posted
we don't hear enough stories of people getting rid of symptoms!
i know that many of those "cured" probably don't visit this site anymore, but we just have to know of some that were fixed up by treatments!
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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posted
HI: Well I have one for you... Was bitten Last July 22, 2007. Sick 8 days later, very sick until Mid Dec (Did the abx route off and on due to allergies to most abx) Dec 16 decided to say ENOUGH and went off all abx.
As of today I feel 99% better, I would never know I have/had lyme...Just got back from my delayed honeymoon (Due to the lyme and being so sick) in Rivera Mexico had an outstanding time, never once did I feel sick...
So yes there is hope, don't ever think there is not...I'm proof...
Julie
-------------------- Julie Posts: 61 | From Lake Villa IL | Registered: Aug 2007
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posted
HI: Well I have one for you... Was bitten Last July 22, 2007. Sick 8 days later, very sick until Mid Dec (Did the abx route off and on due to allergies to most abx) Dec 16 decided to say ENOUGH and went off all abx.
As of today I feel 99% better, I would never know I have/had lyme...Just got back from my delayed honeymoon (Due to the lyme and being so sick) in Rivera Mexico had an outstanding time, never once did I feel sick...
So yes there is hope, don't ever think there is not...I'm proof...
Julie
-------------------- Julie Posts: 61 | From Lake Villa IL | Registered: Aug 2007
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daise
Unregistered
posted
Hi nyjohn,
I had a huge bulls-eye, didn't know it was Lyme, and had no signs or symptoms.
Nine years later SUDDENLY I had Bell's palsy, severe muscle pain, arthritis and the cognitve stuff, and more--all within the hour.
Shortly after that I got severe head pain, 24/7, and it's been that way ever since, although the head pain has lessened by a lot, with Lyme treatment!
But here's what's special: All of my signs and symptoms have lessened by a lot, due to prolonged Lyme treatment. I was 85% better overall and 90% better on fatigue.
I was ... I now feel terrible! That's because I'm being treated for babs and am in herx for that. After that's done, I'll go back to bart treatment and more herxes.
I am very pleased with treatment!
But it takes a long time ... for chronic Lyme treatment.
posted
Nyjon, I am at a lyme clinic that has a great success rating in Kansas, City.
There are about 28 patients on IV's along with heparin, antioxidants, fluids, glutathione, and other supporting supplements.
I have been at this clinic for 42 days now and have seen 7 patients get well and go back home, and one of my friends was a patient there as well and she is well now after being sick for 20+ years.
This clinic has the highest success rating and they are also the strongest/most aggressive with lyme disease in the country so put 2 and 2 together and you will realize you have to go after this disease really hard!
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I'm 98% sure I was born with this disease and wasn't diagnosed until I was 34-years old.
A list of my symptoms: clinical depression stomach aches (kid trying to get out of school) fear of having BM's (as a child) accused of being a hypochodriac/faking/weak constitution over-sensitivity EXTREME anxiety, SEVERE OCD by the time I was 8-years-old allergies swollen eyes codependency on Mother (anxiety) fear of leaving home (anxiety) homesickness (anxiety) mono thyroid problems mytral valve prolapse of the heart horrific mind-blowing two weeks worth of PMS (every month for over a decade) mind blowing stiff neck (like in a vice grip) freezing feet, hands and nose even in CA & FL severe lower back pain (had to take steroids for my "slipped disk") herpes simplex on my chin in a clock like circle? skin tags conjuctivitis bladder control problems melasma of the skin chronic insomnia extreme daytime fatigue rage impulsivity "psycho" risk taker crazy one in the family; black sheep promiscuity heart palpitations acid reflux extreme stomach pains/GI Tract issues chronic sore throats thrush (several times) frequent vomitting dehydration horrifying panic attacks sensitivity to light, noises, smells clusters of plantar warts all over heels of feet severe cystic painful burning acne germ issues compulsive washing/bathing tmj/teeth grinding clumsiness, dislocated knee from swinging a bat self-hate weird reactions to food...swollen lip suicidal thoughts hopelesness, envy, jealousy due to low self-esteem fungal toe infections soft teeth (14 cavities first check up as a child) roasecea of the skin anorexia/overweight, yo-yo up and down body dysmporphic disorder night sweats delusional thoughts ritualistic behavior horrific headaches severe/persistent cystic back acne reclusivity/turning off phone/towels over windows overdose of xanax actions without thinking of consequences smoking cigarettes and other incapable of trusting or being truly intimate on an emotional level inflexible/afraid of change intolerance to alchohol self-blame for almost everything irreverence alone/emptiness due to tortured brain
With treatment, I would guestimate 90% of these symptoms are either completely GONE or very minimal and livable!!
I had 6 mos of IV Rocephin plus another year of orals and that put Lyme in remission for 6 years and counting.
Just discovered I had Bartonella last Fall, treated for 6 mos and am now in remission.
I am considered a LATE STAGE LYMIE and I am now exercising 3 times a week, driving, taking care of myself, walking my dogs, cleaning my house, etc. Soon I will be looking to get back to work.
My brother and sister-in-law (also late stage lymies) were treated for Lyme & Babs for 18 mos are now, literally, running MARATHONS.
THERE IS HOPE!! DO NOT GIVE UP! People have walked away from their wheelchairs. There is a whole post on Success stories at top of medical and/or general forum.
posted
I'm not in the success stories yet because I'm not all the way where I want to be, but a little over a year ago I was bedridden from this. I could get up sometimes, but needed help to go anywhere.
My dad told me I should get a cane, but since I have six kids and couldn't leave the house alone, I already had six of them.
Today, I drove my daughter to the ortho, went to Starbucks while I waited for her to get her braces on, picked her up, went home, fixed lunch, went to the pool, went to the gym, went to the grocery, cooked dinner, went to the pharmacy .... FULL day! And I still feel fine!
A year ago, I could go no more than one place in a day, and after that one place, I was lying down the rest of the day.
I'm not finished with treatment. I still have flare ups with fatigue and some pain. I still have insomnia. But MOST of my symptoms are gone.
It does get better with treatment. I contracted Lyme 35 years ago and was undiagnosed until Dec. 2006.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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daise
Unregistered
posted
Hello Clarissa,
I'm floored at your strength. I look at what you've had to wade through your whole life ...
Fantastic!
Some people define the term inspiration, and you're one of them.
You're a trooper, too! 35 years, then you were bedridden and now:
quote:
Today, I drove my daughter to the ortho, went to Starbucks while I waited for her to get her braces on, picked her up, went home, fixed lunch, went to the pool, went to the gym, went to the grocery, cooked dinner, went to the pharmacy .... FULL day! And I still feel fine!
I'm very happy for you. Look how far you've come! That's a glorious success story and you're not even finished yet! Good for you!
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I love hearing from people undergoing successful treatment! Byron, keep us posted on the clinic. And can you tell us how the doc who runs it got her training on how to treat Lyme?
Posts: 3528 | From US | Registered: Apr 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Both Me and my husband have Lyme and co-infections - I was gravely ill to the point of being hospitalised for months after 7 years mis-diagnosed, my husband was poorly physically and had bad cognetive issues.
He is now 85% better and leads a nearly normal life
Me - I was bed bound permanantly, at my worst for 2 years I could only just crawl to the toilet. Now I am up every day and potter around all day and can drive my car to the local shop, still a very long way from well but my LLMD has given me some life back and I just know it will get better and better as I improve with every few months that pass.
i was already trying to recover from 2 surgeries, after 18 mos of misdiagnosis for torn abdominal muscles, when i was bitten.
so it was a whole new tragedy on top of what i already had going on. devestating.
i had given up the idea i would ever do any sports again. as of now i am even afraid of my yard, there are ticks all over the place where i live.
and these symptoms are rough, esp when your heart beats all strange.
its good to hear the success stories, they put me back into a positive place. i see so many scared people on this board, all desperate for answers and releif. i am one of them and knowing that people are doing things like running marathons after being so ill is very inspiring.
thanks again john
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
quote:Originally posted by CD57: I love hearing from people undergoing successful treatment! Byron, keep us posted on the clinic. And can you tell us how the doc who runs it got her training on how to treat Lyme?
She was originally a pediatric but went into chronic illness and has gained many ph. d's in other branches. Now she treats CFS, Fibro, MS, ALS, parkinsons, ect, ect. About 99% of all the above listed are caused by borrelia, bart, babs, myco, rocky mountain, viruses, yeast, parasites, ect and she treats it all.
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Rianna: Great to hear about the vast improvements with you and your hubby! Awesome.
Daise, you'll get back to that happy/healthy place. I've accepted that life will still throw me some stressors/triggers that may cause flares or relapses so we must treasure each and every good day we have!
Healing thoughts your way. You, too, NYJOHN! Hang in there and go read some success stories.
posted
I have a success story. I was bitten by a tick in 2000, got Lyme with meningitis. I was treated with a month of IV Rocephin and thought I was cured (although I couldn't parallel park anymore due to lack of range of motion of my neck).
Three years later (2003), another tick found its way to my tick-tasty body, and all these symptoms of chronic Lyme came out.
Luckily (very luckily), I knew what it was. Tick = myalgias, brain fog. No brainer, right? Not for doctors.
Anyway, I found an LLMD pretty quickly and was on a total of 2 years of oral antibiotics until I found out I was also diagnosed with Addison's Disease. Once the Addison's was being treated, I was able to fight the Lyme, and I could get off the antibiotics.
I am symptom-free today except for some remaining short-term memory impairment. I can live with that, as long as the pains and sick feelings are gone.
Susan
Posts: 39 | From Massachusetts | Registered: Jul 2006
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daise
Unregistered
posted
Susan,
Good for you! That's outstanding ... especially having Addison's.
I've come across several on this board with Addison's.
I'm becoming more and more convinced every day that Lyme can lead to Addison's. I belong to an Addison's board, and many people have Lyme symptoms and have picked ticks off of themselves. So I send them here.
Susan
Posts: 39 | From Massachusetts | Registered: Jul 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
[QUOTE]Originally posted by ssmillik: I'm becoming more and more convinced every day that Lyme can lead to Addison's.
DEFO: I was diagnosed wih addison's for 3 years had non responsive ACTH Synethcen tests and no cortisol output whatsoever - when I finally got my lyme diagnosis and had 5 months of Rocephin my endo could not beleive his eyes, I had started to produce cortisol was responsive to an ACTH test and still am to this day.
My adrenals are still underfuntioning but I now take only minimul dosages of Cortisol and Florinef - My LLMD says the spiro's love living in the adrenal glands and he has seen Addisons sufferers (true addions I mean not jut low adrenals) totally reverse.
tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hi nyJohn,
I'm doing much better, but when trying to wean off the Mepron, seem to have some symptoms return (waking up with stiff neck, etc.)
Bit in 1988, started treatment 2002. Had all the typical neuro lyme/babs, etc. symptoms. Including the neurally mediated hypotention. I couldn't walk ten feet without passing out.
That symptom is like 95% gone. Don't have to take meds for that anymore.
Really got a lot of improvement after being on the Mepron/Zithromax/Artemisinin for a while.
Now I have been able to work two half-days a week for the last six months. That may not seem like much, but before starting treatment, I continually woke up feeling like I had been run over by a truck.
I still need to rest a lot, and pace myself. BUT, at least it is progress
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Is that you Tabers?
WOW! Huge congratulations to everyone!!! Posts: 7052 | From Colorado | Registered: Mar 2003
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daise
Unregistered
posted
Hi Rianna,
Adrenals. Ugh! I had an ACTH 3 1/2 years ago. It showed nothing abnormal. Yet I had a little cortisol hump. I did cortisol testing elsewhere by urine.
I finally got the money for a 4-spit saliva test of cortisol and I tested OK. Well ... my cortisol was on the way downward and I tested when it just happened to show sort of normal.
Last August or so I retested by saliva test. My morning cortisol was so low it was literally off the chart. I've been taking low dose cortef ever since.
It's been a big help. Yet, I've wondered if I may be getting Addison's.
You wrote: "My LLMD says the spiro's love living in the adrenal glands and he has seen Addisons sufferers (true addions I mean not jut low adrenals) totally reverse."
True Addison's reverse? Thank you for posting that. It makes me feel better.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I had lyme for at least 20 years. I'm well after about a year of combination abx, homeopathic, complementary, and alternative treatments, and six months of post treatment rehab.
Now I'm working out, playing hard, renovating and landscaping.
I also had Addisons. I was on 35mg a day of Cortef, just to be able to stand up out of bed. Now I'm down to 20mg on a hard workout day, and progressing.
I still experience some fatigue, but it's more physical now instead of neuro exhaustion. No more pain at all, except mild issues from a compressed disc, not lyme related.
I'm still fighting off a non-candida systemic mystery fungal infection, but making good progress. (Probably the cause of the fatigue.)
As far as lyme goes, I'm all better. I just like to still come in here and visit old friends, and offer some encouragement.
Lymenet kept me alive, and I still need the good company of people who know the unspeakable horror that nobody can know unless they've been there.
Byron, do keep us posted about the clinic in Kansas City. That's great news!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Darn, the antibiotics didn't help my Addison's. Not a bit.
Again, I asked my endocrinologist, ARE YOU SURE THERE'S NO CONNECTION?? She said, "no connection". I'm sorry, I don't buy that. Chronic infections such as TB, fungal infections, and syphilis can cause Addison's. Why not Lyme? I'm seeing here so many people with adrenal problems!
I agree ... Lyme causes a lot of cortisol problems ... and even Addison's, which doesn't happen all that often in the general population.
I've been reading about JFK and his Addison's. He had head to toe Lyme-like signs and symptoms off and on his whole life.
How had he managed? How'd he do it?
Then his brain disappeared. His neuro Lyme brain????
_______________
Sorry, NY John. I'm getting off the subject. Don't worry--nobody is going to run off with your brain, although it can seem like it at times ... I know ... I know ... we all know.
"Where'd my brain go?"
NYJohn: Stay with treatment. Just stay with it ... through all the herxes, stay on your path and you will prevail!
People often are raw and honest on this board. They need to be.
Some have had Lyme for many years or decades, and that may have caused terrible trouble. They depend on this board for a lot of things.
They come here for help.
Some people have no insurance and have to treat themselves--they depend on information on this board.
And this board is for peoples fears, as well. And ranting.
Most do get remarkably better, but it takes a lot of time, if it's chronic Lyme.
Stay with us. Have you imagined yourself, as you were before, once again being physically active, doing what you want to do? Maybe try doing that.
Seems nothing happens unless we dream it ... or imagine it ... have some idea of it ... first. Then hold that like a candle in front of you! It could help you down the line when treatment may seem very slow to work. Very s l o w.
You could look back and see where you've been--been there, done that and you see you've improved--and you'll already have formed your image of physical exercise that you will do in the future.
Then, re-commit to your image of yourself in your future.
Remember, treatment takes time--it just does.
And we're all different: differing signs and symptoms. Different ages. Different priorities in treatment, due to the state of our bodies. These tick borne illnesses affect us differently.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am still a success story in progress.
After years of untreated lyme and babesia, I was virtually incapacitated with severe neuro, cardiac and physical symptoms and could not work anymore. I felt that I would not live long before being diagnosed and starting treatment.
Now after two years of non-stop treatment with a good llmd, multiple abx and anti-microbials, I am so much better!
I usually have alot of energy. I can sleep much better and think better. I am back to work at a very intellectually and physically demanding job. It is not always easy, but I can do so many things again that had become impossible for me a few years ago.
And I keep getting better the longer that I am in treatment. That is the number one lesson for me, it took a leap of faith to sustain long-term treatment for months and years.
Much of my progress has been in the last few months. If I stopped abx at 8 months, or 12 months, or even 18 months of treatment, I would not be as well as I am today. My major breakthroughs of horrible symptoms that I had for years finally receding came after 18 months of non-stop antibiotic and antimicrobial treatment!
It can take a long time for treatment for folks like me, with untreated tick borne diseases and lyme for many years. I am still not 100% all the time, but I know treatment is working and I am extremely grateful for that. I hope you get better too.
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CD57
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Member # 11749
posted
Yay! Vermont, what has been your protocol?
Posts: 3528 | From US | Registered: Apr 2007
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daise
Unregistered
posted
Hi CD 57,
But we're all different. There is no "one size fits all" protocol.
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Was bitten Last July 22, 2007. Sick 8 days later, very sick until Mid Dec (Did the abx route off and on due to allergies to most abx) Dec 16 decided to say ENOUGH and went off all abx.![[Big Grin]](biggrin.gif)
DO NOT GIVE UP! People have walked away from their wheelchairs. There is a whole post on Success stories at top of medical and/or general forum.
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