I apologize.

But, I could not let another day go by without coming on here and thanking some very important people (and I may forget some because there were so many) for this MIRACLE that I never thought would happen!

THANK YOU:

Betty, Tin Cup, Margie, Jeanine, David (I owe you!), Dr E (the miracle worker), Dr Burrascano (who truly understands how to treat Lyme Disease!),

and everyone at LymeNet who are providing compassion, caring, support, information, and most of all Never Give Up on us Lymies.

I am healing. I am myself again. I have a ways to go, but that's ok. I have alot of wreckage in my life to clean up (and I wish it didn't have to have been that way), but I am HERE.

A year ago I wasn't so sure I would be.

And now I want to give it back.

If all I can do is send this message out, that there is HOPE and HEALING from Lyme (and I was one of the most desperate cases), it's a pleasure.

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
17hens
Frequent Contributor (1K+ posts)
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Your story is just about the best thing I have EVER read! Thank you so much for sharing! You said it - HOPE is the one thing we can't live without!

Isaiah 40:31
but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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kam
Honored Contributor (10K+ posts)
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Amoxy is the only thing that has brought you more into the land of the living??

Thanks for the words of hope. Well said as far as the brain could take in.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

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MissMari,

I often wondered what happened to you...this is encouraging to read and i am so happy for you. Forget that other thing....just follow your gut and pay it forward that's all i was doing.

Keep up the good work and Keep the Faith,

Dave

--------------------
On my journey to wellness - One day at a time.

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LightAtTheEnd
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Member # 24065

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I'm sorry for all you've gone through, and still have to cope with.

Thank you so much for the words of hope, and I wish you the best in your continued healing.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Alana
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I hope your improvement lasts much, much longer! After 15 years of being sick, you are feeling OK after only a year of treatment? What meds/supps do you think helped most?

My daughter has been sick for 3+ years and undergoing various treatments for over 1.5 yeara. She's had a few improvements but none lasted too long.

Posts: 214 | From where ticks flourish | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
map1131
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MissMari, it's [group hug] and party time. Go girl go!!!!!!!!!!!!
[woohoo] [woohoo] [woohoo] [woohoo]
Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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joalo
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Thank you for sharing your awesome news. At this rate you should be back to feeling 100% pretty quickly. You give us all hope! [group hug]

--------------------
Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006.

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Hoosiers51
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Thank you for sharing your story!

For the first few years of my illness, I was also too sick to use a computer or do basic things like make phone calls, so I can relate to a lot of your story. I was only able to use this site once I had regained some of my functioning through antibiotics.

Even then, I wasn't very functional, and since being here, I have come even further.

Could you share with us what drug(s) you feel have helped you the most? I saw KAM mentioned Amoxy. (that one was a big help to me too).

Personally, even though you say you have a long ways to go, I consider this a "progress/success" story, so I would be interested in a little of the "how." (just really briefly, what helped the most?).

CONGRATS, I am so proud of all you have accomplished (even though I don't even know you)....you have come a long way, and I know how hard that is!!!! Thanks for coming back to let us know! [Smile]

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Tincup
Honored Contributor (10K+ posts)
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Hey hey hey...

So nice to hear you are doing better!!!!

I was just thinking about you the other day... and missing you!!! I remember how pitiful you were when you came here... sorry.. but you were. Most folks are when they are as bad as you were!

And that first Christmas when you were sooooooooo depressed. So nice to see excitement in your words now. So nice!

But it was YOU who took the bull by the horns and did this for yourself. It wasn't easy. You struggled so much.. but YOU did it!!!

YOU deserve the two thumbs up right now!

I am so glad you stuck with it and finally saw the improvements.

Your wonderful post and news warmed my heart tonight. Thanks for that dear lady. Thanks a lot!

Two thumbs up!

 -


 -

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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BTW- I just found your first email to me.

You were feeling so bad at the time so my advise was in bits and pieces and I was trying to distract you from the pain and mess you were going through.

I told you to go get a bag of potatoes and take them out one at a time and name them... then put them back in the bag and later go get them and see if you could remember their names.

You were one of only a few people I knew who actually listened to that advise and did it.

Later you wrote to me and said.. "I did find 3 potatoes in the cupboard, so I did name them and did talk to them.

However, Steve kept falling over so I had to put him out of his misery by having him for dinner. Charley is very quiet. Frank is the bad spud and will be made into a voodootato soon."

[lol]

You've come a long way baby! I smile.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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MissMari
LymeNet Contributor
Member # 11274

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quote:
Originally posted by kam:
Amoxy is the only thing that has brought you more into the land of the living??

Thanks for the words of hope. Well said as far as the brain could take in.

Oh, heck no! Amoxy is what I'm on now daily as sort of "maintenance".

My case is chronic; I'm over 15 yrs with this thing.

My LLMD decided I needed to start slow with abx, starting with what might be considered a "low dose" for Lyme, since he didn't want me to have a herx that literally would kill me.

Then came the combinations of abx.

Then came switching the abx.

Then, when I could finally take it, came the "Burrascano hard stuff" (which is what I call it because for me it was very high doses).

I am fortunate that it brought me to the point that I am! At this time last year my brain was so bad it would have taken me nearly 2 hours to write this reply.

So I wish to pass this hope onto you as well!

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
MissMari
LymeNet Contributor
Member # 11274

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Yes, TinCup is telling the absolute truth: I was PITIFUL. I was in AWFUL shape, physically, mentally, spiritually, you name it.

Lyme REALLY did a number on me and my life, in every way possible.

And I did name the potatoes!!!! I didn't understand the importance of that at that point,

but later I found that I had to somehow start putting myself back together, and humor helped immensely!

TinCup, you also told me the story about the spoons, do you remember?

That at one point we had perhaps 100 spoons to be able to do what we needed each day.....and now with our illness we might have only a dozen?

And that's all the spoons we have now, and have to learn to deal with that?

I had to honestly work with that concept too.

Now, about the supplements, etc --- remember, I'm not a doctor, and this is only what worked for ME.

Please don't go running around out to the store to buy all this stuff without your doctor knowing about it first!!!!

And keep in mind that supplements are medication, which may have interactions with other prescriptions one might be taking!

First, the best complete information is on Dr Joe Burrascano's webpage for his 16th edition of Burrascano Guidelines.

(one possible link is
http://www.lymediseaseresource.com/BurrGuide2008.pdf)

There are listings of supplements he recommends that are "required" as well as for various specific Lyme symptoms.

I use (are you ready?): Vitamin B complex with C, lots of acidophilis, gingko biloba, milk thistle, CoQ10, a multivitamin, alpha-lipoic acid, magnesium, flax seeds, green tea extract, and transfer factors.

There are other supplements that are recommended, but I did not use since I got good results with the above list.

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
MissMari
LymeNet Contributor
Member # 11274

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quote:
Originally posted by DaveNJ:
MissMari,

I often wondered what happened to you...this is encouraging to read and i am so happy for you. Forget that other thing....just follow your gut and pay it forward that's all i was doing.

Keep up the good work and Keep the Faith,

Dave

I often wondered where I went too!

THANK YOU for what you did for me --- I never would have been able to make it, which means I would never have been able to make it THIS far.

Paying it forward, with your blessing.

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
mtree
LymeNet Contributor
Member # 14305

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Mari!!!!!!

Well there you are! [spinning smile]

I was hoping you were MIA because you were feeling so good [Smile]

You have been through so much....and I am thrilled to hear that things are better....

....and you are right to come back here and tell us how you are doing...it will help so many of us...including me!!!!!!!

To know that you have pulled through this gives me hope....so much hope....

I've been having a very hard time....infact I have not even been on LymeNet.....
And here this morning I go on to LymeNet for the first time in weeks and the very first thing I see and read is your post....

You made my day!! [Big Grin]

I'm so happy for you......especially knowing how difficult it had been for you....you have come so far!!!

Please keep in touch!
[group hug] mtree

--------------------
worrying about tomorrow takes its strength away from today

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Geneal
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I love your ability to share so much hope with so many.

I feel the same as you do about coming here.

God sent me to a place to be surrounded by Angels.

In my darkest days and hours, Lymenet was my lighthouse

Shining a strong and steady light to help guide my way.

I pray that you continue with improvement.

Hugs,

Geneal

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Tincup
Honored Contributor (10K+ posts)
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Hey Ms. Potato Head...

Only have a minute... but wanted you to know I didn't make up that spoon story. I've shared it with folks and noticed the other day someone posted the link to it here again.

Now that you can read and think.. you might want to check it out and also share it with others.

Glad it helped! Later gator! Gotta run!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/23864

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Dekrator48
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Thank you Miss Mari for your wonderful story which provides priceless encouragement and hope for many!

You are blessed to have mostly regained your health and to be able to help others now.

What coinfections did your LLMD think you had? Babesia, Bartonella?

I am so happy for your wellness and grateful that you shared it with us!!!

[group hug] [group hug] [group hug] [group hug]

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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MissMari
LymeNet Contributor
Member # 11274

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OK -- a few other things I forgot!!!

I WAS also diagnosed with so-infections: bab, erlych, bart, AND HSV-6 (the weird herpes thing that often indicates immune system damage and malfunction).

I was in REALLY REALLY REALLY bad shape.

What helped me most?

I had an incredible LLMD first of all. I had to trust this doctor (and that was hard because I had so many others who really were not informed and messed me up worse).

I had to trust that he knew how to treat my individual case, and that meant starting slow with the abx.

Then as I got stronger (I think that meant I didnt croak) and he started adding and changing abx and dosages that each new herx (and some of them were real doozies)

meant that another part of the Lyme was being stripped away.

Sometimes it was really bad, I swear. But I had no other choice but do as we (yes! dr and I made choices together!!!) saw fit.

Eventually 3 months ago we started the Burrascano protocol with abx and the supplements I mentioned.

We started slow --- just the B complex /C, ginko, and milk thistle.

Little by little added the others.

I have a good deal of brain/cognitive/depression problems, so we were going to go with SAM-e but never did because I am doing better on the regimen I have.

The only deviation I did from the protocol is that most of the supplements I use are generic and from like WalMart or Target.

Only the ones I cant get that way (like transfer factors) are mail-order.

This way I keep the cost to what I can afford, and fortunately it works for me.

BUT I FORGOT TO TELL YOU ABOUT THE DIET!!!!!

I also went on the Burrascano recommended diet, which is really strict with carbs.

THAT is really hard for me, and I have to admit I cannot follow it strictly, but I have cut carbs and sugars to as low as possible (I still eat fruit, grain cereal, an occasional potato (but not the ones I've named, LOL!), soy milk, and alot of yogurt!).

And for me, it DOES make a difference!

Finally, I have to say this --- I really did not have alot of hope, or faith, that anything would help me or that I would get much better.

I was in a really dark place, and I really honestly believed I never had a chance of getting out of there.

So I figured, I would do all of these things, and if they worked, great; if not, what did I have to lose?

And I guess it took time for the effects of all those meds and supplements and diet and just letting it happen, for it to happen.

I had to choose to do that.

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
   

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