I just wanted to add my own post to this topic. I had Lyme Disease for 7 years before I got a clear diagnosis. I have now completed 14 months of antibiotics, with extensive naturopathic support and low-dose heparin therapy. So far, I have gone from barely able to stand up to walking at least a mile a day and learning to swing dance in the evenings!
I just started a blog a few weeks ago. I explain what I've been through, what worked for me and what didn't, and how I've kept my spirits up this whole time.
If you want more details on my story, would like some inspiration, or ideas for detoxing and other alternative therapies, please read my blog at lymestory.com
posted
I Think I Kicked It's Butt. Mine like all the LYME stories is quite long and complicated. I think i cured myself quickly with no help from Doc. My family Doc laughed at me at first then she changed her tune later and clinically diagnosed me with Lyme.She said if i need help get into her office pronto but i was doing just fine on my own protocol.She even said Samento is a smart choice so i decided to give it a shot on my own. I am going to do this in point form to make it easier for people to understand. July/07 Terrible itchy rash from neck to anus,no bullseye. Night sweats,chills,general malise, 1 year duration. May/08 Sudden onset arthritis, Doc said Rheumatoid with deformation. The test results from Xrays and R/A factor were "0 " arthritis. Other typical symptoms were severe wandering joint pain and a creaking cracking neck.My Lyme gradually entered into very painful neuropathy in my arms and my hands sometimes my legs.I also experienced wierd crawling feelings inside my ears. Very loud hisssing ears for months on end.Sore teeth and sore eyes were daily issues and i hated every minute of this garbage! On July 10/08 i Started Samento and built up quickly to 20 drops/day and herxed like hell so i cut back to 15. added Emu oil internally. added Curcumin and garlic. added P73 oil of Oregano. added olive leaf extract. added tons of red wine. added alpha lipoic acid (super for neuropathy) added amethyst biomat OMG! saved my butt..slept every night almost all night. added homemade highbush cranberry juice(no additives) it is now Oct 2nd. I am free! I am never going to stop Samento or red wine or cranberry juice or my biomat.Those are good things and i enjoy taking them.The Samento took my arthritis away in 3 weeks flat.The knobs and all.I realize i was not a long term case But my wife (nurse) and i did a accurate diagnosis and took the bull by the horns and got aggressive.I firmly believe that abx's are useless against this disease but that my opinion.If anyone requires more detail PM me! Point to ponder. I didn't get sick until after i quit drinking my own organic red wine.I have been back on it now for over 2 mths and feel wonderful. I feel my liver had no problem with the wine but i was only a true Lyme case for 14 months. I let resveratrol do its work and the alcohol really took the neuropathy pain away.Since the wine was organic with no metabisulphites a hangover was non existent.Bear in mind i was not near as sick as a lot of other members by reading their posts but my protocol worked as long as you catch the disease soon enough.I am sure now Lyme is in remission and most likely in cyst form i am looking for advice on what i should do next? I am thinking that if i stay on Samento and other supplements for the rest of my life i could be one happy camper?
[ 03. October 2008, 07:56 AM: Message edited by: kickatick ]
Posts: 12 | From New Brunswick, Canada | Registered: Sep 2008
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1 yr of doxycycline / Flagyl 3 months of IV rocephin 3 years of Bicillin shots
99% of all of my symptoms cleared up, except numbness in the face and insomnia, but I now lead a normal life and have had no relapses .
A little background:
I was sick for six months and had many hospital visits before I was diagnosed, so I had serious neurological problems including insomnia, memory loss, facial numbness, vertigo, etc. including an inflamed heart and many other issues. I was 22 years old when I was bitten and their was no rash. My roommate did get bitten as well and he did have a rash, that is the ONLY reason I new to ask for a lyme test. I was lucky, because there was no rash or visible tick.
I first went to a general practitioner that put me on low dose doxycycline after I tested positive for lyme two times. He stopped treating me and said he didn't know why the doxy wasn't working. I then took it upon myself to find a lyme specialist who put me on high dose doxy, penecillin, and flagyl. That helped a little bit, but wasn't a cure. I then looked for a doctor that would prescribe IV antibiotics and thankfully found an infectious disease specialist that did prescribe them for me. Because I tested positive so many times I had no problem getting the IV antibiotics. That helped a little bit as well, and finally I went to a lyme specialist who is a neurologist and they put me on bicillin shots twice a week. Over a 3 year period this helped the most, but it was a very long road. My suggestion: excercise when you can and stay positive even though it is hard.
[ 03. October 2008, 04:31 PM: Message edited by: florida30 ]
Posts: 1 | From Dallas, TX | Registered: Oct 2008
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posted
I will cross post to success stories, but for those here who need good news:
Our dd was discharged as a patient from the Best Pediatoric Lyme Doc!!! She was in tx for 21 months. He dx her clinically with lyme and babesia (confirmed by labs). She was on zithromax and mepron (yuck). We didn't do much else other than good diet.
ALL SYMPTOMS are gone. She had joint pain, overwhelming fatigue, major depression, bipolar, skin light and sound sensitivity, stabbing eye pain, abdominal pain, chest pain, shortness of breath, disturbed sleep, burning urination, major constipation. We were all living in H3ll, if you know what I mean.
She had been treated with 6 weeks amox post tick bite but the co-infection prevented her from kicking it.
We know we're not out of the woods. She could relapse or be bit again, but she's SO MUCH BETTER. Her life has literally been saved. Thank you so much to lymenet for helping us every step of the way.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
Monica Frequent Contributor (1K+ posts) Member # 224 14 March, 2006 07:01 AM
Here is a Lyme success story as reported to me via e-mail by a friend. The victim lives in Western NJ.
Had a nice conversation tonight with the owner of an Italian Restaurant.
I have known her for about 25 years. About 10 years ago, she suffered very much from Lyme disease. I told her about you and the problems you are faced with daily.
She said she had 6 terrible years, taking up to 17 pills daily, mostly antibiotics, for several of those years. For the past 3 or 4 years, I know she has been feeling wonderful and does just about anything she wants to do, including taking care of her new grand daughter.
She told me to tell you to keep working hard at getting better because you will get better. She said that when she was first aware of what her problem was, she was in "stage 3". I told her you were fighting.
I also mentioned work and she said "work is impossible". I know her husband and family (two boys) helped her a lot.
posted
chlorophyll Junior Member Member # 966 posted 28 May, 2008 12:34 AM
This article about chronic Lyme is in June's issue of Self magazine. I was fairly impressed with the way they covered the topic, especially for mainstream media. And, it's a success story - something we all like to hear!!!
posted
DD was taken off of zith/mepron in November after 2 years tx.
She's better, she's great. NO PAIN. NO Psych issues. No irregular heartbeat, fatigue, etc.
She's six, in Kindergarten and doing great!!!!!
Just want to let people know so they will see there is hope.
As for mom (me) I'm still on ceftin/zith, but the good news is that I'm working full time- WOW! That's after being unable to work, drive or parent for most of the prior year.
There is a life beyond treatment!!! Stick with it folks.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi everyone,
I have only been treating for 8 weeks now.
I couldn't believe it when I woke up this morning and realized that I had actually slept for 7 straight hours without waking up!!!
2 weeks ago I also had 2 nights where I slept for 6 hours straight.
I have not slept for 21 years, so this seemed like a miracle to me.
Normally I was lucky to get 1-5 hours of very broken sleep.
My insomnia was really bad the last couple years....couldn't get to sleep and if I finally did, I couldn't stay asleep.
The meds/supps I am taking that are for sleep right now are:
(update 4/10/09: I have increased the sublingual melatonin to 10 mg at 10 pm)
I also have been trying to dim the lights and get off the computer by 9:30 pm to let my mind rest and hopefully help melatonin production.....I'm a little late tonight though.
I am hoping that this is my first sign of improvement.
note: check with your LLMD for interactions between meds and supplements....for instance a person taking a SSRI or MAOI antidepressant should not take these supplements.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
After 15 years of being undiagnosed, i am currently in my third month of treatment (with PICC line and oral abx).
I must say that up until a few days ago, I felt that there was not much hope for getting back any 'normalcy' in my life.
However, after my first dose of IV Levaquin more than kicked my a$$ on saturday, i woke up the next day feeling good. and the next day and the next!
I'm starting to fade back to all of my symptoms, but I was able to grasp the true possibility of me getting better.
Also, last semester, I was having a very difficult time with school. In particular, calculus.
As my lyme had progressed, the subject that came so easy to me had become the most difficult.
I would like to say that I am retaking calculus this semester and just received a 100% on my last test. In fact, I have gotten two 96%s and one 95%.
I can feel my brain coming back! It's a wonderful thing and I had been so skeptical.
So know that there IS a future. It feels so good to believe it!!!
xoxo ~Green~
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi ThatColorGreen,
I am really happy for you, that you now can really feel the hope that you needed!
Congrats and I hope you just keep improving!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
tincup's post
little girl ... rocky mountain spotted fever, etc. MISDIAGNOSED OVER & OVER ...
lengthy & lymenet members helped mom get dr. to dr. jones, conn.!!!
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I don't want to jinx myself but did want to post something that will hopefully give those out there struggling some optimism.
I am about 75% better. I was very ill, had Lyme likely since teenage years, rebitten in 1996. Sick since 2005, pregnancy made it all come out. Heavily neuro.
I attribute this to: 1) three different LLMDs and knowing when to switch 2) Doing IV. 3) myself/following my instinct 4) really, really good probiotics (medical grade) from the beginning - something I learned here on Lymenet! 5) A mood stabilizer/anti-seizure med 6) Friends I've made here and on other boards, and all the ideas we've collectively come up with as regards treatment.
I'm not out of the woods by any means, I still have to work on the illness and do clean-up with perhaps mold and metals. But I am enjoying life again and Lyme is not always the first thing I think about every morning anymore.
There's hope!
Posts: 3528 | From US | Registered: Apr 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Posting links to these stories here, since I haven't seen them copied here so far. I hope that's ok with everyone.
New members need to have an easy place to find these stories so they can get a sense that people are getting sick, coming here, getting treatment, getting better, and moving on. Otherwise, they only see a slice of the whole picture.
It's been a while since I posted an update. I am happy to report significant improvements and I have been symptom free much of this year including a 3 month break from Abx.
In June I began (hopefully) my final 90 day round of Abx (Suprax, Zith and Flagyl). I'm herxing as expected and I feel like poop.. amazing how quickly I forgot what it felt like!
I had 2 major setbacks this year (unrelated to Lyme). MRI detected 3 bulging discs (lumbar spine) in JAN, followed by right leg issues in MAR.
Things have since improved thanks to extensive therapy (Spinal Decompression, ART, Massage, Chiro, Acupuncture).
For the record, here's a brief recap of my history: minor symptoms began Nov05 after fracturing my foot. My condition worsened Oct06 following major shoulder surgery.
Chronically fatigue and bedridden by Apr07. Self-diagnosed w/ Borrelia in Mar07... denied clinical Dx and treatment by numerous Drs for several months.
Sought LLMD in Jul07 and began treatment in Sep07.
Recent testing (Mar09) supports how I am feeling these days. I hope you all are having similar experiences or at least realize your potential and the possibilities of recovery.
i am by no means cured but i definitely have my illness under control and i'm headed in the right direction.
C3a Complement Protein: 137... (was 221 in May08). Labcorp Test #840702
C4a Level: 1759... (was 4034 in May08). Labcorp Test #857334
CD-57: 65... (was 32 in Jun07). Labcorp Test #505026
Mercury Blood: None detected... (was 5.2 in Dec07). Labcorp Test #085324
Vitamin D (25-Hydroxy): 45.2... (was 31.1 in May08). Labcorp Test #081950
I will share more of my thoughts concerning Lyme care and treatment based on my experiences in the coming days. Hopefully someone will benefit from it... stay tuned. -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
I just wanted to give everyone a little hope today. I haven't posted here in a long time, but I wanted to let everyone know that getting WELL is very possible.
I had misdiagnosed lyme, babesia, bartonell and ehrlichia for over five years.
After I had my son, I started to really go down hill with memory loss, derealization and a lot of brain issues.
I have now been in treatment for lyme and coinfections for one year and four months and I am almost 100%.
The only time I have symptoms at all is when my lyme doctor changes my meds and I herx. However, even now, my herxes aren't severe like they were for many months.
In fact, my lyme doctor tells me that after just a few more months of treating the coinfections very hard, I can get pregnant.
It's been a really long road and it's not over yet, but I'm living a really nice life now and I feel better than I have in years! You can to just keep at it and try to stay posistive!
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
A Champion Overcomes-Attitude is EVERYTHING
Year 1) I woke up paralyzed 7 years ago this Sept. Was then diagnosed with end of Life (suspected MS/ALS) Stage of unknown etiology.
Year 2) Given a death sentence the MD's told my wife to move back home for familial support the following September we did.
Year 3) On our 15th Anniversary (9/9/1988) we found a lump that turned out to be 3rd stage breast cancer. Two months later we found out our children had the same infection of the brain that I had. A small car given to us by a Business partner exposes us to Carbon Monoxide thru a broken manifold and rusted out floor boards.
Year 4) We find out that the house we bought for me to die in was loaded with mold. A car our friend gave us title to exposes us to Noxious Carbon-Monoxide and burning transmission fluid caused by a leaky exhaust pipe and leaking transmission. Kris completes her Allopathic Cancer regimen and starts a Natural path to permanent healing.
Year 5) We file bankruptcy and leave all of our worldly goods behind us as we give the mold infested house and furniture over to the bank. The car we purchased (with a loan from my Father fills with mold from a leak in the front windshield/dash area)
Year 6) Due to a Mishap caused by the exiting Occupants we have to cancel a lease and are left homeless for 2 months (I pawn my wife's wedding ring to pay the deposit on a Duplex) Two months later a friend offers a business Opportunity to me....I pawn MY wedding ring...this time to pay a $175 licensing fee. 9 weeks later I get my first paycheck ...on the same day that we filed Bankruptcy 2 years beforehand.
Year 7) Three years after bankruptcy, 18 months after being homeless and 12 months after earning my first paycheck with this company...I earn $22,600 in one month.
Earlier in the year, despite tremendous physical discomfort from the infection that has ravaged his body for over 30 years...Kent fulfills a promise he made to others that suffered from the same affliction over 6 years before...that he would return to the world of sports once again and compete at the National level. In April he starts a regimen to help him regain his strength by July to compete again. At the regional Track and Field Event despite suffering from cramps, diarrhea and heat exhaustion in the 105 Degree Heat Index he qualifies to compete at the National Level in Long Jump and the 4 x100 meter Relay. Injured he withdraws from the National Games held in Colorado Springs, CO.
Kent is flown throughout the U.S. as a Featured Speaker at several Business Seminars.....
Year 8) Coming this October My Family and I will be featured on a book titled, "You Will Overcome" 52 Inspirational Stories of People Overcoming Great Challenges. Our Chapter is Entitled, "With This, I Can NOT Fail!" www.IcanNotFail.org
This NOT a Solicitation.....just one families story...that stills goes on.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Woman fights for Lyme treatment after months of diagnosis denial
The Sacramento Bee
September 1, 2009 E-mail Print Share Text size
SACRAMENTO, Calif. - She wouldn't use the wheelchair. Anything but that. The bulky walker was bad enough, but at least she could retain a semblance of her former mobility.
Yeah, Pamela O'Kane was determined -- stubbornly so -- to get back to normal life after another stay at the hospital.
This one lasted 10 days in the late summer of 2007, and doctors still had no definitive diagnosis to explain and treat the uncontrolled, episodic spasms in her legs and arms, the partial facial paralysis, the weakening of her reflexes and the troubling 35-pound weight loss.
O'Kane, a 48-year-old instructor at California State University, Sacramento, suspected that she had somehow contracted Lyme disease -- a potentially debilitating infection transmitted by ticks -- at some point in 2006. All the symptoms were there, and her Lyme disease specialist detected two co-infections that usually accompany the disease. But the test for Lyme disease came back negative three times.
Which frustrated O'Kane to no end. Here was this perfectly healthy woman -- a national-qualifying, age-group triathlete, no less -- rendered nearly an invalid who could barely stand up to conduct her teacher education classes without succumbing to fatigue, breathing problems and spasms.
Specialists had tested her for a medical dictionary's worth of maladies. The spinal tap for Lou Gehrig's disease came back negative, as did the scan for multiple sclerosis. She saw her gynecologist for a cervical cancer test, a pulmonary specialist for a lung cancer screening, neurologists for all types of central nervous system disorders.
Negative, negative, negative.
One doctor even suggested antidepressants, thinking O'Kane was suffering from psychological problems. O'Kane, however, knew the problem was in her central nervous system, not "all in my head."
Still, just before this latest hospital discharge, the neurologist at the hospital told O'Kane's relatives that her condition would only worsen, and that a wheelchair was advisable.
"They told me I was going to be disabled," O'Kane recalls. "They said it would get progressively worse."
O'Kane had other ideas. During the hospital stay, she had read a story in The (Sacramento, Calif.) Bee newspaper about women climbing Half Dome, that 2,000-foot-high granite monolith in Yosemite, and she vowed to do it herself within a year.
A year later, she and her sister, Denise Wilbur DeTrano, had reached the goal, arms raised atop the granite slab. Just for good measure, the pair ascended Half Dome again this summer.
But O'Kane says it took more than dedication and grit to get her body back close to pre-illness shape.
Rather, she had to put aside her skepticism and commit fully to a controversial Lyme disease treatment plan that she had hesitated to enter because she technically had never been diagnosed.
It involved long-term antibiotic treatment -- open-ended, depending on her response to it -- through an IV line implanted in her left arm. This goes against standard treatment recommended by three medical organizations: the Infectious Disease Society of America, the Centers for Disease Control and Prevention, and the American Academy of Neurology. In a 2007 study published in the journal Neurology, researchers found that for patients with neuroborreliosis (Lyme disease that affects the nervous system), the treatment was effective only during a 14- to 28-day window. Long-term use of antibiotics has been linked to side effects such as blood clots, bloodstream infections and diarrhea.
Yet many Lyme patients (and those, like O'Kane, who exhibited symptoms but were not officially diagnosed) report that a six- to eight-month regimen of antibiotics helped them. And San Francisco physician Raphael Stricker, who has treated 1,800 Lyme disease patients, says he's seen patients cured by long-term antibiotic use.
"For patients with persistent symptoms based on persistent infection, unless they're treated long-term with antibiotics, they aren't going to get better," says Stricker, who did not treat O'Kane. "There is a lot of evidence from animal and human studies that there is persistence in infection (with Lyme), and the only way to get rid of it is long-term antibiotics."
O'Kane knew that prolonged use of antibiotics could be harmful, but she also knew that it was effective.
She underwent six months of treatment from January to July 2007. While taking the drug, she still had hand and facial tremors and had yet to gain back weight, but the severity was greatly diminished, and O'Kane could go about teaching and participating in triathlons.
What gnawed at her, though, was the fact that she'd never been diagnosed with Lyme. All those negative tests couldn't be wrong, could they?
That summer, she says, "I decided to take myself off it and detox. I wanted to try this on my own. Everyone told me, no, no, no. But I said, 'This is it.' "
About two weeks off the medication, she called her sister.
"She said that her feet were turning in -- foot drop like people with cerebral palsy have," DeTrano recalls. "Fifteen minutes later, she calls me and says, 'I can't walk.' I had to go and carry her into the ER."
After that prolonged hospital stay, the one in which neurologists said she might be permanently disabled, O'Kane was eager to go back on antibiotics. She recalls being in the Lyme specialist's office, and her feet were spastically moving so much "it was like I was tap-dancing on the floor."
Even with just the initial dose of antibiotics coursing through her system, O'Kane said she felt better. She tossed aside the walker and never used it again. Not long thereafter, she was running, swimming and biking.
She regained her strength and stamina, if not all the weight she lost. Still, through rehab with a personal trainer that includes weight training, O'Kane has 12 pounds of muscle mass, according to her latest hydrostatic weight test.
Ironically, after feeling better, O'Kane finally tested positive for Lyme in January 2008.
"She's a classic case," Stricker says. "The commercial testing for Lyme is, in a word, terrible. They miss more than half the cases. Compare that to the sensitivity of AIDS testing, which is 99.5 percent [accurate]. The tendency is for doctors to say, 'I guess you don't have Lyme disease. It must be something else.' "
O'Kane just seems happy to have finally cleared the major health hurdle. Now back to running seven-minute miles and churning on the bike, O'Kane believes exercise has hastened her recovery. But she admits that she still has problems, episodic tremors mostly.
"It's like somebody who suffers a stroke and recovers, but only to a certain point," she says.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
SHORT VERSION
OCTOBER 2003: Hiking at national park with family. Later, found tick (no big deal, pulled it off) BIG MISTAKE!
Text book Lyme symptoms. "Flu", aches, pains, sick in bed, exhausted, couldn't go to work. Got "better". Returned to work.
TWO WEEKS LATER: Developed large bulls-eye rash. Freaked out. Never saw anything like that in my life. My husband went online and found that exact rash--Lyme Disease! Neither of us had ever heard of Lyme Disease.
SAW DOCTOR in our small town (who I would have never gone to normally) but I was so freaked. Dr. said "No Lyme Disease in OKLA but, just in case, put me on ten days of Doxy."
ENDED UP IN ER five days after starting Doxy became "deathly" ill. Body in extreme pain. Terrible headache. Bulls-eye rash almost gone; Lab tests normal.
Told by ER doctor to follow up with a doctor to be tested for MS and/or Lupus (I did not follow up).
Didn't know it then, but that was a HERX that landed me in ER.
CHRISTMAS 2003 felt "better". I have a high threshold for pain, usually could go to work. However, when exhausted, could not get out of bed. Stayed home.
APRIL-SEPTEMBER 2004: "Fear" set in. Still could go to work, if not exhausted.
OCTOBER-NOVEMBER 2004: Brain fog. Losing my mind. Missed more work. More days in bed.
DECEMBER 2004: Going crazy. Milk to washing machine. Laundry to fridge. Etc. Driving and couldn't find cruise control on car we'd had for SIX years--THAT WAS IT!
When I arrived home my husband looked up Lyme Disease Symptoms. THERE I WAS! Had most of the symptoms. Scheduled appt. with Dr. C.
FEBRUARY 2005: (1 year and 4 months since tick bite) Finally my appt. with Dr. C in MO.
Followed faithfully one Abx after another per protocol. If herxed too bad, reduced. Built back up. When Abx no longer helping (no herxing) moved on to next Abx.
APRIL 2006 Went off Abx. Symptoms gone, except from time to time tired and my body weak--no more hiking, jogging.
Accepted that my life would not be the life I had before Lyme.
"REMISSION" APRIL 2006-MARCH 2008 Two years
APRIL-JULY 2008 Ignored Lyme signs. Tired. Brain fog, Forgetful, etc.
Finally set up appt with Dr. W In TX (closer to Oklahoma).
AUGUST 2008 - MARCH 2009 Seven months on Abx. Protocol different. High Abx doses, just hang in there, but if can't, then cut back. Hung in there as best as I could--one Abx after another.
Received encouraging PM from TF (BIG THANK YOU) regarding exercising per Dr. B's protocol. After beginning Abx this time, I started rubber band muscle strength exercises--30 SECONDS! No, I did not feel like it--but again and again I would read that PM. TF shared, "I have the same life I had before Lyme. I don't have an energy problem. I take a brisk 2-mile walk with some jogging (30 minutes) daily for my exercise program, plus I lift weights...Now, I can do what I want."
I started muscle strengthening slowly. Now I can do 45 minutes of muscle strengthening.
Dr. B says, "If you don't exercise you will not get better." WOW!
APRIL 2009: 5 1/2 years after tick bite, and one relapse later, I have my life back.
Since starting muscle strengthening exercises, I have been able to add walking, some jogging and cycling. Feeling better keeps me motivated to continue. One day I'd like to run in a Marathon (even if it's "just" five miles).
One other thing I'd like to share--REST/SLEEP. It is so important to rest our body. We don't have to let "Lyme" put us to bed, we can choose to lay down so our body can heal. When I'm tired, I rest. I enjoy it and don't feel guilty.
I haven't posted much in the past. I have read posts and have been encouraged. It is time--PAST TIME--for me to give back.
Lyme is not the end. There is hope. Do not give up.
SEPTEMBER 19, 2009 Attitude is so important (as I shared on a post today).
I do not know the future, but this I am sure of--I am not a Lyme Victim. I am a Lyme Survivor!
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I figured I would update my post that at one time or another I had on here.
- I first began getting sick in 2001, but it wasn't with anything I even remotely thought was lyme. It started in May, I got the flu. In June,
I lost my hearing due to a severe ear infection. In July, I got laryngitis, etc. It seemed like every month from May- September of 2001, I was getting sick.
And every month, I would get an antibiotic, take it and be better for another 3 to 4 weeks.
In September of 2001 though, is when lyme dropped the bomb on me. I was sitting at work when I got a sudden intense vertigo and completely lost my sight. My forehead started hurting me in the most intense way.
My then fiance came and got me and took me to the ER. They thought I had a "thunderclap" headache and was checking me for stroke or a blood clot, etc.
The Ct. scan was fine, but I wasn't. Though I could see, I was still having vertigo and my head was beyond killing me. I went home where I began running a very high fever.
From there on out, I had countless Er trips, tons of visits to my PCP and other specialists and tons of diagnoses- all of which were wrong.
by the time I was finally diagnosed it was mid 2002 and I was experiencing temp paralysis episodes, and a HOST of other severe neuro symptoms from head pressure to spurting nose bleeds, to constant 24/7 migraines that were insanely severe to constant 24.7 vertigo. I used to feel like I was walking on bubbles. Everything hurt. I had in total well over 75 symptoms.
The way I got diagnosed was a girlfriend of mine from college called me and said "I think you have lyme disease". I recalled that everytime I searched out my symptoms ( sometimes by holding onto my desk so I wouldnt fall over),
that it would keep bringing up lyme. I called my local lyme support group and they helped me contact a doctor.
I was blood and PCR positive and urine positive for lyme. Within just two short weeks of amoxy at 3 to 4 mg A DAY, my severe vertigo and migraines were gone and never returned. ( albeit I still do suffer a severe migraine from time to time).
I was 26 years old.
I am now 33. I have done TONS of treatments and tons of antibiotics and a wealth of alternative treatments from muscle testing to the rife machine to saunas, etc. I believe everything together is what helped me.
I still DO have symptoms ( only three) that require me to take antibiotics from time to time. But for the most part, I am living a pretty full and normal life again and have been for quite some time.
I decided to buckle back down and get rid of what is left. It was discovered two years ago the reason I wasnt fully better was because I didn't have the babesia or bartonella they suspected, but rather the southern strain of erlichia that no one even thought to test me for. I am having a hard time getting rid of it ( still positive), but I am still trying.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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This time last year, I'd been on antibiotics for just about a year. I was sleeping around 16 hours a day, and had such bad pain in my legs I could hardly walk. I thought I'd never feel normal, or healthy, ever again.
But last week, I ran 10 miles.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Success Stories,
For those of you who got well got well can you go more into pain. Did any of you have terrible arm or leg pain that seemed to last for ever and get worse?
How about exercise? Mostly weights? Any cardio? Walking? I was feeling better last winter with treatment and was lifting weights and lifting heavy as I used to body build.
I was feeling good, went snowboarding...life was looking good. Then the rug came out from under me. They found after 5 month I did not get Babs out of me. She feels after 5 months it supressed it enough to give me quite a few months of reliefe and also was in the middle of Lyme and Bart treatment....but still had a positive Babs test.
I used to lift weights now a push up is hellish...pain in shoulders, elbows,etc My shoulder feels so unstable it feels like it could fall out.
A year later I am back on Babs treatment going on three months and still no better. Pain is horrible and is getting worse. I want to die. Anyone go through something similar?
Finally, how about details on your diet? I eat very little meat since cooked meat is essentially a carsinogen and that scares me and my digestion is not as good when I eat meat. I know some here ate nothing but meat and veggies while other ate almost vegetarian but mostly whole intact grains, whole foods, etc and no simple carbs or refined foods. That is kind of my diet.
Just looking for details on these issues to hopefully give me some hope from those who have gone before me. Thanks.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I have treated Lyme with antibiotics and Buhner herbs, and had gone into a fairly sustained remission, and later had a reinfection (I'm pretty sure). It seems to be babesia and things are much more difficult this time around.
After a year+ of fighting the babesia, it seems to be gone.
Unlike the first time I treated "only" Lyme, which was a relatively easy experience, my theme this year seemed to be "this is really hard", "I wish I could afford tests to guide what I'm doing", "I can't afford anything" and "I'll do anything to get medication" and "throw the kitchen sink at it". My doctor had other ideas on how to deal with it but was willing to defer to my research. We did a lot of trial and error. I learned a lot about ordering medication overseas. I tried to get plant researcher friends in Africa to look for cryptolepsis for me (no luck on that). I seem to have a stomach of iron and a liver of iron, and tolerated this heavy drug use protocol. I am now somewhat better, though I still have Lyme symptoms that I think are unrelated to the babesia.
To 'afford' this stuff, I got medication from a couple of other patients on the internet, I bought generic Indian and Barbados-made medication from overseas pharmacies, and I didn't take some things (like Malarone instead of Mepron) that I would have preferred because I couldn't afford it and couldn't get it for free. I used many drugs simultaneously.
the progression went like this: May 2007: tick bite with some kind of obvious re-infection (I already had Lyme) 2 weeks of immediate amoxycillin/probenecid, symptoms went away 'mostly' I put myself on a couple of months of doxycycline relapsed about a month and a half after the bite got sicker and sicker and noticed that I had anorexia all of a sudden, along with night sweats and other issues got air hunger from hell about 2 1/2 months after the bite got on about 2 months of Biaxin and Buhner herbs didn't get any better started Mepron + Biaxin, kept up to that for about 8 months (I didn't take proper doses since I know I didn't have 6 months of Mepron bottles) started cryptolepsis and kept that up for about 8 months added alinia about 7 months in, didn't see a drastic effect added artemesinin, pulsed when I remembered to take breaks did about 3 3-week courses of alinia with breaks in between did Chinese herbal medicine from an herbalist in Chinatown (ie I have no idea what's in it, though he told me that some of the herbs were useful for malaria) did some acupuncture at various times when I could afford it air hunger finally started to subside 14 months after the bite (the other symptoms, sweats, dizziness, headaches, and anorexia, had subsided much earlier) Ran out of Mepron about 8 months into babesia treatment, have continued on Biaxin + Alinia + artemesinin + cryptolepsis for a month, followed by Rifampin + Bactrim + other rotated antibiotics and courses of Alinia and/or artemesinin. I've been on Bactrim continuously since I ran out of Mepron, it's one of the antibiotics that may be effective on both babesia and bartonella, which I suspect I may have. Will continue to take Alinia, alternating it with Flagyl, under the theory that it might treat cyst form of Lyme like Flagyl may, but also with the idea that I may still need to keep some babesia under control Been getting intensive acupuncture for immune regulation, with the acupuncturist somewhat targeting air hunger issues even though they were mostly gone Air hunger has been gone completely in the last 6 weeks, and was only occasionally coming up in the couple of months before then.
notes: I was on low dose naltrexone at first (but can't afford it, at only $54/month!). I think it made me have more of a herx response to all the treatment. I do think that it seemed to prevent my having major candida overgrowth issues, thank God. I'm going to try to find cheaper sources of it again.
also- I'm quite sure I had babesia but never got a test. I just can't afford to spend $220. Whatever it is that I had, it's responded to antimalarials and antiprotozoal drugs. I definitely have Lyme, and might have bartonella as well.
I got a lot of my meds from overseas, though various patients just gave me bottles of leftover Mepron, as the Mepron isn't available in generic anywhere yet (for overseas pharmacies, I usually look at pharmacychecker.com and go from there).
Alinia is very expensive in the US but is very cheap in India- $70/month (I ordered from this place, with a prescription: http://www.onlinepharmaciescanada.com/opc/name-search.aspx?drugname=alinia ). While Alinia has not been properly studied for babesia, it seemed to me like it was what finally got my air hunger to go away and I think it's a possible alternative for people who can't afford Mepron.
It's a subtle drug for me- I herx, but more in a weird, 'emotionally flat' sort of way than an obviously physical way like with Lyme drugs.
Biaxin caused me major depression and suicidal thoughts once or twice. I had known about this before, had warned my roommates and boyfriend about it, and it still snuck up on me even though I was watching for it. I was able to stop the drug, re-start a week later, and eventually the psychological problem stopped happening. I am NOT prone to depression normally so I'm just amazed at how much this can 'sneak up on you'.
People say that Mepron causes depression and suicidal thoughts, but I'm quite sure that for me it was Biaxin specifically. Azithromycin does not do this to me. I couldn't afford the zith so I kept trying the Biaxin. I have a LOT of confidence in my own mental health. If this happens to you on babesia treatment and you are prone to suicidal thoughts or depression, PLEASE do not play around with re-starting these drugs without telling your doctor AND having people around you who can check up on you. I've heard horror stories about people having uncontrollable suicidal thoughts while on babesia treatment. Suicide seems to be the most common way that Lyme patients die of their disease. I'm lucky that I was able to tolerate my medication after the second attempt at re-starting it, without the depression coming back. Some people may not be able to do so. Depression is also a major symptom of this disease. Don't take it lightly.
Biaxin probably caused me vicious insomnia. I can't believe how horrible this was. After trying lots of things that didn't help, I started using very low doses of Klonpin- 1/4 of the smallest tablet it comes in. It still didn't always help all the time, until I stopped Biaxin and started Rifampin/Bactrim/Flagyl etc
This past spring, cryptolepsis was unavailable from the supplier for a while. This was very unfortunate as I think it really helps me a LOT. I was taking fairly large doses (teaspoon three times a day, I've heard of larger doses still online). from talking to Woodland Essence, the supplier of the tincture, I don't think they're going to have this problem again.
Last time I saw the LLMD, a couple of months ago, I had just had some residual air hunger reappear, not very strongly. It seems like it would re-appear whenever I was herxing from Flagyl or other Lyme drugs. He wanted me to consider IV clindamycin, because he thinks that I shouldn't have had babesia symptoms for this long, and thinks that if it still re-appears under stress, it may be good to try IV protocol. He's been trying to get me on IM bicillin or IV drugs for ages, because he believes I won't improve on orals. I can't afford it and am taking a gamble on this gigantic chemotherapy cocktail of up to 4 antibiotics at once. I think I've gotten the remaining air hunger under control since then, and am off all babesia meds except bactrim. We'll see what happens this winter- I still have a lot of Lyme symptoms, and who knows what happens next time I switch meds or stress myself.
I'm aware that some babesia symptoms are also symptoms of Lyme or bartonella.
-------------------- Symptom Free!!! Thank you all!!!!
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Maria and everybody. Wonderful posts, thank you for posting@
Tomorrow, we'll be entering month 8 of full remission. No lyme treatment whatsoever. Not even herbs, nor homeopathy, nor photons.
My daughter and I, after multiple reinfections and relapses, are not treating lyme for 8 months! I can barely believe that!! Time flies!
Our last battles are described in the long thread in Medical, called 'PE1 and the Bionic therapy', for those interested. We stopped posting updates now as there's nothing new to add.
We're now treating heavy metals with the KPU protocol, but there are no killing agents there, only minerals and vitamins.
I am feeling very well for the moment. I have never been so long without lyme treatment since I started treatment in 2005. I'll post again if I reach one year lyme treatment free.
Good luck to you all!
Posts: 6199 | From Brussels | Registered: Oct 2007
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Years ago, I promised myself that if I ever got better, I would share my success story with others.
I did get better and it has been one year since I went off medications, and I have not relapsed this time. Three years ago, I was so sick that I could not drive a car, read a book or watch TV. I suffered from brain fog and I could not follow a normal conversation or speak in complete sentences -- I would forget what I was saying mid-sentence. Debilitating muscle weakness made it a struggle just to get out of bed.
I am about 80 percent recovered, and am feeling hugely better. I am able to do more things, and hope to return to work soon. I still have symptoms, such as inflammation, physical fatigue, muscle twitching, and cognitive problems, which slow me down. But I am feeling a thousand times better, and am very grateful for it.
For those who do not know or remember me, my story is that I was diagnosed with neurological Lyme disease in 2003 following a tick bite in Montana. The infectious doctor I had consulted prescribed 3 weeks IV rocephin. I was feeling better by the end of the three weeks, but relapsed in less than 6 weeks. I was told I suffered from post Lyme disease syndrome, even though I had all the same symptoms as before.
I found a LLMD, and nine months after my Montana tick bite, I was finally diagnosed with babesiosis (the test for B. duncani came back 1:1285). Also, it became clear that my Lyme infection dated back years before my Montana tick encounter. I was treated with many rounds of mepron, but would relapse as soon as treatment was scaled back or stopped.
What finally worked for me was aggressive treatment of my babesiosis, and getting my food sensitivities under control. The successful babesia treatment consisted of rotating lariam, malarone and flagyl (in combination with an antibiotic). I would take lariam for 3 months, then malarone for 3 months, and then flagyl for 5 months, and then start over again.
Another huge problem for me is food sensitivities. Over time, I discovered that foods that had been fermented, aged, pickled, or smoked made me sick. What these foods have in common is that they have a high level of tyramine. Tyramine is a natural substance formed from the breakdown of protein as food ages. Examples of foods high in tyramine are aged cheeses, yogurt, beer, wine, vinegar, canned meats, lox, sauerkraut, pickles, ripe avocadoes, tofu, and soy sauce. By cutting out these foods, I have been able to reduce my inflammation significantly, though not completely.
When I was the sickest, I started to write a book about my own experiences as a patient with Lyme disease. In the beginning I could only write a sentence of two, but as I started feeling better, the pages started to fill. My book is coming out in February, and its title is "Sick and Tired: How the U.S. Health Care System Fails Its Patients."
Posts: 187 | From Washington, DC | Registered: Dec 2004
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posted
Thursday 12/31/09: Good Morning! I used to post to my diary that: ``it is not a good morning and I may never say good morning again''. This became a common statement on the first lines of writing in my diary for years.
Today is New Years Eve 2010!...and I feel as if it is the start of my new life! So it truly is a Good Morning! I have been through Hell and Back!
I am finally finishing up my book that I said I would always write someday.
I wanted to write my book back when I never fathomed in my wildest dreams that it would take 11 months for me to finally be diagnosed with Lyme or this Lyme-Like illness. 11 months to finally get one course of antibiotics! All because my first Lyme test ELISA was negative and then my second test (Western Blot) was CDC negative - which pretty much nailed my coffin. No matter how much the CDC can write on their web site that lab tests alone should not be used solely to determine the diagnosis of lyme - that it should be a clinical diagnosis - it is happening - because doctors are too busy and depend on those lab tests to be accurate.
I wanted to write my book back when I posted in my diary about how I just couldn't believe that such a medical travesty could happen. That the faulty IDSA guidelines, which the insurance companies quickly picked up on, could dictate treatment or better yet no treatment for thousands of people who are ill. And why - because they don't want to over use antibiotics? Then stop feeding them to the food supply!
I definitely wanted to write my book after months of searching for my own diagnosis, constantly researching on line after going to over 12 doctors, never giving up only to have a doctor on a med forum say things like : ``There are some people that believe it is psychiatric in nature''. I really wanted to write my book then. Blame the victim...right! As below indicates: ______________________________________________ CCF-M.D.-MJM 03/19/2006 C4 Hikerunner, ...We do see people like yourself with a diagnosis like chronic lyme disease, chronic myocarditis with normal ESR and normal cardiac enzymes -- we do not know what is causing these symptoms There are some people that believe it is psychiatric in nature. We see a lot of well grounded people that I can tell are really hurting and I am left with no explanation... ________________________________________
This after months of severe night sweats so bad I had to change my sheets at least twice during the night, fast heart rates of over 130 just standing, heart palps at night so bad that if I laid on my side I could hear my heart pound in my ears, muscle aches so bad that it felt like I had a knife stabbing in my back, unexplained bruising,shortness of breath just walking up a few steps,short sharp intakes of air out of nowhere, exercise intolerance, dizziness, brain fog, insomnia and extreme fatique.
A former long distance runner, who just one year before was setting records in her age group at races. Yet, because there were no abnormal labs and all heart tests came back normal except for sinus tachycardia and insignificant T wave changes that they could not explain ...it was all in my head. The lab tests were normal because my body had stopped fighting! The bacteria and/or parasite had taken over!
I wanted to write my book back when I felt all alone and so very ill. Back when I had stopped going to doctors because I would get statements like the one by the Med Forum Doctor. How could I explain to anyone at that time what it felt like to be ill like I was. Where does one start when they are trying to explain to other people what their ``undiagnosed illness'' had been like for months upon months. How a perfectly healthy woman had become a shell of her former self. Actually, becoming a totally different person that she no longer recognized when she looked at herself in the mirror in the morning. A woman who set records for her age group at road races just a month before she became ill. It all happened so fast...so that she still remembers that other person. No, it was not gradual, so that the memory has a harder time remembering what it was like to be well once. No, I remember exactly what it felt to feel ``great''. In fact, my health was my signature. And that is the unfairness of it all in my mind. That I still remembered that other person and I missed her.
How do you try to explain to other people how it feels like every morning to wake up knowing your day will be exactly the same as the day before and the day before that and the day before that! Like the movie ``Groundhog Day''. In the beginning of your ``undiagnosed illness'' just like the main character of the movie you keep thinking that you will have a new day when you wake up. That the day is new and every day you can start over. Then after awhile you would just except even that you will feel a little better when you wake up. Like having the flu, you come to accept that you feel like ``crap'' but yet you know eventually it will go away and you will wake up again to that feeling of a new day.
Only....... to finally come to the acceptance at some point over the days and months that drag on that you will wake up with the same body devastating illness just like all the other days before that. A chronic condition, an undiagnosed illness. Over 12 doctors and no diagnosis. How can you explain that to someone else?
So I wanted to write about my experiences but in April 2006 when ``I'' finally figured out what I had, I was just glad I knew what I had; then months of herxing so bad from having to wait for antibiotics so long, I could barely get out of bed; then replaced by the fear that many never get over Chronic Lyme; then months of antibiotics and illness caused by the antibiotics themselves; then not wanting to be on antibiotics for years only for it to come back again; so then using herbs and using myself as my own guinea pig because I wanted to live; then always waiting for the other shoe to drop thinking it would come back. 8 months of consistent antibiotics, months and months of herbs.
I lay in bed last night Decemer 30th 2009 - under the flannel sheets and just encompassed myself with the feelings of warm and well with no sweats, no fast heart rates and just relished in the thought I could sleep again! No longer will I take for granted the things I lost like the ability to sleep, walking up a flight of stairs without breathing heavy, my brain...the brain truly is a beautiful thing to lose and until you've lost it to brain fog from a disease and were lucky enough to get back again there is no purer joy, and again to be able to experience such health through the literal thrill of a run on a country gravel road with the sounds of the stones crunching under my feet as they hit the ground.
I am back! Despite the nay Sayers such as people who because they can't seem to get well believe no one can; despite some doctors that blame the victim; despite our current state of a terrible medical system with the insurance and the pharmaceutical companies running the show.
NOW 4 1/2 years since becoming ill and 3 years off consistent antibiotics (January 2007) I am ready to tell my story because I know you CAN get better from lyme or this lyme like illness. I did!
Posts: 13 | From Lyme is everywhere USA | Registered: Dec 2009
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posted
lymemommy LymeNet Contributor Member # 12495
posted 18 January, 2010 09:42 AM -------------------------------------------------------------------------------- There used to be a spot for success stories, but
it appears to be gone, so I figured I'd start a
new one with my son's story.
About 3 years ago, my son started falling asleep
at the lunch table in preschool. He was 4 years
old, about to turn 5. I figured maybe he need to
get to bed earlier, or that he was having trouble
adjusting to the time change. I didn't know that
this was a symptom of a lyme, in fact I knew
almost nothing about lyme at all. A few months
passed, then on 4th of July weekend, my son
started running a fever of about 105. I took him
to the doctor and the ER, was told that some kind
of virus was going around. The fever lasted for 9
days, at about the 5th day he got a strange pink
rash spot on his chest. He was again taken to
the doctor, who didn't know what it was, but was
thinking along the line of juvelile rhemetoid
arthritis (JRA). She ordered bloodwork for
several different things, including a lyme wb.
Over the next few days,more pink splotches
appeared all over his body, until he had over 20
of them, on his chest, back, genitals, arms,
legs and face. Then the spots started to clear in
the center, and became the classic bullseye. I
called the doctor again, who felt strongly that
this was NOT lyme. Then following day, the WB
test results came in, and sure enough.... The doc
called, gave me the results, and said she was
going to call in an Rx for abx, that he would
take them for 3 weeks and be fine. She said there
was no need to bring him back in.
And that is how our lyme saga began. 3 weeks of
ABX were not enough, he could barely get up. We
were able to locate an LLMD, who recommended that
a second abx be added, to augment the
effectiveness of the first. He had his first
herx, which was horrible, but thankfully only
lasted one night. His symptoms over the next six
months included headaches, migrating jiont pains,
legs "too tired to walk", mood swings, physically
and verbally aggressive behaviors, light and
sound sensitivity, loss of sensation of pending
bowel movements, leading to total bowel
incontinence, and a loss of previously attained
reading skills. (I'm sure there were other
symptoms, but these are the ones that jump to
mind.)
After one full year of treatment, my son still
tested IgM positive for lyme. Most of his
symptoms had subsided, but he had persistant
night sweats. An EEG completed around this time
showed that he was having temporal lobe seizures.
He had completed kindergarten, but had struggled
to regain skills that he had at the age of 4. One
the plus side, he had regained sensation of
pending bm's, but he was resitant to using the
toilet due to all of the difficulties he had had.
The second year of treatment was a slow but
steady progression. His EEG's continued to show
seizure activity. The night sweats decreased, and
finally stopped by the end of the second year.
At this point, he started to titrate off of
medications, until finally he was medication
free. After 2 1/2 years, he was medication free.
His most recent EEG was "almost normal" and he
has no symptoms of lyme. He is now reading
chapter books, and is keeping up with his
classmates both physically and cognitively.
There is no guarantee that he will not relapse,
but for now, we will enjoy his good health, and
make the most of each day.
Take care all, I hope that his story gives hope to others.
kp
Addendum: Thank you all for your responses! It is a great relief to see my son finally off of abx and doing well, and although I will always worry that much more about every ache, pain, cough or sore throat, I beleive that we must revel in this moment of success.
For those that asked, his abx included: ceftin, zithromax, suprax, mepron and planquenil,plus of course probiotics. He was very resistant to any type of powdery stuff that had to be added to something like yogurt, so naturopathic tx wasn't an option (the screaming tantrums to get any such think into him just wasn't worth it, and seemed counterproductive).
No, he did not at any point take seizure meds. He had absense seizures, not grand mals, and his neurologist did not feel that meds were appropriate. He had EEGs every 6 months, and they consistantly showed improvement, with the most recent being almost normal.
I remember what it was like when my child was at his sickest, and I know how important it is to hear that there is hope, that some do indeed get better, even those that have clearly progressed to the neurological stage.
daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Lymemommy/kp, thanks again for sharing.
I believe the success story of your son is bringing great hope to many people.
What a great attitude you have. Your little guy is blessed to have a mommy like you.
Isn't it amazing how after going through something like that (Lyme Disease) a person, a family can actually experience life more abundantly than another who may even be in perfect health yet is just drudging their way through life?
Living in the moment is a very good thing--actually great thing!
My prayers are with you for his continued health and for your continued peace.
Rhonda
Posts: 2188 | From Oklahoma | Registered: May 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Moderators, thanks for putting "Success Stories" in a place that is easily spotted. I was reading through them again last night. WOW! Posts: 2188 | From Oklahoma | Registered: May 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
hikerunner Thanks for writing your post.
There truly is a right time for everything, including writing. You have a gift for writing and I look forward to reading your book.
May this be your best year ever!
Posts: 2188 | From Oklahoma | Registered: May 2008
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I would like to thank all of you for your concern and support.
This is my long version for those who are able to read it or have friends or loved ones to read it for them. For a long time I could not see to do anything. Thank God my husband found this site for me.
As you might know there are no short answers to 1this truly wicked disease.
I was one of the lucky ones! I wish all could be this lucky and fortunate. I am so sorry you are sick and pray for your recovery.
My symptoms started all of a sudden 9-25-03 when I awoke. They were so severe that this was a definate red light flashing.
My head, only on the left side, hurt so bad I could barely see. It felt like large spikes being driven into my head (about eight).
I could not sleep for more than 10 minutes at a time (for five months).
Within four months: 1. The left side of my head was numb except for excruciating constant pain inside.
2.A strip (one inch wide by five inches long) of my hair fell out on top of my head.
3. My vision was so blurry,double, triple, things that were on the ground appeared to be in the air, things were farther over than I reached, I could not see to do anything. I could not go into sunlight without covering my left eye.
4.I lost fourty lbs. My taste sense was messed up and I could not eat any salt (too salty),no pepper (too hot), No sugar(too sweet). I also couldn't stand to smell anything. It made me vomit(sorry), I did this daily even though I could not eat.
5.My left sinus stopped working, I could not sneeze or blow any mucus out. My tear duct or gland stopped working, I could not cry it hurt too bad when I tried. I could no longer whistle.
6.The only thing I could make myself do was attend all Dr. appointments my family could get for me. I had twelve apps. with MDs, two neurologists, a sinus specialist,and went to at least six different establishments, including two emergency facilities. I had been given several antibiotics since this acted like an infection, A MRI on my brain (which was negative and made me feel better about tumors), and very few pain pills which did not help the pain or anything else.
7. Each time that I was prescribed an antibiotic I got worse. I did not know that the antibiotics were killing germs which were turning into toxins and killing me. There were no Drs. who knew to tell me this either. This was good information for my LLMD, that by itself was an almost positive for Master's desease or (borreliosis) for me.
8.Sinus specialist had enough sense to make me an appointment for a MRI when he concluded it was not sinus related.
9.I was told after my second visit to a local emergency facility that "sometimes our brains tell our head to hurt". I also had contacted Bell's Palsey and could not open my left eye very wide,(I did not know what was wrong), they said as long as I could take my fingers and hold my eye open that it was open,I knew that the pain and symptoms were real no matter what anybody said.
10.When I went to Neurologist for MS and other related diseases, I was normal. I had plenty of strength in my arms and legs and my balance was fine. Dr. said he did not know what could be wrong with me, this was the first Dr. who told me that.
11.While my husband was second guessing the neurologist oppinion surfing the web, discussed my symptoms with her. She had some of the same symptoms and sent him to LymeNetFlash, she must have been God sent. This was in Jan.2004. I felt so much better to know that someone else knew what I was going through was real, not an over-active brain. It also helped knowing that it was a disease and when you go to the right Dr. a LLMD there is help and hope. This did me more good than all the pain pills that I had taken.
12. On my way to recovery; I immediatly made an appointment for a Western Blot test listing ALL BANDS. I then made an appointment with an LLMD located five hundred miles away.
13. My test results were totally negative according to the Dr. and lab in my town. I had already been warned about this and knew to take it with me to the LLMD.
14.My appointment was in Feb.2004. As soon as my Dr. saw a positive band he knew that I was 98% positive for Master's disease or (Borreliosis). When I told him how sick I was after taking antibiotics for forty days, he knew for sure. He explained to me about the toxins produced by the decaying germs, they are too big to pass through the blood streem without decaying first.
15.My Dr. gave me a wealth of information about this horrific disease, about fifty pages front and back. He instructed me to have my loved ones read it to me over and over until I could comprehend some of it. There is so much going on that he could not possibly cover it.
16. He told me to begin to remove toxins from my body with; 1. activated charcoal tablets and extra virgin oil. 2. apple cider vinegar and unpasturized, unheated honey. 3.Vitamin C 4.Detox Max Plus (this stuff is great)
17. He told me to take good antibiodies to replace the lost ones in my intestine, and to eat yogurt and buttermilk.
18. He told me to read all the literature and educate myself.
He told me to keep taking one antibiotic until I stopped herxing from it, and stopped continuing to feel better.
He said that if I was not in New England when I got the tick bite, then what I have would be called Master's disease or Borreliosis.
Ticks in the USA have a number of infectious diseases. They can have as few as one and as many as there diseases, some of these are Borreliosis, Rocky Mt. spotted Fever,Babesiosis,ehrlichiosis, Bartonella(cat scratch disease),and tularemia(rabbit fever). For this reason the USA disease is different from New England Lyme. Studies done by researchers with microscopes have seen a difference in the rash of the two.
Here is a list of antibiotics that I have taken; 1.Nystatin- intestinal yeast controll 2.Doxycycline- targets most tick-born diseases 3.Clindamycin and Quinine-targets Babesiosis, rotated every ten days with Amoxacillin ten days- to target bacteria hiding in cell walls L-form 4.Flagyl- the only antibiotic which targets the cyst form of Borrelia burgorferi (a Lyme bacteria) and protozoa which is not a bacteria, virus, fungus or yeast. 5.After five weeks of Flagyl,Biaxin or another antibiotic has to be added to kill the spirochete (or spiral form) of bacteria which the Flagyl has chased out of the cyst. 6.Rifampin- targets Bartonella (cat scratch disease)
2005 prescribed antibiotics; 1.Erythromycin 2.sulfa with Flagyl- targets both bacteria and protozoa 3.PenVeeK 4 Tetracycline- more water-soluable, gets into tissue better. 5 sulfacetamide-antibiotic eye drop
2006 prescribed antibiotics; 1.Malarone- targets malaria and other similar diseases. 2.Minocycline- targets the brain area helping with cognitive problems, and any neurological problems originating in the brain.
3.Zithromax with Plaquenil- Zithromax targets the cell walls. Borrelia burgdorferi (a lyme bacteria), have the ability to get rid of their cell wall, this antibiotic works on the inside of the bacteria to kill them. Plaquenil is a quinine derivative but milder. It is one of the few antibiotics that is able to work in an acid enviroment. White blood cells attack to kill germs, the germs get attacked by Lysosomes inside the blood cells which have an acid enviroment.
posted
FinallyWell Junior Member Member # 22956 posted 24 October, 2009 ------------------------------------------------- In five years, I've never posted a message to LymeNet, but I have taken advice from many members. I promised myself if I ever got completely better I'd post a notice so others would know that Lyme, Babesia, and Bartonella sufferers (yes, I had all three infectiions) can be healed.
At one point, I was unable to walk and almost blind in one eye. Now, I've been without symptoms for 14 months and I'm off of all antibiotics. A couple of years ago, I thought I would be on antibiotics for the rest of my life.
I found my great doctor through ILADS, which I learned about through this site.
If you are infected, don't give up hope. It's a long journey back to health, but I feel better now at 47 then I did at 30. I also learned how to take care of myself along the way. I never thought much about herbal supplements before becoming ill, but now I swear by them.
Good luck to you all!
P.S. Excercise when you are able and stay away from sugar. ---------------------------------------------- posted 26 October, 2009 06:19 PM ------------------------------------------------- Several members asked me to post the treatment regimen that led to my recovery. Here it is:
June 2004
Two weeks of constant headaches followed by bulls eye rash on arm.
MD prescribed three weeks of Doxycycline. I made certain to eat yogurt every day while on antibiotics. I learned that lesson years ago. Note: Lactose intolerant sufferers can usually digest yogurt since the lactose has been fermented.
Wasn't worried since my husband had Lyme two years previous and fully recovered.
July 2004
Three days after stopping Doxy I woke up with numbness from below my knees down to my toes. Went back to MD who was clueless.
Over the next two weeks, I developed many symptoms of late stage Lyme disease, including:
My MD told me it was too soon for me to be that sick. I finally told my MD I wasn't leaving her office until she made an appointment for me to see a neurologist.
Neurologist put me on IV Rocephin for one month, which took care of all my symptoms.
June 2005
Woke up with completely blurred vision and pain in one eye. Sent to two different ophthamologists. One thought I might still have Lyme. Neither could help me. I finally bandaged my eye for four days until the pain stopped completely. Vision not only returned, but went from 20/22 to 20/15. I wore sunglasses whenever outside since any light continued to cause stabbing pain where the optic nerve met my eyeball.
October/November 2005
Numbness below the knees began again while on vacation. I had fatigue and slurred speech by the time I got to the MD. He told me I had chronic fatigue syndrome. I told him I had Lyme and I wasn't leaving without Doxy. He gave it to me but told me it wouldn't help. It helped my eye but left me unable to walk for days (I guess it was a Herx but I didn't know at the time). Once I started walking again, it was excruciatingly painful. Each day, by the time I finished the slow walk to my office, I had tears streaming down my face. That lasted for about a month
I found Lyme Net and started looking for success stories. I found none. My mom told me an MD friend of hers told her I'd never get better BUT a doctor could give me drugs to keep me comfortable and antidepressants to keep my spirits up. I believed her for about a day. FYI: Don't listen to naysayers!
March 2006
Previous MD kept me on Doxy until I could find a new MD to treat me. Found current LLMD through ILAD and Lyme Net. He told me I was probably co-infected. By that time, I had no respect for MDs. I asked him to keep my on Doxy for several more months and I'd be fine. My symptoms were gone except for my sensitivity to light. My vision returned to my normal 20/22.
April/May 2006
Attended Lyme Conference in Virginia. Downloaded Dr. Burrascano's protocol and followed what I could - - mainly exercising, reducing sugar and no alcoholic beverages at all.
December 2006
LLMD finally talked me into being tested for Babesia and it came back positive. He put me on Mepron and Zithromax, along with Doxy. Herxing felt like I had been thrown from a train but only lasted a day and occurred every two weeks or so for several months.
March 2007
Developed eye twitching again and extremeties began falling asleep at night. Extremely stiff neck (could not move my head from side to side for a week). CD-57 at 3. Herxing had stopped. LLMD put me on Clindamyacin along with Doxy and Zithromax and I began herxing again, but not as bad as before.
June 2007
I had reached a plateau and I was feeling hopeless. My LLMD told me I might not get better. My husband bought me Healing Lyme by Stephen Buhner.
Began seeing a nutritionist/herbalist who put me on several herbs, including artemesinin and powdered mushrooms.
July 2007
Mild herxing while on herbal supplements.
April 2008
CD-57 at 18. LLMD noticed microvascularization on my face. I also had a stiff neck and still had problems with numbness in extremities in cold and while sleeping. LLMD sent me for Bartonella test and it came back positive with a photograph of many infected RBCs. He said it was the worst case of Bartonella he'd ever seen. Prescribed Rifampin, Bactrim and Zithromax.
June 2008
Finally symptom-free! LLMD dropped Bactrim.
September 2009
CD-57 at 45.
February 2009
Began herbal supplement called Lyme-Aid I found online which follows Stephen Buhner's protocol for Lyme. Only took one pill/day since I felt fine (just a low CD-57 count).
March 2009
CD-57 the same. LLMD prescribed Plaquenil, which I refused to take due to my previous eye problems.
June 2009
Rifampin and Zithromax dosage cut in half. Still feel fine.
September 2009
CD-57 at 70. Vitamin D levels normal. No sign of infections. Antibiotics stopped.
October 2009
My LLMD won't say I'm cured (it's too soon), but he does say I'm resolved. My own body is able to fight the infections now and I have been symptom-free for over a year. That's good enough for me.
Everyone harbors bacteria, which kept in check, aren't a problem.
For now, I'll keep taking my vitamins, avoid sugar and alcohol, exercise a few times each week and take the herbal supplement I get online.
posted
Topic: SUCCESS STORY in progress!! (Here's hope!!) SarahL Member Member # 11452 posted 15 October, 2007 ------------------------------------------------- As I was posting last week in the Medical thread about my neuropathy driving me insane, I thought, you know, for all the things that are still vexing me, there are a lot of sx I either don't have anymore or sx that have gotten so much better I barely notice them.
Then I saw the thread, "How come there are only 45 success stories," which had the potential to depress so many people. Personally, I *understand* a thread like that, but I can't allow myself to think negatively or nothing positive will come to me (or at least, that's what I believe). Of course, I still slip into that negative mindset sometimes - everyone does, and it's easy to do when you're suffering!
So I'm starting THIS thread, and I hope it's someday pinned up at the top like the success story thread, since there are hundreds of us IN PROGRESS but not cured yet.
It might give hope and help encourage positive thinking, which my doc and I agree is half the battle (the mind-body connection is HUGE, especially with chronic illness and chronic pain). Of course as I type this, I'm knocking on my wooden desk.
I am a success story IN PROGRESS!!
My improved or eliminated symptoms are:
Overall pain is much less Insomnia is gone I have several good hours each day now I can grocery shop for a week's food! I never have a day when I can't walk now My cane is leaning in a corner, dust-covered! Walking at the mall/flea market/wal-mart isn't torture on my legs anymore My fingers aren't locking up anymore (I can type!) Most days I can think clearly Most days I can see clearly I can lift my 5 year old son now I can play with my son on the floor and not worry that I won't be able to get up I can travel without as much pain I can drive without fear that my mind or body will give out on me I'm swelling less in fingers, ankles and face My Bell's Palsy is less frequent and goes away more quickly
I have been given my life back, albeit in a limited capacity. I'm thankful for each and every tiny bit of healing. I have a long way to go to optimal health, but I can function now, can drive now, can play with my son and *ENJOY* life now. Pain is not overwhelming my life anymore.
Now, if that's not the makings of a success story, I don't know what is! I'm getting there, slowly but surely, and I know there are many, many others out there just like me - on their way to putting Lyme in the PAST!
You guys are a huge part of my road to recovery, even though I mostly lurk. I've learned so much that has helped me, and I hope this post helps someone who is looking for hope or who is facing the daunting idea of years of treatment for Lyme. You *can* get better, you *can* improve, you *can* do this!!
posted
Author Topic: Silver Lining / Success for one Visual Afterimage Man LymeNet Contributor Member # 10435 posted 06 January, 2007 ------------------------------------------------- I broke down and informed one of my co-workers that I have been dx with Lyme. He informed me of another person who was just about 100 feet down the hall from me who also had been dx.
This poor fellow had been getting worse and worse over the course of 6 years. At the time of dx he had been stricken to a cain and was forced to give up many of his hobbies.
This man, was determined not to listen to the ducks who give him dx like fibro, CFS and possible MS. He kept his search going and going until he found the right doctor who tested for LYME.
I met him last week and he's walking like a normal human being again. He has thrown away that stupid cain for good. He admits that he's not 100%.. yet! But he feels pretty good now that he's able to walk without assistance. As a matter of fact, he walks totally normal.
It's amazing to me that the majority of the medical community still does not recognise Lyme as a common chronic illness. He got the same story that I did. Lyme isn't around here. It's Fibro and CFS. Give me a break.
Today he's continuing with his oral abx. He admints that he might spend the rest of his life on abx, but if that means the difference between being in a wheel chair or walking totally unhindered, then he'll take the pills!
Hang in there ya'll. You will get better.
-------------------- 26 months of treatment. And counting.......
daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Meg, I too have my success story posted somewhere above yours. Smile.
It was great reading your success story. Your info is really great with all the details. I know it is, and will continue to be, an encouragement to those who are battling Lyme.
There is success at the end of the tunnel and we ARE all Lyme Survivors!
Posts: 2188 | From Oklahoma | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This inspired me, so I was thinking you would like to know too.
While speaking to a LLMD... a fairly new one who has been following ILADS for the past 4-5 years or so....
They told me that 10 of their patients had gone off disability after many years of having to be on it.. and had gone back to work and are doing fine.
Every year since the spring of 2006 as I began recovery from lyme, my intent has been to thank you. I think of you every Thanksgiving in particular. With each and every year I successfully get through, I thank you. I thank Lori. I thank the many that shared their experiences, that shared their knowledge, their history... For without lymenet, I would be alone. I'd had lyme since 1996 and by 2004 I was bit again, and spiraled into such physical and neurological weakness.
I found a doctor that I could afford, that worked with me on a plan of action. It was not until I was in the clear that I was able to reach out to 2 other sufferers by phone. I was able to increase who I could let back into my life, as I was only able to care for my daughter and myself. I am active now. I have friends, old and new that are like my family. I met many people here, that have made all the difference in the struggle to be well. I pray thanks to you and those here every day.
Yours truly,
Lisa CT
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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posted
I found this board in 2004 when my daughter who was 2 1/2 got bit and was infected with Lyme. I found out 14 months later I was infected and my 14 mos old was infected probably from being breastfed all that time...
Thanks to the great people on this board, my girls saw the best ped for Lyme, Dr. J. My oldest is now eight and has been symptom free for 4+ year. The youngest is six was treated for 3 mos and seems to be fine.
It's been almost a five year battle for me to get to this point where I can say I feel I have finally beat this disease.
My last treatment was 1 year ago and it was 6 weeks of IV followed by a couple of mos of Doxy and Rifampin for Bartonella.
Although, I haven't been able to post here, I do what I can to support the Lyme community. I've done lots of Lyme awareness activities, worked with my local board of health to do a mailing, gone to Boston to support legislation/rallies, gone to NY and CT for rallies, legislation and in support of Dr. J.
I still contribute to Dr. J's defense funds because I know other kids will need him. I tell everybody all the time about Lyme...I have packets in my car and hand them out...I've helped people, who've helped people..
So, thank you to those of you who pointed me in the right direction and helped me get through this (Tincup, Lymetoo, Maddog, Gigi, kam, kgg,alknwf, bettyg, treepatrol, Melanie Reber,siebertneurolyme(I wouldn't have been able to read any of the post if it weren't for you and bettyg breaking them up)..so many others).
You've each helped me and in turn I helped others. I see lots of new names which is sad, but good that they have found this site.
I also just want those of you trying to get through this horrible ordeal that there is a light at the end of the tunnel and things will get better. I just read that Patience for people with Lyme is not a virtue...it is a survival tool and that is so true.
Best wishes, Deb
Posts: 441 | From USA | Registered: Jul 2004
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Deb,
Thanks for sharing! You are an amazing woman, mom, Lyme Survivor, and inspiration.
God bless you and your family! Rhonda
Posts: 2188 | From Oklahoma | Registered: May 2008
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quote:Originally posted by paulieinct: Hello all. I took a vacation from the board for a few months, but I am back to give encouragement to all who despair that they will never get better.
After almost 2 years of antibiotic treatment, I am finally turning a corner for the better. My fatigue is GONE.
Cardiac issues (arrhythmia, tachycardia) GONE. Near syncope and seizure-like episodes GONE. Chronic constipation GONE.
Severe itching episodes GONE. Cramping and twitching of muscles, incl. facial tic, are GONE. Cognitive symptoms mostly GONE. Burning neuropathy in my feet, not gone completely, but MUCH IMPROVED. Stiffness of hands and clenching of fingers into a fist not gone completely, but MUCH IMPROVED.
My strength has returned and I am going to the gym 3 times a week for vigorous workouts (strength training, not cardio).
Vision has IMPROVED, but not 100 % yet.
Balance has IMPROVED, but not 100% yet.
In summary, I feel better and stronger than I have felt in YEARS.
I am not "cured" yet, and will likely continue treatment until I'm 100%, but my Lyme doc is very pleased with my progress, and so am I.
To everyone on this board, do not despair. There is HOPE.
A regular exercise program is IMPORTANT. My Lyme doc kept after me to get my fat butt off the recliner. I was too tired early in treatment to do much. When I started feeling a little stronger, that's when I started a rigorous workout program.
Planet Fitness gym only costs $10/mo, and they are open TWENTY-FOUR HOURS during the week. PERFECT for Lymies with insomnia.
My protocol during the last several months: penicillin, biaxin, fluconazole, plaquenil, LO-DOSE NALTREXONE (will bring your libido back), ENZYMES like Wobenzym-N and lumbrokinase to dissolve biofilm,
supplements like NAC, Co-Q10, resveratrol, DHEA, weekly B-12 injections, lots and lots of probiotics.
To get to sleep, I take generic benadrl and .5mg of clonazepam. I take the LDN as soon as I start feeling drowsy.
I never went on IV abx, too scared of the gallbladder thing. Just orals.
KEEP THE FAITH. This can be beaten. I am getting there, and wanted all to know. I know how much despair there is among Lymies. =Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
paulieinct,
I couldn't wait to see who added to this thread when I saw the number had changed.
Thank you so much for posting.
What a great report--"feel better and stronger than you've felt in years" that's worthy of a hallelooooooo!!!!
See your sense of humor is intact, "Planet Fitness...for Lymies with insomnia." LOL
Praying and believing with your for 100% recovery!!
Blessings multiplied to you, Rhonda
Posts: 2188 | From Oklahoma | Registered: May 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I did not know for sure if I was ever going to be able to post in this spot, but here I am.
I have been treating my wife for over five years, learning, and refining my treatment method, and upgrading equipment, as it became available.
Rife type frequency treatments is all I have been using for the last couple of years. I did not think I could reach deep into the body for the bacteria any other way. I had to use a more powerful device in the end, but that made a huge difference.
I also had to eliminate Bartonella, that I did not even know existed until recently. That was not too hard, but it did cause some nerve damage on the way out. I may have killed that a little too fast.
In all likelihood, I am going to treat her a couple of more times but not for quite a while. I am going to consider it cured until I have some indication that it is not.
Her strange symptoms since the last treatment have subsided for the most part. Dizziness is gone, weakness is gone. She no longer has any swelling in the ankles. That is another first since infection. She still has numbness in a few places that comes and goes. I am going to say it might be nerve damage from die off, but it may be that she has a partially blocked artery, and hopefully we can get that diagnosed definitively in the near future.
Unless something else crops up that looks like Lyme symptoms, I am calling this one done, and at least for the time being, successful.
Now the long wait and watching starts.
Time will tell the true story, but I am pretty optimistic that even if some symptoms do come back, I can eliminate it.
Thanks to all here for the support, information, and help when needed. I learned a lot here, and I hope everyone else can post on this thread in the future.
I will be around, if anyone needs some help with frequency treatments. It is the only method I have any expertise in.
Thanks again. You are a great bunch of people, and Lyme can't take that away from you.
Dan
[ 07-11-2010, 12:12 PM: Message edited by: D Bergy ]
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'd love to add to this thread of success stories.
I had excruciating headaches for a couple of years which finally got so bad I thought I must have a brain tumor. Went from GP to neurologist to hormone doc; finally got an MRI showing numerous frontal lobe and other lesions. MRI report stated they were compatible with MS or possibly lyme. I thought "Hmm, wonder if that could be from that tick I had a couple of years ago that bit me and that rash I got there that I ignored?"
This meant nothing to my neurologist, who declared there was no lyme in California and in fact, there were no ticks here, for that matter. This was pretty stunning information. "Hogwash," I thought.
I discovered LymeNet. Got referred to an LLMD just 75 miles from me. Had every sign of neuro lyme, though it fortunately never manifested in muscle aches or "body" type of lyme. Just mainly brain pain and fog. And incredible tiredness. I could hardly drive without falling asleep. I could not remember two sentences ago.
Tested CDC positive with IGeneX. Big relief as neuro pushing me for MS diagnosis. Did a month of IV before insurance shut me down. Then on to orals. First six months saw little improvement. Close to a year later I gave in and tested for babesia -- choosing JUST the cheap test done by Sonoma County due to limited finances. Luckily, it was positive for babesia WA-1 (now b. duncani). Treated it twice, several months each time, with Mepron/Zith/artemisinin. So not fun. So much increased pain! But at the end, so much better.
My combined treatment was a little under two years. At the end I've still some memory deficits and my executive functioning skills are pretty much in the toilet. However, I've learned to work around them. The headaches I thought would never end did end.
I lost my high paying job and took a year off on disability. I reinvented myself as a wedding photographer.
Over the next couple years I had two additional tick bites. (See 2008 evil tick bite and 2009 evil tick bite - one more time. ). Both times I was able to immediately get back on antibiotics. Neither caused me the grief of the original (ignored) bite.
Today I do wedding photography plus paralegal work. I have to write things down to remember them long, but I no longer get lost trying to figure out how to get home. I don't walk around holding my head because of blinding headaches. I've been off antibiotics entirely for several years (except for a couple months for the bites above) and feel quite fit.
To those who feel it's never going to get better: It IS. Just keep putting one foot in front of another. Trust your LLMD.
Watch out for ticks, educate everyone you know, and keep up the fight. There is life after lyme!
Posts: 3193 | From Northern California | Registered: Apr 2005
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
For those of you reading this thread and wondering why there aren't more stories from more people here,
please know that the vast majority of people who actually come back and post their successes on the forum never actually put them in this thread, so they are lost to the archives, probably never to be found and read again.
I would say in my time as a member here (and before I signed up) I have seen at least 95% of those with success stories never put them in this thread.
So take heart, this is just a very very tiny sampling of that group that makes the effort to come back and let us know. Then consider that MOST people never even come back to post about their successes.
On that note, here is a thread from the Medical forum to add to this sticky. I don't know that the poster will be back to ask them to post it here, so I am pasting a link to it just in case, before I forget about it and it gets lost like the others:
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
After three years, and two bites (that I know of)I have been enjoying a period of recovery.
Still continuing daily abx, supps, and the regimen of nutrition but getting better.
I have been free of acute symptoms for a month. and steadily improving since August second bite.
Mentally, emotionally, and physically the acute daily recurring symptoms have subsided to where I believe I am getting myself and my life back.
that is so welcome but also a puzzle to a degree after this...
No I am not stopping treatment yet by any means but I am so grateful for this period of so many symptoms being absent.
What remains is some of the longer term nerve impact in lower body and I do notice an underlying bartonella provoked anxiety that will probably subside with another round of homeopathics.
It did last time. also have an occasional spark in leg. dizzy if too tired.
but i went through the latest cycle without symptoms recurring or showing up as a die off.
Ball and chain crushing fatigue -gone. Daily so sick feeling - gone. Headaches,dizziness, rashes, herpes outbreaks- gone. extreme anxiety and depression-gone racing heart - gone hurty bumps on head -gone central nervous system impact is improved a lot and more..
The story: Nov 5 2007 hospitalized with sudden onset indescribable pain in spine followed by waistdown paralysis.
Three days IV steroids. Yes, steroids. Released after five days. Physical therpy to walk, climb stairs, drive again.
gradual improved in bwel and bladder control and walking...but not gone. Definitely lasting effects.
One year later a friend paid for me to see an electra dermal practitioner.
she found the lyme. energy therapy, homeopathics, detox, parasite cleanse, .and many targeted supplements. effectual prayer and megabucks later...I improved some more.
Massage therapy helped reconnect upper and lower body nerve pathways. Color therapy (art) helped too. Everything has helped.
Well except the steroids the neurologist put me on...that has most likely complicated the nerve recovery. but some do not survive it at all with lyme.
also helped by integrative doc who was helpful with antiinflammatory approaches, despite being lyme illiterate...no...she was in chonic lyme active denial.
but electra dermal practioner had reached all she could do--- after a point it stalled and worsened in a different way. she wasn't recognizing that either.
I did not know I had undiagnosed bartonella.
also in a way perhaps we do not realize, I believe pre existing herpes infections (and probably plenty else) can complicate the picture.
so the third year was the (another?) year from h^*l. A nosedive mentally and emotionally and stuck.
I did not know it was bartonella assaulting my brain and making me want to die.
Practioner not getting it.
A state of true desperation for many months and then prayer from friends that pulled me out of the bottom of the pit to about halfway up...I at least didn't want to die though I was still beyond miserable.
Then the second bite.Immediate acute intense symptoms. Erythrem migrans rash. Emergency room.
Clinical diagnosis. (thank God for an informed ER doc who did a clinical dx ...and who knew I would be grateful for the dang rash?!)
but that catapulted me here and into a new treatment protocol with a lyme literate ND with antibiotics.
And a rapid new learning curve. even though my sister had had it and I thought I had a somewhat of a clue. Well I did but so much more.
Such a uniquely individual journey to what works. But with liver support, adreanl support, herbal antivirals, abx, and the all so important nutritional regimen...
Not to mention forgiveness on more than one occasion. Not an easy matter when you life has been at stake ...more than once.
but still ultimately essential.
here I am.
Grateful. working to embrace today as good days that have lasted a month
and maybe just maybe a whole lot more of these good days for a long time.
who knows what the future holds? I could never have guessed back when that lyme & co were in my future.
Never mind the severe impact of losing vision, dreams, health, mental status, functionality...
In short life as I knew it went bye bye. The financial strain has been extraordinary. In the midst I moved. How I pulled that off is still pretty miraculous.
but I also had timely gifts from friends and family...an unexpected tax refund...a personal loan and paring to the bone.
Even dropping health insurance to pay my medical costs..they weren't. It was survival mode.
Not something I recommend at all but I did ...to keep a roof over my head or the meds...
but here I am. challenges are still ahead.
but it is so much better.
I thank God for all to whom he brought me. For every willingness of anyone to share their experience, knowledge, feelings, strength and hope.
I am surviving and beginning to thrive.
from just 6 months on here I know many are heroically fighting worse and some have it better...
but here we are...and in case you are reading this and wondering... there is great hope.
Never never actually give up. Even when you have no fight or effort left. Then let surrender take you through.
Recovery takes all you got...but all you got is not enough many times.
so do not be afraid to be vulnerable and admit need. I pray for your recovery, in the name of Christ my Lord..
that you recognize the encouraging hallmarks of recovery as it comes and that you are sustained in hope and courage during the process.
that the resources you need come to you and yours during this season of life.
all the best to you,
deerose
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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posted
Hi everyone !!! My name is Dave . Im new from MDjunction. Betty G referred me to here. I was infected w/ Lyme in May 2001. I just started treatment June 24th 2009. Im seeing LLMD. I was in such bad shape. Im 38 yrs old. I wasa body builder at tip top shape at 29 . My life went downhill not knowing what was wrong for almost 10 years. Im rebounding from treatment like SUPERMAN!! Im around 98% recovered. I still have tiny symptoms ranging from sore feet (very mild) to mild dizziness (spaciness) and mild heart flutter. Everything else is gone from night sweats to swollen glands..brain fog gone .Energy level high. I can focus and have great clarity.
I am almost 100%. I have a huge question. I would like to go in a HBOT chamber . I think the way Im healing so good that the HB cham. might be the nai in the coffin. Or should I not do HBO cham. since Im healing so good...Could this make things worse?? Thank you, Dave [Smile] P.S. So much to type I have a list of supplements and diet Im doing.
Posts: 8 | From NJ | Registered: Jan 2011
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I thought that ya'll could use a happy story and I'm glad to be able to have one to tell.
2010 was an amazing year of recovery for my teenage daughter, just amazing.
She was congenitally infected and became very ill at age 12. For 2+ years she suffered horribly in all the horrible ways Lyme sufferers do - seizures, mental illness, nausea, horrible pain, light and sound sensitivity, tremors, joint pain. She didn't take a step for two years and we had to put a feeding tube into her stomach to keep her alive. Many hospitalizations. Our LLMD said she was one of the sickest patients he had ever had (and he sees a lot!)
The end of 2009 found us at our wits end. She spent five days in the hospital on Morphine after she bumped her leg. Our LLMD suggested a medically induced coma (Ketamine), which we tried in late December.
In January everything started to shift. Her pain levels came down. The year we had spent with the LLND started really paying off and she was able to tolerate IV abx, which helped dramatically (they had made her sicker before cuz she couldn't detox properly).
It was a combo of many things, but once the improvement started, it was dramatic. In February she was able to start spending time in a warm water pool with a physical therapist and by April she took her first steps again!
It was an amazing spring. Instead of staying in bed all the time she wanted to see the wildflowers every day. She was able to start eating more. Everything was improving so rapidly.
She spent several weeks on crutches before she had the strength to walk again, but by summer she was there. I was able to slowly wean her off of all the pain and psyche meds.
She had missed three years of school, but in the fall, at age 15 she started community college with a light load and did very well. She had her feeding tube and IV line removed in the fall.
Today she is doing so well! She is still in treatment, but says she is symptom free!!!
I knew we would move heaven and earth to get her well, but the speed of it all, once it finally started, was such a wonderful surprise. Now it is my turn to get well. I don't have to look far for my inspiration
Update March 2012 - happy to report that DD is still well! Off abx for over a year and off all supplements for about 8 months. I wish she would stay on a few, like probiotics, but she doesn't want to. There are lingering PTSD issues, and here WB IgM is still positive, but she is healthy now and living a full life. So, so grateful!!!
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
Loved reading the success stories!!! nothing more healing than hearing how other people have made it through.
Posts: 17 | From Harrisonburg, VA | Registered: Mar 2011
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What a wonderful success story. My best wishes for continued recovery for you and your dear daughter.
Posts: 699 | From confusion | Registered: Jan 2011
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
Awesome reading folks, the wall will fall. keep em coming !! Wayne
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
gives me hope to hear this last powerful success story...and helps me stay commited to my protocol...my new doc will def do IV abx if I need it! just a reminder that the IV can really do the trick for some
starting IM abx for the 1st time on Monday...hard to believe it will really help...but, I DO trust this new doc. Have to find the strength to completely get off sugar and gluten.
hope to all!
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
Lord, lou needs more work.. send more recoveries.. bring Blessings to many and Praises to you, GOD
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
I just saw this post after posting a post asking for success stories, LOL.....
I'm looking for people to email me their success stories with their permission to use it...here's the text of my original post:
Hi all,
I am currently working on a special "project"....details to be announced at a later date..........
I am in search of Success Stories. Please send me an email at [email protected] with yours. Please know that I will need your permission to use and publish this information, so if you don't want your real name used, just give me an alias, or just a first name.
If you know anyone with a success story, please give them my info and ask them to send it to me. I sincerely appreciate it.....
I'm very excited, and I can't wait to complete this. If all goes as planned, it is going to help many many people understand Lyme disease, and give those who are suffering from it hope and courage to get their lives back!
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
this a great thread! congrats all on your success and thanks for letting us know things CAN get better.
Posts: 1728 | From USA | Registered: May 2011
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Let's see...recap - Had this active at least 30 years...was bitten by the tick that set things in motion when I was 7 in KY...but was infested when I was 3 in NJ...
I went from vibrant and active - incredible athlete - to a pain ridden athlete that would play until she dropped...8th grade was the end of it...
Finally dx'd based on a borderline positive WB when I in 91 - and after 3 wks of IV Rocephin and zero improvement (surprise surprise), my step-fathers boss got us in with a husband/wife team in NJ...
He dx'd me with classic Lyme...and we went from there...
Spent more then 12+ years trying all sorts of abx, supplements and even naturals...
Had come close once to remission - 8 months of nearly no symptoms - except fatigue...Doc wanted me to go 10 months before coming off abx...I wasn't the most difficult case - but complex for sure...
Made it 8 months - then the bottom fell out...Then several months after that - because preggo with kiddo #1...what a MISERABLE pregnancy...I was HUGE...
Her placenta was tested and cleared - but I do believe I ended up transmitting anyway via breast milk...
When she was about 3, I started up with Whole Food Fruit and veggie supplements...and my life started to change...
I still required meds - 120mgs morphine every 12 hrs, Lorcet 10's (2-4 a day) for breakthru pain...
And then I got preggo again...Twins...but I had a Great pregnancy - I was eating better and lost fat - then gained only babies...
They nursed for nearly 2 years, and Lyme had knocked my endocrine system for a loop...severe depression and what not...almost lost my kids and my marriage...
Moved to CO in 2006 - went to a homeopathic doc that discovered how beaten my endocrine system was - and my adrenals were near dry...so I started some homeopathic stuff...
Within a month I was preggo with #4...but we were broke...fortunately, I found a family doc, who, altho not an LLMD - she was willing to learn and work with me...
It was a tough pregnancy - but I got through...didn't have the money to be super healthy...got HUGE again...and she outweighed her sisters by 1-2+ lbs...
Ended up moving up higher into the Rockies when she was 18 months old - moved to over 8000 ft - and I started feeling better...less heat, less humidity...the shade actually works here (unlike in NJ)...
Started at that point on my natural quest. I had done a few rounds with abx - including Rifampin - which made me herx like crazy - I'm not a big herxer...
But I started my natural quest...it was rough at first, because I had to finally address the Babs and Bart infections along with HHV6.
Started on Samento, Cumanda, Lauricidin, and Artimisinin...samento (cat's claw for that matter) works for about a month for me and that is it...
Went on Carnivora - which is pure venus fly trap juice...works wonders but is costly...there are cheaper types...But it kept me from catching anything the kids brought home...
Had to finally go 100% Gluten Free - my guts were fried...so we started making tons of dietary changes...lots of juicing and just healthier options...
2 years ago, I was able to walk onto a soccer field and play - for the 1st time in 23 years - I was able to play...was asst coaching for my kids...
Playing once a week with local women...it was tough - but nothing I could not handle...Then joined a gym - played basketball - swam...I was doing better...but was still Fatigued and hurting...was only on Lortab 7.5...but I still needed them...
Oh - had also been on Lyrica after my youngest was born...for the nerve pain...but after 3 years - I was getting worse...turns out it was the Lyrica that was the problem. Got on generic elavil and have been on 25mgs for the past year and a half - never needed to up it...
Anyway - got a job delivering newpapers...What fun - in the middle of spring snow storms...was listening to XM radio and heard Dr. John Gray (the infamous Men are from Mars/Women are from Venus fame)...
He was talking about health...and superfoods...and he talked a TON about Maca...a root that grows in the Andes mtns...and its ability to nourish the endocrine system...especially the adrenals...
Now I was taking an adrenal support product at the time - and it certainly helped...but when I started Maca, Goji and a Dr. Gray product...things really changed...
Within 2 months, I quite the paper and got a job as a house keeper - and was able to work 8-10 days straight, cook and clean and care for my kids and hubby...hang out - Live Normal...
Symptoms became less and less...
I had also in this time settled on new naturals...
Spiro - for the Lyme and Bart...Takuna for the HHV6, Olive Leaf Extract, Elderberry, Schizandra (great for cognitive function)...and a few other things...
Kept refining the diet - learning to do a lot of GF cooking, no refined sugars, no processed foods...and by the end of that summer (last year) I was able to say I was in remission...
I no longer have Fatigue or Fibro - which were among my worst...but everything had quieted...I have been able to do things that I have never before done...or struggled to do...and I can do them on my own...
In August we moved back to where we started out in CO...I do have permanent issues with IBS...and I do have perm nerve damage in a particular area of my spine - due to an accident - and of course its a nerve that will kick up the IBS...
Nothing can be too easy...
I have truly come to believe that if you start treatment, by preparing the body...treatment can be much easier...I have had so many friends do this, and by the time they got on abx natural or convention or both...they did so much better...
I also have come to believe that if you focus on the endocrine system - because it has SO much to do with healing, that the digestive system and everything else will come in line...
Sure it takes time...But to me - 2 years to make success vs 28 yrs of struggling...is just a drop in the bucket...
And it would have probably taken less time if I had learned about Maca earlier - it was my missing link...
Oh and a note about Maca - for those who don't know...and some of my friends used this to get their hubby's to OK the purchase...It will boost the sex drive...A TON of positive feedback in that area...
So, I suppose that sums it up...tried to make it as short and simple as I could...
Hang in there - you just need to find the path that works best for you...
Christine
-------------------- We each have a right to be healthy, and no one has the right to jeopardize that! Take Charge of your health - and your life you are the only one who will! I know what I am & I know what I am not I know what I HAVE & I know what I HAVE not Posts: 33 | From co | Registered: Aug 2008
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posted
I wanted to post my lyme disease success story. When I was incredibly sick a few years ago, I recall how much I sought out these stories and wished there were more of them. Often, it was said on this board that people who get better do not return to post their success stories because they go back to living normal lives. I just wanted to return and post mine here to let you know that I am living a normal life and that there is hope and life after lyme. When I was very sick, I never in a million years believed that I would be here telling a success story of recovery. I wanted to post my story for Thanksgiving because I sure have a lot to be thankful for.
In January 2007, I was a second year law student at a school in Nashville, TN. In January or February I began to feel my health tanking with a combination of strange symptoms. I felt weak, the side of my head and later my body felt like they were in a constant vibration, I began losing a lot of weight (being too thin naturally)- the symptoms were getting progressively worse. I was very tired and had trouble thinking. I felt something very serious was wrong with my health. I had no idea what a tick even was and had no risk factors for lyme. I also suspect I was bitten on the back of my head since symptoms started there, but I did not remember a bite and needless to say nobody saw a suspicious rash.
Then, I went through the typical lyme diagnosis story. I went to over 15 doctors including those in infectious disease, hematology, oncology, and even a psychiatrist. Like many others, I was ridiculed, called a hypochondriac, sent to psychiatrists. One doctor did test me for lyme but an ELISA came back negative- but the fact that he ordered this test got me looking into lyme disease on my own. I scoured the internet for an illness that would fit my strange bouquet of symptoms, considering everything from cancer to exotic parasites.
I spent the summer in Chicago, trying to survive through working at my legal internship. I finished the term of my first internship but had to quit my second summer internship early due to the progressing mysterious illness. By the end of the summer, I was beginning to feel some strange joint pains and everything else was getting worse. At the end of that terrible summer, my now husband proposed to me- I was very fortunate that he stayed with me despite the fact that I was getting sicker and sicker without anyone knowing why.
Eventually, I read about the lyme controversy and testing issues and convinced a doctor to agree to send blood to Igenex for lyme and coinfection testing. When I saw the result, I finally realized I had lyme- not only lyme, but also all the coinfections including both forms of erlichia, babesia, rocky mountain spotted fever, and others I can't now recall (later energetic testing also found bartonella but this was not confirmed by the blood tests). All in all, I went undiagnosed for over six months. I take sole credit for diagnosing myself based on my internet research and the help of folks on this website who shed light on the huge political and medical controversy surrounding this disease.
I was happy we knew what the illness was, but by then my life was literally falling apart. I did not go back to Nashville for the school year and transferred to a law school close to home in Cleveland, OH, hoping to do a semester near my family where I could have some help. However, after going to school for three weeks, I realized I was too sick to continue. I took leave from law school for the year because I could not think or look at a book. I was so sick and tired that it was hard to walk around the block or do the basic tasks of daily life. My whole life, I prided myself on my intellectual ability and academic success and I could not even read anymore. I felt that I lost my entire identity and fell into a deep depression in addition to being just physically ill.
In September, I went to a lyme doctor in PA for treatment and started antibiotics. I got a PICC line and spent over five months getting daily infusions of IV Rocephin. One line got infected and I had to get a second line. To our dismay, the Rocephin did not really make me all that much better- it actually felt like I was getting worse. I continued doing antibiotic regimens, but they also were not doing wonders and I continued to feel very sick. However, I believe the antibiotics did stop lyme's progress and enabled me to very slowly get on my feet and begin exercising that spring.
When I was sick, my family tried everything to get me well. It did not help that I am somewhat of a pessimist and did not handle the challenges presented by lyme very well. During that year, when I had to quit school, I was so sick both physically and emotionally that I contemplated suicide. I felt that I was a burden on my entire family, that I could not recover or work again, and that I really had no future outside of being so sick all the time. Only the encouragement of my family, especially my mom's ``never give up attitude'' and care and kept me going in that very dark time.
We tried everything. In addition to antibiotics, we went exploring all kinds of alternative therapies. I went to an alternative doctor to get IV infusions based on energetic testing. My mom and I learned to muscle test and I took a huge bagful of various supplements each day, which we regulated based on muscle testing. I did all kinds of herbs, acupuncture, homeopathy, and massage for lymph drainage. At various points we purchased and used Dr. K's KMT 1000 machine the Beamray rife machine. We saw numerous alternative practitioners in addition to lyme doctors. Ohio is sadly a black hole for this disease as there are no conventional doctors I knew of then (or now) who recognize and treat this disease. There also are not many alternative practitioners we found in Ohio who have much experience with lyme. I suspect that most people suffering from chronic lyme in my state are misdiagnosed and treated for other diseases.
As summer rolled around, I still felt terrible and was not sure if I could ever return to Nashville to finish law school. However, my family and my fianc�e encouraged me to return to law school in Nashville. But I was still incredibly ill and could not take care of myself. My mother's employer was very generous and allowed her to work from Nashville so that she could stay with me and help me. I returned to Nashville, this time living with my mother, and eventually finished my final year of school.
Nashville, I found, had better resources for lyme treatment. We found an alternative chiropractor who had some experience with lyme, rife thrapy, and who practiced flower essences. We also found a wonderful conventional doctor who was in the process of learning about lyme disease treatment and who was even knowledgeable about the Patricia Kane protocol and to whom we went for IV glutathione infusions. I heard there were other practitioners who did hyperbaric oxygen therapy for lyme there too, but we never tried that. This was much more medical support than we had in Ohio. My ``lyme'' doctor at that time was in Connecticut and we had phone consultations with him. He was a whiz about antibiotics but did not do or know much about any alternative therapies. That year, I continued rigorous antibiotic treatment, trying different combinations. I took numerous antibiotics and meds during this ordeal, including bicillin injections, and the mepron yellow paint which literally broke the bank since I had no prescription coverage.
In May, I graduated law school and got married. A few months later I took the bar exam. Although I could think again enough to finish law school and study for and pass the bar, I still felt very sick. The antibiotics clearly helped but fell far short of any kind of cure. Also, when I tried to take breaks from antibiotics during that second year of treatment, I had to start them again very quickly because I would just slip and get worse. I lost hope that I would ever reach a point where I would go a day feeling energetic and normal and not having to think about this dreaded disease and I never thought I would be able to stop antibiotics for lyme.
After I took the bar, my mother suggested a radical step of going to Germany for treatment with the Bionic 880 photon therapy machine. She had read about the experiences of other lyme sufferers on this forum and on the internet and thought that it could help. In October my mom, dad amd I traveled to Germany to do the Bionic 880 treatment with Dr. W. In Germany, Dr. W's energetic testing showed lyme at the highest point on his testing machine- the needle of the machine seemed to strain the lyme detecting equipment. I treated with the Bionic 880 and did the IV infusions and ozone therapy he had in his office where they take out a good deal of blood, infuse it with the ozone, and then put it back into you. I admit, I was pretty skeptical about the treatment, but I was hopeful that it might help. At my last session with Dr. W in Germany, the lyme showed as non-existent on his testing equipment and he pronounced me lyme free.
But I did not feel so lyme free and when I returned to the states I still felt very sick. After Germany, however, I stopped taking all antibiotics (we stopped taking all medications and supplements a few weeks before going to Germany as Dr. W suggested). However, after returning, I gradually began to feel better and got that ``spark of life'' back that I thought I would never feel again. I felt more and more like my old self. And this time, I did not appear to get worse after stopping the antibiotics, so it seemed like the photon therapy did ``something.'' From that first visit to Germany in the fall of 2009, I stopped and stayed off all antibiotics for lyme.
In January, soon after returning from Germany, I learned that I was pregnant. However, about six weeks later I had a miscarriage. After that, I seemed to slide down in terms of lyme symptoms. I long thought that I would not be able to have a child because of the lyme ordeal. My symptoms then started to return and my family planned another trip to Germany for May. When we returned to Dr. W about half a year later, his energetic testing showed that lyme was active, but still nowhere near the level it was on the first visit, when it seemed to be off the charts on his energetic testing machine. This time, he used the Bionic 880 to treat with coinfection nosodes in order to address the erlichia, babesia, etc. Again, when we left, his energetic testing showed no lyme or coinfections.
This time, however, my family purchased a Bionic 880 machine to use at home if needed. We were fortunate to find one used in the states. When we returned home, I slowly felt my condition improve. When I felt like I was slipping or my symptoms were returning, I repeated the treatment on my Bionic 880 at home, using the lyme nosodes from Germany or those we got here from Deseret Biologicals. We would repeat the photon treatment when muscle testing and my symptoms indicated. First it was once a week, then every two weeks, then rarer and rarer. Since returning from the first visit to Germany in October of 2009 I have not returned to taking any antibiotics. Also, after the first visit to Germany, I started a full time legal job, which I handled just fine. Nine months later, I switched to a more demanding legal job and worked even longer big firm hours, often staying up until midnight to handle legal work. I never thought this would ever be possible given how sick I was previously.
After returning from the second trip to Germany in the spring of 2010, in the summer, I was diagnosed with thyroid disease. I am not sure if this was caused by the photon therapy, lyme, or both, but I felt that perhaps my thyroid issue was partly to blame for my prior miscarriage. I was not upset about the thyroid because it seemed like a cakewalk compared to the lyme, from which I seemed to be recovering. The thyroid issue was controlled with a pill a day and occasional monitoring by an endocrinologist.
In the beginning of this year, I again learned that I was pregnant and a few months ago I had a healthy baby girl. I did not take antibiotics during pregnancy because I was feeling okay and by then I had been off all antibiotics for two years. At birth, I had a cord blood sample sent to Igenex for lyme testing and it came back negative. Although I am very worried and plan to monitor her closely, my daughter seems to be doing fine. I am on maternity leave and look forward to going back to my job. I do not think about lyme every day, just once in awhile to remember what my family and I went through and to be thankful for what I have now. I am not sure if I am cured and I am not sure if I will ever feel just like I did before lyme, but I feel good. My symptoms are gone and I no longer think about lyme and it is no longer a part of my life. Of course, I am worried about lyme coming back, but I plan to use the photon machine if I feel any symptoms returning.
During my journey, I met others who have beaten this disease in different ways and using different therapies and who now lead normal lives. I feel very thankful to have had such great family support during my battle with lyme because they gave me the strength to go on and hoped in my place when I had no hope left inside of me. I know how much of a burden lyme can wreck on your life physically, emotionally, and financially. When I was very sick and not getting better in spite of very rigorous and costly treatment, I felt that I had nothing left to live for. All I have to say is that I learned how little qualification I have to work as a fortune teller because I was wrong in confidently predicting that I would be a casualty of this disease when, today, I sit here sharing my success story.
I wish all of you much health and a happy Thanksgiving holiday.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- (Same fabulous post as above, with added white space breaks for easier reading) ------------------------------
My Lyme Disease Success Story
posted by DesperationIn
23 November, 2011
I wanted to post my lyme disease success story. When I was incredibly sick a few years ago, I recall how much I sought out these stories and wished there were more of them.
Often, it was said on this board that people who get better do not return to post their success stories because they go back to living normal lives.
I just wanted to return and post mine here to let you know that I am living a normal life and that there is hope and life after lyme. When I was very sick, I never in a million years believed that I would be here telling a success story of recovery.
I wanted to post my story for Thanksgiving because I sure have a lot to be thankful for.
In January 2007, I was a second year law student at a school in Nashville, TN.
In January or February I began to feel my health tanking with a combination of strange symptoms.
I felt weak, the side of my head and later my body felt like they were in a constant vibration, I began losing a lot of weight (being too thin naturally)- the symptoms were getting progressively worse. I was very tired and had trouble thinking.
I felt something very serious was wrong with my health. I had no idea what a tick even was and had no risk factors for lyme. I also suspect I was bitten on the back of my head since symptoms started there, but I did not remember a bite and needless to say nobody saw a suspicious rash.
Then, I went through the typical lyme diagnosis story. I went to over 15 doctors including those in infectious disease, hematology, oncology, and even a psychiatrist. Like many others, I was ridiculed, called a hypochondriac, sent to psychiatrists.
One doctor did test me for lyme but an ELISA came back negative- but the fact that he ordered this test got me looking into lyme disease on my own. I scoured the internet for an illness that would fit my strange bouquet of symptoms, considering everything from cancer to exotic parasites.
I spent the summer in Chicago, trying to survive through working at my legal internship. I finished the term of my first internship but had to quit my second summer internship early due to the progressing mysterious illness.
By the end of the summer, I was beginning to feel some strange joint pains and everything else was getting worse. At the end of that terrible summer, my now husband proposed to me- I was very fortunate that he stayed with me despite the fact that I was getting sicker and sicker without anyone knowing why.
Eventually, I read about the lyme controversy and testing issues and convinced a doctor to agree to send blood to Igenex for lyme and coinfection testing.
When I saw the result, I finally realized I had lyme- not only lyme, but also all the coinfections including both forms of erlichia, babesia, rocky mountain spotted fever, and others I can't now recall (later energetic testing also found bartonella but this was not confirmed by the blood tests).
All in all, I went undiagnosed for over six months. I take sole credit for diagnosing myself based on my internet research and the help of folks on this website who shed light on the huge political and medical controversy surrounding this disease.
I was happy we knew what the illness was, but by then my life was literally falling apart. I did not go back to Nashville for the school year and transferred to a law school close to home in Cleveland, OH, hoping to do a semester near my family where I could have some help.
However, after going to school for three weeks, I realized I was too sick to continue. I took leave from law school for the year because I could not think or look at a book. I was so sick and tired that it was hard to walk around the block or do the basic tasks of daily life.
My whole life, I prided myself on my intellectual ability and academic success and I could not even read anymore. I felt that I lost my entire identity and fell into a deep depression in addition to being just physically ill.
In September, I went to a lyme doctor in PA for treatment and started antibiotics. I got a PICC line and spent over five months getting daily infusions of IV Rocephin. One line got infected and I had to get a second line.
To our dismay, the Rocephin did not really make me all that much better- it actually felt like I was getting worse. I continued doing antibiotic regimens, but they also were not doing wonders and I continued to feel very sick.
However, I believe the antibiotics did stop lyme's progress and enabled me to very slowly get on my feet and begin exercising that spring.
When I was sick, my family tried everything to get me well. It did not help that I am somewhat of a pessimist and did not handle the challenges presented by lyme very well. During that year, when I had to quit school, I was so sick both physically and emotionally that I contemplated suicide.
I felt that I was a burden on my entire family, that I could not recover or work again, and that I really had no future outside of being so sick all the time. Only the encouragement of my family, especially my mom's ``never give up attitude'' and care and kept me going in that very dark time.
We tried everything. In addition to antibiotics, we went exploring all kinds of alternative therapies. I went to an alternative doctor to get IV infusions based on energetic testing.
My mom and I learned to muscle test and I took a huge bagful of various supplements each day, which we regulated based on muscle testing. I did all kinds of herbs, acupuncture, homeopathy, and massage for lymph drainage.
At various points we purchased and used Dr. K's KMT 1000 machine the Beamray rife machine. We saw numerous alternative practitioners in addition to lyme doctors.
Ohio is sadly a black hole for this disease as there are no conventional doctors I knew of then (or now) who recognize and treat this disease. There also are not many alternative practitioners we found in Ohio who have much experience with lyme.
I suspect that most people suffering from chronic lyme in my state are misdiagnosed and treated for other diseases.
As summer rolled around, I still felt terrible and was not sure if I could ever return to Nashville to finish law school. However, my family and my fianc�e encouraged me to return to law school in Nashville.
But I was still incredibly ill and could not take care of myself. My mother's employer was very generous and allowed her to work from Nashville so that she could stay with me and help me. I returned to Nashville, this time living with my mother, and eventually finished my final year of school.
Nashville, I found, had better resources for lyme treatment. We found an alternative chiropractor who had some experience with lyme, rife thrapy, and who practiced flower essences.
We also found a wonderful conventional doctor who was in the process of learning about lyme disease treatment and who was even knowledgeable about the Patricia Kane protocol and to whom we went for IV glutathione infusions.
I heard there were other practitioners who did hyperbaric oxygen therapy for lyme there too, but we never tried that. This was much more medical support than we had in Ohio.
My ``lyme'' doctor at that time was in Connecticut and we had phone consultations with him. He was a whiz about antibiotics but did not do or know much about any alternative therapies.
That year, I continued rigorous antibiotic treatment, trying different combinations. I took numerous antibiotics and meds during this ordeal, including bicillin injections, and the mepron yellow paint which literally broke the bank since I had no prescription coverage.
In May, I graduated law school and got married. A few months later I took the bar exam. Although I could think again enough to finish law school and study for and pass the bar, I still felt very sick.
The antibiotics clearly helped but fell far short of any kind of cure. Also, when I tried to take breaks from antibiotics during that second year of treatment, I had to start them again very quickly because I would just slip and get worse.
I lost hope that I would ever reach a point where I would go a day feeling energetic and normal and not having to think about this dreaded disease and I never thought I would be able to stop antibiotics for lyme.
After I took the bar, my mother suggested a radical step of going to Germany for treatment with the Bionic 880 photon therapy machine. She had read about the experiences of other lyme sufferers on this forum and on the internet and thought that it could help.
In October my mom, dad amd I traveled to Germany to do the Bionic 880 treatment with Dr. W. In Germany, Dr. W's energetic testing showed lyme at the highest point on his testing machine- the needle of the machine seemed to strain the lyme detecting equipment.
I treated with the Bionic 880 and did the IV infusions and ozone therapy he had in his office where they take out a good deal of blood, infuse it with the ozone, and then put it back into you.
I admit, I was pretty skeptical about the treatment, but I was hopeful that it might help. At my last session with Dr. W in Germany, the lyme showed as non-existent on his testing equipment and he pronounced me lyme free.
But I did not feel so lyme free and when I returned to the states I still felt very sick. After Germany, however, I stopped taking all antibiotics (we stopped taking all medications and supplements a few weeks before going to Germany as Dr. W suggested).
However, after returning, I gradually began to feel better and got that ``spark of life'' back that I thought I would never feel again. I felt more and more like my old self. And this time, I did not appear to get worse after stopping the antibiotics, so it seemed like the photon therapy did ``something.''
From that first visit to Germany in the fall of 2009, I stopped and stayed off all antibiotics for lyme.
In January, soon after returning from Germany, I learned that I was pregnant. However, about six weeks later I had a miscarriage. After that, I seemed to slide down in terms of lyme symptoms.
I long thought that I would not be able to have a child because of the lyme ordeal. My symptoms then started to return and my family planned another trip to Germany for May.
When we returned to Dr. W about half a year later, his energetic testing showed that lyme was active, but still nowhere near the level it was on the first visit, when it seemed to be off the charts on his energetic testing machine.
This time, he used the Bionic 880 to treat with coinfection nosodes in order to address the erlichia, babesia, etc. Again, when we left, his energetic testing showed no lyme or coinfections.
This time, however, my family purchased a Bionic 880 machine to use at home if needed. We were fortunate to find one used in the states. When we returned home, I slowly felt my condition improve.
When I felt like I was slipping or my symptoms were returning, I repeated the treatment on my Bionic 880 at home, using the lyme nosodes from Germany or those we got here from Deseret Biologicals.
We would repeat the photon treatment when muscle testing and my symptoms indicated.
First it was once a week, then every two weeks, then rarer and rarer. Since returning from the first visit to Germany in October of 2009 I have not returned to taking any antibiotics.
Also, after the first visit to Germany, I started a full time legal job, which I handled just fine. Nine months later, I switched to a more demanding legal job and worked even longer big firm hours, often staying up until midnight to handle legal work.
I never thought this would ever be possible given how sick I was previously.
After returning from the second trip to Germany in the spring of 2010, in the summer, I was diagnosed with thyroid disease. I am not sure if this was caused by the photon therapy, lyme, or both, but I felt that perhaps my thyroid issue was partly to blame for my prior miscarriage.
I was not upset about the thyroid because it seemed like a cakewalk compared to the lyme, from which I seemed to be recovering. The thyroid issue was controlled with a pill a day and occasional monitoring by an endocrinologist.
In the beginning of this year, I again learned that I was pregnant and a few months ago I had a healthy baby girl.
I did not take antibiotics during pregnancy because I was feeling okay and by then I had been off all antibiotics for two years. At birth, I had a cord blood sample sent to Igenex for lyme testing and it came back negative.
Although I am very worried and plan to monitor her closely, my daughter seems to be doing fine. I am on maternity leave and look forward to going back to my job. I do not think about lyme every day, just once in awhile to remember what my family and I went through and to be thankful for what I have now.
I am not sure if I am cured and I am not sure if I will ever feel just like I did before lyme, but I feel good. My symptoms are gone and I no longer think about lyme and it is no longer a part of my life. Of course, I am worried about lyme coming back, but I plan to use the photon machine if I feel any symptoms returning.
During my journey, I met others who have beaten this disease in different ways and using different therapies and who now lead normal lives.
I feel very thankful to have had such great family support during my battle with lyme because they gave me the strength to go on and hoped in my place when I had no hope left inside of me. I know how much of a burden lyme can wreck on your life physically, emotionally, and financially.
When I was very sick and not getting better in spite of very rigorous and costly treatment, I felt that I had nothing left to live for.
All I have to say is that I learned how little qualification I have to work as a fortune teller because I was wrong in confidently predicting that I would be a casualty of this disease when, today, I sit here sharing my success story.
I wish all of you much health and a happy Thanksgiving holiday.
(DesperationIn - Cleveland, OH)
----- Replies and discussion to this post are over at this original thread:
posted
I haven't been around for a long long time. I am doing much better. After extensive reading/research I went the "Oil of Oregano" way. Started slow and built up to 4 drops daily with lots of water.
Haven't used the cane lately. Once in awhile I have little minor relapses, however, nothing like before. Gained back some weight, I was gettin skinny.
Use of cane is gone at this time. Back to walking, but only one mile walks, not 2-5 at a time.
Back in summer, Judge granted me disability based on Lyme disease and depression. This process took over two years to finalize. I felt blessed that he recognized how ill I was and took compassion.
I remember last summer (2010) how ill I was. Sometimes I get the little sypmtoms here and there, but I can function with energy and my life is not what it was!!!!
Blessings! Horsehelper
-------------------- I'm glad to know I'm not alone Some peace of mind I somehow find Through folks like you with Lyme! Posts: 240 | From An infected state | Registered: Jan 2011
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posted
Keebler, we live in the same location. Horsehelper
-------------------- I'm glad to know I'm not alone Some peace of mind I somehow find Through folks like you with Lyme! Posts: 240 | From An infected state | Registered: Jan 2011
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posted
oooooops, sorry! It's Desperation, not Keebler, that lives in the same area as me.
Horsehelper
-------------------- I'm glad to know I'm not alone Some peace of mind I somehow find Through folks like you with Lyme! Posts: 240 | From An infected state | Registered: Jan 2011
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posted
I consider myself a success story. I don't know when I got infected, but I'd been ill for almost 5 years when I began treatment. My primary symptoms were crushing fatigue, pain, and brain fog. I couldn't exercise at all---just going to the market was exhausting.
I was on antibiotic therapy for almost six months and now I am treating with herbals (japanese knotwood, teasel, a general tonic, and burbur). I am able to exercise and the crushing fatigue is gone! I actually jogged a little bit yesterday, did some strength work in the gym and didn't feel like the roof fell in on me. I felt good.
Exercise tolerance is a BIG clue that I am better.
I am pretty scrupulous about an anti-inflammatory diet.
And I'm very grateful to the doctor who treated me.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
Hi all. I wanted to update my story in the hopes that some out there can take solace in it. In the early Fall of 2007 I awoke to a seriously swollen left knee. I attributed it to rnovation work I was doing at the time, strapped it up and went back to work. Over the next several days other joints became painful (all on the left side), brain fog, fatigue, fever, nightsweats, cough, the whole gamut. Trained originally as a medical technologist I recognized what was going on and connected it to a bite/rash my wife had noticed one morning several weeks earlier on my backside --- no 'bulls-eye' but a 15-16cm diffuse rash with a clear bite.
I saw my primary doc and he drew blood for tests and turfed me to a rheumatologist for my knee. My knee was aspirated and I was given a shot of cortisone. I was also told I did NOT have Lyme (the tests came back negative) but had some kind of 'idiopathic arthritis'. Within a couple days my symptoms disappeared. Just in time for the holidays.
Several weeks later, in early January, my symptoms came roaring back with a vengeance. I went back to my primary and rheumatologist. More labs, x-rays, CT scan and was put on prednisone which again relieved all my symptoms. I was sent to an infectious disese doc who told me that being on prednisone I'd be sicker, no better, if I had Lyme. I was kept on prednisone for a year.
I was then weaned-off the prednisone. Within 6mos symptoms came back. Put back on the prednisone, more x-rays, another CT scan. This pattern continued (on and off prednisone) for 4yrs.
I dumped my primary doc and got a new one. Last November he decided to test me for Lyme one more time. The results were off the chart. Suddenly everyone's hair was on fire. I was sent to a neurologist, had an MRI and was going to be referred to the same infectious disease doc that had blown it 4yrs earlier. This is when I decided to take charge of matters.
I contacted the Chief of Infectious Disease at the nearby medical school/hospital and got an appointment. They took matters seriously and I was very happy with the time and attention afforded me. They re-tested me, arranged for a spinal tap and within a few weeks had me on IV ceftriaxone.
Within a few days ALL my symptoms resolved. 2 weeks in I had a flare-up but that quickly subsided. No Herxing. Dealing with the PICC line (mainly showering) was a PIA but there was no question it was worth it.
After 30days of IV ceftriaxone I can happily say I am 100%. As a matter of fact, until recently I had forgotten what feeling good was --- it's been so long. My doctor asked me to join her at the medical school and present my case to 2nd year med students and other doctors which I did this week. My doctor is committed to wining this battle and if --- God forbid --- symptoms re-emerge, she already has a plan.
There is hope. Maybe this protocol won't work for everyone. Not everyone can tolerate the IV or the IV antibiotics. But I'm evidence that even an advanced, poorly mis-managed case can be treated. It may not always be necessary to seek-out unconventional treatments.
Posts: 12 | From central MA | Registered: Nov 2011
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posted
What a great idea!! I too used this site as my support for several years. I got sick 2004, diagnosed 2006, treated with a multitude of oral and long term IV antibiotics till 2008. At that time I became very septic with MRSA and (wierd one)Nocardia. Hospitalized for 2 weeks, home on oral antibiotics and tube feedings. Finally, 2009 started true recovery. Had great docs, extremely supportive family and of course LymeNet.I have had relapse and now on 3 antibiotic cocktail. The story is long and has been experienced by many on this site. I am again recovering. Never as sick as originally. My advice is keep trying, keep smiling!!! It can get better. Grateful for every good day
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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I have not been on lymenet for a while. (I needed to live a little more like I was not sick.)
I am here now to encourage others because I am so much better.
My story started in Nov 2007 when I experienced sudden excrutiating pain followed by paralysis waist down and diminished bowel and bladder control. I was hospitalized through the ER. MRI's, blood tests, spinal tap and three days of IV steroids. The no no. Diagnosis was mild inflammation of unknown cause: transverse myelitis...which basically means neuro compromise from waist down. Prognosis: it will fade away in 3 months.
Right. PT for 6 weeks and basically waited. I stopped seeing neurologist for him to charge big bucks to tap my knee for reflexes and watch me stagger.
Regular MD had some complementary approaches but it really did little and she said I was at or near "medical end". Nothing more medicine can do.
I did not know where or what but I did not buy it. Fast forward two years and a friend had been seeing a practitioner of electrodermal therapy. Generous friends made it possible for me to do that.
Short version: she found the lyme. At first she was not too concerned until a lyme patient in a wheelchair with convulsions came in see her as a last resort. (that gal is a now a near miracle recovery)
That caused her to take it seriously and get on a faster learning curve with tickborne illness. Her detox and buildup strategies helped a lot. but not everything.
Roll forward to spring 2010. I was falling into a deep dark hole of despondency and anxiety. My professional background told me it was pretty severe. Since it did not show up on the EDt she said iwas fine. I was not.
And very much like PTSD. I had catastrophic obsessive thinking 24/7 and wanted to die.
I was not suicidal though. I came somewhat out of that pit due to prayer intervention in early summer. In retrospect i believe it was mneuro lyme effects and undiagnosed bartonella but will never know for sure. I had bart symptoms.
Then that summer I became a double winner. Another tickbite and this time four infections: lyme, erlichia, bartonella, babesia.
On top of the chronic infection, I was so very sick. I did have the EM rash and went to the ER to have it medically verified. MD gave me the usual shortcourse doxy.
I found lymenet within 24 hours and contacted a support group for lyme literate help. I was in a lyme literate licensed naturopath's office within 48 hours.
I had almost run out of money so had not seen been to the electro dermal therapy screenings for a few months but had maintained the protocol for the most part.
I had enough for the appt, the abx and the cd-57.
So ensued more symptoms, fever, chills, the ball and chain fatigue, more neuro symptoms and effect on mood and thinking, word retrieval problems, short term memory issues, skin rashes, herpes activated, EBV , the parasthesis was worse, stumbled and staggered, but at least I walked when i did not have the crushing fatigue.
Antibiotic regimen pretty much approximating ILADS guidlines. Herbal tinctures rotated hitting the microbes and supporting body, homeopathics, lots and lots of supplements, vitamins, minerals, things to prevent yeast and so much more. All of it had impact.
I hung in and endured and endured some more and then endured some more but gradually I saw changes for the better. Adrenal support eliminated that ball and chain crusher...not all the fatigue but that part of it.
I was heartened. I managed to keep yeast from taking over with her recommendations. and reading here. I used way more probiotic support than she recommended because of what I read here.
I read here a lot. Helped some others here and there I hope. Half faked it to people in life around me so I didn't have to explain the whole ordeal but also as happens I did not "look" as sick as I was.
that was hard. i wanted to be supported and validated for how sick this made me but at the same time I didn't want pity and hovering.
In retrospect i think it would have been better if at least a few people knew how terribly ill I was. I live alone.
I fought guilt for not living up to what I though my professional responsibilities were and endured some more.
Gradually things improved. Fast forward to being off antibiotics in June 2011. still on everything else.
Had a visit to EDT and no disease processes were detected as active. This was a huge deal. Through the summer of 2011 I continued to improve. I joined a family vacation in July and improvement was even more marked.
I have maintained that wellbeing and gain ever since. My LLND warned that I was in a tender place so don't push it.
I continue to maintain and feel good. I am trusting this enough as I approach the one year off abx to come and share this.
I am almost in a dream even while I am reclaiming that I have a life to live.
It is not the same. I am not the same. I never will "go back to how it was". too much has happened. I am still not sure what my dreams are for the future but I can make plans. That is a big deal. I can make plans!
For next week or next month or even tomorrow and have a reasonable expectation that I can do them.
I do still have parasthesis in my lower legs and am slowly rebuilding stamina. My pace is altered but that is as much personal choice now. the way I want to live now.
I still notice gradual improvement for example in word retrieval blocks. Even in the last few weeks it is almost not there.
I continue on my organic low carb, moderate fat and protein nutrition. I continue on certain herbal protocols and mineral and vitamin supplements. enzymes, probiotics and so forth.
So effort is still required to maintain. Sleep habits is tough but I will eventually get there.
I sometimes have anxiety but it is easily managed now with homeopathics PRN and getting a grip on myself.
all of this is to say that I have a life that is not dominated by being sick and symptomatic and treatment and office visits and all about making it through another day.
I don't know what normal is exactly anymore but I am way better than I was and have gained some better health habits on the way besides.
My outlook spiritually and emotionally has changed. It is a different life season.
Life is good. My kitty died and my stepfather died during the worst of the Lyme ordeal.
I think I have some deferred grieving here and there. but life is good.
Life is good. I am grateful.
May you have hope.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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Hi Lyme Net...have not posted in a long time... so glade to post here...
My hubby who has been in treatment now for 5 and a half yrs...is so much better..we just got home from Lyme DR and he can now go every 3mts...
his pain was always in his head and eyes...he has be in a dark room all this time..
the past 6 months things have been so good...he eats better...talks...enjoys his grand kids now...he was so week ...we now are starting to take walks...he is still weak...but wants to do things...
i am so glad i found Lyme Net...it has and will always be good to come here and check thing out.
thank everyone here...you help so many people and i don't know what i would have done with out you...
i am so happy to see my Hubby talking and just taking part in life again....i really didn't think it would get better...again thanks and i will keep all of you in my prayers...
Madge
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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