posted
I've been off ABX for over a year now and feel really good except for the occasional muscle pain in my legs. When positively diagnosed via IgeneX, I had muscle twitches, cognitive impairment, etc. Rifampin was the game changer for me. Everyone is different, so their recovery will be different. Keep fighting the good fight!
Posts: 11 | From Orange County, CA | Registered: Jan 2009
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posted
I should add that I think exercise (any form) was huge for me as I forced myself to walk every day. I also supplement with magnesium and vitamin D3. You will get better!
Posts: 11 | From Orange County, CA | Registered: Jan 2009
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posted
anyone else? I know this is an old thread but I think all of us like to hear new positive stories, so that is why I have been bumping it up every couple months! Posts: 200 | From Boston | Registered: Sep 2010
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posted
I also want to say "thanks" to those that are feeling well and still visit this site to help those of us in need. It truly means a lot!!
I have been treating since April 2010 with oral abx and, knock wood, am feeling better than I have since soon after getting the bite.
Started pulsing tindamax yesterday and am handling it pretty well so far. There was a time one pulse would do me in for awhile.
I don't know what percent better I am but: my muscles and joints rarely bother me, my heart palps and gone, my floaters (forgot about them!), my urinary tract has been great (used to get group B strep all the time in urine), shortness of breath is gone (danced 2 hours straight last week), and much more energy and stamina (fed 30+ people a sit down turkey dinner), no twitching, no dizziness, and my 8+ circles are finally gone, I can run up the steps again, etc., MUCH BETTER....
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Don't believe that it is not possible. I'm better now than before lyme!!!
Before lyme I still had stomach aches (from chronic gastritis), suffered from digestion problems, lived in pain about 80% of the time, suffererd for more than a decade of skin candida for many months a year, that was treatment resistant.
My gastritis is gone for years, since a couple of months on heavy metal detox DUE to lyme treatment.
I have digestive problems if I overeat or eat bad for a couple of days, if not stomach pain is past!
I still have my fights with candida sometimes, but it is NOTHING compared to before lyme. It is about 10% of what it was. I also attribute that to detox, specially heavy metal detox. And to Sanum treatment.
So I'm better now than BEFORE LYME!
If you don't believe you can get to 100%, it is because you didn't get there yet.
My daughter is also there, she has been infected and re-inefected since the age of 1. Now she will be soon 8!!!
I suppose for people with PERMANENT damage, it may not be possible.
But for us, it was possible. Very possible.
I almost ran a half marathon 2 weekends ago. Too lazy to go, foggy weather, but I can now jog for 90 minutes non stop. Even before lyme, I never did that!!
Next year, I will run a half marathon (I do things slow...). And possibly the other, I will try a marathon.
However, I can't believe anyone that was so bad like I was, can get better without energetic tests. This disease is too complex to be treated just by chance, and luck. That is how I see in my case.
That is why you WILL keep reading that some people will never believe others can get to 100%. I swear that without energetic tests, I am pretty sure I was going to be sick forever, possibly next to 80% or so, but not to 100%.
Kids are different though. Many can get to 100% even without these energetic tests, as their immune system is much better than adults. At least in my feeling. Not all kids, but many.
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
For those of you who say you are cured, in remission, or close, may I ask what your CD57 was when you reached that point? I have only been on tx 8 months with oral ABX, one at a time, and with the exception of Flagyl, at not particularly high doses. However, compared to where I was when I started, I am feeling so much better. I know I have a way to go and perhaps with this regimen I may not even get there, but so far it seems to be working, and so far (fingers crossed!) without candida. When I can run again and handle a stressful situation without feeling like I relapsed, then I know I am cured.
Posts: 478 | From Third Coast | Registered: Feb 2011
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My LLMD never took my CD57.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Brussels....????Energetic tests? ABX's with supps,vitamins,herbs. Did you have a few doctors or one that new it all?????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Thank you for sharing your stories... If gives hope to those still in the beginning stages of treatment.
My husband probably had Lyme for more than 10 years before he was diagnosed this summer. Treatment is making him feel worse than before. He does say he is feeling something is changing for the better, though he can't quite explain it.
He's been on supplements for many years to help build his immune system. So we are hoping with getting abx in there to actually go after the 'bugs', it won't take so long to be well again.
It will be so good to have him able to drive and work and do all those ordinary father and husband things!
Thanks again for sharing! We need all the hope we can get!!
Posts: 2608 | From USA | Registered: Aug 2011
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posted
For two years I have been on heavy-duty antibiotics. My doctor follows Dr. H's protocol and doesn't believe in pulsing or taking abx away, just adding.
I'm going to whisper this.....I am close to remission, and have been wavering at 90% or more for months. I am still on abx, but am beginning to taper off slowly.
My llmd added a new drug a few months ago, and it set me back. That told me that I had enough, and my immune system was ready to take on the leftovers.
My last CD57 was 227, and I can feel my immune system working. I think LDN is a great immune booster.
I'm working on detoxing, and getting rid of the leftover cellular debris with a lot of proteolytic and systemic enzymes like Virastop.
I've started mild exercise, and feel it has made a difference, and should have started sooner.
I also use energetic testing, and have learned to follow my instincts and intuition.
Posts: 964 | From san diego | Registered: Oct 2009
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I would have to say I'm in a kind of remission. I have been off antibiotics for 9 months now and do a maintenance with herbs. Detox is a huge factor as well as exercise.
I feel that even limited exercise is so important.
I treated lyme disease for over 6 years and babesia for over 3.
I would say that the majority of the time I am at 90 to 100 percent of normal.
I am so grateful that I am feeling so well. I remember when I could barely walk at all. There were times when I thought I may not make it.
Please keep the faith and treat all of the coinfections. Detox and exercise.
If I can get back to this state I truely believe that anyone can.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'd say maybe 25-50 people on this board are at this point (out of thousands). Still, it provides a small glimmer of hope. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
"I'd say maybe 25-50 people on this board are at this point (out of thousands).
Wow...what a negative thing to say on a thread that was created with the intent to make people feel a little better. Awesome.
Posts: 200 | From Boston | Registered: Sep 2010
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posted
"I'd say maybe 25-50 people on this board are at this point (out of thousands).
Wow...what a negative thing to say on a thread that was created with the intent to make people feel a little better. Awesome.
Posts: 200 | From Boston | Registered: Sep 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son is in remission. 100% better.
He just got a cold last week (I was worried) and it was gone in 3 days.
The comparison to a year ago is remarkable. His immune system was shot. I was afraid to have people over for Christmas because his WBC was 0.8 and his ANC was below 800.
Heavy metals (KPU) and mold/mycotoxins were a big factor in his recovery.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Thanks for the responses guys! So happy you are doing so much better! Anyone else...?
Posts: 200 | From Boston | Registered: Sep 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
CD57, nope, my normal doctor didn't know about that when I asked him while I was sick(here in Switzerland).
I don't see my lyme doc anymore after he told my I'm healthy, 'cured' from lyme either. Nor my naturopath (we only sometimes meet in courses we do together!!!). It's been more than 2 years, and I don't want to know my CD57 anymore...
------ Nonna, yes, I had the luck to know 2 practioners following dr. K. who use a lot of treatments:
microcurrent (KMT), homeopathics, laser detox therapy, herbs (Buhner, some of Nutramedix, dr. K's), abx, supplements, some massages, guided my dental treatment, did scar treatment, ozone, never stop heavy metal chelation or cleaning (and lately, added the KPU), energetic tests THE WHOLE TIME, mental field therapy , psychokinesiology, even family systemic therapy!!!
They didn't use though infrared treatment, which I used at home by myself, while waiting for an appointment with dr. W in Pforzheim.
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
My wife who got sick with Lyme in 2007 treated with abx and herbs on and off for a couple of years. I would say she's in remission most of the time but once every few months she gets a fatigue episode that can last for a few days. So, though not back to her pre-Lyme condition, it is something we can live with and it is a far cry from how she was prior/during treatment. And I think this will be the case for most - you will get to a stage where your worst issues are gone forever, but a few mild things will linger.
Posts: 655 | From USA | Registered: Sep 2007
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posted
Thank you all for caring enough to share your stories... I think everyone has felt that dark nigh of the soul with this disease. I cannot thank you enough for sharing your stories, your positivity and all in all... will to get better. I do think that is key and after reading this today... exercise is going to be mandatory for me. When you are hurting all over... it is hard. No more excuses! Thank you all again... You are a LIGHT... May God Bless each and every one of you... and continued GOOD health... Posts: 859 | From Southeast | Registered: Mar 2011
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posted
anyone else since it has been a couple months since I last posted? always looking for positive stories ...
Posts: 200 | From Boston | Registered: Sep 2010
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posted
I was pretty ill for 5 years. Arthritis so bad I had two spine surgeries to relieve pressure on my spinal cord; fatigue, sleep disturbance, irritability, anxiety and brain fog so bad I had to stop working.
I had six months of antibiotics (minocycline and rifampin) to treat Lyme and Bartonella. I stopped abx a few weeks ago and currently only take japanese knotweed and cod liver oil.
I sleep restfully through the night, I am able to exercise regularly, the crushing fatigue is gone and I still have gas in the tank at the end of the day. I still have some arthritis symptoms but these seem to be resolving as well.
I credit my LLMD for knowing which abx to use; my scrupulous attention to a nutrient dense diet; use of herbals and faith and prayer.
May we all blessed with a full return to health.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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lymeboy
Unregistered
posted
A lot of people that reach remission do not come back here. They get to a livable state and return to their normal lives. I am indebted to the healthy folks here that give their time to helping us.
I am not in remission but really getting better. I like to think I will reach it this year, but who knows?
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posted
My husband is and he was seriously ill with a prognosis at one point of a few months left to live.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
My daughter was seriously ill, treated for three years and has been in remission for 1 1/2 years.
-------------------- "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
I am sort of in remission, and I definitely don't come here too often when I'm feeling good.
I actually logged on for the first time in a while b/c I'm having a flare up. But generally I can live a normal life.
4Seasons, I like your quote, especially as it pertains to my username!
Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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posted
Thank you all for sharing...I've loved reading all these success stories:)
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I 've been in remission for almost four years now. Prior to that I was in remission for 10+ years. I know it might come back if I become unhealthy for some other reason. The last episode I think was triggered by an accident I had at work. I spent four days in the hospital with broken ribs and after that (pain killers, shock etc.) the Lyme came back.
So I know I'm always walking the tight rope. Great thread. Know that it is possible to be %100. I did it. So can you. I 'm on Lyme net because this is a $^#%@ WAR!
Posts: 65 | From oregon | Registered: Jun 2011
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Me. For now. 5+ years and counting. Thank GOD. I have SOME issues when 1st waking, but hard to tell if it's leftover neuro-Lyme, or age-related or auto-immune.
What do I concentrate on now? A healthy Diet. Exercise. Some supplements. Foods that are mildly antibiotic, like garlic. And, especially, good Sleep.
All I can do! Hopefully I can avoid more "long-term abx"... until I'm elderly. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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quote:Originally posted by hammond: I 've been in remission for almost four years now. Prior to that I was in remission for 10+ years. I know it might come back if I become unhealthy for some other reason. The last episode I think was triggered by an accident I had at work. I spent four days in the hospital with broken ribs and after that (pain killers, shock etc.) the Lyme came back.
I was diagnosed a year after being infected, and treated with doxy about 23 years ago. So I've lived longer post-treatment than I had pre-treatment. This is the first time I've actually been convinced the fatigue, aches, and stomach upsets may be related to Lyme.
Most of the last 23 years have been pretty ok. I would say I bounced around between 85% and 95%. However, compared to others in my age group, I've always had less tolerance for undersleeping, extremely low tolerance for caffeine, and periods of insomnia.
Hoping to find a doctor here soon so I can figure out why I suddenly feel so lousy. I can tell you this, though... it sure does feel like Lyme.
Posts: 3 | From MN | Registered: Jul 2012
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I've been in remission for 18 months, though I've had a couple of mini flare ups that I'm not sure came from bb or just plain ordinary sickness. Since I herxed on the last one, I can assume it was a mini flare, however, I do about all I did before. Just a bit stiff at times.
-------------------- 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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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am using stromectol so not in remission but I feel close to 100%. I hope I can maintain this through the winter because that is when I usually relapse.
What helped me get here was low fat vegan diet and stromectol for protomyxzoa, LDN, and the methyl cycle mutation supplements (CBS also requires a vegan diet). Big difference in just a few months. I don't have any symptoms although I would like to increase my stamina.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I am very, very close, I think. Rifampin has been key for me. 98% most days, with 100% the others. I forget I am a "sick person," if that says anything.
Posts: 447 | From Vermont | Registered: Jan 2011
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posted
I've been in remission for four years now, back to 100% after seven years of abx. All five of my kids are in remission, too. So I guess that's 6 of the 25-50 who have recovered accounted for. ;-)
Seriously, I'm sure the number of people who have recovered is much higher than 25-50, but many just don't come back once they've regained their health.
Posts: 962 | From Charleston | Registered: Jan 2002
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posted
Can someone tell me what Bionic 800 is? C.P. Thanks for sharing all the positive stories. I think that everyone who get well should leave us with their full story, including treatments that helped them recover. There should be a separate topic button devoted to all the stories. These stories provide much neeeded reassurance and encouragement to those of us still in the dark trenches. C.P.
Posts: 106 | From Colorado | Registered: Jul 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I'm with you C.P... These positive accounts help so much..
Anybody else?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
This is so good to read today. Hubby is having such a bad couple of days. His breathing is bad, muscle weakness is bad,not sure where we're headed. So good to read maybe there is hope still. Hes been with LLMD since April, a quack LLMD for approx 8 months before that. So maybe we're hoping for too much too soon. Just has scary ALS symptoms. Thanks for all the good posts.
Posts: 305 | From United States | Registered: Nov 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The same five or ten that always post. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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