Lyme Disease Support Group

My 24 year old niece has suffered from Chronic Lyme for over 13 years, but wasn't clinically diagnosed until 3 and 1/2 years ago.

I was 17 when she was born, and loved her as if she were my own. We are more like sisters, than Aunt/Niece.

So, that being said, I hope to convey the passion, to you, that I have for her and to help people with this debilitating disease, through public awareness and education.

As Megan went through high school, we watched her go from a brilliant, vibrant teen...cheerleader, Homecoming Queen, High Honor Student with a Full Scholarship to ANY Florida school...to a bedridden, disabled, young adult in a matter of 3 years. It was heart wrenching.

We live in Florida, where Lyme "doesn't exist". So, after over 15 physicians, telling her she was "crazy", "seeking attention", suffering from "psychosis", addicted to pain meds, "depressed", "anxious", among numerous other forms of "diagnosis", she decided to travel to Hermitage, PA, to a Lyme Specialist.

She began ANOTHER excruciating round of high powered antibiotics. Her body became so weak, she couldn't tolerate the meds. So, she began to go without...only taking the pain meds, because without them she couldn't bear to even stand in the shower, or go to the bathroom, alone. She couldn't eat, from the damage the antibiotics were doing to her stomach.

We were all suffering not only for, but WITH, our beautiful Megan. Her physician told her about Hyperbaric Oxygen Treatment.

As Lyme sufferers know, Insurance doesn't cover treatment for this horrific disease, a majority of the time. Her physician expressed his concern of expense for the treatment. However, it was nothing compared to the amount we had already poured into her diagnosis and prior treatments.

So, on June 3rd, we had a fundraiser...in our TINY town of 5,000 people and raised over $10,000 in one day. The other $5,000 came in from donations stemming from the publicity of the fundraiser and word of mouth. God was so good!

In Mid-June of '09, she flew out and received Hyperbaric Oxygen Treatment, at a Specialty HBOT Facility in San Diego. After 40 consecutive treatments at 2.8 ATA's, and a 5 day booster 2 weeks later, SHE IS NOW LYME FREE!!

Please let me share her story, and the benefits of HBOT, with you! She wasn't on antibiotics, at the time of treatment. It's not the meds that treat the disease and kill the bacteria. It's the pure oxygen environment.

It has to be administered at the correct ATA's (Atmospheric Pressures) and for the correct length of time that coincides with your individual illness. Everyone is different, in some respects, but nevertheless, Lyme is always the same bacteria. Therefore, treatment is commonly given in the same amounts, to ensure it's effectiveness.

Most facilities and physicians are not as aggressive, as they need to be, with this bacteria. It is so sneaky and seems to, almost, have an "intelligence" of its own. The bacteria cannot survive in this pure oxygen environment, so it kills it...KILLS it!

Go to www.hboinfo.com and click onto the Lyme Link. Scroll down to "Megan's Story", and "Why she travelled from FL to CA for treatment"...That's my beautiful niece, who now, has her life back!

I have the priviledge of living across the street from her. I, now, get to watch her walk up and down the front steps, walk over to my house, play with my babies, drive her car, and live her life, AGAIN!

Last year, at this time, I would literally sob as she couldn't even walk down the 5 front steps of their home. We would pick her up, in our car, to drive her to our house across the street.

She missed numerous family holidays and events, including her own sister's high school graduation. She has been where you are! But, there is HOPE!!

Don't give up! There is help! Lyme Disease has been pushed to the back burner for many, many years, and it's time to educate not only our country of the fastest growing infectious disease, but the whole world of this epidemic!

We can do this, if we become passionate and pro-active, about helping the victims that surround us. I weep as I sit here, reading your stories.

God has placed a calling in my heart to help people who are suffering from Lyme Disease. So, with His help, I will do what I can, to help you. God Bless! Melea

MissMari

LymeNet Contributor

Member # 11274

posted 02-17-2010 12:06 PM

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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 TINCUP, 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.

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The Bite: July 1995

Treated for things I didn't have 1995-2008

1 faint Lyme IgM May 2000

5 More negative tests

IGeneX says YES! 5 Bands! 3/16/09

Symptom total: 45

The Day that Lives in Infamy: 2/23/09

So many abx & supplements your head will spin.

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Posts: 105 | From Plainsboro NJ | Registered: Feb 2007

MissMari

LymeNet Contributor

Member # 11274

posted 02-19-2010 09:51 AM

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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!

posted 02-19-2010 10:15 AM

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.

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.

[b]

I spent hundreds of thousands of dollars above and beyone what my insurance covered.

I was misdiagnosed for 20 years.

I believe it was my own spiritual journey that kept me alive.

But it was finally going the alternative/natural route where I found any real relief physically.

As my signature says, I am now pretty normal. I think that is great considering how bad off I was.

In looking back, I don't really know how I survived. Many days I would've been totally ok to just check out. However, that must not have been the plan.

My success came about by going to an all natural clinic.

It is actually kind of funny because years ago, before all this happened, I thought totally different about medicines compared to natural remedies. I have a totally different outlook now.

The 4 doctors I saw are in Wichita, Kansas. 1 has moved on but 3 remain. I recommend them highly to anyone with lyme or any chronic condition.

I go back and get checked out for a day or two now every so often to make sure I'm still ok.

It is great to be normal.

BTW, I went back for tests to one of the doctors that said I was going to die and everything came back in normal range. And I'm currently on no medications at all.

That makes me really happy.

05/29/2010 07:41 AM

billk1018

Posts: 60

Member

I talk to people every week, at my shop, who have had Lyme and got completely better.

One guy got it back in the 70's and spent 6 months in the hospital - paralysed, priest read him his last rites.

Fully recovered and working a farm after 3 years treatment. He's 65 now and has never had a relapse...

Remember this was in the 70's before doctors really knew much about Lyme. But they did know that massive IV ABX worked and there was not yet a treatment controversy.

Just thought I'd through that out there.

I run into people almost daily who have or have had Lyme. [b]Plenty of those who recovered are fully recovered and have had no relapses.

You can get better, just no guarantee.

Bill[/b]

bill, i deleted your duplicate post, but copied it here to SUCCESS STORIES where it's ongoing SUCCESS stories. betty, leader

It's all so random chance. I run into some people whose doctors do not waste time or mess around and just give them antibiotics as soon as they come in sick, no problems doing clinical dx. Those folks are so lucky, they get better quickly.

Then other doctors can't seem to diagnosis their way out of a paper bag if you left the bag wide open and a light on and so decide either stress/psych/faking and make you loose the earlier treatment window.

If medical boards want to reveiw doctors, why don't they go after the ones who misdiagnose, causing alot of pain, suffering and by now it's gotta be in the multi-Millons$$$ in costs. Not to mention lost lives.

Do you have any more successes for teenagers?