Topic: Dr B has seen remission without antibiotics
luvs2ride
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posted
I am stealing this quote from Cave's thread titled Dr B's exercize recommendations. It is an excellent thread. Please read it.
Here is the quote about remission without abx.
I encourage all Lyme patients to go through a formal rehabilitation program. Generally, this involves progressing from simple physical therapy modalities, then to stetching and mobility training, and finally to formal strengthening exercices supervised either by the physical therapist, or by a qualified, credentialed exercise coach.
A surprising thing happened which none of us expected-when Lyme patients went further with their rehab, to include a whole-body conditioning program, the lyme seemed to go away!
I have seen this occur repeatedly, including in some patients who did not even go on antiobiotics!
I'm sure he is not saying "Don't do abx" but he is saying appropriate exercize is so critical that some have achieved remission without even using abx.
Now folks, if it works that well without abx, then how much better and faster with abx?
And what does exercize do for the body? It increases blood and lymph flow which carries nutrients to the cells and toxins away from the cells. Exercise also detoxes through increased deep breathing. The heart pumps our blood in through one set of veins and out through another set of veins. The first place the toxic (out) blood goes is to the lungs. So deep breathing is an excellent method of detox.
Dr B talks of the increased body heat which is bad for lyme and he speaks of the ABSOLUTE necessity of a low fat diet to help the body and boost the immune system.
Dr B clearly recognizes the importance of treating, nuturing and healing the body (the terrrain) before lyme can be cured.
WOW!
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
I read that thread as well. I even went and ordered several Tai Chi DVD's to get started on something.
I was doing some research last night on the adaptations of BB. It is scary the way it changes, goes into latent stages. And how it is difficult if not impossiple to kill at different phases.
It seems we/they know so little, although more than once known, about this specific bacteria and how to eliminate it from our bodies.
That tells me that I have to put out all the stops for them. If that means adding excerise, then add it.
If remission is my best hope then I want remission. But I want it to last. I want to be cured. That is my true wish.
I want my life back. To have the freedom that everyone out there without BB has - the freedom to make a choice and not worry wether or not
my body will cooperate with attaining that direction.
Sorry to make this a "pitty pot post" - back on topic!!! I AM adding excercise!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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luvs2ride
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Hi cj
Yours is not a pitty pot post. You are expressing the exact emotion I felt when I was so sick. Your lack of health does dictate what,when how and even if you will do something.
It does get better. In Jan of this year, after reading lots of good posts here and at another website about rebounding, I purchased a very nice (translate to expensive) rebounder. My lyme has escalated to Rheum. Arthritis which was doing fairly well and I had hope the rebounder would make it even better.
How sad I was to find that even the most gentle bouncing possible flared up my ankles and knees.
Having spent so much, I was determined to use it somehow, so I would sit on it and bounce while watching TV. I enjoyed this because it felt much like riding my horse at a slow trot.
It took a couple of months but I kept getting better until I could stand and rebound for short periods of time (like 5 mins). I would do this everytime I had a chance which was minimally 2x daily.
I just kept getting better and better. Now I have no joint pain when doing anything. I can mount my horse from the ground again. I can run (though I do not run for exercise as I think it is hard on joints)and I can rebound 30 mins at a time. I'm not sure how much rebounding helped but I believe it helped alot. It is a great way to get the lymph glands moving and they carry garbage to the liver and kidneys for elimination.
I also do a mild form of yoga for stretching and strength training. I deep breath while doing both of these exercises and even whenever else I think about it. Like in the car, grocery store, etc.
You will get better. Especially if you add diet and exercise to your regimen.
Go for 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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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Itsy_bitsyone
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posted
What I can tell you is that after having this for 30+ years, it absolutely DOES go into remission on its own (provided you do not have co-infections, I guess). I was a very active kid and young adult and had periods of good health in between arthritis and active flare-ups. The bottom line is moderation. If you under-do it, and don't get out and active at all, you will not feel well. If you over-do it, you'll be hurting a LOT. Just walking the mall once or twice a week is beneficial.
What I can say is that it is progressive. The older you get, the harder it is. AND never being treated at all, based on what I have read here, is much better than being undertreated and relapsing. I was OK for 20 years, with problems on and off...some rather debilitating symtpoms, always followed by decent times. I was never sick for months on end until I got over 27 years old. After that, the last decade has been rough. However, for the first 20 years, I spent more time in remission. Way more.
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Truthfinder
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Excellent observation, Luvs!
***''I have seen this occur repeatedly, including in some patients who did not even go on antibiotics!''***
Thank you for your honest comment, Dr. B.!
Clearly, Dr. B. has seen remission occur without the use of antibiotics. We've heard it from the ``horse's mouth'', so to speak. And Dr. B's observations appear to parallel what we read here at LymeNet on a regular basis.
Whether Doc B. attributes this non-abx remission to exercise or anything else isn't the important thing: the fact that it happens at all is quite significant.
By recognizing this and attempting to understand this better through research and even personal experience can perhaps teach us a lot about `what makes this disease tick' (if you'll pardon the pun).
And obviously, from Dr. B's own observations in these guidelines and others, the `terrain' is a key factor. Anything that changes the terrain to a significant degree can be the causative factor in remission.
And isn't knowledge of how to treat this disease the thing all of us are after?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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CaliforniaLyme
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Yup, there have always been pepole able to fight it off with their own immune systems alone-*)!!
I wish it was online but I have searched for it and not been able to find it online- I had seen it in an LDA video of a pedatric conference- Rocky MOuntain Labs has this footage of actual spirochetes both going into and lysing cells and also the oppsite- of cells killing spirochetes- the most amazing Lyme footage I have ever seen!!!
I wish I and everyone else were those people with fortunate genes or immune systems- would be nice)!(*_)(*!*!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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GiGi
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We learned "shaking". Pick your own music, speed, and step from one foot to the other and/or move any part or all parts of the body in any direction that feels good - you shake, you jump, you let the arms fly - any move at any speed in any direction that you feel like - eyes open, eyes closed while doing it -
It activates the body by incorporating every joint that wants to move and releases all tension.
CD's and/or DVD's available.
P.S. One can do "shaking" from a sitting position if that is all one is able to do.
[ 22. October 2007, 01:04 PM: Message edited by: GiGi ]
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
As someone who's built much of my life around exercise, I can say that it has made a difference for me. Deconditioning takes it's toll on a body. When we're sick, we get deconditioned pretty quickly.
I wish everyone wiht Lyme the ability to do weight training and aerobic exercise as soon as they are able too. Study after study states taht even small amounts of exercise has a whole host of benefits for the human body.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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Keebler
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posted
-
FOR THOSE WITH EXERCISE SET-BACKS WAY OUT OF PROPORTION :
if anyone has exercise set-backs out of the ordinary, here's a separate thread for that population with a few articles for how to work through that.
Post-Polio and Post-M.E.- New book furthers polio hypothesis
Jane Colby - The CFIDS Chronicle - Fall 1996
EXCERPT:
when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts.
We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E. -
[note: M.E. is what CFS is called in Canada & Europe - can't spell but myalgic encelpha .. - inflamation of the brain and as we know may CFS patients may have undiagnosed infections.]
=======================================
Big differences in types of exercise and safety factors for individuals. Adrenal function also should not be pushed past
WHEN WORKING OUT DOESN'T WORK OUT By Dr. Christopher R. Snell, Dr. J.Mark VanNess and Staci R. Stevens, Guest Contributors
The CFIDS CHRONICLE - SUMMER 2004 pdf 4 pages
This explains a lot about aerobic and non-aerobic exercise and the heart. - good to share with others.
-
[ 05. January 2008, 02:38 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sixgoofykids
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I have had Lyme for 35 years, undiagnosed until last December.
I had three flare ups that caused what seemed like CFS along with GI issues. Those three were cleared with rest, diet, sunshine and rigorous exercise.
I have exercised heavily for years now ... weights (three sets of each exercise, about 8-12 reps, to failure) and cardio for 30-40 minutes.
Most of my years I was healthier than my "healthy" friends ... I did not know I was "sick."
Four years ago we were under significant stress (stress also caused my other three flare ups). This time I was already eating a good diet and exercising, but it didn't clear up and progressively got worse until I did internet research and discovered what was wrong with me.
I was CDC IgG positive (8 positive bands) so even as sick as I was, my immune system was working. Most of this time I have at least continued weights, but at times I've had to leave off the cardio.
I am on abx and am responding well. I am also being treated for babs and bart.
I am living proof that it can be cured without abx ... yet at the same time, also proof that it doesn't work for everyone or every time.
I really think that exercise through the years has been critical to my good health ... I am a healthy person with a bacterial infection.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I wish I could exercise. My main symptom is pain/burning in my legs. If I exercise it flares to and it becomes excruciating. Before this I used to swim and lift weights. There is no way I can do it until my pain decreases substantially - and in 6 months it never has
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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Health
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posted
I was exercising for years before I became ill.
I ran 4-5 times a week and worked out with weights, and mountain biked sometimes.
I still became ill.
I started to exercise after being on antibiotics for months, and felt it did not get me any better, I still needed antibiotics and I still was not getting any better.
I did though notice something with exercise about 1 month ago, I went for a bike ride on the mountain bike for a block, and then came back, I was SO sick the next day.
Crying because I was so sick I said NO more bike rides. I actually could not believe that I was strong enough to bike ride, because 1 month before I could not do this,
So, I then went for another bike ride a few days later and I went for 2 blocks, AGAIN I was so sick the next day, for about 2 days or so, I was shakey, breathing bad, burning all over, it was what I call 'the deep sickness' when I am sick.
SO, I then tried again, 1 week later and want to say, that I kept biking and went 3 blocks, and was NOT sick the next day, so I went out again, and was even exposed to light which I seemed to ok with,
I was NOT sick the next day, I then did this, and was OK! I then had some stress in life, and have not gone on BIKE. I am too sick, no stress now, but too sick to bike, I dont know why I am getting sick again.
I could not be exposed to light riding a bike, 3 months ago, it made me so ill, so whatever I am doing is working slowly. ANTIBIOTICS.
I feel exercise played a role in better health for a time in my healing, as you can see above, HOWEVER, I became so very very sick after the first bike ride, that I said i would not exercise again at this time in my life, but I DID, and seemed to feel better slowly with it.
Now, I am too sick to exercise and it could be that because I have been rifing, ALONG with my antibiotics, I am worse, I dont know if it is the herxing, or me reacting to the EMF from rife? or I am just getting worse, I dont know.
Thought I would share this, best I could
PS, the bike ride in the fresh air seemed to make me happy, really lift my spirits, I think this is because I love to go on mountain bike, for a time there, it was like I was back in time, and was WELL. Joyous feeling, but then back to house and back to bed and sick.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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luvs2ride
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Health,
I don't know anything about Rife, but I know stress can make you very sick. In fact, stress is so detrimental that you can eat a perfect diet, exercise religiously and if you are stressed, it will cancel out all the good.
I'm betting your stressful situation set you back.
The herxing after the exercise may have just been the effect of too much exercise.
Just try not to overdo and set yourself back.
You were a runner before coming down with lyme? I find it very interesting how many of us were bigtime athletes before we got sick.
Exercise builds up the body. Too much exercise breaks down the body. Were we all guilty of too much exercise?
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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Greatcod
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Its important to understand that Lyme is something of a relapsing remitting illness. So the immune system gets it under control for a while them it returns. Especially early on.
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sixgoofykids
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Luvs, you are right about the stress. That is what caused my current flare up. I was healthy and did not overtrain, I was very aware of that. Overtraining can cause adrenal fatigue in a healthy person, so it definately could cause someone with Lyme to get very ill.
I was in remission without medication, but after having amalgams removed, exercising, good diet, supplements, etc. for 12 years. I only flared during pregnancies, and the flare ended when the babies were born.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Sixgoofykids: Are you on abx for your current flare up? Did you take abx for those flares you experienced around pregnancy? How long?
Posts: 655 | From USA | Registered: Sep 2007
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sixgoofykids
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I am currently on abx. My first three times I became sick from this -- 1982, 1986, 1991 -- I got better without abx and without knowing what made me ill. This time (2003-present) it was too much ... it took four years to figure out what was wrong.
I did not know I had Lyme before last December ... the symptoms resolved on their own after the pregnancies. I would NOT have done it that way had I known I had Lyme, I would have been working with an LLMD during my pregnancies.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dave6002
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I would bet it's the heat doing the trick(remission or cure).
Posts: 1078 | From Fairland | Registered: Apr 2006
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lymebytes
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He also mentions that you can do abx forever, but you will not get well without excercise, he stresses this point at every conference.
Also, he indicates co-infections will resolve on their own if Bb is brought under control. This is in his treatment guidelines and LDA video.
My LLMD said this long ago, if Bb is brought under control the body can fight the co-infections.
Excercise Dr. B stresses for 2 reasons, saying that the tiniest bit of oxygen will kill Bb, and heating up the body intenally.
I knew a girl with LD - she began an excercise program for 5 years and was well, as soon as she quit her program, she relapsed.
sixgoofykids
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Dr. B said in a conference from 2005 (was recently posted her .... on bartonella), that they used to treat very long term for borrelia only and that the coinfections would resolve themselves as the immune system got stronger.
He suggested that they now do it differently and treat the coinfections, which shortens the total treatment time.
He said that if you just got babesia without Lyme, it would resolve itself in six weeks, that it's the Lyme that makes coifections take hold.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Peacesoul
Unregistered
posted
quote:Originally posted by sixgoofykids: I have had Lyme for 35 years, undiagnosed until last December.
I had three flare ups that caused what seemed like CFS along with GI issues. Those three were cleared with rest, diet, sunshine and rigorous exercise.
I have exercised heavily for years now ... weights (three sets of each exercise, about 8-12 reps, to failure) and cardio for 30-40 minutes.
Most of my years I was healthier than my "healthy" friends ... I did not know I was "sick."
Four years ago we were under significant stress (stress also caused my other three flare ups). This time I was already eating a good diet and exercising, but it didn't clear up and progressively got worse until I did internet research and discovered what was wrong with me.
I was CDC IgG positive (8 positive bands) so even as sick as I was, my immune system was working. Most of this time I have at least continued weights, but at times I've had to leave off the cardio.
I am on abx and am responding well. I am also being treated for babs and bart.
I am living proof that it can be cured without abx ... yet at the same time, also proof that it doesn't work for everyone or every time.
I really think that exercise through the years has been critical to my good health ... I am a healthy person with a bacterial infection.
This is me almost to a "T"! I've been sick for 13 yrs and when I got sick, I was told I had CFS. I had no other way to try to get well so I changed my entire diet and joined a gym and worked out with heavy weights 6 days a week for 2 hrs. Withing 2 months, I was 99% better. I had some bad days, but never what I was before my life change. I went downhill last yr when I had a D & C and was not working out as much. I was dx with lyme last Aug.
This is prob why I feel odd about taking all these abx. I almost feel I need to just get back to my work out regime.
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sixgoofykids
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quote:Originally posted by Peacesoul: This is me almost to a "T"!
Yeah, I've thought the same thing after reading several of your posts.
I tried the exercise route this time ... well, I had been exercising already when I got sick. But I was too far gone ..... perhaps the stress went on for too long ... perhaps the doxy I took for another illness stirred up the Lyme too much .... whatever it was, I needed more than before and I was sicker this time.
I am back to my workout regimen and I think it's a big part of my recovery. I only feel bad during herxes and tindamax.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Greatcod
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Well, Lyme after all is a relapsing remiting illness..like the Relapsing Fever caused by a similiar spirochete. I suspect a lot of people who think they have improved on a given protocol are simply experience the norma course of the ilness...that the treatment has had no impact what so ever.
And keep in mind that over doing exercising can cause a relapse. Nothing simple about Lyme, nothing at all.
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Peacesoul
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Tabers, wow, another great post. You basically just got into my head/mind/heart and wrote exactly how I feel about lyme.
I also believe long term abx are not the answer. Every darn time I pop an abx, my instincts are telling me something just isn't right. Yes, I've been sick for 13 yrs and propably should get the germ load down and give the abx a shot, but I don't think it's going to cure me.
My homeopath believes in working with "the person" and not the disease to solve the issue. Everyone is so diff so every should be treated diff. She believes if one can get their immune system strong enough, our bodies can fight any illness. I don't think this is 100% accurate, but I believe making the bdy strong can help in any cure.
When one has let's say bronchitis, we are given abx and the bacteria is killed. And once we start abx, we feel SO MUCH better. This is why I have a hard time believing in herxing. I don't believe one has to feel TOTALLY worse before getting better. My body has been under so much stress from these abx, I feel like I will never get better.
This site is negative, but there is also a lot of good people with good info. The reason why you hear the negative is b/c people usually only post when they need support from being ill.
But the commment about relapse/remitting lyme, I believe it. 13 yrs ago, I was so sick, I too had a hard time functioning. When I joined the gym and changed my diet, I was better for 11 yrs. It was only last yr I started to relapse. Not sure why, but my heart believes it was a mix of stress and my D & C. Almost like that procedure stirred something up. Within a week I was getting pain, fatigue and in a months time, I had vertigo etc.
Do I think I will ever be 100%, no, but I do believe I can be 99% better as long as I keep up my healthy routine.
Who know, I hope one day they find a cure for lyme, because I truly don't believe the cure is long term abx.
posted
I suspect many people here don't understand why Lyme is relapsing -remitting illness, or what that means. The Lyme bacterium is capable of antigenic variation, that is, it can vary its outer surface protiens to evade detection by the immune system. So when the immune system contains it, it is capable of becoming something of a diferent animal, which is to say that the antibodies the immune system had generated to control the bacterium no longer work, because those OSPs have been down regulated, and the immune sytem is facing what to it is essentaily a new infection, ie, the person gets sick again. (What makes us feel sick and weak is the poisons of our own immune response.) The arguements you are making about exercise and such are certainly valid in recovering from the deconditioning the illness produces--however, the new version of the bacterum can emerge and bring us down again. Not much at all to do with weight lifting or positive attitudes,; it is about the capacity of Bb to re-invent itself.
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CaliforniaLyme
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GreatCod, many years back 3 members of the MountainView Lyme SUpport group decided to go completely off antibiotics and just ride the wave so to speak. Their support gorup leader was one of those people and she & I had discussions about what happened- she and both the other people got worse and got better at various times without treatment of any kind- not in full remission but betetr- if they had been on treatment of any kind no doubt they would have allocated their experiences to whatever they were doing at the time- but they were doing notihng-
two of those people ended up going back on abx at various times- the third I don't know-
Yes it is a relapsing remitting illness. I appreciated your comment in the spirit of which it was intended greatC- accuracy.
I have never dared to do that, nor would I, because my progression was more lethal and faster than theirs- these were very chronic FMS/CFS types- not tertiary!!!
All are still chronic.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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djf2005
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i did not read this thread thorughly, but i did want to add to it that one of the biggest factors in my recovery from all tbd's has been exercise.
i started by crawling to the tv and doing 5 min of yoga.
now, on even my worst days, i FORCE myself to do a workout, pilates, yoga, tai chi, etc.
i have a lot of head pain and toxins in the upper body area, so i cannot do cardio yet (although latest findings in neuro science points to cardio being one of the best ways to exercsie your MIND)
hang in there everyone. start out slow, then gradually add as you can go.
before i got sick, i was 6' 200 lbs and benching 300. now, i am glad to be able to lift a 5 lb dumbbell, because its progress.
yes, this disease is humbling, but we can, along w diet, exercise, nutrition, and abx, beat it.
good luck to us all
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I know a woman who has been housebound, and often bedbound, with Lyme for a decade. She is on Fytenal patches for the horrible pain she is in. She has had a great deal of IV ABX treatment without significant improvement. She is 60 years old. Do you want to tell her that her problem is that she doesn't do stenght training and aerobic exercise, and has a negative attitude? I never said don't exercise-- that's stupid--I would suggest that if you run a couple a miles a day that you don't try a marathon with no sleep the night before just to see if you could do it. There are a zillion factors that go into an individual's experience with TBD...people who think they have all the answers are delusional. People who condemn Lymies who are still sick are in fact sadistic.
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Greatcod
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Is the reason that three years olds in the third world die of malaria that they have negative attitudes?? Thar's quite a deep understanding of the disease process...or maybe it's just silly.
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map1131
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Tabers, I loved your post. Reminds me that your health and knocking lyme & company down a step or two is achievable by looking outside the box.
If you are sitting at home, saying woe is me, I don't think the magic tooth fairy is going to show up at your door and help you.
Thanks for bringing this up again.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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CherylSue
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I had remitting/relapsing CFS for 7 years before I was finally diagnosed with Lyme in October.
Walking outside in the fresh air is definitely part of my rehab. The trick is to not overdo. Build up gradually, and maybe not everyday. I recently walked my first mile since my relapse 18 mos. ago.
Too much exercise can bring about relapses, too. You have to listen to your body and gradually work up to all. Keep a log on how far you go.
I've gone into two remissions. I hoping for the third. I recently started ABX in October, and inching slowly ahead.
Last spring I did 3 months of Chinese herbs working with a TCM doctor. I relapsed further into my relapse. The herbs gave me more energy and I was doing more, but they didn't get the bacteria load down, and the exertion caused me to have a setback. Caffeine, ginseng, and other stimulating Chinese herbs were part of it.
I then tried South American herbs - cumanda, and burbur. I herxed like craze on the cumanda, and it took me 3 months to work up to the therapeutic dose of 15 drops/twice daily. The cumanda kept things at bay, and I very slowly inched my way forward without a significant relapse. Cumanda was also an antifungal, and I think that helped with some things, too.
I pulsed amoxcillin for two months, and didn't see much progress. I've been doxycycline for a month and saw gains in brain fog and endurance - about 10%. Modest, but at least a gain.
I tried azithromycin 1/4 tablet for two days, and herxed so bad I was crying.
My first two relapses only lasted 13 months. This one has endured for 18 mos with no end in sight. I wish I had started ABX sooner.
Any encouragement is welcome. Thanks for listening.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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It is horrific to expect that this is something that will plague you for the rest of your life.
My wife and 3 yr old daughter are currently on ABX. My daughter is well and is expected to get off meds next month. My wife is still getting there.
It's depressing if what Greatcod says is true - are they sentenced to a life of remittances and relapses?
I understand that BB morphs its protein coat or whatever. But what about the fact that BB cysts lose viability the longer they are dormant (I've read this in literature).
Also, I know a guy who had a bad case of Lyme about a decade ago. He got better with ABX and has not relapsed since then. Are we to assume that the BB are waiting to pounce out of hiding back into his blood stream? Even after 10 years?
Posts: 655 | From USA | Registered: Sep 2007
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adamm
Unregistered
posted
I just don't see how it could be incurable in all cases
where it's disseminated. Bacteria are quite different from the viruses
most frequently cited as examples of ineradicable pathogens.
I mean, assuming one were to use abx to get to the point of
being
completely asymptomatic and subsequently initiate long-
term maintainance therapies (I mean intensive--getting as
healthy as you possibly can), wouldn't this, time, and the
immune
system eventually clear the infection.? A keet can't live
forever, after all...
Well, I guess we just have to wait for some better research to be
done.
(Just for the record, my LLMD claims to have seen patients who
caught it within the first two years cured.)
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's really hard to say. It seems that we all have different ways of responding.
The idea of the original post is that exercise can cure people is due to a rise in body temperature (or so I thought I read in 1 article).
I'm sure there are other benefits (more O2 in the body, getting the lymph circulating, endorphins, etc.).
I haven't been able to do a good work out in many years.
I really missed it for a while.
I just try to do what I can but it's very easy for me to really throw my back out & be in searing pain for weeks just doing a light stretch.
I've started using a rebounder but I'm going slow.
I've also been using a wonderful sauna.
I think I found my limit & I think the heat has really made me get worse - which may actually mean it's killing spirochetes.
I'm going to take it easy & look for ways to soak up the toxins.
I thought I was herxing from the abx but I think it was really the sauna!
The sauna I go to is a special Korean sauna & some are very hot.
They have about 5 or 6 different varieties of sauna.
I guess the key is moderation & knowing when to quit.
I'm sure many of us are really sick of being ill & want to progress faster - but we just have to proceed with caution.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Peacesoul
Unregistered
posted
quote:Originally posted by Greatcod: I know a woman who has been housebound, and often bedbound, with Lyme for a decade. She is on Fytenal patches for the horrible pain she is in. She has had a great deal of IV ABX treatment without significant improvement. She is 60 years old. Do you want to tell her that her problem is that she doesn't do stenght training and aerobic exercise, and has a negative attitude? I never said don't exercise-- that's stupid--I would suggest that if you run a couple a miles a day that you don't try a marathon with no sleep the night before just to see if you could do it. There are a zillion factors that go into an individual's experience with TBD...people who think they have all the answers are delusional. People who condemn Lymies who are still sick are in fact sadistic.
No one in this thread was condeming anyone who is still sick with lyme.
Tabers is simply giving a positive and encouraging post about how she got well. When I come here I want to read encouragment and how people got well. I've been here for a few months and actually find Tabers one of the most logical people here.
My best friends Mom was dx with colon, kidney and liver cancer. She was given 3 months to live. She is 75 yrs old. Notices I said IS and not WAS 75 yrs old. This woman has the greatest attitude I've ever seen.
She went through the surgeries, the chemo and radiation and over 2 yrs later. She's still alive. All the cancer is gone expect for in her liver. She's still on the healing path, but never stopped working, playing bingo (she just won 40 grand) and going out daily with her friends. Her attitute is what's helped keep her alive along with medical intervention.
But ask ANY Oncologist and they will tell you the majority of their cancer patients that surive are the ones with the best attitudes. It's simple, mind over matter. If anyone has studied deep meditation, you would know that we can make our bodies do anything our minds want.
As for why a 3 yr old would die from Malaria, well now we're comparing apples with oranges. First off, that child prob had no medicine and secondly, the child was probably malnourished to the point of no return. And third, a 3 yr old does not have the mental capacity to process info on how to be positive or not.
Lyme is not a science and we're all guinea pigs whether we like it or not. And all we can state is what helped each one of us. For me, when I changed my diet and stopped eating like cr*p, worked out, lost weight and was happy in my life, I was ok for a long while. Is that the cure, obviously not since I relapsed, but like my LLMD said, doing those things for myself is probably what kept the lyme in check and prob is what kept me out of being worse and bedridden.
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posted
A friend knows someone who said she regained her health with Pilates. I don't know.
Breath/oxygen is powerful.
Posts: 233 | From United States | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Walmart has a mini trampoline (rebounder) in their ad this week for $19.00. I think I paid $10 more for the exact same rebounder at Dick's a couple years ago.
FYI. $19.00 is pretty cheap for some light rebounding and detoxing lymph nodes. Light rebounding, barely taking feet off the mat will stimualte your immune system, so my massagists that cost a lot told me when I bought it.
She tells me 5 minutes 3X a day. I could work up to more minutes???? It's the old.....I must start it to do it. No pain, no gain. My knees aren't happy when I do it. They aren't happy every day without it???
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I bought a rebounder a few days ago ... my lymph nodes have been sore ever since ... I musta needed it! Even though I've been doing 30 minutes at a time on the elliptical, then lift weights after that, my lymph nodes are sore after about 25 jumps.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I wish I could get a square rebounder. My knees might tolerate that, because I tried one once, and there is less torque on the knees/hips.
Does anyone know where I could get a square one inexpensively?
Posts: 233 | From United States | Registered: Oct 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
!
Yes, Burrascano does mention that exercise has worked for some individuals...OMG...even without abx...
I was also very athletic in my lifestyle prior to ACTIVE LYME INFECTION. I probably kept it in remission most of my boyhood and adult life...
(again my use of capitals is only for ephasis, not shouting)
I was relatively healthy most of my life....waxing and waning all along from approx age 4 in 1954,
when I believe I actually had my first REAL manifestation of active infection of lyme or TBD's.
GEE....it coulda been my negative attitude back then....
I don't know, did'nt think about it much back then....
one way or the other....did'nt know it existed...
nor did I know what the heck I had either....
for OH....
ALL MY LIFE!
That's right folks....it can and does go into remission....
Sometimes it's even "CURED"( if the ducks leave you alone initially and don't ever misdiagnose you!...Gee...but...
that never happens folks....
Now does it!???}.....
but I doubt VERY SERIOUSLY (even with Dr. B's remarks, I have also read in his 2005 copy,
but strangely NOT in the ILADS copy of November 2002)
if it is ever truly, completely erradicated from our systems.
Not only that, due to the HIGH incidences of infection or RE-INFECTIONS because we are out running around in nature,
who's to say if it's an OLD returning variation or a brand new infestation....
NO doctor or scientist alive today from anywhere would be able to tell you which is which.
Not until we get some money for better research, training, awareness etc.
I know for a fact that because of the lack of above mentioned knowledge of this disease.
When my initial infection either came out of retirement....
Or, I was reinfected to add to the stuff my immune system put into remission with doctor
administered IM shots of penicillin till I could walk again, waaayyyy back in 1954,
Or, because I trusted the, mainstream medical ducks and took their anti-inflam/immuno-suppressant,
drugs and those, ALONE, made me, exactly, what they said they will do...made me IMMUNO-DEFICIENT....
let's hear it for "Stephen Johnsons Syndrome".....or whatever else the,
"BIG PHARMA" boys have'nt figured out what blocking some of the more efficient bodily
functions and reactions and healing processes will do, will also CAUSE as yet UNKNOWN
physiological and psychological manifestations....
Or maybe as I've seen here lately.....
I just did'nt "PRAY" enough is the reason my infection remains ACTIVE...
even after I've been treating it for years now... SO HOW COME FOLKS?
I was Positive IGG/5 out of ten bands and a very high urine count in 98,positive IGM in 99 two
out of three bands, positive again PCR in 2002, gee even positive IGM AND IGG IN 2003. Different
tests,doctors,labs etc...but only me and my disease were the same.
YEAH....boys and girls, don't that make me HAPPY! TABERS, eh, what's that you say?
"JUST WHAT I ALWAYS WANTED"....to stay sick!
Why don't you go somewhere and happen!
Or you may be like some of the OTHER folks I've had the displeasure of seeing here again.
The ones that have been "relatively cured" but have had relapses.
Ya want to explain that? No?, People around here are'nt, "NEGATIVE", people "who just want to stay sick"....
WE'RE....R E A L I S T S !!!
We know there's a whole lot more to this illness then meets a one or two year lymie's definitions.
A whole lot of you missed Burrascano's warnings of NOT doing aerobics as well.
Just happened to notice.
Even if I were young enough to do them....
Regardless...I'm extremely honestly glad some folks get well.....
most of them, have the dignity to stay off of here and not come back and make uneccesary remarks.
Peace and Love to you all....
zman
[ 13. February 2008, 05:17 AM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Greatcod
Unregistered
posted
The real negativty here is from Dr. B who "has seen REMISSION without ABX"-- thread title. The SOB is condemning many people to a life of fear and doubt. As we know, a doctor with a positive attitude would have said CURED. Attitude is everything, science is negative thinking. His negativity is appalling, is it not?
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Peacesoul
Unregistered
posted
Zman, just your attack is the negativity I think Tabers is ref. to. I'm on two other lyme sites and NEVER would anyone talk to another member the way you just did. To claim someone was not really that sick when you don't even know them?! You sir, are unkind!
Tabers, don't leave this site. I love reading about your recovery and hearing your insight. It makes me (and I am sure many others)feel hopeful. Don't let one bad apple spoil the mix babe :-)
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
My dear Tabers,
You are accediting me with things I would never in a million years write here or anywhere else.
I really don't care what you do with your free time. This must be some "extra credit" your Yaley Profs are giving out....
Because the Congress and House are back in session....gee, keep them busy over there so
they don't have time to email or phone their representatives!
Go over to lymenet and harass the sick people and you'll get at least a passing grade in your biology class!
If you can get one of them angry at you by using misquotes...do that too..."they all have
that mental problem ya know and so you can use it against them and make them even sicker!
Talk about sick people!
HAHAHA!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Greatcod
Unregistered
posted
At the end of the second year of "Chronic Fatigue", I couldn't even carry on my 20 hour a week part time job, I was so exhausted. I just rested for a month, and achieved substantial improvement, and returned to working 40 hours and more a week. No ABX treatment whatsoever was involved.
At the end of my fourth year, after a weekend of simply doing too much physically and not sleeping enough (I had been exercising--one of the factors being that I rode my bike too far and became exhausted) I began a decline that left me pretty much housebound six months later.
The most negative and hurtful thing I have ever read on this board is that very sick people are in that position because they have bad attitudes and don't exercise. Savage, actually, but that's Lymenet.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I first got sick in 2001, living in a very Lyme-toxic area. I relapsed in 2004, when I had eliminated virtually every possible source of re-infection, so I know it was a true relapse.
This past fall, I had begun to get ill again. I had tried to just live with it, but the fatigue, pain, and achiness were always with me. I was too ill to keep up with even my usual part-time schedule as a gymnastics/dance instructor. In December, I started to think I might need to go back on antibiotics. My daily headaches from the last flare were starting to come back.
Just one week ago, I woke up feeling remarkably better. Stomach stuff gone. Headache gone. Arthritis mostly gone. I felt good enough to add a mini exercise workout, begin to get back in shape, and begin a diet. I have lost 5 pounds this week -- the diet wasn't severe, and I was only 20 pounds (now 15) overweight.
2001, 2004, and 2007 -- perhaps I will relapse again in 3 years. Ask me in 2010!
I will say that there is a time to treat -- the first time ill, when symptoms are too severe to endure, or when they threaten to leave you with permanent damage if untreated.
Stress? Hmm, I survived the stress of a major car accident (2006) without relapsing, and flared this last time with no more than the stress that is my life anyway. Exercise? I recommend it as soon as you can move, but I know that when I was sick that adding exercise made me feel miserable. Mild exercise now makes me feel great! You just have to gauge what you can take.
However, like Dr. B says, I like exercising to raise body temp, but I have scheduled exta time to rest or nap as needed.
This is only my experience, but I hope it adds to the body of anecdotes that contribute to helping people find wellness.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Tabers, congrats for `keeping your cool' on this thread.
I've been here for a couple of years, and the only posts I've seen where an Old Timer told a Newbie that they probably wouldn't get well was when ALTERNATIVE treatments were being discussed.
But then, I can't read every thread, so probably just missed it.
Of course, to someone who can't go the `drug' route, suggesting that they can't get well can be devastating to them. Especially when there are so many stories out there of people who did NOT get well with abx, but went on to get well with some other treatments. Of course, those people don't post much here because of the negative response alternative discussions usually generate.
It's sad - and somewhat mysterious - that some people really don't want to hear that recovery is possible without abx. But the evidence is out there - just not much of it here on LymeNet.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Greatcod
Unregistered
posted
Dr B's say's nothing whatsoever about alternative treatments like Chinese herbs or homepathic medicnes. Nothing. He in no way is saying that alternative treaments work, unless exercise is now an alternative treatment. There is no mention of alternative treatments, and those who read what he said as supporting alternative treatments are misreading his statement, and using it as supportive of alternative treatments instead of ABX id distorting his position.
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