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» LymeNet Flash » Questions and Discussion » General Support » Progress and Success Stories ... (Page 3)

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Author Topic: Progress and Success Stories ...
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Hi friends! I haven't been here in a few months. I used to post under JessJoy, but had to change my user name because I was unable to post due to computer issues.

Anyway, if you search my old posts, you can see that I was VERY ILL last year. I actually thought I was going to die a few times. Turned out I had Bart and Lyme.

After 5 and a half months of antibiotics (Levoquin and Doxy), my body started rejecting them. I turned to the Cowden condensed program not expecting much but holy crap IT WORKED!!!!I'm almost symptom free and I'm in month 5.

Most of my debilitating symptoms began clearing up after 3 months into the program. Two things that I have to avoid at all cost are sugar (or sugar substitutes) and caffeine.

I am so pleased with my progress, I just wanted to share! BTW, I get Cowden discounted by 75% due to their assistance program. Thank the gods, otherwise I couldn't have afforded it. When I indulge in sugar or caffeine and end up paying for it, I take Gaia herbs Japanese knotweed(resveratrol) and chug water with wormwood tincture (artemesia). Those 2 are my back up weapons and they really work, I pop 4 pills at a time and chase it with a quart of wormwood water.


[ 05-14-2012, 05:08 PM: Message edited by: JessieJoy ]

Posts: 21 | From Charlottesville, VA | Registered: May 2012  |  IP: Logged | Report this post to a Moderator
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Hi Everyone,

My story is very long, but I will try to keep it short -------

When I first visited this site, back in 2007, I was a hot mess.

I had gone from being an independent, respected, full-time college professor, teaching medical courses (of all things)......

to a list of symptoms that kept me on the couch, and having to be virtually led around by my aunt.

At 82 (at the time) SHE was in better shape than me!

In my gut, I knew I had Lyme. I had been through SO many tests (that shouwed nothing) and SO many treatments (that didn't work) that I knew..... I was dying.

Seriously. Not only physically, but emotionally, socially, and every other way possible.

I was fortunate to come back here and find an amazing, thoughtful woman who was so kind to contact me, and offer me some choices of some excellent LLMDs, and even call their office to set me up an appointment (yes, I was THAT bad).

She was a true angel.

I often say that I owe my life to my LLMD, but honestly, I owe HER my life as well, for being there at a moment where I had no other place to go.

Remember, I had lost everything with this illness ---- EVERYTHING: my work, my health coverage, my home, my car, my relationships. I had to declare a bankruptcy.

I was SICK --- in bed, for days on end, holding my head and wishing I could put it through the wall to make the headaches stop.

I could not remember how to drive (losing the car made no difference at that point; almost funny).

I could not remember where I lived, how to lock a door, how to read properly, how to do simple math.

I choked on my food. My feet felt like they were on fire. My ears buzzed. My joints alternated in their pain.

I alternated between 3 emotions: confusion, rage, and deep depression.

I was going to kill myself, because I did not want to live with what I had to live with anymore, and I did not want to put my aunt through any more.

In other words --- typical chronic Lyme, right?

In 2009 I started treatment, a wide assortment of abx, sometimes in combination, along with some supplements and some other alternative stuff.

(See Burrascano protocol)

It took alot of work. It took alot of changing, dosing, pulsing, mixing, and tailoring the meds until something actually worked for me.

It took borrowing ALOT of money, and accepting "pay it forward" gifts from other Lyme patients who cared about me, to get to my doctor.

It took over 2 years to get where I am today.

Today it is amazing to me that I do not wake up with a pounding headache daily; that I can think and subtract and reason and read a book a day; that I can type here on a keyboard and it takes me only a few seconds --- and there's virtually no errors.

Today I sometimes suffer from a type of grief over the things I lost in the course of all of this, and I wonder if I will get any of them back to any extent.

Today I am grateful for the people who cared enough to help me.

Today I am telling any of you out there who are so sick with this illness, and sick OF this illness, that I am one that was not really expected to make it.


But I did. And I send you hope that you will too.

Get yourself a GOOD LLMD who listens, and will work with you as a part of a team effort.

Best to you,

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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Topic: I made it!!!!
Maryland Mom
LymeNet Contributor
Member # 2043

posted 09 May, 2012 02:13 PM
Over the years, I've heard so many people asking, is there any hope of full recovery from chronic Lyme?

It is to those people that I write this. At about this date in the year 2000, I woke up one morning in Maryland with a deer tick embedded in my thigh. I developed an EM rash around the bite, but was denied antibiotics by the doctor I consulted.

In May 2001, I had become so sick I could hardly get out of bed for at least half the days of each month.

By May 2002, I was several months into treatment for Lyme with oral and IV antibiotics. My herxes were so severe, the herxes nearly killed me a couple of times.

I required treatment for Lyme and coinfections for years. I suffered from many neurological symptoms, endured several bouts of encephalitis and meningitis, had severe fatigue and joint pain, experienced pituitary malfunctions, and cardiac problems. My LLMD stated several times that I was probably in the category of people who would require maintenance antibiotics for the rest of my life just to survive.

This May, I am now off of antibiotics and all other treatments for four years. AND, I just graduated from nursing school, with honors.

Chronic Lyme can be beat!!!! Don't ever give up.

Success Stories---Treatment Guidelines

Posts: 10010 | From somewhERE OVER THE Rainbow | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
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I have been reading over all the posts to this board and it has been inspiring to read some positive news for a change.

I am writing on behalf of my daughter who is so sick right now due to chronic lyme-9 years of it.

She is currently off the abx as her lyme dr wants to test her in a few weeks for co-infections. It seems to be making her worse and I am praying that she can make it until then.

I am trying to help her look for other lyme docs and/or alternatives in VT. After reading these posts, I am hoping to hear from others in the VT area who have experienced some positive life changes.

We could really use some positive outlooks.

Thank you much!!

Posts: 12 | From Massachusetts | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
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I tested positive for Lyme and had a couple weeks antibiotics prescribed. On my own I took Vit. C for five (5) months, ranging from 15 to 40 grams (40 1000mg tabs) daily. That took care of most of the symptoms, but it was still as if I'd suddenly become arthritic. My "still, small voice inside", or intuition, seems stronger that most people seem to have, and when I was perusing a listing of herbs I felt I ought to take wormwood (Artemisia absinthium). I got some dried from a health food store, ground it finely and filled capsules. I took about 1000mg daily and after ten (10) days the pains ended. I've continued to take if for a few months, will take it for a few more, but will then quit.
Posts: 2 | From York, PA 17403 | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
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does that mean you were diagnosed early and this simply killed it??
Posts: 2563 | From Denver,CO | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
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Looks like a long time since anyone has posted, but I am game to put in my two cents.

I have been sick off and on since I was 17 with various mysterious symptoms.

When I went into menopause in 2009 and turned 51 I crashed hard.

I have been to over 55+ doctors and alternative doctors.

Just over a year ago my PCP told me he want to send me to his friend who was a gyno.

I thought that was good because I had cycsitis. She patiently listened to all my symptoms and said "I know you have cystitis, but worse, you have Lyme.

How do I know? My 3 friends are just like you".

I went to Dr C in Mo. He was too intense and too much info for me.

I ended up with a DO in Co. that is LLMD. I started 10 months ago.

I have made huge strides. He has taken me to a new level of health.

I also have had a hysterectomy, 3 kidney surgeries (stones), 1/2 of my thyroid, nodule the size of a quarter to half dollar, and 3 of my four parathyroids removed.

I am also currently going to emotional clearing.

Which of these made the biggest difference. I don't know.

Between all the Lyme meds and herbs plus these previous and current surgeries who could tell.

All I know is that at one time I begged to die because I knew it was impossible to get well.

I now smile, can drive my self anywhere, capable of fixing Easter dinner, walking in 5Ks, and planning my future.

I still am on herbs and also doing pelvic floor dysfunction therapy.

I tell my hubby, it is like there was a tornado in my body and now I have to go back and clean up the destruction.

It is not fun, but glad to be back with the living.

I am going to be cautious and careful to continue a maintenance program.

I know how fragile I am and need to continue to improve my health and immune system.

I eat only healthy foods and drink nothing but water and lemon juice.

It gets very old, but the alternative makes me stay on track.

I am grateful to be better and think that I will get to see my grandkids grow up and see them get married and have kids.

Not something I thought would happen a year ago.

I have learned some hard life lessons in this journey and I will NEVER take a day of feeling decent for granted again as long as I live.

My goal is to keep the faith and know some day there will be a cure that will set us all free from this monster.

Posts: 620 | From Ks | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
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Reading success stories was very important for me when I was hopeless and at the depths of my illness, and I vowed that I would post mine if I ever "got my miracle"...

Well...I GOT MY MIRACLE...and since you never know when YOUR miracle is going to come, you must never give up, and never accept that this will be your life forever, however defeated you feel.

I had severe neurological Lyme w/Babesia & Bartonella for 8 years...considered an antibiotic failure, and so ill I was homebound for 5 years straight. My mental and physical symptoms were extreme and too numerous to list, but included severe, relentless neuropathy from head to toe (which, incidentally, became worse whenever I stopped moving...hence NO rest...ever). I was told, even by LLMD's, that I was the worst case they had encountered, that I needed a miracle, and there was nothing more they could do for me (I tried many, many protocols with never any improvement, just a continual spiral downward). I thought there was no way out of the nightmare I was in.

I eventually became so ill and environmentally sensitive that I could do no treatments for 5 years before starting (MILD)hyperbaric treatment w/supplemental oxygen (I bought my own chamber and self-treated 1 hour daily).

I now have my life back...working again, running (I had been a runner for 17 years), traveling, etc. It has been a miraculous recovery, and it is 100% due to mHBOT (along with meticulous diet, and gradual exercise).

I believe success depends on the frequency, consistency, and duration of use...many people say they "tried hyperbaric, but it didn't work"...but if you query them, inevitably they didn't do it consistently or frequently enough...or for long enough duration. It was definitely a rocky, 2 step forward, 1 step back recovery, but I'm BACK...low (pressure) and slow hyperbaric WORKS...I'm living proof...

Posts: 1758 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Winter Park
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Ive never taken IV antibiotics for Lyme but oral antibiotics are helping me. Don't know if Ill ever be cured since the rate of improvement is so slow. But its better than before when symptoms were getting worse.
I take Minocycline 100mg in the morning. A couple of hours later I take Penicillin VK 250mg. An hour after that I take Clindamycin 150mg. I stagger the meds and take Minocycline first so that the other meds wont interfere with absorption.
I take the same meds at night, so twice a day.

The interesting thing for me to find out was that I noticed an improvement only after changing my diet too. Mostly eat just poultry and white rice with tomatoes and onions and garlic. I don't like to take vitamin supplements because I like to think Im depriving the spirochetes of nutrients. Before I changed my diet but was taking the meds my symptoms did not get better but they did not get worse.

Even on my worst days it is not as bad as it was before. I feel pretty good most days. Its taken about 4 years with the combination of diet and meds to get to this point.

Posts: 30 | From Winter Park Florida | Registered: Aug 2013  |  IP: Logged | Report this post to a Moderator
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More success stories:

Opinions, not medical advice!

Posts: 95896 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
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Here is my son's story:

In 7th grade he was a gifted basketball player and he had a severe case of bilateral Osgood-Schlatters. He spent one full year resting.. no jumping or running, no PE. He got better. He played 4 years on his high school varsity team and was the team MVP every year.

He had lower back pain sophomore year that went away with steroids and some rest.

Senior year, at the end of the year, ready to go to college and play ball, he came down with a severe reactive arthritis. He was 19 he developed the hallmarks of AS including costochondritis and enthesitis in multiple joints. Both ankles, both knees, both hip flexors, both shoulder enthesitis, and the worst part (and most scary given my family history of undifferentiated spondyloarthropy) costochondritis. The costo was the most painful and the most disabling part.

The immediate trigger was a very bad gastroenteritis with diarrhea.

3 1/2 years later and he has no symptoms. He's back playing intramural basketball and soccer at college and he's been well for about 18 months. Maybe it's a remission, but we'll take it.

The key is to find the right doctor... one who is open to and experienced with a wider array of treatments than the mainstream rheumatologists.

I come from a family with lots of arthritis. I'm 55 and have 4 siblings with serious arthritis, two have Crohn's disease as well, and two have had the diagnosis of AS. One has a completely fused ribcage and three have been sick since their teens.

I knew from previous research that there were many doctors out there that believe in antibiotic protocols for arthritis. I found -- a forum for patients using those protocols-- and I wrote to them for a doctor.

We chose one, a rheumatologist in Northern Virginia, just outside DC, who is not only an AP doctor, but also a well-known Lyme doctor. She tested my son for all kinds of infections, and it turned out that one of his problems was untreated Lyme Disease. She treated him with IV and oral antibiotics, anti-parasitics, anti-fungals, and anti-virals over a period of two years. (Four months of IV for the Lyme.)

Remember, a negative test result does not mean you don't have Lyme. In Virginia they just passed a state law forcing doctors to explain to patients that a negative test does not prove that you don't have Lyme.

He now has no symptoms of arthritis... he is now 22. He's back at college fulltime and playing intramural basketball and soccer. I urge you to find one of these doctors and ask on

If anyone wants more information, feel free to PM me.

Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

Posts: 496 | From Washington, DC | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
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Hi All,

Has anyone recovered from Lyme disease using natural remedies, herbals, IV ozone or oxidative therapies? Homeopathics? I'm not doing antibiotics and would love to hear some success stories.

Thanks and love to all!

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[ 02-06-2015, 11:33 AM: Message edited by: kimmie ]

Posts: 747 | From Utah | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
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Congratulations, kimmie!! Sounds wonderful! [Smile]


Another success story by "ihatelyme"

Opinions, not medical advice!

Posts: 95896 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
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@ flutter11 - yes, Katina Makris has. You can read her book Out of the Woods. Best.
Posts: 123 | From Washington State | Registered: Dec 2013  |  IP: Logged | Report this post to a Moderator
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@flutter11 - Katina Makris used herbs, homeopathics and rife.
Posts: 123 | From Washington State | Registered: Dec 2013  |  IP: Logged | Report this post to a Moderator
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If you are scouring the internet looking for firsthand “success” stories, please keep reading. Although I cannot yet say that I am fully healed, I am well on my way. Do not dismiss this because I do not yet have an entirely clean bill of health. The words “well on my way” are new to me, words I have never been able to say. I still have my struggles, but I am no longer suffering, and the difference is something that I do not take lightly. I am writing this message for one very simple reason. Like many of you, I have had dark days and troubled times when I wanted nothing more than hope. It is difficult to find positivity and hopefulness on the Internet… I would read posts of desperate people, people like me, begging for a glimmering example to aspire to, to look toward, to show that people do get better, the fight is not in vein, and there is a proverbial light at the end of the tunnel. I couldn’t understand why there was hardly a positive story to be found – could it be so hopeless? Having gone from a year spent largely in bed or on the couch, to typing this from my office with a full undaunting day ahead, I owe it to you to set the record straight. People do get better. I am getting better. But once that process finally begins after spending what seemed like an eternity living in terror and despair, you do everything you can not to look back. I made the difficult decision to sacrifice more than a year of my life to intravenous treatment. I have had lyme disease since I was eight years old, with the gamut of problematic symptoms and ever-increasing neurological complications over the last 5-7 years. After years of failed oral regiments, futile holistic programs and false hopes, I committed myself to recovery, no matter the cost. My doctor advised that I would forfeit this year of my life and that I would need to lean on my support system to even make it through. Boy was he right! I will not belabor the painful details that this treatment bestowed upon us. I will tell you that this year+ was more painful, frightening and solitary than I ever could have imagined. I lost myself. My loved ones lost me. But what a joy it has been for us all to get me back!!! I firmly believe that cyber evidence of success stories are few and far between not because they don’t happen, but because once they do, you relish in removing the word “lyme” from your hourly vocabulary. While it still makes its appearances in mine, its frequency has been replaced with words like “honeymoon,” “conference call” and the question “what do you want to do today?!,” laced with possibilities. Lyme disease has consumed me & mine for years – when you finally get the chance to move forward, it is a painful and often detrimental exercise to look back.

Stay positive. Find a program that you believe in with a lyme-literate doctor that you trust and dedicate every ounce of your being to it. Do not cheat yourself out of the life that you deserve. Do not read the negative information disseminated on the internet and the like. It will do nothing but scare you and make you less hopeful in a time when your faith and positivity is EVERTHING. Lean on your loved ones and remember that though you may feel loneliness and even resentment when they are able to head out the door to work each day, this burden is not yours alone. Remember that they too are lying awake at night in a troubled mind full of prayers for an answer, a sign, anything to make you better. Fight together. Their love carried me through.

At the risk of being repetitive I will say once more…. STAY POSITIVE! There is hope, I promise you. Don’t give up. Smile

Posts: 3 | From New Jersey | Registered: Mar 2014  |  IP: Logged | Report this post to a Moderator
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Yin Yang's story:

Opinions, not medical advice!

Posts: 95896 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
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Tracy9's son... Success stories of the whole family too!

Opinions, not medical advice!

Posts: 95896 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
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I started having dizzy spells in 1998. I would be sitting in my office chair and feel like the chair was spinning. I went to 30 doctors, had every weird neuro test, but just kept getting handed a bottle of valium and told to just deal with it.
Then I read an article in an outdoor magazine in my dentists waiting room about someone with Lyme with identical symptoms. i showed the magazine to someone who knew someone else with Lyme that was going to the best Lyme doc in the US, in my home state of NJ.

My symptoms were:
Arthritis in hands, ankles and neck
Total short term memory loss
Some long term memory loss- if my wife walked away from me in a store, I would not recognize her unless the kid with me called her Mom
Could not find my way out of our local grocery store, I would have to have one of my kids lead me to the front of the store
Mad Lyme face regularly, so I would snap at my wife and kids for no reason
Could not drive more than a few blocks from my house without getting lost
Claustrophobia and panic attacks, which I never had before

I had pretty good insurance, some savings and a family that were supporting me, so I started IV antitbiotics very early in treatment to combat the neuro symptoms. Had massive herxes whenever we increased dosage.
Every time my doc would ask if I wanted to take a break from treatment, I said "no, lets hit it harder", but I paid for that with bad herxes.
I spent 4 years on IV, with numerous pic lines and then Hickman catheters in my chest. I was very lucky that I and my family had the financial resources to do this. Insurance paid for about $200,000 of it and I paid about $300,000.
After 4 years of IV, I seemed to be cured, but I asked my doc to leave me on the IV for 3 more months to make sure the Lyme was dead.
I new the Lyme was gone when my memory came back. Over a 2 week period, my whole life replayed in my mind, including the emotions with each event.
That was in 2003.
Now, 11 years later I am Lyme free, with only a small amount of residual arthritis, and some difficulty with claustrophobia, but this is rare.
So it is possible to be cured, but i had to go after it aggressively.

Best regards from a Lyme survivor,

Posts: 2 | From Pawtucket, RI | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
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Cure does exist, no matter what you keep hearing.
I'm lyme free and treatment free for more than 5 years. No relapse, no treatment, despite new tick bites (many of them).

My daughter still relapses once every 2-3 years (or she gets newly infected, as she is also constantly bitten), but her treatment lasts about 30 minutes (10 minutes per week) and after week 2 or 3, she's again symptomless and need no longer treatment (we use photons and nosodes).

It took me 4 whole years of non-stop treatment (mostly homeopathy, tapping, detox, heavy metal detox, teeth surgery, taking off amalgams, treating emotions, doing diet against allergens...) to get reasonably well. But I kept relapsing.

What stopped relapsing for me were photons with nosodes (Infrared therapy).

We followed dr. K' s approach, done by two different practioners and own trial-and-error treatments (based on energetic tests).

Before I used energy tests, my improvement was very slow. It was ART, then own energy testing, that speeded up the process, I believe.

So both me and my daughter, who got many bites every year too, we only used alternative treatments. First we can't be living on antibiotics the whole life (they destroy the GI flora and cause us terrible tummy pains), and second, I don't believe antibiotics cure chronic lyme.

We used Buhner, Cowden, Chinese herbs, homeopathy, Sanum. In the end, our anti infective treatment was only infrared and nosodes.

We are both without lyme treatment but still doing the KPU treatment (taking zinc and some other supplements), still taking chlorella on and off. We started now a gluten free diet, because of my daughter's GI problems (she does not absorb well some nutrients, and her nails are weak). Typical case of KPU, said the doc.

Now, 5 years after treating lyme, I decided to visit my lyme doctor again to treat my dead teeth. I believe they mostly died during lyme, as I was very very bad.

And I took my daughter to see the doc too(for the KPU treatment).

He was so excited to see that I didn't relapse during all those years (I haven't stepped my feet in a MD surgery!). He knows how bad I was initially. Well, he decided to buy the PE1 (infrared device) and probably will start using it with his own patients!!!

No residual symptoms, probably just my white hair that remained white, after lyme was gone. Otherwise, lyme free!

Just keep searching and treating, when a treatment doesn't work in 2-3 months, change it. Just never ever give up!!

[ 10-22-2014, 05:01 AM: Message edited by: Brussels ]

Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
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I just wanted to post some encouragement that it is possible to get better. I haven't posted in a long time, largely because lyme is no longer a major issue in my life anymore.

My daughter was misdiagnosed for at least 5 years. We got to an LLMD over a year and a half ago, from a recommendation I received here. She was nearly bedridden, and completely disabled at that point. But today she is functional, going to college, looking for a job, and at least 95% better. She's still symptomatic for babesia, but improving. Her LLMD says he believes her lyme is in remission. And her mast cell activation syndrome is under control with diet and medications.

So it is possible, with the right doctor on board.

Posts: 48 | From Orlando, FL | Registered: Apr 2014  |  IP: Logged | Report this post to a Moderator
Bitten in Bergen
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Guess it's time to check in - haven't been back much, as my family and I have all been improving. We had a lot of misdiagnoses, ineffective treatments, treatments that made things worse, and llmds who gave up on us.

It took 10 months to reach our name on the wait list, but we finally got an appointment with a top llmd with a reputation of actually getting people better. Again, I forget who here on lymenet helped with that, but a huge "thank you" is in order (all of my old messages were deleted for space).

This llmd is far from our home, but has given us back our lives. Aside from the physical symptoms, each of us was suffering from severe mood issues as well. Within a few short weeks, she was able to resolve the mood issues for each of us - two of us had been on long-term psych meds that we now were able to stop. That was a few years ago already.

One of my children even had lyme-induced autism. This llmd again was able to restore them to full-function to the point where anyone meeting them would think they are "normal" - physically, emotionally, socially.

Our therapy was integrative - it included traditional antibiotics, but also a carefully orchestrated combination of herbals. This llmd treated the whole patient - not just the lyme and co-infections, but also the additional underlying viruses and medical issues that we weren't even aware of.

In my case, I had lyme, babesia and bartonella, but my main symptoms were babesia - anxiety, shortness of breath, palpitations, heat intolerance, night sweats, severe fatigue. After becoming bedridden from the treatments of other llmds, this one got me back on my feet. I feel better than I've felt in 20 years.

It has been a steady course of improvement for all four of us and we hope to complete our treatment soon.

My advice to anyone is use the lymenet folks to bounce ideas off of - especially llmd requests. And if you feel that your treatment isn't working or your doctor can't give you a good explanation for what they are doing, trust your instinct and find another doctor. Don't waste valuable time waiting to get better. It won't happen overnight, but with the right llmd, you will see improvement, even if it's gradual.

Don't give up. Improvement is possible.

Posts: 348 | From NJ | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
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January will be 3 years off abx after an 8 year struggle. I too, was really sick, had heart issues, gastroparesis and POTs. I went thru 3 LLMDs till I found one I felt could help me. Treatment was awful. I thought about throwing in the towel several times.
But here I am today, 100% better, living a great life.
It takes time, faith and determination
It can be beat

Posts: 1276 | From maryland | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
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That is wonderful, Beth! Congratulations! How long were you on antibiotics?

Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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It's been 3 years since I last posted here in success stories.

3 years ago, we could relapse after a new tick bite. I mean, short relapses that were treated very briefly, like we treat a cold...

Now, tick bites barely do anything to both of us, daughter and me.

It probably means our immune systems are getting better at least against tick infections...?

My teeth stopped dying for no reason too.

We are still treating the KPU problem, still trying to get rid of food allergies, now with plasma remedies. The only form of zinc our bodies accept are plasma imprinted zinc,without any real zinc atoms inside.

But Lyme feels definitivelly past history. Its been now more than 8 years symptom free and Lyme treatment free.

The great discoveries for me have been high frequency - my violet ray , plasma imprinted remedies and kimchi.

We still continue using ART to find problems and still using quite some homeopathic remedies to try to heal mineral deficiencies or bad absorption of nutrients.

Candida still returns during winter for me. For less time than before though. I developed some joint candida, I think. Age is a factor, and my chronic candida has to improve.

This year I'll be trying to add an ionic foot bath and one PEMF device to help us detoxing better.

For me, I have no doubt that our Lyme disease was a manifestation of a chronic problem, a whole body disease, weakness...

My daughter and I are done with Lyme, but we're still trying to treat the body as a whole and its underlying conditions, in hopes we don't fall so I'll again.

Keep treating. Not infections only, but the whole body and the immune system.

Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
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can someone please tell me how to get on to the chat Thanks

Cynthia Bahr

Posts: 8 | From Int'l Falls MN | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
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I am having a really hard time trying to figure this
out !!!Could somebody please help me ..I have lots of questions ..and maybe someone can please help answer them for me

Cynthia Bahr

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Hi, Cynthia, and welcome to LymeNet!

Click on this link:;f=5;t=001119;p=0#000000

Here, one of our posters named Bartenderbonnie gives you a good description of how to post your questions on LymeNet.

If you still have trouble, just post under Bonnie's post and ask your questions that way.

We will answer you either way. We will help you all that we can and we are happy to have you!

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Progress report:

Hi everyone. Here is my story and good news:

I got bitten in the Hollywood Hills in Los Angeles in 2003 or 2004. Pulled an engorged tick off my belly and developed a rash. It seemed strange and I was a little worried. I even remember looking up "ringworm" on the internet, but I had no symptoms other than a red ring and I simply forgot about it.

I knew nothing about Lyme at the time.

In late 2004, my knees blew up painfully. It came and went, later spreading to my ankles, elbows, back, neck and jaw. As the years went by, it got worse.

By 2008, I was winding up in the emergency room with excruciating attacks of pain in my insteps. I was partially crippled most of the time and used a cane. Doctors gave me a series of misdiagnoses: sciatica, gout, pseudo-gout, and palindromic rheumatism.

By 2012, I was having trouble working. Drenching night sweats, full-body convulsions, unmentionable gastrointestinal issues, crippled limbs, and mind starting to break down.

During the last five months of 2012, I took minocycline on a hunch (I didn't know what really wrong with me, but by that time, I no longer believed in the autoimmune theory of disease).

After 5 months of mino, I got ALL BETTER! It felt like a miracle from Heaven. I felt so good and full of energy that I went manic and took up skateboarding at the age of 44. I though I was cured.

After a couple years, the symptoms started creeping back. It broke my heart.

In May 2016, it suddenly got much, much worse than it had ever been. I went from sort-of-functional to unable to even sit up or care for myself. My brain felt like it was boiling in acid. I was asleep 18 hours a day.

I returned to my hometown in Florida to die (or so I thought).

In Florida, I received the first thorough medical examination I had ever had -- one full hour -- from a family doctor. He said "get a Lyme test."

The test came back positive. When I saw the result, I remembered that tick bite all those years ago.

That doctor wouldn't treat me, because of course I couldn't have Lyme if I had once taken Minocycline (ha ha).

It took 8 months to find a doctor who would RX a PICC line. It took BEGGING for me to get it. I paid cash for the implant: $470.

I have been treating with IV Rocephin for 4 1/2 months. Recently added 6 days of IV Clindamycin a month (more begging). Both of those are Q12 at the PROPER DOSE (I believe that is crucial). I pay cash to an infusion clinic: $35 per day for medication, dressing changes, etc.

In 4 1/2 months, I have gone from 12 years of untreated Lyme, and being a bedridden vegetable in unendurable agony, to almost able to work.

I can now drive a car, make phone calls, stay upright 6-8 hours a day, walk, etc. I can even fool people into thinking I'm not sick, if I need to. I'm not the man I once was, but if this is all I get from treatment, I'll take it.

IV ABX works!

Thank you to everyone on this board who gives the rest of us hope.

Posts: 8 | From Gainesville FL | Registered: Mar 2017  |  IP: Logged | Report this post to a Moderator
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Glad to hear the good report. We all need to hear happy stories! It gives us all hope. Congrats and cheering you on!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
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Evin98, THIS is so encouraging! TY for sharing! My daughter lives there in LA now and I hope she is careful.

I am stuck. Can't get well, but I don't die. Just stuck, but I can type for short bits, so I still exist somewhere. Thank you for the hope!


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From darkness to light: SIDM tells the Lorraine Johnson story

By Sue Sheridan - - Jan. 8, 2019

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
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