posted
I really would love to hear from those who have successfully beat lyme....i know of one personally who is now symptom free...we need to hear from those who have lyme under control and how they got there.
Positive stories only please..........
lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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posted
I had a horrible case of Lyme disease, and though I'm not completely fee of symptoms, I'm getting close.
This past month, durring the time that my herxes were over, I've been symptom free. Most importantly, through trial and error, I found the pattern in my illness.
I had Lyme for a minimum 4 years, but as I think about things, I was probally born with Lyme Disease. So, that makes 24 years with Lyme Disease. My mother and father both have Lyme Disease.
For me, I found that several antibiotics worked. I knew that for a fact because I readily saw cause and effect. What I didn't understand was why some antibiotics seemed to stop working after a while.
Most confoundingly, I found that I responded very well to IV Primaxin, IV Zithromax, IV Rocephin, and IV Levaquin, for some reason IV Clindamyacin made me ill, but the point is that I had cause and effect for all those medications.
I also responded to oral Doxycyline.
I just didn't understand why they stopped working in about a week.
Co-infections!
I don't know why this works, or how these things occur in the body, BUT, when I use IV Zithromax, 200mg Plaquenil, 500mg Tindamax, 1 pill Bactrim, 2 Malarone pills 250mg each, and 1 teaspsoon Mepron, and then I use 750IV Levaquin for four days (by the way it makes me herx like hell), then I follow that with 5 or 6 days of Rocephin at 2 grams per day, I am very very very close to Symptom free.
I just continue Rocephin until I feel like its loosing a bit of effectiveness, and when it does, I just go back on the Zith, Lev combo for 3, 4 days.
Each cycle of this gets me extremely close to Remission. Each cycle works. The downside is the horrendous herx I get from that Lev and Zith combo, but believe me, for me IT WORKS WONDERS.
Thats all I can really say about this disease.
Other than this cycle, I eat VERY healthy. I only take 3 supplements, 1 multivitamin, 1 antioxidant, and probiotics.
This formula works for me, so I know it can't speak for everyone, but what I can say about this disease is that the most important thing is for you to find some kind of pattern. You have to be able to chart antibiotics that you know have positive cause and effect patterns for your Lyme. Like me, several different meds may work for you, and if this is true, discuss your reasearch with your LLMD, and maybe you can find a cycle that works as well for you as mine does for me.
Good luck, keep faith, and keep praying for the streagnth to continue fighting!
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
awesome...thanks for the replies...i think it is as important to hear the good things as well as all the other crap...keep em comming
Posts: 120 | From NB Canada | Registered: Jan 2006
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posted
Great storys LymeToo and Science...You guys are real Troopers! I agree Lesley...Positive attitude and Lets Get-It-Done!!! Alan
-------------------- Charter member of the ~ Delux Toasting Club ~ Our Moto: "Take No Prisoners" Posts: 95 | From San Diego | Registered: Nov 2005
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liz28
Unregistered
posted
I've been symptom-free for about a month. I was disabled for four years, spent another year treating bartonella and using a ketek/omnicef/flagyl combination on Lyme, and then used a malaria drug combination of chloroquine/primaquine on babesia (this combination must be taken with medical supervision and well-educated knowledge of proper dosages, as most malaria drugs have a low overdose threshold and serious side effects). If this had not worked, I'd have done what Lymetoo did, which is to use quinine.
A dear friend on Lymenet also saw rapid improvement with Valtrex, and there are many allergic conditions such as celiac disease that can mimic Lyme. Also, you may want to check for thyroid problems, vitamin deficiencies, or my personal most-embarrassing-of-all-time mistakes, properly cleaning your house. I just found out that mold--yes, mold, the stupid little fuzzy thing that most people learn about in kindergarten--has been causing many mysterious chronic symptoms.
Dr. B's 2005 treatment guidelines are an excellent foundation for dealing with this disease. Even if you substitute in different antibiotics (like I had to use rifampin instead of levaquin for bartonella), the foundation has proved itself many times over, and the supplement section has great suggestions.
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posted
Liz28, that is great news! congratulations! I remember your posts from a while ago, when you were just starting to treat co-infections...such a great success story!!!!!!!!!!!!!!!!!!!
Posts: 121 | From CT | Registered: Oct 2003
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I have been in remission for about 3 1/2 years. I have had nearly 90% of my symptoms abait, and I had a whole truck load of symptoms. I was infected at about 12, so it has been about 38 years. I have been extremely sick and looked it to boot. Kind of like an anorexic with cancer after chemo. Now I look not to bad for almost 50.
I still do use ABX a couple of times a years still trying to wipe out a couple of other sort of annoying problems, like dry eyes, tinnitis and a heart rate of about 90. I still herx significantly, but as I go, pain eventually stops in one place and starts in a new one. I think that is just the ABX reaching into other hidden areas. Like a couople of months ago, while on ABX, I ended up with chostocondroitis (sp)which has since stopped. Never had that before, although I do or should I say did have scoliosis, which seems to have also gone away! I don't know what's up with that, didn't know scoliosis could straighten out. Neither did my chiro.
Other then those irritations, I am pain and fatigue free when off of ABX. I am able to live a very full and active life. More physical activity at almost 50 then when I was probably 26. Not bad!!
My approach has not been at all like the majority of Lyme specialists recommend. I have been trying to understand what worked for me, and why.
First off I was given Elavil which gave me a deep, healing sleep which I was not able to do on my own. That alone changed things in a huge way for me. I was given a life that I had not seen in years. Nevertheless there was still a noticable downward progression of symptoms. It was clear I had not gotten to the cause.
Then I was treated with heparin for about 4 years for hypercoagulation. About a year into the heparin, I started taking first Doxy and then Mino for 2 Mycoplasma infections. The herxing was severe and I ended up in the ER due to my first 8 days of Doxy.
Since herxing is so severe I have had a really tough time staying on ABX. I've gotten kind of spoiled, having felt so much better on the Elavil. Even though I knew I was getting worse, it was really hard to take ABX when I knew it was really going to trash me.
The result is that I have used ABX, very little, and I mean very little, in micro doses while pulsing only. I am still only up to about 12 mgs of Mino at this time. This is my highest dose since attempting 25 mgs, about 4 years ago.
The result has been nothing short of amazing for me though. I have not been on heparin for about 2 years now. I recently stopped the Elavil and sleep really good all by myself. I am starting to back off of my beta blocker which was to reduce my heart rate, so we'll see what happens there. That will leave me with just the dab of Cortef, and the 5 mgs. of Norvasc for vascular spasms I take at night. That's it.
So overcoming this does seem to be possible, even if you have been sick for a long time. Our paths are not all the same, that seems blatantly obvious, so don't get discouraged. If you hit a wall, just try something else. I have tried just about everything. I would have eaten rocks if there was a chance I would get better. Thankfully, I never had to try that. (Did you ever try to catch this little guy to put him here?)
Posts: 1251 | From california | Registered: Apr 2005
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posted
After 4 years sick, I have been six months now in treatment.
Although I wrestle constantly with my protochol, it is very simple. Biaxin twice a day, probiotic, no vitamins (they make me sick).
I was severly ill from november to March 06. (Abx began in Jan 06) I went from three months of being completely bedridden, neuropathic pain, severe depression, crushing headache/jawpain, joint pain...to a couple months in and out of bed with unpredictable levels of pain,
To now when I am only in bed at night and I just traveled for the first time. I have found that I deteriorate at exactly 28 day intervals that last about a week. At my last flare, I only used advil a couple times and functioned normally otherwise.
I would say I have many days that are normal and I can do almost anything but slower.
Sometimes people say "Oh you could't have it that bad since you didn't get an IV...Well, at my sickest I thinkand IV may have dilled me with herxing...I opted to go the slow and steady route after reading all the studies and talking to lots of docs.
Besides abx, I believe I got well because of three things:
1. The support of lymenet friends
2. Reading Amy Tan and Alice Walkers recovery stories.
3. Drawing a line in the sand around my recovery with people...I became militantly on my own side and demanded the quiet, stress-free space I needed to get well. (Otherwise peoples needs and demands wouldve kept me sick.)
The last thing I plan to do forever as I refuse to relapse if it is in my power.
Best to you
-------------------- We are spiritual beings on a human journey...
posted
I don't think I'm completely there yet but I'm much, much better than I was last Christmas.
I only took about 6 months of antibiotics and began to feel so toxic that I quite.
My husband built me a Rife machine and I've been Rifing for lyme, CMV, EBV and C. Pneumonia. I also use the headache and relaxation frequencies which help with herxing.
I've not been using the Rife machine long enough yet to tell a difference in the lyme load (about 4 or 5 months) but I sure do herx on it so I know its working.
We also bought a steam tent along with an oxygen generator with ozone pumped into the tent. I use it almost every night.
The last thing I use which has made me feel the best is the Mangosteen Juice. It has lessened the herxing and given me energy but the best thing it has done so far is help me sleep. I'm completely off my Xyrem sleep meds. I've been on the juice since May of this year.
So I'm feeling energetic once again and actually feel like working in my garden and working on projects (we just went to Home Depot to redo our bathroom walls).
I would never have been able to do that last Christmas. I don't believe I'm well yet but am much closer to seeing that light at the end of the tunnel.
posted
In regards to returning to health, when I refer to being healthy when the herxes abate, I'm not referring to being able to live a somewhat normal life, I'm referring to being COMPLETELY without symptoms, ie:as if I had never contracted Lyme Diease, ever.
So, I think its important for us to make that kind of distinction between people who are able to somewhat continue living, and those of us who are physically without any sypmtoms, including those congitive problems that we might not notice because we have chosen to live with them for such a long time.
Now, though this kind of thing seems possible in my case, and I did have chronic Lyme, and I was one of the people who clearly had something wrong, ie:extremely severe Lyme, as opposed to a CFS type of lyme. I had constant seizures, inability to move muscles due to severe muslce weakness, spinal cord infection, and many other SEVERE signs of Lyme disease. As an example, durring the worst of my disease, my IQ was measured at 80. All durring my youth, I was in academically gifted classes, I took the SAT in the seventh grade, so the mental component of my disease was severe. This doesn't take away from others suffering from this disease, I only wish to make a point for those who may be reading the success stories of others who say they have succeded with very little antibiotics that we must all be aware of the differences in severity of Lyme Disease.
I personaly would not have gotten better on those kind of treatments, I tried them. So, if you are one of those with Severe Lyme, please, stick to the antibiotics. I had that kind, and I am very close to remission. However, if you are suffereing from a mild case of chronic lyme, by all means, use the other suggestions offered if that is what you would like to do.
Of course, my preference is with antibiotic therapy, but to each his own. The important thing is remission.
Posts: 559 | From Cary, NC | Registered: May 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Hi Lymescience
I suppose when you said "I only wish to make a point for those who may be reading the success stories of others who say they have succeded with very little antibiotics that we must all be aware of the differences in severity of Lyme Disease." I supose you are talking about me.
Make no mistake I was critically ill, SEVERELY ILL. Looking back in retro spect, I was on deaths door. I looked like death and people were VERY worried about me. Maybe I had a year or two or more. I know getting well the way I did flies in the face of everything we are told, but that doesn't change the fact that I am without symptoms, just like you. I am not talking about just feeling better because the herx has stopped either.
I had plenty of nuero problems, and also had exteme mental deficets. I would have nightmares about dialing phones, because sometimes it would take me 6-7 attempts to dial a phone number correctly. Falling was becoming something I experienced. Legs would just let go. I didn't carry my grandaughter for fear I would drop her or fall while carrying her. I had tremors so bad I had to give up my art work. Nausea, no appetite, I didn't sweat, migraines all day long 6 days a week or more. I had numbness in my arms and legs, with pain to the point I took 16 Advil a day to try and cut the edge.
My heart was way messed up, with ventricular tachycardia which is considered deadly. This was NOT a mild case of Lyme.
Please don't diminsih the degree to which others were sick, thinking they just couldn't have possibly been as sick as you and have gotten better on such a small amount of ABX. I understand your not understanding this, but I don't even really understand it either. That doesn't change the fact that this is my experience.
I don't know if it had anything to do with the 4 years of heparin, the supplements, the eating organic or what, it just happened. I do know that the heparin is the one thing that the majority has not done. I know of numerous others who are also in large states of remission and long term heparin was part of their protocol, so maybe there is something in that. I don't know, and I wish I did. I do know there is a study out of Japan showing that heparin kills Babesia and likely Lyme. But so far that is only one study.
I have been around these message boards for about 4 years, 100's know of my experience. This isn't something I am trying to sell, it is just my experience to gaining nearly full remission. My experience is posted all over the place.
I can paint my bedroom, climb a mountain at 7500 feet that afternoon and babysit my grandchildren that night (ok Maybe a tiny exaggeration, I really could do 2 of those though). There is no way I could have done that at my sickest. I couldn't even go to the grocery store at 11:00 AM, hope and pray I could drive home and then have to take a nap before I could get the stuff out of the car.
I was deathly sick, you'll just have to trust me on this.
Posts: 1251 | From california | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I come from a long line of long lifers. The main things they have in common are eating whole foods (nope, they did not talk organic or sprouted food)but they never liked anything that came in a box or prepackaged. They just didn't think it tasted good.
The second thing they have in common, and just to let you know what I mean by long life, these relatives/ancestors lived to 90+ years and enjoyed remarkably good health. The second thing in common, they saw a doctor very seldom and despised taking medicine.
When they felt/feel sick, they did/do disgusting things like cod liver oil to move their bowels.
My 95 year old great aunt is just now putting her house on the market to move into a retirement home. No folks, that is not a nursing home. She is tired of being alone and wants more company and more free time. She just renewed her driver's license. Her sister (my grandmother) lived to 103. We buried her January 05.
This goes on and on on both sides of my family. My mother is 80 and takes no meds. She has great cholestrol and blood pressure. She just found this out when she went to the doctor for the first time in 10 yrs. Get the picture?
Her sister is 83 and, you got it, in good health.
Heck, I even have an ancestor who was born in 1750 and died in 1845. He lived in the mountains with the ticks and without antibiotics.
I believe antibiotics can kill alot of things including us. I don't believe they are superior to natural medicines which build up our bodies and enhance our own immune systems and have kept people going for thousands of years prior to abx.
America is not the #1 country in healthcare, we are ranked 59th among the industrialized nations.
My generation in my family has far more illness than any of our parents, grandparents, etc and I believe abx can take their share of the credit along with our fastlane eating habits. Add an unprecedented stress level and walla, we are sick!
In the veterinarian world there are many vets who believe we are over-vacinating and over-medicating our animals to the point they are now suffering from exposure to environments they have always been exposed to without ill effect.
I believe the same is true for us. The Lyme Tick wasn't born in the 70's. Why can't our systems fight it off?
BTW, I have been dosed with abx for one infection after another most of my life including 6 mths of abx 10 yrs ago when I first contracted lyme disease. I seemed well after that and for 10 yrs my body kept it at bay until last August when it resurfaced.
Too late for me to hope the abx can kill the acute stage. I'm working with doctors on my immune system and steadily gaining ground. It is my hope to get my system back in order and I will not indulge in America's current lifestyle of SAD diet and high stress again.
Nor will I medicate unless I am in an acute, give-it-to-me-or-I-will-die condition.
I thought I would just enjoy the benefits of my longlife gene pool but I went to far from their habits and way of life. It is not only me either. My sister and all my cousins suffer ailments our parents never have. We are changing our habits and we can only hope we are not too late.
Time will tell.
-------------------- 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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I'm sorry that you had such a horrible time with Lyme Disease, and please understand that my comments were not meant to argue.
I think its wonderful that you are back to health again. In the Lyme Disease community, we must all stick together, and though your protocol differed from my own, and others, I'm just happy that you're doing well.
Your story is important, as it helps shine light on some of the perhaps misunderstood part of Lyme disease.
I think the Heparin helped you alot!
However, my point that I can't undermine is that until we have a lot of stories like yours from those who have severe nueroborrliosis and co-infections, it probally makes sense for most of us to try the "conventional" route first as endorsed by folks such as Dr. B. This includes finding the right medicine that works for your disease, and then finding a cycle that targets all your infections. For some people, this may not sound appealing because this kind of protocol has a focus more on drugs, and one will experience a great deal of herxes, but I think its the treatment of choice.
Right now, the science is very scant on late stage/chronic Lyme. We know that for very early Lyme with the EM rash, approimently 5-15 percent of these people will have culturable borrelia after the standard IDSA regaminies, ie:14 days of antibiotics.
So, that begs the question, if we can't get all the Borrelia in that early of infection, at a site thats relativly very easy to penetrate with antibiotics (the skin), how often does borrelia persist when it has had a chance to infect the central nervous system, heart, joints, ect..
So, until the Marshall protocol, or others similar to it are being endorced by the only people focused on Lyme Disease, such as the prominent LLMD's like Dr. B, both Dr. J's, and others from the ILADS, most, if not all people should stick to that protocol FIRST. THen, if things don't work out, by all means, they should try anything and everthing to help them get better, and this includes treatments like yours, or herbal based treatments that seem to be endorced by others.
So, I want to make it very clear that I'm not dissing your success, or alternative therapies, I'm simply endorcing the ILADS treatment recommendations as the first thing a Lyme patient should try. Only after a significant attempt should one consider alternative therapies, and this is not that they don't work for some, its just that we have very little science to back this up. At least with the ILADS, we have some science, albiet not reams, but some none the less.
luvs2ride,
Its wonderful that your family has such a great longevity! I'm glad you kicked Lyme for a while, and I'm sorry that it has returned to you.
We all appreiciate the wisdom you have to share concerning nutrition and alternative therapies, but I must say that what you are doing seems to be not well thought out.
It may well harm many newbies, and others in distress with Lyme if they hear you speak about antibiotics as if they were some kind of tool created by the devil. While antibiotics are not a wonder cure, the world is a much better place with them here than in the days you seem to wish for, ie:pre antibiotic days.
As a reminder, its not that these diseases didn't happen before antibiotics, and now we have just rampant diseases, its that in earlier times, people never expected to live, so people didn't complain. Syphillis killed a lot of people, so did many, many bacterial infections before the invention of Penicillian. Antibiotics are not some kind of cancer on the world. As our bodies have never evolved to fight the bugs that killed us before antibiotics, there is no evidence that our immune system has evolved in the last hundred years since antibiotics have been introduced that would suggest we no longer need them.
With any medication there are side effects, and antibiotics are no exception. However, I wish you would be more responsible, and think of the others who suffer before you allow your opinions(which I respect) regarding antibiotics to be read by someone who may only make themselves even more sick by turning away from first line therapies, such as those endorced by the ILADS.
Perhaps you could instead share your knowledge of herbs and diet so we may all benifit. I can say that while my antibiotic have worked, then work much better when I eat extremely healthy, mostly organic. Everday, I include a high fiber cerial with soy protein so that my bowels will work to release the toxins in my intestines (assuming dr. S is right about the whole toxin thing), and its simply a good idea to be regular. I also have about a cup of oatmeal per day so that my body has a steady supply of slow burning carbs, I've found that sugar tends to make me feel sick, so I stick to mostly vegtables, fruit with fiber, slow burning carbs, good fats, and protein. I also drink lots of purified water (just in case there is something in my home water), and I make sure to eat at least every three hours so I can maintain even blood suger levels. That has worked for me, luvs2ride, have you any other suggestions regarding diet and Lyme Disease
Posts: 559 | From Cary, NC | Registered: May 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Very well said Lymescience.
I, too do not mean to diss antibiotics. Lord knows I have taken plenty in my lifetime.
It is purely by coincidence that my entire treatment since last August has been under the care of medical professionals - two of whom are lyme literate - that do not believe antibiotics are the answer to this illness.
Their logic settled well in my mind as I have long felt I had ingested far too many antibiotics in the course of my lifetime. I still believe this and feel my doctors' approach of rebuilding my body so it can fight the good fight for me is the best approach.
Having said that, I also like the idea of hit it first with antibiotics to knock down the load and then follow through with other therapies as Dr K endorses. Just not longterm antibiotics unless you can establish real progress. I don't consider sending the bacteria into a dormant state from which it re-emerges as soon as the abx are stopped as progress.
The doctor I am working with now is dealing with my systemic yeast and metals. He is not willing to touch the lyme arena. He doesn't doubt I have it, but he is in NC where Dr J was just lynched. He has tested and confirmed I have high levels of lead and mercury. I have systemic yeast from leaky gut.
He believes when this is cleared up, my pain will be gone and any lyme will be flushed out by my system. Maybe, maybe not. My DHEA was very low, so he is supplementing it at a prescription level.
My liver was stressed and not functioning well though it was well enough for standard bloodtests to miss the problem. He diagnosed it through a high-resolution blood morphology test which is experimental and not covered by insurance. My white blood cells were so sluggish they barely moved and my red blood cells were both clumping and creating chains like a pearl necklace. Both white and black yeast were present in the blood as well as parasites and bacteria. The blood showed significant stress to the liver by a spider vein appearance.
My vitals were suffering from the bacterial, parasitic and metals load on them. They could no longer process so much toxicity hence I became sick.
If I had thrown antibiotics into this mix, I could have been one of the people with liver failure. Certainly my toxic load would have increased an already weakened body.
I like what this doctor is doing. He won't kill or chelate anything until he has my liver functioning properly. He has been giving me IV's of glutathione and liposoril (sp)for this purpose. Also I received the Myers Cocktail twice which is an IV vitamin regimin.
He tested to see which vitamins and minerals I was deficient in before he administered supplements.
Most of my supplements are enzymes, amino acids, vitamin c, chlorella, quercitin, coQ10. I'm not taking quite as many as JimBob, but I did count the pills and it is 43 a day. It takes dicipline to stick to a natural body-building regimin.
I said before and I will say again that changing my diet produced more dramatic results than anything else I have done. The diet that worked for me was vegan. But I don't believe that is the only good diet. I never believed in vegetarianism before I was sick and I have spoken to people with rheumatoid arthritis who have gained complete remission on the Atkins diet. What I think is important is to cut out the sugar altogether while you are sick and eat it sparingly when you are healthy. Sugar suppresses the immune system and feeds bad yeast. Cut out processed foods. Also, many of us who are sick have hidden food allergies that are contributing to our symptoms. Get that tested by a good nutritionist. Most doctors are not trained well enough in nutrition.
Slowly but surely I am getting better. The progress feels like 2 steps forward and 1 step back. When I have bad days now, it is what the good days used to be. When I have good days, they are awesome.
I am regaining my normal life which was incredibly physical before illness.
Lymescience, thanks again for inviting me to speak. I really feel that everyone can only benefit by addressing the sick areas of their body. It is the foundation of our road to health. What good is Ketek if your liver is already weakened from fighting off illness? Remember the body was fighting this bug and/or other things long before you became aware of being sick.
Ketek seems to help many people and I don't think it should be thrown out, but also, it should not be administered until the doctor makes sure your liver can handle it. Does that make sense?
You say my plan is not well thought out but I am following my doctor's plan which I feel is very well thought out. He will not treat until he has found something through testing. I like this.
When the metals are gone and the yeast is out of my bloodstream, if I am still sick, I plan to go back to the LLMD and request we attack this antibiotically. I'm not dissing it, I am reserving it as last resort. At that point, I will know bacteria is all I am battling and my body will be better able to handle the side effects of the drugs.
To be honest though, I don't think that is going to be necessary. I'm hopeful.
I don't believe we can eradicate lyme. I don't believe that none of my long living elders have lyme. They have never been tested, but my gosh, they live in the country. They garden. My 80 year old mother mows her own grass under trees and by a stream. They are not sick. These people are travelers. They have visited foreign countries and been exposed to different bacteria etc.
I think their secret is a strong, healthy body that has not been weakened by too much medical care and this strong system serves them well until they die a natural death. So far none of them have died from illness. Just one day the ticker stops ticking and they are gone. Not a bad way to go.
Lymescience, I know you have some medical training and I do enjoy your posts. I'm glad you are well enough to be working again as I know at one time you were too sick to finish school.
I root for you in your medical studies as you will certainly be an asset in the battle against this illness. Could you please also take the time to learn alternative care? I think the medical doctors trained in both venues are the most well-rounded and effective warriors against all chronic illnesses.
-------------------- 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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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Lymescience, I'm relieved that you don't want to argue. It's just that your comment came on the heels of someone else telling me I was apparently not that sick because I got well on such a low dose of Mino just a few days ago.
Then you said it again and I just I am not in the mood to go there again.
There is a growing # of doctors and patients who are are becoming disillusioned with the massive dose of ABX protocol. There are still way to many who are not getting well or are relapsing shortly after stopping ABX. The damage that can be done by ABX especially in these quantities is enormous.
I'mn not saying that there isn't a place for IVs for example, my word there are quite a few out there who have gotten better with this route. But what about the rest who's bodies just won't allow that extreme or they just plain old don't want to go there?
I know there is nearly no research out there supporting low dose ABX, but there is still that growing # of patients and doctors who are doing it and seeing significant progress.
That is why I posted that topic a few weeks ago about how Mino works. We need research, I think there are a lot of us still waiting to see what you can find or maybe even initiate.
Wouldn't it be great if something like heparin which is naturally occuring in the body and low dose ABX or herbs and good diet were enough to kick this stuff, RATHER then massive IVs? I don't think that there is anyone who wouldn't prefer micro amounts of ABX as opposed to massive ones. It seems that there are enough people out there already trying this that investigation needs to go further.
No arguing, just conversation pleeeeasssse.
Posts: 1251 | From california | Registered: Apr 2005
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posted
I know of only one person who is symptom free....after two years of treatment she has her life back....she just did her PHD on Lyme disease. She was six months being dx then on treatment...this was in 2001...since then she has been "cured".
I am wondering if a lot of the people when they get better stay off of these sites.... I know that if I get better i will try to stay in contact to spread positive stories....
At any rate i know there must be people out there that are better or LLMD would not continue to treat....
lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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posted
Jon, I think the symptom free people have moved on from lymenet....
Her is my two cents...
At my sickest, I wanted to find a doc who could help me. The first one was dr. P (who I think is brilliant) put me on mega doses of oral abx. After two months of this I thought I would kill myself from the pain...
Then I found my new doc-- dr.K who has written scientific articles about lyme, she had severe lyme, and treats many lyme pts in CT also.
After twenty years of treating lyme in ct, she has found that the best protochol is one antibiotic at a time--taken for as long as it takes to get rid of symptoms. (She also tests and will treat coinfections)
If the herx gets too bad, she stops abx for three days or until cytokines clear.
I asked her nurse the big question we all want to know "How many of the lyme patients actually get well?"
She said that they all do.
I have many options available to me...IV, combos or naturopath. We have to do what we feel our bodies will respond best to.
If you think about it, only a small percentage of lyme sufferers ever take abx cause they are not diagnosed correctly.--If they don't progress to an ALS, MS, park, fibro or CFS....then some will clear the infection on their own.
I live in CT, most everybody has been infected but only some go on to horrific illness. I am hopeful because I have met dozens of people who were extremely sick like me but after time (some years) they all get well.
Like cancer, we all have it someplace in our body but only some go on to disease. Some need only one round of chemo...others need massive repeat doses of it...
We must learn about the wisdom of our immune systems, and work with it--not supress it--and keep an open mind to all healing options.
If you want success stories, ask your llmd to connect you with some ex-patients but I think here on lymenet most folks are in their healing process.
-------------------- We are spiritual beings on a human journey...
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
My life had never been particularly difficult. In fact I often felt guilty that others appeared to be struggling so ,while for the most part, I seemed to sail smoothly along. Of course I had my little ups and downs but never really experienced the tragic in life.
About 17 years ago, as I was driving to work one day, I vividly remember a conversation I had with God. Dear God , I said, I am truely grateful for all the good in my life but I feel as if I am spiritually stagnant, not growing, learning and helping others the way I feel I should be. So...if I need an experience to help me evolve and grow, please....just don't make it too difficult to bear. Looking back, I can't believe I was saying this! Little did I know what I was about to experience.
As the year progressed, I gradually began to acquire odd unexplainable symptoms, such as tingling and numbness in various parts of my body, lower back pain, headaches, stiff and painful finger joints and fluctuating anxiety. I remember visiting our general practioner for tingling and numbness in my arms and hands. Without testing of any sort I was handed valium. Of course, the valium did not help.
During this time I was working in the cafeteria where my small children attended school. This worked out well as I had the same schedule as my children. When school let out for the summer that year, we looked forward to our traditional activities....camping and boating. I will never forget the camping trip where my life was changed forever.
One morning I woke up in our camper and felt extremely ill. It seemed as if I had the flu but the symptoms were in some ways atypical. I was very weakened and sick but yet I could not sleep. What was the most unbearable to me however, was the free floating anxiety or panic....for no discernable reason. I would find myself pacing the floor, desperately trying to get away from it. I remember saying to myself that I would not wish this experience on anyone...not even my worst enemy.
In the weeks and months to follow, I would plead with my dear family , who was so supportive and understanding ( even though they couldn't really understand ), to just put me away in a mental institution because I felt as if I was losing my mind and I did not want to be a burden.
I made an appointment with our family doctor and was given three weeks of antibiotics...just to be sure.....in case I had Lyme Disease. This was around 1989. They did not test me for Lyme at this point. I was told that it would be too early to show accurate results. It was assumed that if I did have lyme that it must be from a recent bite. However, I feel the illness had been simmering in my body for quite some time. The treatment did not seem to touch my symptoms at all and in fact, I felt worse. The panic/anxiety became so intense that I was prescribed tranquilizers.
For several months, when I was at my lowest point, I was unable to care for myself or my children so we temporarily moved in with my husband's parents while my husband stayed at our home to continue working. Then the doctor decided that depression must be my problem so he prescribed antidepressants. He informed me that if needed, I could take up to three at a time.
That night I did end up taking three pills because they didn't seem to be working and in fact ended up making the situation worse. I woke up in the early morning in a state of fear and with the thought that I needed help. As I went to the top of the stairs to call for assistance, I fainted and fell down the stairs. My seven year old son called the ambulance which took me to the hospital. At the hospital the doctors performed several tests, including a CAT SCAN of the head. When the doctor found nothing obviously wrong with me, I was asked what I liked to do in my spare time. I told him I enjoyed boating with my husband. His only suggestion, before he sent me home, was to take more rides on the boat with my husband and that this would most likely make me feel better.
When summer came to a close, it was time to return to work at the school. I was barely able to function but wanted to press on for fear that if I gave up and quit that my life would be over. At least this way, I thought I could keep up some sort of normalcy. My coworkers were not very understanding.....to say the least. At times I was so lightheaded and weak that I would immediately have to lie down on the cement floor in the stockroom to get the blood flow back to my head. With me, it wasn't a matter of sleepiness but a simple inability to stay upright for very long. The women I worked with would say to me...."well , we get tired too sometimes you know, but we don't have to lie down!"
Time went by ,as I struggled every day to function, and I was diagnosed with Chronic Fatigue Syndrome. Even though there was no cure, it felt good to have some diagnoses besides depression. I knew something was seriously wrong with me and that it wasn't just "all in my head". Actually, most of it was in my head, but in an organic way...not psychologically. Every couple of weeks a strange new neurological symptom would add itself to the others already in my repertoire.
One of the most difficult parts was that most people just did not understand. How can anyone be so sick for so long while the doctors can't find any concrete cause? I can't blame them really. One has to have had this disease to appreciate the full implications of it's diabolical fluctuating nature. Because I didn't want people to feel that I was lazy or mentally ill, I set out to prove that I was really and truely organically sick. This drive led me to begin researching the vague diagnosis of Chronic Fatigue Syndrome (CFS). I would bring all my research to my doctors, hoping desperately that they would take an interest.
My family doctor was very supportive but all the specialists I was sent to told me to accept my diagnosis, that I was depressed and why was I doing all this researching? The doctors would tell me that diabetics for instance...they accept their disease and get on with their life so why couldn't I do the same. My neurologist told me that I should stop all the researching because I wouldn't want her to get the wrong idea and that other doctors would also get the wrong idea about me. She was insinuating that I was crazy. I went home that day in tears. No one who is sick should have to be treated this way. Many patients with vague diagnoses , such as CFS and Fibromyalgia, often express the idea that they almost wished they had cancer so they would be taken seriously. Some have even expressed the thought that at least with cancer , many die and get it over with.
After 8 years of having "Chronic Fatigue Syndrome", my research led me to Lyme Disease. I noticed the symptoms of CFS and Lyme were extremely similar and decided I wanted to check this out. I made an appointment with a lyme literate doctor and began my still ongoing recovery. I was tested for Lyme Disease by this doctor but the results were negative. However, I was treated anyway based on my history, symptoms and the fact that I lived in a very endemic area.
At first my symptoms became worse, as I was warned. I was told that this was a good sign and meant that the antibiotics were hitting the target. I was on a high dose of oral doxycycline and it took four months before I even began to see any improvement and then finally, little by little, some of my symptoms began to fade away. It was a very slow process with many setbacks and flares....but each month these cycles of flares would be reduced in severity.
I learned that the setbacks and cycles were almost always temporary. I would often tell myself not to worry when an old scary symptom would reappear. Usually in three to four days the particular symptom would disappear and another one would take it's place. Again, in my experience, each month the symptom cycles were less and less severe.
After 4 months of antibiotic treatment, I was retested and was now positive. The explanation I was given for this, which makes sense to me.....is that those who are the sickest, most likely have the heaviest load of the lyme bacteria. Many times all of one's antibodies are tied up to these bacteria in immune complexes. When the bacteria begins to be killed off, this frees up some of the antibodies which can now be measured. So...in other words....it is often those who are the sickest and chronically ill who test negative for Lyme Disease when using antibody testing.
Two years ago I had to switch to another doctor who specialized in Lyme Disease. I was begining to slip backwards because of breaks in treatment. I had never really been on consistent long term treatment. This new doctor had me tested with the Bowen test and I tested positive for Lyme and Babesia. Now that I am finally being treated consistently for the lyme and the first time for Babesia, I feel as though I have my life back.
During those many years in limbo, I felt as if I had lost my connection to God. Lyme Disease had pretty severely affected by brain and nervous system which made it difficult even to think....never mind to experience spiritual feelings. I couldn't understand why I would have to go through a trial or experience which would make it so difficult to feel God's presence.
As my thinking became clearer with treatment, my feelings of spirituality gradually began to reappear. I spent more and more time reading inspirational books. I wasn't trying to be healed nor was I asking or seeking anything else material or specific. I just wanted to feel and be aware of the presence of Spirit or God. I wanted the joy and love and goodness I was recieving from God to flow through me and envelope those around me. As I focused in this way, I felt as if I have emerged from an egg into a new world of excitement, happiness, joy and love. So many wondeful people have crossed paths with me and for this I will be eternally grateful.
Intuition seems to have increased, synchronicity abounds and everyone I come into contact with is trying to serve humanity in their own special way. I have improved a great deal and seem to have aquired new abilities that I had never even dreamed of. It's like watching a play unfold....a good play. I now feel as if I have a purpose in life. The thought of growing older and losing vitality now never crosses my mind. I am finding just the opposite to be true. Not that I will now be free of all problems nor am I totally cured but this illness has brought me to a point where I appreciate life and those around me...so much more.
While I personally don't believe that God sends evil or trials to us, I think our experiences reflect the degree to which we try to abide in Spirit. We all have a desire to know God and to feel God's love so perhaps when we are focused on the wrong things something inside us creates circumstances to head us in the right direction. So, despite the fact that I still have memory and organizational problems and the world seems to be falling apart around us, I am experiencing a more consistent joy and assurance that in reality God is on the scene but that our real need is to open our awareness to this fact.
Lyme can be a devastating disease but there is always hope....especially when we look for it in the right places. I am sensing...along with a growing number of others, that despite what the media is telling us....more and more people are coming together in the spirit of love and cooperation. This spirit of love is the only thing that will truely heal our lives and the world. While, as many of you know, I feel we need to expose the corruption which is seemingly taking place all around us.... it musn't be with a sense of hate, fear or revenge.
I can actually say, even though the lyme journey has been a very difficult struggle, that if I could, I wouldn't want to change a thing. I feel that the Lyme experience has brought me to a whole new place....one of wonder and amazement.
Posts: 1176 | Registered: Oct 2002
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posted
On a positive note, my husband and daughter are both "cured" or in remission with their lyme. I am getting close.
Husband had much milder symptoms, but tested positive for babs. Malarone and artemesia did it for the babs. Abx, specifically doxy and zith over the course of about 2 1/2 years took care of the lyme. there were breaks in the abx, about 3 months then six months during that time. When he felt some symptoms coming back he went back on the abx. It was been over 2 years and despite a very busy work schedule, he is doing great. We believe he had lyme 4 years before diagnosis.
My daughter had mood problems, specifically panic attacks, GI problems, and random aching pains. We are not sure how long she had this. Could have been 4-5 years or 4-5 months. It took 18 months of doxy and it has been 20 months off Abx and she is symptom free. This despite being a college student and running herself ragged at times, but I guess youth has its advantages.
I have had the whole gamut of symptoms and had lyme 4-5 years before diagnosis and treatment. It has been 5 years of abx, treating both babs(minorly) and bart agressively and I am about 98%. There have been a few breaks in the abx. I am confident that remission is possible.
Our family has also taken many supplements, all of which are in Dr B's guidelines. Certain supplements have worked better in one family member over the other. We are just so different or perhaps the bacteria we each were infected with is different.
It is difficult to know what to do. I watch my family members closely to make sure we don't drag our feet should the lyme rear its ugly head again. But we must trust our gut when it comes to making treatment decisions and keep believing that one day we will get rid of this disease.
Posts: 132 | From SE Pa | Registered: May 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Since this thread has gotten a little less direct in response to your question...
My sister was misdiagnosed initially and given a lot of steroids for RA (arthritis).
This was DISASTEROUS.
She was very, very, very sick...couldn't even get out of bed in time to reach the bathroom. Needed help bathing...you get the picture.
She went on a LOT of antibiotics...several "rounds" of all of them...including the big guns (IV Rocephin). Tinidazole...mepron with azith (in case she also was fighting babesia, etc....all more than once. She was on antibiotics for 3 years continually.
IN ADDITION...she followed Dr. B's guidelines and took a TON of supplements. Yeast was never a major problem. She eats very, very healthy.
At one point she came very close to losing her eyesight and HAD to resort to steroid shots IN HER EYES to stop this...which it did. You can well imagine her reluctance to be forced into this decision.
She has had both knees replaced. The joints were "disintegrated". She has no strength and her left arm is twice its normal size (lymphadema).
Shis is now dx'd "autoimmune"...in other words, whether or not she is still infected, she is STILL overproducing too much TNF alpha. TNF alpha is protective, but too much is destructive. She did not have "neuro" symptoms, likely due to the ginkgo in the pharmanex vits.
She has not been retested. So we do not know for certain IF she has eliminated the infection and now her body simply still thinks it is "under attack" because the nutrient levels have dropped so far. Pathogens take nutrients from us and it takes a long time to restore the levels. It is very tricky. I believe until the nutrients are restored, the body will still think it is under attack and produce too much acidic TNF alpha which will further deplete the minerals (over time). Vicious cycle.
She is on Humira (to block TNF alpha), Foxamax for osteoporosis (which raises TNF alpha and CRP) and the ID doctor just put her on Mexotrexate (sound familiar...HIV -> AIDS)which depletes choline (further).
Given the above, you can see she has chosen to continue to follow the "traditional" medical pathway. She was too afraid to try some of the alternative paths I suggested (Rife,ozone/far infrared sauna).
The above drugs are very very costly, very dangerous too. The side effect of Humira alone is cancer (and TB).
So, bottom line, if you are new here...NO STEROIDS.
Heparin does indeed HELP for a number of reasons, but there are multiple ways for this pathogen to attach (pubmed, 2003 abstract).
Stop Bb from forming its cell wall and restore the nutrients depleted in order to fight.
IF Bb is going into the cells and taking OUR phosphorus, then WE are making a LOT less ATP because phosphorus is the MAIN nutrient to make ATP...the energy carrier. Without enough ATP...there goes Mg because Mg locks onto ATP as Mg-ATP - one to one. A lot of ATP in the cell = in goes Mg.
Mg-ATP is one thing (of several) that INactivates PFK (glycolysis control)...which Bb is dependent on. In addition, Mg INactivates HMG CoA reductase which puts the brakes on the cholesterol pathway in the liver. (We still will get some cholesterol, and must, from our foods.)Mg...enough...sustained...will even "displace" Zn.
Normally, we use oxygen to make most of our ATP. We can use sugar (glycogen) too, but the difference is HUGE. We only make 2 ATP using sugar, 36 if we use oxygen. Guess which route Bb sticks us in...the glycolysis pathway...sugar, this bugger wants sugar to help to make its ATP. Like all spirochetes, it ferments sugar -> ethanol (not good).
The only way to eliminate this infection is to restore the Mg-ATP pump. When that pump isn't working the Mg-Ca pump and the Na-K pump are disrupted. We end up acidic. Too much Na (sodium) in the cells and too many hydrogen molecules. The body tries hard to counter this acidosis by using the other negative ions...chloride and bicarbonate...which is one reason why melatonin looks to be overproduced -why you don't want to go into the sun (which causes melatonin to convert to serotonin).
Vitamin D goes up because this nutrient helps us to ABSORB MG and P. It also protects us from cancer.
The body is trying to find a lot of different pathways to protect and save you.
Restore the deficient nutrients to heal.
Bb takes from us: Phosphorus + choline (lecithin), zinc, fructose, and likely selenium. We respond by utilizing Mg, Vitamin E, and vitamin A (careful...overdosing that is dangerous)and likely vitamin C (water soluable...leaves the system within 2 hours)to fight.
A body in balance has no disease.
This is a UNIQUE pathogen. The outer cell wall is UNIQUE. We have to find another way.
This IS the basis of antibiotics as well as our own antibodies. First either destroy the cell wall OR prevent it from forming.
If that cell wall is cholesterol...
P.S. In mice, to prevent the death from SARS, researchers actually GAVE mice the enzyme that this virus was after. It locked onto the "excess" enzyme and left the system. The virus did not trigger the sudden death due to respiratory failure.
Unique approach.
We can and will "outsmart" them.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Marnie, I think the PS part was very interesting. Competitive inhibition ehe?? Cool.
I know that was how one father solved the ALD problem by competivly inhibiting the fatty acid chain using purified grape seed oil.
Now, this treatment, known as Lorrezo's oil is the treatment of choice to prevent the progession of ALD.
The more we learn about the microbiology of Borrelia, the more I think an idea like you just presented actually has a chance of providing some decent research into complementary therapies, or genuine alternatives to antibioic therapy.
The knowledge you have of nutrion in the relm of what seems to be mostly chemistry is intruiging, and albiet at first I thought there was little to the whole nutrion thing, but I have since been convinced as a result of seeing with my own eyes the results of nutrition depletion. As an example, one way that I can measure my response to therapy is in my fingernails. I have these little white half moons at the bottom. For some reason, the more ill I am, the larger they grow. Also, inevitably, when medicine I'm taking is working, these moons dissapear, and in the times I've been in remission, they are gone.
So, I experiemented by taking no vitamins for several weeks, and though the antibioics alone do infact have the same effect of removing these half moons, the process is much speedier with a multivitamin supplement.
Any comments about this as you seem to be more knowledgeable than I in the realm of nutrion. What do you think is happening here from a nutrional chemistry perspective?
Posts: 559 | From Cary, NC | Registered: May 2006
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