posted
I was wondring... our body has a healing mechanism. If get cut, it heals. It's programed to heal.
If we eat right, exercise, support our immune system, and give our body the nutrients it needs.. can't it heal?
Do you believe that your immune system can fight off all the infection on it's own without the use of antibiotics.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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dbpei
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posted
This is a tall order! Many of us have had lyme for years without knowing... and our immune systems were managing to keep us functioning with this bacteria in our bodies until something happened to disrupt that 'homeostasis'.
Our immune systems need lots of help and alone can not combat the damage that lyme disease does, once it has spread to various organs, tissues and the nervous system. There are a few rare cases of people getting well without antibiotics. One I know of is Katina Makris, who wrote the book, Out of the Woods.
I agree that the ABX can do more damage than good for some. Possibly myself included. (may have caused me to lose more hearing and worsened my tinnitus) I tried oral ABX for one year and my most troublesome symptoms did not improve.
I am also now on herbal antibiotics (samento and banderol) with several nutritional supplements - hoping to make more progress. Feeling better now than I did while on ABX but still do not know if this is the answer.
I am also addressing heavy metals, parasite treatment and other things that might be linked to ABX not able to rid me of this illness.
I wish you well and hope some others will post about their progress with and without ABX.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Lyme is tricky and changes to fool our immune system.
I got much sicker when under significant stress which I feel overwhelmed my immune system and I got much sicker.
Posts: 120 | From MA | Registered: May 2010
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Catgirl
Frequent Contributor (5K+ posts)
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posted
Ditto everything dbpei said.
I've been off abx for almost a year (with the exception of a few rounds of an abx that hits parasites). My doc told me that we want to get my body to the point where it starts managing lyme on its own (improving the immune system). So I've been supplementing broad spectrum, working on heavy metals, parasites and exercise.
All of these things have helped me. But shortly after I began treating parasites, something just clicked in me, and I started to feel better. I still have more to do, but I can tell that my body has finally gotten a foothold to fight on its own.
If you can, go after parasites. I believe they are the cornerstone to this disease.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
My personal opinion is that it depends a lot on how many and which coinfections you have.
You may not be aware that my husband died on October 9, 2012. So far the only cause found has been multiple blood borne parasites similar to babesia and some unknown (at this point) bacteria. That test is still pending.
Steve was sick for 12 years. He went undiagnosed for almost 3 years. Then treated monotherapy -- one antibiotic at a time for about 6 years. During that time he took several antibiotic breaks and tried numerous herbal protocols. He never really improved and some symptoms got much worse.
His big break came when he tried treating babesia and bartonella and lyme all at the same time with multiple antibiotics and herbs together. It took him 8 months to ramp up to what that doc considered therapeutic doses. Then we switched to other docs and increased his meds even more.
He did have 2 months med free in the spring of 2012 after 3 years of continuous antibiotics. Then he got 2 more tick bites and could never get him neuro symotoms back under control.
So I would say not to underestimate the severity of tickborne pathogens and not to be afraid of antibiotics. Every med has side effects but in many cases those side effects can be mitigated with nutritional supplements or detox.
If you are not improving or new symptoms are showing up then something is being missed -- either an unidentified pathogen or some nutritional deficiency is often the cause.
The longer a person has been sick the more likely that multiple pathogens are present and also multiple nutritional deficiencies.
Bea Seibert
I should add that I feel the hospital is directly responsible for Steve's death because they denied him treatment for babesia for 3 weeks. His chance of recovering from the ARDS (lung failure) was about 50 percent if he had received treatment for the cause which was the babesia like blood borne parasite.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Very few people beat cancer with just a change in diet. I know lyme is not the same as cancer, but it can be just as deadly.
I would also like to add that the hospital docs tried to convince me that hubby was sick because his immune system was compromised. They could not really prove that because they didn't do enough testing. But the reality was that his CD57 had increased although still not back to normal while he was on the strongest med protocol.
I am not saying everyone needs to be on antibiotics or antimalarials or antiparasitic meds.
But in my opinion it takes very very very strong herbal doses if you do not use prescription meds. And diet and nutritional supplements alone will not work for most people. You need some sort of killing agent as well.
Bea Seibert
By strong doses I am referring to doses comparable to the Buhner protocol or even double or triple those doses in some cases.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I say "no" - the immune system cannot get rid of lyme on its own, in you mean just go on like normal with no Rx and no supplements at all.
At least not for those who have had it a while only for the lucky few who seem to shake it early on. But the strain can make a huge difference there, as well as the other infections along for the ride.
The "beauty" - the "genius" - of borrelia is that it has a very stealth like way to evade the immune system. This goes beyond the various forms it can "morph" back and forth between.
Within hours of a bit from an infected tick, borellia can invade nerve fibers throughout the body. This is one stealth invader, make no mistake.
It also "flips" an immune system, especially after a long time of the dear body KNOWING something is there but just not finding it. That exhausts and has one part of the immune system on overdrive and one part just worn out.
This is why immune support, specifially geared toward lyme is so important. Support, though, not just general "boosting" if that revs or pushes.
But, in addition to immune support, DIRECTLY targeting Borellia in all its forms is vital. Somehow. There are various ways to do that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Can we get rid of it? Probably not. Can the body put it into a latent form? Probably yes.
I probably had lyme close to 40 years before being dx. Fair to say for those 40 years it was in a latent form.....for the most part.
It exploded in a bad way in 2009. Naturally I had no clue what was going on, and neither did any MDs. I was in very bad shape and out of the blue one day in early July of 2010 I felt back to normal.
My appetite was back, my mind was clear, I could exercise again, I put some weight back on. I did absolutely nothing and took nothing to bring this remission on, because at this point I still had no clue what was going on with me.
By the end of September things started slowly unraveling again. I almost think it was the exercise that put stress on me. I was back to running...only 5 miles instead of 8-10, and back doing the elliptical for an hour at a time. I remember feeling "something" after running or hitting the gym. I think in retrospect I was asking too much from my body.
What I always find interesting about this disease is how different everyone responds to tx. There are no hard and fast rules here.
Posts: 478 | From Third Coast | Registered: Feb 2011
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quote:Originally posted by luvema: I was wondring... our body has a healing mechanism. If get cut, it heals. It's programed to heal.
If we eat right, exercise, support our immune system, and give our body the nutrients it needs.. can't it heal?
Do you believe that your immune system can fight off all the infection on it's own without the use of antibiotics.
This is the kind of philosophy I eventually took. Check out Dr. J, KS on Facebook (PM me if you need his full name). He has a several day series on healing Lyme that is very good.
Just like your body might need your help in cleaning the wound and keeping it clean, your body might need help to heal (if it didn't, would you have gotten sick to begin with?). And to make it more complicated, every person is going to need a different combination of things to help.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by koo: Can we get rid of it? Probably not. Can the body put it into a latent form? Probably yes.
This is really what we're looking to do. It would be impossible to get rid of every single bacteria. Most of us have latent chicken pox and latent strep.
Killing every bacteria isn't the idea. I am sure I still have Lyme bacteria in my body, but it's no more harmful to me now that the chicken pox or strep I also know is there.
In much the same way I try to stay healthy by exercising, eating right, sleeping adqeuately, and balancing work/play/rest in order to avoid the flu, I feel those same things avoid shingles (chicken pox) and strep from coming out .... and Lyme Disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you have symptoms from your tickbite without any treatment, then your immune system did not take care of it. There are probably a number of people unknowingly bitten by ticks who have lyme and it is being held down by their immune systems, so they will never even know they had it, because they have no symptoms.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
My personal,unscientific opinion is that a lot of people are exposed to Lyme, but only some get sick. I watch countless folks in shorts on bikes going into the woods near my house, and yet my family, who stay on blacktop all the time, has 3 members who have been sick with Lyme (two chronic).
Lyme lies dormant, we know that. So the immune system can keep it in check for many. But I actually do think some people's immune responses actually eliminate the first bacterial invaders.
I read an interesting thing about strep that made me think of Lyme. When we have strep throat, every single one of us gets antibiotics,as a preacaution. But it is only a small number of genetically predisposed people who actually get rheumatic fever: most fight off strep very well. Those few need to be on antibiotics preventatively for the rest of their lives.
TB, HIV, shingles, herpes, and many other pathogens also lie dormant and cause problems when we are run down or upset.
Some of us, especially those with the HLA-DR4 genetic allele, are genetically predisposed to "intractable" Lyme. This genetic marker is related to autoimmunity. In our family, we have very high antinuclear antibodies that I feel were triggered by Lyme. (And possible aggravated by tetracyclines)
I don't think antibiotics are the answer for those of us who don't fight the infection off with the first round of meds or who missed our chance. I think antibiotics can do some good, for a year or so, but after that, we need to pursue other avenues.
The toxicity of the meds might be worth it if they worked. Autoimmunity is not helped at all by antibiotics.
So, all of this is still a mystery and we need more funding for research. That's the main thing. I think Lyme is eliminated or contained by the majority, and there is not enough knowledge as yet to figure out what exactly is happening to the rest of us.
Posts: 108 | From US | Registered: Apr 2012
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poppy
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posted
I do not agree that antibiotics are only useful for a short time. Some people need to keep taking them to remain functional. Without meds, they go downhill. I would say that is a pretty clear indication that they do work.
And autoimmunity in chronic lyme is infection-driven. So, if one holds down the lyme, it may also have a positive effect on autoimmune markers. Doctors have found that these autoimmune markers disappear with successful treatment. That tells you something right there.
However, pug, if you do not wish to take meds, that is your right. It is not the correct choice for everyone.
Posts: 2888 | From USA | Registered: Mar 2004
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-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
I see that you are referring to Dr. J's facebook post. I lived very clean prior to getting Lyme. So in my opinion I would say no. If that were the case I wouldn't have gotten sick.
I also had mold in my house and I have the genes that don't clear Mold or Lyme well. I believe it was the mold that first got me sick.
I also tested positive on all of the tests for the three B's which means that my body produces antibodies to the pathogens. I think that ultimately once the load is down your body is capable of keeping you well.
Antibiotics are one way of getting the load down, for me that is what I needed. I think I was too sick for herbals to help me. I actually used the Buhner protocol for 1 year along with abx and was still sick.
I had a very bad Bartonella infection, probably worse than Lyme. I think a big part of my getting to where I am now are high dose multiple abx. Another part was using (CSM) Cholestrymine. Because of my detoxing issues. And of course getting rid of the mold.
These infections cause a lot of damage to our immune systems and I think that damage needs to be repaired to stay well after abx.
He could be right, but he could be wrong too. I'm sticking with Dr. B's ideas myself.
Ultimately one would need to figure out why one got sick in the first place.
Posts: 845 | From Northeast | Registered: May 2011
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dbpei
Frequent Contributor (1K+ posts)
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posted
RC1, I just started the cholestyramine yesterday. Hoping it will help me rid my body of these toxins. Apparently, my blood work shows that my immune system is now very strong , but one of the testers to show how well my body is detoxing was off the charts high. (TGF beta 1).
How long did it take for the CSM to make help you feel better?
Posts: 2386 | From New England | Registered: Aug 2011
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Tammy N.
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posted
luvema - I use to believe that it was not possible to get rid of Lyme and co-infections without long-term hard-core treatments. Now I think otherwise. But I do think there is one absolutely necessary step in order to get better -- I think you MUST treat for parasites. I do not think it is possible to get over Lyme and cos without treating for parasites. I tried for 20 years.
Parasites are simple to treat....and inexpensive. Anti-parasitic herbs and salt/c. You just start with 1/4 tsp each of the sea salt and powdered vitamin c, and ramp up from there. The key is you must treat LONG TERM. This can take years. Then lifelong maintenance is required. I don't mind because it works!
Treating parasites has changed my life. I am about 7 months into it and doing great.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Lymedin2010
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Member # 34322
posted
My sister got rid of it on her own and without ABX. She was very ill with symptoms such as; blurry vision, all of a sudden vision turns all white, tremors, hands/arms fall asleep, nausea & vomiting
Swelling of the joints, skin depressions on her wrist (lyme tendon damage), headaches, & I am sure others that I cannot remember now.
She was bed ridden and ill for 3-4 months. She researched and discovered it was Lyme on her own & had removed a tick off herself months before.
She was not able to get ABX since tests were negative, so she ate only organic foods & farm raised animals. She ate garlic cloves & wheat grass. She had a positive attitude and somehow pulled through.
Once she got better & within a week after she finally got a doc to give her 1 month of Doxy. She took the Doxy & said she developed ear ringing, but that was it.
This was in 1995-1996 & to this day she walks around just fine & her only symptom is occassional twitching.
I am sure she still has it in her, but her immune system has learned to battle and manage it. She even started exercising and weightlifting recently in order to boost her immune sys & prevent complications down the road.
I still don't get it & don't know how she pulled through it, especially the way it hit me so hard. There are others on here who eat nothing but the best, yet still remain sick. Go figure!
I also have 2 others across the street from me who got sick and both took only 6 weeks to 2 months of ABX & their bodies are keeping things at bay.
One of them just got sick again for 2-3 weeks & got well again on a round of ABX for her "mysterious illness." She or her doctor did not think it was Lyme related. I could see the sickly look on her from time to time, but she just doesn't get it.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Db, it took a few months before I noticed a difference because I only take one dose a day. There just isn't enough time in the day between abx, supplements and probiotics.
The difference was huge, the veil of haze in my brain lifted, and the all over body pain just suddenly vanished. It would start to stay longer and longer as time went on.
Posts: 845 | From Northeast | Registered: May 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am only taking CSM once a day too - as it seems impossible to do more frequently with my other meds/supplements. Glad to hear that it helped you, RC1.
Posts: 2386 | From New England | Registered: Aug 2011
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nefferdun
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Member # 20157
posted
I don't believe any of us would be on this forum if our immune systems could handle lyme all on it's own. If that was the case we never would have had symptoms.
If the doctor diagnosed you with sphyllis you would not hesitate to use antibiotics. Borellia is the closest cousin to sphyllis and affects your body and mind in a very similar way. If you had malaria you would take an antimalarial drug to try to cure that. Babesia can be even worse than malaria.
If you have multiple infections you need all the help you can get to recover and stay in remission.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I think there are at least 3 factors at play in those who recover quickly from lyme disease.
First, is early treatment -- makes a huge difference. Second is the number of infections involved. Third may be the specific strain a person is infected with -- very few tests for different strains -- may be why some of the sickest patients actually test negative.
I have always thought that those who get the rash may actually have a different strain than those who don't or it could be that their immune system is actually reacting to the lyme pathogen. Would love to see some studies on this.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
What about the people who are not on this forum, who probably form a majority?
Poppy, I took antibiotics for 6 years and wish I had stopped after about 18 months. I made no further progress on them. The worsening of symptoms that happened each time I tried to stop, turned out to be a withdrawal syndrome. After a few weeks off, the withdrawal syndrome eased and I felt better off than on. I write this in case anyone else is staying on simply because they cannot get off.
At the same time, I mentioned the parallel with strep and that those genetically predisposed to rheumatic fever from strep, or who got rheumatic fever, needed to be on antibiotics for life, and that Lyme could be similar for some.
In my family, it is clear that Lyme triggered autoimmune illness. My ANA tests only got worse over the years of antibiotics. They have been very high. I don't think science has resolved the question yet, as to whether or not infection persists, causing the autoimmune illness, or whether the infection triggered autoimmunity which continues even when the infection is completely gone (or under control).
Posts: 108 | From US | Registered: Apr 2012
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Catgirl
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posted
Some good points Pug. It shows we are all different.
Btw, not to get off topic, but have you checked into mold for your sun reactions? I know someone who could barely walk in the sun. It actually disabled her. Long story short, her issue was mold. She got rid of the mold, and she's so much better.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Haley
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Member # 22008
posted
I agree with the post above of Bea. Those 3 factors are very important. To me, it seems, that each person with this illness has a different illness. We do not know what types of pathogens were in each of these ticks, hence the new term MCIDS (multiple chronic infectious disease syndrome) Hope I got that right.
My immune system always worked fine until I was bitten. I became violently ill and did not have any signs of reprieve until diagnosis and treatment.
I now have treated about 3 years (antiparasitics included). I do believe that the immune system is a fascinating and intricately designed system that can help us to get well.
I believe this is one area of my life that I can control and that I have the power to change. I will not yet say that keeping the immune system strong is our only hope, but I have to try to see if it is. If we do not treat our bodies with respect and do everything we can to boost our immune system, we have not tried everything.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Just want to mention that strengthening the immune system is harmful for those with autoimmune problems from Lyme or from any other cause. The meds we take (including Plaquenil) suppress the immune system. Any boost to the immune system boosts the body's attack on itself. Quite a dilemma.
Allergies also result from the immune system misbehaving and overreacting.
So the answer to building a better immune response to deal with infections is very complicated.
(And despite our Lyme history, my daughter and I sometimes get huge relief from steroids, which sure was a big surprise. This includes steroids to treat major illness after sun exposure.)
Posts: 108 | From US | Registered: Apr 2012
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, but one of the testers to show how well my body is detoxing was off the charts high. (TGF beta 1).
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