posted
Is anyone out there truly "free" of Lyme? Can it be cured? Are you always going to be on meds?
I have been on oral antibiotics, IV antibiotics (where I felt amazing), and now back on orals (and am going back downhill.) The doctors think I will have to be put back on IV....is this up and down going to be for the rest of my life?
Posts: 14 | From Green Bay, WI | Registered: Mar 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I am free of lyme. I completed my lyme treatment 4 1/2 years ago and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I don't do anything to maintain the cure. (No supplements, no rife, no anything.) I am cured.
I had lyme, babesiosis, and bartonella. I had them for about 10 years undiagnosed.
The doc is the key to getting rid of this disease. I can't stress that enough. It takes a lot of expertise based on a lot of experience.
The doc that cured me follows the Burrascano protocol. This protocol has also gotten rid of lyme in a number of my friends and acquaintances, so I swear by the Burrascano protocol.
His protocol and info on lyme disease are found here:
My doc told me I would NEVER get well if I did not do the Burrascano type exercise program. It evidently strengthens the immune system. You need this so that the body can eventually fight off the lyme and keep you from relapsing once you have stopped treatment.
It was really tough for me to do the 1 hour exercise program (it is basically weightlifting) since my main symptom was extreme muscle weakenss. But, I persevered.
Other docs who follow Burrascano tell their patients the same thing.
Why not read through the Burrascano Guidelines and mark each thing he says to do either "I am doing this" or "I am not." Then, do all the ones you can do on your own, and discuss with your doctor the ones that are within his power to do. That would include things such as:
combinations of antibiotics (not one antibiotic at a time) very high doses of antibiotics (bactericidal doses as per Dr. B) meds that can attack the cyst form of lyme (such as flagyl)
I advise you to study the Burrascano guidelines to become educated on this complex disease and so that you know what good lyme treatment looks like. I did not regain my health until I did this and then switched to a doc who followed Burrascano.
Before I got smart, I wasted 2 years with a doc who didn't know enough to get me well.
Now, I just hang around LymeNet to point people to the way to get rid of this disease from hell, and to give people hope. I know many people who have gotten rid of this disease. But, they all went to the Burrascano docs I recommend in my area.
There are Burrascano docs all over the country. Just call a lyme doc's office and ask if the doc follows Burrascano. That's how you find out--or you can find out from a lyme support group if someone is a patient of a Burrascano type doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
tf how'd your doc diagnosed you of lyme? through symptoms or testing? at that time tests are not highly reliable?
Posts: 115 | From San Pedro, Laguna, Philippines | Registered: Oct 2009
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posted
Here is my theory how it can be "cured" - all our cells die continuously and replaced by new cells. With abx suppressing the replication of bacteria eventually most (all?) infected cells are replaced by health ones. Hence why such long treatments periods- abx can not kill it , they just suppress it
Also with bacterial load lower your immune systems starts working better in keeping infection in check, so a combination of factors imho necessary for recovery - suppression of bacteria (and detox), stimulating of new cell growth, stimulation of immune system
There been those amazing reports about stem cell therapy curing lyme - I keep thinking that it is probably because it jump started immune system and new, healthy cell proliferation .
Posts: 856 | From MA | Registered: Jul 2009
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Coltman, I have to add diet to your list. I agree with you that replacing sick cells with healthy cells is required in this fight. Well, food is the number 1 way we build healthy cells.
TF, that is wonderful news. I am going to take your advice and mark the list as to what I do v what I don't do.
I have had wonderful success myself in that my rheum. arthritis, which was severe and "explosive" to use my doctor's description and was crippling me fast has now been completely arrested AND some of the visable joint damage is actually repairing itself so I am very happy.
However, as we knocked out bugs, new ones are popping up and I find myself experiencing the original lyme symptoms of migraines and fatigue. Also, one of my root canals has flared up real nasty and they are talking apicoectomy. I am thinking extraction.
Anyone's opinions on this are welcome.
-------------------- 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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Gerard, after 10 years of terrible sickness and going from doctor to doctor, one smart doctor decided my symptoms sounded like lyme disease. So he tested me for lyme and it came back positive.
Then, I began treating with docs who didn't know much. I got their names from lyme support groups.
But, all lyme doctors are not equal. Some are much better than others.
When I switched to the Burrascano doc, he tested me through Igenex for coinfections. Then, I found out I also had babesiosis and bartonella. This was a real surprise since I had almost no symptoms of either of these diseases.
The tests we have now are the same unreliable tests we had then.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I know of several on this board that have recovered and abx free from the Marshall Protocol. Lonestar tick as well as her husband for starters.
There use to be a poster called Semper Fi that last time we had private messaged he and his doc considered himself Lyme free from the MP.
There was another MP poster that the name escapes me but he/she became well and left the site also.
I know many others but just mentioning the ones from this site. Even Dr. C had told me of some success stories years ago. Not to mention my old doc back in the N.W. U.S recovered and returned to full time practice as one of her staff went into recovery.
Problem is that it is not for everyone as many can't tolerate benicar and become worse on it. This happened to a couple of my friends but then again you read on this board of people not being able to tolerate many other lyme treatments.
I have done well on it by adding ambrotose which my doc recommended. BTW ambrotose is useless for lyme unless you are on the MP in my experience, and rife which you can google Brian Rosner and read about the MP and rife.
Once again hard treatment to follow due to avoidance of light but everyone has to try and see what treatment they get the best response from. I wish more people that have recovered would come back and respond to messages like this. I'm just trying to give you some hope of some that I know of.
Posts: 805 | From Utopia | Registered: Feb 2006
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I am lyme free...after treating only my co-infections and then detoxing and taking a summer abx break.
I only took Doxycycline for Ehrlichiosis as far as abx. (1 1/2 years straight) BRiefly (two weeks) took ceftin before feeling toxic and wanted a break. LLMD wanted me on a port after my break.
Was planning on hitting neuro lyme with my LLMD...then after the three month break...my lyme was done! I detoxed with various methods.
My immune system was finally able to work and keep the load down.
From my experience as well as my daughters...both now lyme free...it was getting the load down and killing what could be killed easily.
Then doing natural protocols and clearing the negative effects of the abx...which were candida/yeast that was giving me brain fog.
Also getting rid of my dental mercury made an immediate impact with the brain fog and allowed the candida to get released in visable ways.
Then did some liver cleanses to clear toxins internally, and did a natural"humaworm" cleanse. Got immedate intestinal relief from bloating/gas/and indigestin issues. I'm still cleaning up. Now taking the A.I> therapy.
It is a constant effort to clean the terraine so your body can balance and work efficiently on its own. I believe my immune system kicked the lyme out!
Each will have a different path...many things are said to have worked for those who are lyme free. You need to decide what works for you as far as the treatments you can follow and emotionally believe in.
Some are happy just to have their life back and do not want anything more than abx...others want to get as free as possible. Each has their own tolerance and each has a unique set of underlying problems so comparison is difficult.
I found some people on lymenet that had similar symptoms and mindset that helped me choose my path. What worked for them , worked for me.
posted
TF, How long were you on antibiotics? Were you completely symptom free when you went off of antibiotics?
I am in a similar situation to lightparfait. I went off of abx for a break (still on herbs though) and after a brief backslide its like someone hit a switch and I seem to be better (its been 2 weeks).
I guess the herbs kicked in. I have an upcoming doctor appt. and don't even know if I need to go at this point.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
I am free of Lyme and symptom-free, so yes, it can be done!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I was making so much progress in just 3 months. But after my visit to my LLMD yesterday I became so discouraged by everything thy learned at the convention 2 weeks ago. BIOFILMS are whats keeping us sick.
And they have no answer for this.
But I'm definitely with TF. Get your immune system back and start living life again.
I don't want to go on the MP because I don't want to sacrifice 3-5 yrs of my life with no sun, longsleeves, ridiculous glases, and the rollercoaster ride of Benicar.
i've looked into it... but the more I hear from people like TF and sixgoofy the more I think I'm on the right path with Dr. B's.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Last year my husband's sinus surgeon said the new thing they were looking at for resistant sinus infections was biofilm.
Evidently, the buggers where hiding there and the abx couldn't get them. So it sounds now like maybe it's the same thing with the Lyme. Interesting new info Canefan!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To unsure, I was on an inadequate protocol (amoxi and probinecid) for 2 years, then on a Burrascano protocol for 1 year for a total of 3 years on meds before getting cured.
I was completely symptom free and went at least 3 1/2 months more on meds before stopping them.
Burrascano requires a chronic lyme patient to continue with treatment 2 months after becoming symptom free.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Haley
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Member # 22008
posted
TF,
I'm sure you must get a million questions.
What were your worst symptoms?
Did you have any nuerological symptoms -brain stuff?
Posts: 2232 | From USA | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Worst symptoms were extreme muscle weakness which kept me from being able to stand more than 2 minutes, walk more than a block, hold the phone for more than 1 minute, etc. I couldn't even hold my mouth open to have my teeth cleaned. I dreaded having to rise up from a chair or step up a curb.
The continual fatigue was horrific. Also, I could not sleep.
Other unbearable symptoms were trigeminal neuralgia, months of severe burning pain in jaw (led to unnecessary root canals, etc. to try to get rid of it--I spent months on narcotic pain relievers), episodes of extreme abdominal pain that lasted for days, feeling of being stabbed with thousands of pins and needles, etc.
All of these symptoms are neurological in origin, including the extreme muscle weakness.
In addition, memory was affected, had word finding problems, and episodes of derealization, just to name a few. On occasion, made odd mistakes like salting my tea instead of my eggs, putting plates in the refrigerator, etc. Plenty of stiff necks and headaches.
I had 2 unidentified bright objects (UBOs) show up in a brain scan when I was first diagnosed. Report said lyme disease could not be ruled out.
I had one "major central nervous system event" that started with gaps in the visual field and then became inability to think, talk, and move.
Lasted a few hours.
I had a false menopause that included extreme vaginal atrophy--couldn't wear pants, jeans, pantyhose, or anything that would touch the crotch. I was treated with hormone replacement therapy for years for the "menopause."
I also had facial drooping (bilateral bells palsy) for 3 years. It suddenly went away on its own--prior to lyme diagnosis.
All of my symptoms went away and the menopause reversed. I went back to my normal self with 1 year of Burrascano type treatment. The UBOs are no longer showing up in my brain either.
On the inadequate treatment, I got new symptoms such as the trigeminal neuralgia. I got to ask Dr. Burrascano at a conference how this was possible since I was on high dose antibiotic therapy (amoxi and probinecid). He replied that if the antibiotic treatment is inadequate, the lyme disease can continue to progress.
That's when I decided to switch to a Burrascano doctor. It was the best decision I ever made.
The patient has to do EVERYTHING Burrascano says to do. His 1 hour weight-lifting program every other day is a MUST. Antibiotics alone do NOT get you well. You have to do everything possible to strengthen your immune system.
That means no smoking, no alcohol, eating raw garlic twice per day, and the exercise program.
Also detoxing using lemons and plenty of water.
Here is what Burrascano says he believes the weight lifting is doing for the body:
LYME DISEASE REHABILITATION Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive. Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective. Regular exercise-related movements can help mobilize lymph and enhance circulation. In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed. The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep. The trick is to time the exercise days to take advantage of these rebounds. For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts. However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row. Finally, an in intermittent exercise program, properly executed, may help to reset the HPA axis more towards normal. (p. 31)
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Tosho, I PMed you as requested.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks so much for all of the responses! I will definitely keep my hopes up and keep up with the treatments :-)
Posts: 14 | From Green Bay, WI | Registered: Mar 2009
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(Edited: TF, no need to PM with your treatment details. I have info from you from an earlier PM, was just buried in all my other info--And my daughter's protocol is right in line. Thanks!)
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Daughter and I are also lyme treatment free, lyme symptom free, in our month 6 without any treatment whatsoever for lyme. If we reach one year, it will a first to us. I always relapsed before month 5.
We're still dealing with some short lived candidal issues from times to times, still going on heavy metal detox (probably causing the candida issues), on saliva treatments, but nothing really linked to lyme.
We're living in a country with much less ticks than we were, so hopefully, no more tick bites for a while (my daughter was still bitten about 3 times this year before we moved).
Posts: 6199 | From Brussels | Registered: Oct 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Able to read some of the posts here. Very positive and encouraging.
Good luck to you.
I too have seen people get better and regain their life after years of gone undx.
Coming back to read the rest of the post when I am able.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
TF
ANy comments or details on how to time Exercise with treatment. I read the details above about how to work up and why and about resting time etc.
But.. to take advantage of that cycle is there any considerations around when to take your abx and or treatment that would give most benefit and or give least amount of herx and negative issues.
Assuming pulsing of some abx is appropriate.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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quote: Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
This is very interesting. I didn't put this together before.
Babesia lowers the amount of O2 in your blood by deactivating RBCs. You are essentially anemic. This is why babs is fatiguing.
In that case, there is less 02 in the tissues and the lyme can flourish.
By the same token aerobic activity increases the O2 carrying capacity of the tissues. Aerobic exercise creates new capillaries to improve the 02 transport to the muscles for the energy source.
Therefore I see a contradiction. Aerobic conditioning will absolutely improve the 02 delivery to the muscles, and therefore create a hostile environment for lyme spirochetes.
However, it will decrease the immune system's ability to fight at the same time.
Since Dr B is speculating, I wonder how he reconciles these 2 issues? Why does he think that one is more important than the other?
(I suppose the severity of the infection is a major factor).
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
It is also interesting that I've had lyme for 26 years. Of that my weight lifting/strength training routine has always been about 1 hour every other day (mostly).
That is purely coincidental. That was just my routine, I am just now realizing that this in in Dr B's guidelines.
I have always speculated that my exercise routine is what kept the lyme from getting worse. (However, I have always done much running too. Especially when I started do very long distances in '97).
Of course, maybe my strain of lyme wasn't one of the really bad ones.
Soooooo, many different factors!
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
James - along with your thoughts on the oxygen... Since oxygen can kill lyme there are many lyme patients that I have heard of who have done hyperbaric oxygen therapy. I haven't tried it myself but I have heard some good things about. Sounds like it should help based on this idea.
Pam :-)
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
I suppose you could say I am cured. I am now completely out of treatment after maintaining at the same level without antibiotics for many months.
My only problem: I was sick and untreated for 27 years, and all that time, my Lyme was being complicated by Ehlers-Danlos Syndrome. So I sustained global joint damage--and I ain't gettin' any younger. So I still have joint pain.
I was SO hoping that the joint pain was wholly due to Lyme, but evidently not. You could say that without the Lyme I wouldn't be nearly so bad off--but without Lyme, I'm still bad off.
I noticed that TF's description of symptoms didn't include massive destruction of the soft connective tissues. I guess that's my own privilege, as one who is "blessed" with EDS, a congenital condition.
I'm gradually getting stronger, though, just by being more and more active in a natural way. I have decided that I am now strong enough to begin working out in a gym and will begin tomorrow.
I do need to tell you this: all other symptoms are gone. All mental, sensory, and physical symptoms: GONE. I couldn't be happier.
Okay. I could be. Posts: 13 | From Santa Fe, NM | Registered: Aug 2007
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