posted 04 January 2004 15:47               

posted 27 November 2002 15:25

I think Lou is right-- people get better, and go about their lives, so that we don't often hear that side of things. I'm still around, at least from time to time, because I remember how much the encouragement meant to me when I got here.

Here's mY story. It is still unfinished, but so far, it is one of the good ones:
I trace my Lyme back to 1987, but during the years I was diagnosed with mono, suspected to have MS, depression, finally diagnosed with CFS. But I kept getting sicker.

A year ago I was so sick I was frightened. I had been going downhill for years, and it was accelerating to the point I had become incapable of living by myself, was almost entirely housebound, and increasingly bedbound.

Sometimes it was all I could do to take care of my immediate physical needs. I had severe tendonitis, ibs, was unable to be around more than 2 people at a time, watch tv, or read any but simple things because I could not concentrate. I lived in fog and pain.

I finally was able to convince a pcp to send my sample to Igenex-- some of you long-timers might remember me from then, because it was you-all who guided me through this, and the next steps of finding an LLMD.
I started treatment almost exactly eight months ago. I have been getting steadily better since, though of course with all the ups and downs that goes with recovery from Lyme (and, it turned out, a couple other TBDs).

Here is where I am now:

Monday evening, I participated in a communtity event with over 100 people in a school gym, the culminaton of 4 weeks of small group meetings. I talked lucidly with dozens of people, (cheated and ate a cookie), and volunteered to work on a task force to create a community recreation program and other community-building projects. For the first time in many years, I feel I can make a commitment to doing something like that, and be able to follow through.

The next morning, I babysat my granddaughter while my daughter went to an emergency dentist appt and did Thanksgiving shopping. I crashed in the afternoon, but was still able to stay up to watch Frasier on tv, and then keep watch so that the delinquents next door didn't throw things at our house to wake up my toddler granddaughter (sadly, a routine occurance).

Today I did laundry, folded clothes, played with my granddaughter, gave my son-in-law a hard time, wrote down all my old Thanksgiving recipes for my daughter. Now I am having my regular afternoon rest (still a must).

Tomorrow I will help my daughter prepare a quiet, traditional dinner with just my family, and then get lots of rest, because Friday I have a long drive to see my LLMD.

This all amazes me. It is far more than I ever expected. And it keeps improving. I am nearly pain free except when I herx. The herxes are much lighter-- I have not had one in weeks that put me in bed for the day, though I felt ucky.

I read the paper clear through daily, subscribe to several magazines again, which I read a bit at a time, because I am still in the process of rebuilding my cognitive abilities. I manage the VtLyme list, maintain two websites, and am beginning to write essays, fiction, and poetry in dribs and drabbles again.

I go for walks, which are getting longer, occasionally break into a run just for the heck of it. I chase my granddaughter through the house playing. Once a week I do "light" shopping. My family and I go on regular outings, and though I do get tired, I no longer have to spend two days in bed recovering.

No, I'm not completely well, yet. And I still have an occasional out-and-out sucky day. But I am living my life again, making friends, reaching out into the world. I am no longer isolated inside my illness.

I don't know if I'll be able to go back to work, but it is something I dream about, and am beginning to think it might be possible, if only part-time. We'll see.

In ten days I'll be 60 years old. What joy I feel that though I've lost my middle years, I have a healthy and active old age to look forward to. And next June my sixth grandchild will be born. And I am beginning to be able to be the kind of grandmother I always wanted to be.

I also still need you all. This is a huge transition in my life: from invalid to reclaiming health, and I need to share that with others who are also going through this process, with all the hopes and uncertainties it entails. I still experience both of those feelings, and everything in between. But, more and more, simple gratitude that after all those years, and all that loss, I am recovering, and have a life again.

Love and hugs to all of you,
and especially-- thanks!

Dayle Ann

posted 04 January 2004 16:02               

posted 24 July 2002 19:40

Some llmd's will say that you can walk away from this cured, others just say you get the numbers down to a level your body can manage...either way a positive mental outlook is the best weapon (along with everything else you and your doctor decide to do) dont ever think you cant get over this..keep fighting..I have come a long way and will soon go off abx's .. The bottom line is no one knows for sure but I know people who are symptom free and off drugs...thats all any of us really wants...greg

posted 04 January 2004 16:03               

posted 22 August 2002 13:47

I started treatment the day i found my rash. I had eight weeks of amoxil in dose amt suggested in Dr Burrascano's guidelines and symptoms didnt go away until seventh week. This month is two years since the bite and I have had no symptoms since. Dont know if its gone for good so i am watching. If you arent seeing an LLMD, please ask for the name of one in your area. Someone here will gladly give you their names. You only have one chance to treat it correctly early! I also suggest you arm yourself with as much knowledge as possible about Lyme.

Best of Luck.

posted 04 January 2004 16:05               

posted 06 June 2003 13:01

I would say that I am in remmission. I have been symptom free and off of meds for over 4 months now.

My main drug of choice was Zithromax. It gave me my life back.

But I also tried other antibiotics. I am severly allergic to Doxy so that was not an option. I have always done orals and never iv.

I was infected in April of 1999 and misdiagnosed with a spider bite. I got treatment almost a year later. It took about 3 1/2 years to get better.

I dont know if I am totally cured (I dont know if any of us truly know this) but I do feel alright.

Kara

posted 04 January 2004 16:07               

posted 06 June 2003 16:49

After having Lyme/Babesia for 27 years,
I think I'm in "remission".

Diagnosed last October - and receiving
treatment for Lyme/Babs thru the winter

I feel better than I have in 25 years (I'm 54). I have no pain anywhere, and ALL my symptoms are gone except some inflammation inside my right eye (and that's 70% better than it was).

I'm not positive ALL the bacteria is killed, but we live with a myriad of bacteria and viruses anyway and everything's balanced by the immune system.

I'll be happy if it stays repressed the same way the other microbes in our bodys are.

Barb

posted 04 January 2004 16:13               

posted 07 June 2003 17:11

Yes, I have my story is long but here it is for you.

I am 100% today!!

About three years ago(or longer) I got lyme disease and didn't get a rash and my symptoms came on slow because of my immune System and I didn't know I had lyme then.I am on Rocephin IV treatment and it is working great I am almost 80% better and on for 12 weeks only I was orals for three month's and no improvements at all.

I went to this great Doctor in nov 2000 and I am on the way to recovery thanks to him!!!!

I have lost 60 pounds (I was a little over weight when health I am 160 but was like 190 when I got sick) because of this disease and it was no fun at all I was down to 130 pounds because I was throwing up everyday and the other doctor said it was stress!!!!!!

some of my other problems are memory and fatigue,dizziness,confusion,difficulty thinking,difficulty concentrating and reading slurred speech, mood swings, irritability,
feeling as if Iwas losing my mind,insomnia, nausea, upset stomach, sensitivity to light,diarrhea,numbness,unexplained shaking,balance problems....

listen to these people they know what they are talking about!!

posted 04 January 2004 16:50               

They are all showing up with today's date in the dateline -- which doesn't coincide with the contents of some of the stories which contain various dates within them.

This only matters if someone is trying to figure out how long it took for a particular person to turn around, but to someone who is feeling frustrated and hopeless, then those dates really do take on a lot more significance.

You're a smart gal with lots of computer skills, so I'll bet you'll be able to fix this minor glitch quite easily -- if it's not asking too much.

posted 04 January 2004 17:11               

Isn’t that JUST like a “Mom” for you???

Never satisfied!

Could you NOT have suggested this BEFORE I was finished?

After reading all of these stories of hope…
I was just going to go take a little nap and dream of the future…after TBDs.

Now…she wants MORE!?!

OK…OK…
“minor glitch”

Since you did ask me politely and complimentary at that…

I will go back digging and TRY to find all of the dates.

But first…

A little rest is required right now for me.
(sorry, but my hands are shaking too much at present)

PS…
Thanks for your “Sweetheart’s” Story

posted 04 January 2004 17:36               

Of course, you should take a break. Take as long as you like.

Sorry I didn't "thunk" of it sooner, but having an accurate dateline for each story really would add a nice little detail and finishing touch to such a wonderful topic.

posted 04 January 2004 20:46            

Thanks so much for posting these stories. We've needed something like this for a long time.

posted 04 January 2004 21:50            

Bigs hugs to you....Beverly

posted 05 January 2004 06:32               

I went to bed early last night, and when I woke up this morning, all the articles now have datelines to indicate when they were originally first posted.

Now, though, I guess that as a "Mom" I need to chide you again -- for overworking too much, instead of taking care of yourself first.

You really should have rested longer, you know that, don't you?

Thanks ever so much, Melanie. Nice job, well done.

posted 05 January 2004 08:37               

I know that soon, we will each be adding our own stories of success to the rest.

"Hope has conspired with the wind...

and blown away

the demons of despair" -Maya Angelou

posted 07 January 2004 23:32            

One thing that I cant get over, is what a powerful and wonderful group of people here who give prayer support to patients and their families, who give "love" support all the time, and go the extra mile....even when they dont have the energy to do so!

I think the best success story in all of this is the profound relationships that are being built, and to know that we will always and forever be grateful the the members of this board regardless of the outcome.

posted 07 January 2004 23:42               

The whole idea here of posting Success Stories is to give a glimmer of hope to folks who are first starting out on their healing journey when they are so scared and almost afraid to dare to hope. Stories of courage in the face of overwhelming odds which have brought about even partial success, such as theirs, will be appreciated by these individuals.

With that same spirit in mind, I decided to go ahead and write up a first "rough draft" version of our daughter's story -- which I expect to amend probably many times before it's finished.

posted 19 January 2004 08:16               

I figured I could add this myself. I'll make it short as possible.

I don't know when I was bit by a tick. I could have been bitten zillions of times and not known it. I did have a tick on my head when I was 12 that mom pulled off. Sincerely though, I think

I was reinfected the time I not only adopted a dog from the local shelter, but also when I went camping just a week after doing THAT. That is when I became very ill. I actually have a picture of a tick that I took

while I was camping. Hey, it was blue and gray and I was amazed at it- and had no clue it was a tick. That was in May of 2002.

From May 2002-September 2002, I was plagued with mere annoyances, truly. Bronchitis, laryngitis, fluid in ears, ear infections, etc. One antibiotic would be given and the next infection would set in.

In september of 2002, I had to go the woman doctor because of severe pain in the groin area. I was tested for everything under the sun and given a Zpac of Zithromax "just in case" even though everything came up neg.

I didnt take the Zpac right away. It actually set on my table for about a week. One morning, I woke up, felt AWESOME and actually exercised, etc. I had more energy than I knew what to do with. I figured what coudl it hurt if I took that zpac?

I took it and went to work. Four hours later, I had vertigo, a severe migraine, disorientation, numbness going down my left arm, and confusion. Er said "inner ear infection they couldnt see". Family doc said "viral meningitis". Both negative.

These symptoms lasted for two weeks before they ended, only to come back a month later with a vengeance. I had a migraine, and vertigo for five months straight, every second of the day. I had so many tests done, my family joked I was radioactive.

I was misdiagnosed with a tumor, migraines, ear problems, and finally, when all those showed negative, depression, anxiety or some other "neuro problem of unknown origin".

By the time I was diagnosed, my migraines were so severe I was having nose bleeds, was still experiences on and off vertigo although it did subsided on its own a bit, apnea, heart problems, some joint problems, brain fog, spaceyness ( worst for me) and many many more symptoms. I lost 30 lbs and couldnt get out of bed. I dropped out of college and quit my job, only so I could "sleep away my life". I didnt want to live but I didnt want to take my life either.

After 9 months of treatment, I no longer have those symptoms unless I am herxing. I was with a former LLMD who completely missed bartonella adn babesia. Since being with a new LLMD, I skyrocketed to back to health.

Im back at work and just signed up to take classes again so I can finish my degree. Im no where near done. I still have different forms to combat, and yeast to battle and art testing to see what else I am harboring. IN the meantime,

as long as I am not herxing, Im one happy person. I slid by the past two months without any exabberation aroudn the evil womans time. I propose that that is also a very good sign.

I can drive again, and play with my kids.
The herxes are still pretty strong, but only last a day to three in comparison to the 11 to 13 that they used to. Still strong, just less duration.

Ive used NOTHING but abx and rife.

posted 19 January 2004 14:41            

A year ago, I could not move my left arm due to synovitis and multiple joint pain that kept me awake at night. I often had to retreat to bed from fatigue. I could not walk up my stairs without extreme effort. I had the full gamut of neurological involvement, from insomnia and cognitive processing problems, memory loss, hallucinations, psychiatric symptoms looking like PTSD, agoraphobia, panic disorder, and depression, shooting pains, facial and ear pain, hypoglycemia at coma levels, and much more.

Today I can walk for miles, ski for hours, do household chores, perform my work, and everyone who sees me remarks on how well I look. I would say I am 85%. I still have neuropathy and have to take anti-seizure meds and Mobic for inflammation. I have occasional memory black holes and word-flipping errors when stressed. I am on my third round of orals, but no anti-depressants, and my mood is just fine, thank you.

I went undiagnosed for four years, and when I finally came to Lymenet and saw my same symptoms being discussed by many similarly afflicted, I knew I had found the culprit. I went to a LLMD, told him about my big red rash that I once thought was insignificant. He took a history of my symptoms, ran tests or looked at recent ones done by others --Western Blot, PCR, MRI, SPECT Scan, echocardiogram-- all confirmed my diagnosis of neuroborreliosis.

I am not cured entirely, but the level of my progress allows me to resume nearly a normal life--doing what I enjoy. I am not quite up to driving speed, but someday soon, I will be, I think. I tend to think I will have to manage this for life, that I will never be 100% "safe" in thinking I am cured. But if I can manage it at this level, I will continue to be a functioning, tax-paying member of society again.

posted 16 February 2004 18:00              

Katydid
Frequent Contributor

Posts: 1727
From: El Paso, Texas
Registered: May 2001
posted 16 February 2004 11:53 Hi everyone,

I'm doing well these days after a long long haul. It scares me to post this because it always seems that when I brag about doing well, I have a little set-back. But I'm going to take my chances.

I was bitten by a tick in late 1993 and have been sick since. Doctors didn't know what the multiple EM rashes indicated, unfortunately, so I didn't get diagnosed until 2000 after multiple positive tests for Lyme, Babesia, Ehrlichia (HME). I'd had cancer treatment in 1997 which crashed my immune system and allowed these infections to flourish.

A combination of antibiotics and heparin injections, and complementary modalites including Rife and FIR sauna and energetic medicine have helped me return to a place of feeling better than I have in years. I don't consider myself "cured" --at least not yet-- but I feel really good.

My white blood count has returned to a normal level after being abnormally low for the last six years -- and I've finally begun to regain weight and am now back at my old pre-illness "fighting weight". My oncologist was pleasantly surprised at my last couple of check-ups by both of these events.

The things that helped me most but not necessarily in the order of importance:

1. 4 months of oral doxy (perhaps targeted ehrlichia and borrelia)

I took several other antibiotics including IV rocephin (4 and 1/2 months) but they just didn't seem to help at all.

2. 9 months of heparin injections.

It didn't seem to be doing much during the treatments and I wanted to quit the whole time I was on it. My patient LLMD listened to me whine and encouraged me to stay on it. Boy am I glad he did.

Unbelievably, it seems to have cured a long-standing chronic gastrointestinal inflammation that contributed to my overall illness. This wasn't what I expected but was a tremendous boost to my health and helped me avoid major surgery. There is information on the internet about this effect of heparin if you are interested -- just search for heparin and crohn's or ulcerative colitis.

3. Clindamycin and quinine and artemesinin -- apparently, babesia was a big problem for me because I started feeling better almost immediately. Mepron and zith were less effective or so it seemed.

4. Rife -- I was skeptical when I started this but could tell from the first session that it was helping me.

BTW, I'm going to be selling my Rife-Bare device and portable FIR sauna in the very near future so if anyone is interested, give me a holler and I'll give you a shot at it before posting it on ebay.

5. Antioxidants and flavanoids of varying types and shades (eat your veggies and fruits!)

6. Various types of energetic medicine including Healing Touch (like Therapeutic Touch), Qigong and TaiChi (helped with balance problems if nothing else) and other hot topics which I want go into here because I don't want the thread to turn into a free-for-all.

If anyone has questions about any of this just post or email me. Healing wishes to all of you!

posted 16 February 2004 20:03               

I will keep this very short and sweet.

Untreated, one year plus.
Treatment, a good part of a year.

Competely cured of all Symptoms.
Off abx over one year.
I attribute at least part of my recovery to abx, mental attitude, rest, diet,
supplements, mercury removal, detox, working out when well enough.

Regards, Jon

Keep the faith

posted 17 February 2004 00:28               

Great Idea to give others hope!

Most here know my story, I'll keep it short.

Aug 2002 DX with Lyme. Chronic Lyme.

After 16 doctors and many treatments......

July 2003 I have been off ABX & Fargmin shots.

I still watch my health, take vitamins & Enzymes.

I work anywhere from 10 to 14 hours a day.

There is life after Lyme.

There is not one set of rules to get your health back.

Faith,hope and.....Determination in what you know of how you are succeeding or failing will take you to the next step.