posted
I've been infected for one year now. I started treatment 5 months after my bite. I started with 200mg of doxycycline which didn't work, then 3.5 months of a rocephin IV which helped a lot.
Next came Rifampin and doxycyline combo for Bartonella; this also helped and my health improved more. The doxycyline agravated my vision problems so now I'm on Rifampin, Biaxin and Plaquenil.
It just seems to go on and on. If I could just stop my vision from vibrating, I think I could live a normal life.
Have any of you been cured? Do you know of anyone who is in remission or cured? I see Dr. F in Arizona and he told me he has never cured anyone; we will live with the disease for ever.
Is their anyone out their who beat this? And if so, what drugs did you take?
GOD Bless all of you...
Posts: 54 | From New Mexico | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, that's a gloomy outlook that Dr. F would say such a thing with his brilliant reputation. Not what I wanted to hear.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Living with the bacteria and living with the disease are two different things; I know several who are in remission, one of whom has been for 12 years now.
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posted
My friend's sister was put into remission by Burrascano. I found this out unfortunately after my lyme had become chronic after dealing with ignorant infectious disease doctors.
She had Lyme for years and didn't know it and was pretty bad off. It took her two years of treatment.
Posts: 743 | From New York | Registered: Apr 2009
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posted
I think there is a difference between cured and remission. If I didn't think there was any hope of an improved life I certainly would not go through the hell that this treatment has been.
My LLD says all but two of her current patients are in remission and that they maintain that remission by being careful and taking the right supplements and watching for symptoms that appear which they can jump on right away and keep under control.
I think if a doctor told me none of his patients have gone into remission or there was no hope for cure, I would find another doctor. If there is no hope then why try?
Posts: 199 | From utah | Registered: Jan 2009
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posted
Cure is not a word most Lyme patients nor their drs use. IF you've had it chronically, it's gonna be there forever, IMHO.
I'm in remission and enjoying life again. Been off abx for 4 1/2 yrs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Not many people stick around and post here once they have achived remission. Understandably, but sadly for us, they want to start living once they feel better, and it has to be very difficult to stay and think about Lyme Disease all the time once well again.
I really think we need to have a copy of the "Success Sotries" thread stickied on top of the Medical Questions forum page. This is where more people spend their time, and where people are looking for treatments that worked.
Does anyone else agree with me? Who can do this, or ask if it can be done?
Anyway, here is the link to that thread - please note that within the thread is a link to archived Success threads too, and alsoi copied and pasted success stories.
There are many MANY successes, and please also understand that many don't come back to share their successes, and if they do, they don't know to post them in the Success Stories thread, and just make their own threads, which makes it very difficult to find them.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Cured means complete erradication of the spirochete, which I think we all realize is impossible. I was really bummed last fall to learn that, but I've accepted it now and remission is looking really good to me now. I believe I have gone into remission before with alternative methods, so I know it can be done, it just takes ALOT of work and dedication.
posted
My sister in law was terribly sick and has now been in remission for 2.5 years.
I also spoke with a man who was sick in 1991 and it took 3.5 years of antibiotics, but he's been in remission for a long, long time.
I'm way, way better. It just takes a lot of time and none of us are very patient, including me!
-------------------- But the greatest of these is LOVE Posts: 19 | From New England | Registered: Mar 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I've been in remission twice before my last bout, and that was without knowing what I had or abx. This third bout laid me low. It's been almost 3 years, with the last 18 mos. on abx and with an LLMD.I'm heading towards remission. I've been working fulltime since August.
Although it may not be a 100% remission, and I may not be running marathons anytime soon, I can enjoy a normal life.
And you do forget about it once you feel well again. I don't visit this board as much as I used to.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I think it has to be looked at like the viruses we all live with every day, like HSV, etc. they are not out there bothering us all the time.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Thanks to all of you who responded. I'm glad to learn that some of you are in remission or getting better.
Are there any others out there who are in remission?
Posts: 54 | From New Mexico | Registered: Nov 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Joe- To answer your questions direct: >Have any of you been cured? No one is "cured" of Late-stage disseminated Lyme. No cure... yet.
>Do you know of anyone who is in remission or cured? I know of three "in remission", including myself. We all have minor residual issues that swell & ebb, but nothing that keeps us from getting back to our regular lives. Most times I don't even notice any problems now.
>I see Dr. F in Arizona and he told me he has never cured anyone; we will live with the disease forever. An odd statement for an experienced LLMD to make, though it may've been take out of context. I'd bet he has "cured" many a patient that he was Lucky enough to start treating whilst the disease was in the early stages... usually within a few weeks of the bite.
>Is their anyone out their who beat this? I'd hazard to guess Most who've visited this Website over the years, as a result of the disease, have now "beat" it. We just make sure to avoid ticks, & not abuse/over-use our body, to hopefully avoid relapse. But we are all aware of the possibility (most of us, anyway).
>And if so, what drugs did you take? We could all come up w/ a list. But honestly, Joe, what works/ will work Best for YOU is likely not what worked best for me... or "Jane" or "Kent" or "Rocky". (3 of my peers who dealt w/ late BB)
This is why you need guidance of an LLMD to try different protocols- in some intelligent order- based on Your situation/ body/ Lyme sub-species. Each protocol should/ needs to last atLeast 2 to 4 months for best results, & to guage efficacy.
8 months after MY bite, I was 4 months into treatment & having the SAME thoughts. Same depression. Same questions. It sucks. It truely does. It really Is a tough bug to beat. But most Everyone Does, fortunately.
Some definitely take longer to "recover". The luck ones are back sleeping & eating & working 'normally' after 3 or 4 months. Then there's the rest of us ;/~ ...
Hang in there! And best of Luck to you. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Joe,
I am still in treatment but living a normal life.
My lyme progressed into Rheumatoid Arthritis and it hit me hard and fast. All my joints were severely affected and I thought I was going to have to get a wheelchair. That was 2006 and I was extremely swollen and sick.
Today I am back to work, riding horses and enjoying life. It actually only took 3 mths of treatment with a doctor who focused on detox and supplementation both IV and oral to get me functioning enough to return to work. I was so sick with toxicity from metals and bugs. I was 3 times the highest acceptable limit for lead and mercury.
While it only took 3 mths to get back to work, the first year of treatment was 2 steps forward, 1 step back and I suffered some permanent joint damage. I felt very weak and described it as teetering on the edge of a cup of soup. I felt I could either fall forward into health or backward back into the sick soup.
I no longer feel this way. Today I feel strong and painfree most of the time. Even the damaged joints are strong and functioning today (just limited range of motion).
I test positive for lyme, babesia duncani, mycoplasma pneumoniae, chlamydia pneumoniae, h. pylori, parvovirus, epstein barr virus, HHV-6.
I was a very, very sick puppy and honestly felt at the time that I could die. That much inflammation in your body can absolutely kill you.
Just this week, I had to hook up my 22' horse trailer and haul one of my horses to a barn to treat an injury. I was alone. My horse trailer is a gooseneck (5th wheel). Hooking it up required me to climb in and out of the truck bed several times as well as cranking the frontend high enough to clear the truckbed. This is not for wimps and I am 53 yrs old with rheumatoid arthritis. Praise God I am able to do such things.
So, yes. You can get "well". It is not as simple as taking a few drugs though. You really have to become committed to living a healthy lifestyle. Drugs alone cannot heal all the damage done to your body.
That is not saying don't take drugs. I have used medication all along but your doctor must be your guide there, not me. What I want to stress is what so many doctors do not, change your lifestyle and work on the toxicity you are certainly suffering from the bugs, drugs, metals, bad diet.
As long as you are breathing, you have hope of getting well. You can do it!
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Lymetoo's post says it all: Cure is not a word most Lyme patients nor their drs use. IF you've had it chronically, it's gonna be there forever, IMHO.
Joe-nm, Having chronic Lyme tells me I will never be cured, and I don't really know what remission is when it comes to describing Lyme, but I do have a "new normal", and it allows me to live a good life.
My new normal does include the use of Rife, herbs, exercise, and supplements a plenty, for the rest of my life, and that's okay. Lyme arthritis/joint pain is tough, and with me, the hardest to fix.
It's different than before Lyme, but, at least, no more abx!
All the best,
lifeline
Posts: 983 | From FL | Registered: Dec 2002
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posted
I have been wondering lately just how many of the germs we are exposed do really stick around, and cause symptoms later if the immune system stops being able to hold them down. Maybe these are the mystery bugs being found in lymies? Instead of being tickborne too?
Don't like hearing about the salmonella persistence. I have had what appeared to be food poisoning at least four times.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I am very impressed by the complete thought processes in this thread - A very good discussion.
======
Lou,
About salmonella - it does have a chronic form that doctors fail to tell patients about. That is also why it's so important to treat food food poisoning aggressively up front and not just assume it will go away in a day or so.
LONG-TERM ILLS TIED TO BAD FOOD - Symptoms May Arise Years After Poisoning
-
[ 04-19-2009, 02:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Muscle testing has shown that my Lyme is in remission. I am still dealing with active babesia and bartonella, but neither are bad enough to be affecting my daily life. I'm still treating those and expect them to be right behind the Lyme in getting to remission (I worked on the Lyme first).
I was a severe case and was undiagnosed for over 30 years. I treated first with abx, then used photon therapy. Currently I am alternating between herbs and photon therapy. I post my protocols in detail in my blog.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Joe,
You said: " . . .stop my vision from vibrating . . ."
--
This could be nystagmus. First, are you taking magnesium? That should help a lot.
But, also you might be sure to ask your LLMD about this. Nystagmus is frequent with lyme but can get better.
If you don't see improvement with your lyme treatment, your LLMD may also want to refer you to a LL neurotologist for further evalauation as nystagmus can be also be a symptom of many other conditions.
Nystagmus (spasming of the eyes) is also very common with inner and middle ear (vestibular) conditions - but those also go along with lyme.
Some medicines and some toxic exposures can also cause this symptom. When you feel fatigued, resting the eyes - and the brain - is very important.
Certain exercises may be of some help. You can look up "Yoga for the Eyes" on You Tube and see some clips. The DVD is available at Amazon.
Physiologic nystagmus is a form of involuntary eye movement that is part of the vestibulo-ocular reflex (VOR). It is characterized by alternating smooth pursuit in one direction and saccadic movement in the other direction.
- Full page - and a video of an eye with nystagmus at link above.
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I have been on and off remission for some time. I relapse every time I don't sleep for a couple of weeks (or when I sleep about 4 hours a day for a couple of weeks).
I do that either because I feel great and want to catch up the lost time I had during lyme or because my daughter falls sick (with lyme or whatever). Then I have to take care of her during the night and because of the stress, I relapse.
But then, I can come back to normal again. Now I'm in such a phase, back to remission, I think. No treatment except for normal detox supplements and photon therapy with NOgier frequencies. Life is 100% back to 'normal'.
My daughter has been in lyme remission for more than a year. Absolutely no treatment at all. She relapsed this January, got almost well again, now is again with bits of symptoms. But she's going to kindergarden and most people have no idea she had ever been sick with more than colds.
I am not sure lyme can be cured either. It can go into remission, I'm sure of that. I'm sure it's possible to live a life without using any killers at all, except when necessary (like when catching salmonella, streptococus, staphilococcus, candida, whatever...). Either when catching these, or when these reactivate as said above.
It's difficult to deal with this soup of infections and parasitism when borrelia is fully active, but when symptoms finally wane, life goes back to pretty normal.
Rule number one is 'never give up'!!!
Posts: 6200 | From Brussels | Registered: Oct 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
The word "cure" is misleading when dealing with poorly understood infectious diseases.
To make a statement that we'd have the disease "forever" is nearly as absurd as saying we'll never cure polio, or land on the moon, or create artificial intelligence. Oops, we've already done all three.
You get the point. A solution is possible, and different patients probably have been "cured" -- but the complexity involved to define such issues is not presently very good. Eventually though it is "highly" likely that we'll fully understand tick born infections thoroughly.
I'm not in remission, but reasoning and probability suggest a solution can be found in my specific case.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I used to hang out a lot here when I was really sick with lyme and babesia. I learned a lot! It helped me see that there would be a bright light at the end of the tunnel. And there was. I only drop in now and again to say hi and dispense cheap advice. I would say I have some residual "brain fade" that may not improve, and the memory of a petunia. However, I'm back working and feeling good. I don't wake up every single day with a shrieking headache. There is much to be grateful for!
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I agree 100 % with Metallic. I am a firm believer in cause and effect. I believe there is a cure out there for everything. Lyme is so complex and has so many variables specific to each case.
We live in a world where we expect a quick fix for everything. One single answer for your problem. It makes for very lateral thinking and over simplistic points of view on something that is anything but simple.
I also believe in the human bodies ability to heal itself given the right raw materials and environment. Keep plugging away and address the whole picture. I will be a "pop in member" here one day too
My immune system was beaten down slowly over 2 years by these bugs, and even if I were to get rid of them all tomorrow, I feel would still need a year or more to rebuild my defenses and re-balance the delicate eco system that is ME.
Add bugs and drugs and you got yourself a long process.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I had lyme for at least 30 years, and am doing very well now. I was in constant screaming pain for several years, and lost my memory for quite a while. (I can watch a movie I saw then, and not even know I have seen it before.)
I still feel tired and achey sometimes, but life for me is better than what many of friends consider "normal." I ski pro terrain, tend small children, and run a business.
It took a year the first time to get the infection knocked down, using mostly herbs and alternatives.
I've had lyme symptoms return a few times, once due to daughter in the hospital, and no sleep for a week, once due to a long hard road trip and no sleep, once due to my father's tragic death, and again due to severe mold exposure.
I'm back in good shape again, although muscle testing still shows a touch of lyme, babesia, and assorted fungals. Hopefully the fatigue and aches will disappear again as I continue my treatment.
Bicillin type drugs helped, but I couldn't tolerate antibiotics due to fungal overload. My best alternative treatments included Venex Bee Venom Ointment, homeopathics from Deseret Biologicals, and some of the Buhner Herbs.
Now I rely on Photon therapy with nosodes, and it works amazingly well. I'm no longer afraid of lyme, because I know that if it comes back due to severe stress, I can get it under control again quickly.
Good luck to you!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
I'm doing pretty well; had Lyme's for 3 years. 8 months of abx treatment. I have no symptoms I can attribute to Lyme's after stopping abx treatment in Aug '07. I still have some issues w/my shoulder; either mild arthritis/bursitis/bursa damage from lifting weights.
I still have some inflammation issues; my doc used a C4A test to get an idea of immune-related inflammation levels; I have a high result there. Could be residual Lyme even though I'm asymptomatic. Could also be the aforementioned shoulder inflammation, or even mold exposure (which my home has some of).
Or even residual Candida in my gut(had a pretty good infestation going on while under treatment which led to dairy and soy allergies due to intestinal damage). We have to see what subsequent C4A test results show later on.
My CD-57 result moves around a lot; mostly lower than we'd like to see. But my doc also said that the CD-57 cells tend to congregate in areas of inflammation and don't circulate in the blood so much (making them hard to measure). I may have adequate -57 levels but we're working on boosting them to be on the safe side.
I don't know about being "cured", but I am doing pretty well; mostly I can attribute my various issues to aging or mal-absorbsion issues from Lyme/Candida damage to my gut (my diet isn't fantastic either, despite major improvement).
I got well enough to father a child and he seems to be healthy. Sure does keep me BUSY keeping after him.
Posts: 131 | From PA | Registered: Aug 2007
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posted
nystagmus....a friend of mine has what Keebler has mentioned....he also has vertigo for which he takes clonozepam (sp)
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
what about pam weinstein and kathy fowler-they didn't sound sick yesterday on the diane rehm show
what about dr b-he's lookin pretty good...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I choose to call it 'Peaceful Coexistence'.
I've been off abx 4 1/2 years now.
People do get well. But in addition to abx, you need to address all the issues (coinfections, yeast, fungi, parasites), out of whack mineral levels and seriously change lifestyle.
I firmly believe that for many here, Lyme was the straw that broke the camel's back.
Look under the Success Stories link in General - tons there for inspiration.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I am not cured, but I am doing extremely well.
My life is normal--lyme doesn't get in the way of my life anymore. I can do anything now that I could have done prior to my becoming infected.
I am still in treatment, but I do see light at the end of the tunnel.
I have faith that a "cure" will be found--I really do. So I'm just hopeful that I can maintain my current well-being until that cure is found. Posts: 237 | From Rhode Island | Registered: Jan 2008
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adamm
Unregistered
posted
My hope lies, paradoxically, in the very fact that Bb is a biological weapon; you wouldn't want to create something like this without a surefire way to protect yourself from it.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
As you are looking for success stories, here's one -
You might want to learn about Dr Martz's recovery from "ALS" that had been misdiagnosed. When he was treated for the tick-borne infections, he recovered:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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I would say I have some residual "brain fade" that may not improve, and the memory of a petunia. However, I'm back working and feeling good. I don't wake up every single day with a shrieking headache. There is much to be grateful for!
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