I haven't been here in a while because most of my symptoms were manageable and I have been working for years now.
I thought that I had beat the disease.
However, I have relapsed and have worse symptoms than the last time I had this crap.
I was wondering if it was typical for people to relapse? How long until people relapse? Are we going to die with this disease?
die_lyme_die Posted by sixgoofykids (Member # 11141) on :
If it makes you feel any better, I've been well for 5 1/2 years now with no signs of Lyme and I don't do anything other than eat healthy, exercise, sleep adequately, rest, and basically lead a balanced lifestyle.
Dr. H in NY gave a talk that 99.99% relapse on antibiotic treatment alone, which is why he works for other therapies to see if they'll improve the odds.
I used photon therapy for the borrelia after I saw that I was just going to be up and down forever on antibiotics. Then I did lots of detox, parasite treatment, rebuilding gut bacteria, liver cleanse, colon cleanse, etc., etc., etc. to rebuild health.
Posted by die_lyme_die (Member # 5316) on :
99.99% relapse... Oh NO!
I haven't heard of Photon Therapy? Who does this kind of Therapy?
Thanks in advance!
die_lyme_die
Posted by lymeboy (Member # 24769) on :
Coinfections are a HUGE factor in this. Bartonella particularly doesn't die easily if at all and will keep you sick. Diet and exercise is very important.
Posted by desertwind (Member # 25256) on :
I do when I over do it or when my body becomes stressed. I know I am chronic but am able to function close to 100% most of the time.
I have a protocol that I jump back on when I feel myself flaring or when I know I need to undergo dental procedures or other surgical procedures.
Posted by Robin123 (Member # 9197) on :
I have heard that the majority do relapse with stress unless they are doing an active anti-infection protocol that works for them - it could consist of natural complementary healthcare - anything that keeps your immune system boosted, keep you detoxing, fortifies your body. I think it would be a very good idea to have health habits in all those areas.
For example, some easy starters - Host Defense has 17 mushrooms in each capsule, supposed to be good for the immune system. Takesumi activated charcoal is good for internal bile flow for helping the liver detox. Taking good supplements that fortify your body is a good idea.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sixgoofykids:
Dr. H in NY gave a talk that 99.99% relapse on antibiotic treatment alone, which is why he works for other therapies to see if they'll improve the odds.
Posted by TF (Member # 14183) on :
My doctor (who cured me 10 years ago now) said that I would NEVER get well if I did not do the Burrascano exercise program (1 continuous hour of weightlifting every other day). It boosts the immune system--an essential if you are not to relapse.
So, just understand that the 99.9% relapse rate means if all the patient does is take antibiotics.
Burrascano's protocol is a 4-pronged approach:
antibiotics supplements and herbs diet exercise (as stated above)
All 4 are needed to get cured. I and a number of my friends (at least 5) have all gotten rid of lyme disease and coinfections by going to doctors who follow the Burrascano protocol.
So, don't be alarmed by this high percent. Just understand that antibiotics alone don't get you there.
The exercise requirement cannot be overlooked. Same for the supplements and diet.
I know many people who have gotten rid of lyme disease. But it was not by antibiotics alone.
Stress has not caused me to relapse. I have also taken steroids and not relapsed.
But, I don't smoke or drink and I eat a healthy diet. So, I am not weakening my immune system in any way. I still do weightlifting whenever I can, also.
Posted by LisaK (Member # 41384) on :
die lyme, do you think you could have gotten rebitten?
I ask this and no one ever answers me.....
the liklihood of relapse is greater or less than getting rebitten????
how could anyone ever know the difference?
Posted by Robin123 (Member # 9197) on :
TF, what about swimming? It's good overall exercise for the body.
Posted by Brussels (Member # 13480) on :
Well, I am 5 1/2 years without relapse. No anti borrelial treatment, but still doing some other treatments, because I don't want to live in hell again.
For me, it was also photons + nosodes, exactly like Sixgkids above, that stopped my relapses.
Now that I do not have lyme, I have time to treat other things: jaw and infected or dead teeth, KPU with zinc, candida infections that keep coming back...
Of course, I eat basically only organic food, I cook most of what I eat, loads of salads and veggies, now started on regular probiotic foods (fermented veggies) too.
Ticks keep biting me and my daughter regularly, but we still do not fall sick with lyme. So something must be working.
We're are also on a gluten free diet in the last year or so... Still treating a bit the damage lyme left (my teeth in catastrophic state), and my daughter, all the food allergies that got worse sort of disrupted her gut and gall bladder, and we're trying to solve that too.
Before photons, I relapsed the whole time, or fell sick again at almost every single tick bite I got.
You gotta treat yourself as fast as possible, do not let the disease progress. When it gets dormant, continue treating with other things like other people above said.
Either exercise, diet, chelation, electrosmog avoidance, whatever fits to your main health problems and life style. Good luck!
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by die_lyme_die: 99.99% relapse... Oh NO!
I haven't heard of Photon Therapy? Who does this kind of Therapy?
Right, but like I've said and like others have pointed out, "antibiotics ALONE"! Exercise, detoxification, nutrition, sleep, etc. and all a part of it.
I went to Dr. W in Germany for photon treatment. It's good for the borrelia piece of the puzzle. In my signature line is my blog ... if you go to the first post back in Oct 2008, I talk about the treatment. Or you can do a search here, there are a lot of threads on it.
Posted by TF (Member # 14183) on :
Regarding exercise, Burrascano does NOT recommend swimming. Here is how he describes the exercise requirement:
"Please work one muscle group at a time and perform extensive and extended stretching to each muscle group immediately after each one is exercised, before moving on to the next muscle group.. . .
a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions. This can be accomplished in exercise classes called "stretch and tone", or "body sculpture", or can be achieved in the gym with exercise machines or carefully with free weights." (page 32)
Regarding bartonella, I tested positive for it through Igenex, and my doc treated me for it. It has never come back. It is 10 years now since I completed my treatment.
Posted by Brussels (Member # 13480) on :
Bart has not come back for me either. But I know that, for different people, some infections can be VERY stubborn. Bart is one, Babesia is another, borrelia another, plus many strains of candida and fungi.
While some get away easily with some of these 'hard' to treat infections, others remain sick and doctors will always find some explanation for why.
Whatever they find, I would just try to treat it and see. No matter what I did, I always relapsed. Only after I treated borrelia with photons, all coinfections got either dormant or MUCH weaker and easy to treat.
There is some kind of synergism, I believe, among these tick born infections. The trick is to treat the most immunosuppressive ones successfully. Easier said than done...
Posted by die_lyme_die (Member # 5316) on :
Does anyone in the US treat using photons? I am not familiar with this form of therapy.
When I was treated 10 years ago, I was treated with antibiotics. I was fine for 10 years, but now I have relapsed.
I have not been re-bitten by any ticks.
I have been exercising some (treadmill).
I moved to a vegetarian diet on January 1. It is going good so far. I have been drinking distilled water, taking fish oil, and probiotics. I have even fasted a couple of times since I have relapsed. I fasted with distilled water and with fresh juice.
So, that being done, I still feel like I need some sort of "treatment". Posted by die_lyme_die (Member # 5316) on :
Another thing... I have managed to replace 2 of my amalgam (mercury) fillings, but I still have three left. Hopefully I get get those out soon.
Posted by die_lyme_die (Member # 5316) on :
Oh, I just wanted to say. This website and the people here on this board is what saved my life.
Posted by randibear (Member # 11290) on :
I can't do swimming because of the chemicals in the pool.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by die_lyme_die: I moved to a vegetarian diet on January 1. It is going good so far.
This is a major change. Maybe it's related to why the way you are feeling has changed. Maybe there's something you're missing that you were getting more of when you ate animal products.
I'm not against a vegetarian diet, this just stood out as a change that corresponds to your health changes.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by die_lyme_die: Another thing... I have managed to replace 2 of my amalgam (mercury) fillings, but I still have three left. Hopefully I get get those out soon.
Recently? I felt horrible when I had mine removed. Maybe you need more chelation.
Posted by Lymetoo (Member # 743) on :
I thought of that too, Six.
Also .. if you are drinking distilled water you are not getting any minerals. You NEED minerals!!
Posted by die_lyme_die (Member # 5316) on :
I have been sick since October, so I don't think the change to vegetarianism has made me worse.
If anything it has made me feel a little better and I have lost over 10 lbs. to boot.
My tap water is fluoridated, this is why I have been drinking distilled water recently. I read many sources that distilled water helps pull toxins out of the body.
die_lyme_die
Posted by CherylSue (Member # 13077) on :
good info!
Posted by Brussels (Member # 13480) on :
Dr. K. was not much for vegetarianism, but now he says, with age, it is not a bad choice for some people.
I notice that I also need less and less animal meat.
I also did fasting, it was amazing. I guess the idea with distilled water has to do with pulling toxins out of the body?
Why lyme comes back, I do not know. It kept happening to us all the time before photons. I can't pin point one reason or another. It just happened.
Just the increase on electrosmog could explain a lot. Taking off amalgams is a big stress. And the years pass, you accumulate plastics, toxins, heavy metals, chemicals from a variety of sources...
So your body is stressed, always, if you live in this planet. That alone could be a good reason to make your immune system go down and reactivate lyme? Just a guess.
Posted by Keebler (Member # 12673) on :
Informational links - and an article here -
Posted by 'Kete-tracker (Member # 17189) on :
"I was wondering if it was typical for people to relapse?" {sigh} Most of us do. But the longer you're on an effective antibiotic ["abx"] protocol BEYOND becoming Lyme-symptom-free, the longer (if ever) it will be before any relapse occurs. And supplements & herbs that stimulate our immune system are also very uselful in keeping borrelia Burdorferi "at bay".
My LLND explained that there was growing evidence (this is 2007, mind you) that if one is on a strong, Lyme spirochete-fighting program for 9 or 10 months *beyond* symptoms, any L-form or cell-wall-deficient form of Lyme which *remains* becomes "unviable"... that is, it looses it's ability to convert back to the wild form (spirochete). ~
---------- "How long until people relapse?" Varies greatly. It can be a few weeks, or many years... or never! Usually any Lyme relapse is preceded by something that suppressed the immune system... getting drunk, breaking bones (or any substantial operation), getting way behind in sleep, even going thru a divorce... any real, sustained stress on the body can be a trigger for Lyme relapse.
---------- "Are we going to die with this disease?" Yes, ufortunately. Anyone who's reached the late (disseminated) stage will ALWAYS have some forms of Lyme disease in them, as it's essentailly a parasitic bacterium. It has many ways to adapt to the onslaught of our immune system & any antibiotics we may throw at it.
Many post-mortem studies of test animals (i.e: rabbits) who had been on many months of high-level abx *still* showed viable borrelia Burgdorferi (Lyme) deep in the body, especially the collagenous tissues.
The key is to be asymptomatic (free of symptoms) as best we can... and many of us have been pretty successful.
Posted by die_lyme_die (Member # 5316) on :
I want to give an update if it will help anyone who regularly visits this site. I started getting sick again last fall 2014. I recovered from Lyme & Babesia 10 years ago.
Since I last posted here in February, I have been officially (by an MD) NEWLY diagnosed with in order:
1. Lyme again? Possibly. 2. Eye pressure. Twice detected. 3. Tooth Infection. (Tooth had to be extracted) 4. Chlamydia 5. Sleep Apnea 6. Toe Fungal Infection
What next?
I still have a daily fever and have abdominal burning daily.
I wonder if the treatment I took killed the Chlamydia or not. I get re-tested next week.
Comments?
Uggg! As Charlie Brown says.
Posted by Phoiph (Member # 41238) on :
die_lyme-die...
Distilled water is considered "dead" water...the structure of it has been changed through purification, and it is lacking minerals, which you need. It is also very difficult for the body to absorb.
Worse, it will leach the minerals out of the body, and contribute to an acid state and possibly electrolyte imbalances (especially if you fast with it).
It will also leach the minerals out of foods if it is used to cook with.
There are many different opinions on what kind of water filtration is best. I use a carbon filter and add minerals to my water.
Posted by die_lyme_die (Member # 5316) on :
I no longer drink distilled water (haven't for months), based upon what others have stated here and research.
Live and learn.
Posted by die_lyme_die (Member # 5316) on :
Two more amalgams have been removed since February. Last one to go gets removed next week.
Still trying to feel better.
Posted by die_lyme_die (Member # 5316) on :
Why no swimming by Dr. B? Is it the chlorine in the water? I was actually going to try and start swimming again.
Posted by Brussels (Member # 13480) on :
Teeth infection + fungal infection on skin: this looks EXACTLY like me AFTER LYME was gone.
It took me years to feel that these exact cocktail of problems knocked me down, even without lyme.
It did knock me down, specially the teeth problem (and jaw), to the point I feared for my life. That was sometime in autumn last year 2014.
I went back to my lyme doctor, and decided to pull teeth off. Well, I had 5 dead teeth, probably they died slowly after lyme was gone, and infection built up in my jawbone.
To my understanding, even without lyme, when the immune system is not strong enough and the body full of toxins, we can be almost as sick as with lyme, with multiple active infections, fatigue, pains, fog, etc.
After pulling the teeth off, cleaning cavitations, trying to control jawbone infection, I was not still good. Fungal infections in the GI tract and in my toes were awful. they were 3 DECADE long, kept coming and going, nothing else was working to keep them down.
by chance, I started using an old device called the Violet ray. In a very short time, the candida / fungal skin infection stopped growing, then receded, till it disappeared without any special diet.
that was like the gift of God to me. My fatigue lifted, my liver /gall bladder pains disappeared for good (they were also chronic, since lyme disease many years ago).
Almost all my teeth got slowly better, but I still had one or two spots with pains or discomfort. It took me 5 months to reach that state where I found infections were not haunting me that much anymore, not in great numbers at least.
Ever since I started with the violet Ray, I had been bitten about 5-6 times by ticks, all attached. So far, so good. It happens every year, so I'm less worried about that.
Before photons, I kept relapsing on and on again, non stop. Only photons stopped borrelia, but it was mainly an antibacterial treatment, targetting borrelia but not most infections.
Only now, i feel I am starting to feel my body can fight generalized candida and teeth infections. Of course, still with help of my violet ray (and just recently, I added another supplement, called megahydrate). Still early to say, but looks very very promising.
Your story looks like mine, it may not be only lyme, but simply chronic infections.
I dont believe that targetting infection by infection is the way for us without lyme and coinfections. There is a more basic problem, with our immune system, and that should be targetted. Easily said than done, but that is what I'm trying to do now.
For years, since lyme was still active, i was targetting infection by infection, till I got rid of them 'all'. So i thought.
In fact, we never get rid of all infections, and some start to slowly take more ground inside us (specially in the mouth).
that is I do not believe in taking antimicrobials forever as a solution. In the end, that is only postponing a big catastrophe long term. That's why I'm looking for more holistic solutions...
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