As I sit waiting for my results from my Western Blot which we all know can be as accurate as a mouse throwing darts at a brick wall, I see alot of people suffering terribly from this disease but have not gotten to see anyone posting they were actually cured by following LLMD's? Is it basically if we have it we are stuck for life? Or is there someone out here with a "cured" status?
Posted by Judie (Member # 38323) on :
I went into remission at the beginning of this year and spent most of the year undoing the damage from antibiotics.
We go into remission because there's no test to show if we're actually cured. You can go asymptomatic for Lyme which is the goal with treatment.
Another person I know was in remission for several years and then had a reemergence of Lyme after a car accident.
Sometimes someone checks in on the forum who's been well for awhile. You sometimes see it in the "general support" section.
Also, if you're in remission, you can still get reinfected. That happened to me a few weeks ago when I got bit again.
Posted by Ohio72 (Member # 42237) on :
Glad to see progress Judie, I guess I was praying for "cure" but yes remission is very good as well, I have not seen my Western Blot tests so I can tell you if any bands are present, and my illness didnt begin until about 4 years ago, so there is really no telling if/when I got infected.
Posted by surprise (Member # 34987) on :
People get a lot better, and move on. Improvements, able to go live life- maybe not the same, but okay enough.
Posted by sixgoofykids (Member # 11141) on :
I'm back to where I was before I got sick. I do nothing for "maintenance" except the normal stuff ... eat right, sleep enough, exercise, sunshine, etc.
It wasn't the antibiotics that got me well though .... it was rebuilding a healthy body, detoxing, photons for bacteria treatment, parasite treatment with herbs, Dr. Natura cleanse, Hulda Clark cleanses, and lots of exercise (Pilates, not cardio, but hard-core classical pilates). I also eat right, optimize my vitamin D levels, supplement iodine, and have actively worked hard to heal my gut.
It's not like strep throat where you take some antibiotics and get better in a couple weeks. You have to work hard to regain health. Killing bacteria is only a part of that.
Posted by daphnesmom1 (Member # 39433) on :
Hi, six, good to see you pop in. You are always an inspiration. I think of you often and am glad to hear you continue on with good health.
Do you mind if I ask what else you are doing besides eating right to heal your gut?
Posted by TF (Member # 14183) on :
I completed my lyme treatment over 8 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
It took 10 years of being sick with lyme before I got diagnosed. Still, I got rid of it.
I got rid of it by going to a doctor who followed the Burrascano protocol, and I did too. I did the 1 hour of weight lifting every other day that Burrascano says is required to attain a remission and prevent relapse.
I believe this requirement is key to getting rid of this disease. Yet, many overlook it.
Notice that sixgoofykids did lots of pilates to get well.
Read Burrascano's section on lyme rehabilitation and get the science behind this requirement. Then, take it seriously and do it. It starts on page 31:
The patient also must not smoke or drink. I followed all the rules. That's how you get your immune system back.
Wish you the best.
Posted by daphnesmom1 (Member # 39433) on :
Thanks TF, I feel like I am following all the rules, but this is my 6th year of treatment and it's starting to get a little stale.
I still have so many bad days and symptoms. I don't know what is what anymore. I see one of the best LLMD's around, and sometimes I think they are getting frustrated as well.
Right now I think my biggest issue is food sensitivities, which I have been ALCAT tested for. I am trying to stick to the diet as best I can.
I try to exercise. ie walking, light yoga when I can. I guess I better get my weights back out. I haven't felt well enough to use them in a while.
I feel like I am continually pushing through symptoms. So many backslides. It's tiring.
Posted by surprise (Member # 34987) on :
Right, a complete lifestyle change focused on health- emotional as well.
I needed a lot of gut healing- not from taking antibiotics for Lyme, either.
Daphnesmom, have you treated parasites? This is a huge issue for me, didn't realize until treating them- and they can keep you sick, holding onto bacteria.
Posted by TF (Member # 14183) on :
My major symptom all the years I went undiagnosed and while I was being treated for lyme was extreme muscle weakness.
I could not stand more than a minute, hold the phone to my head more than 30 seconds, or hold my mouth open to have my teeth cleaned.
So, when the lyme doc told me I had to do the Burrascano exercise program (weight lifting), he may as well have told me to climb Mt. Everest.
My legs shook like jello walking down our basement steps to get to our weight bench. I had to have my husband with me for encouragement. I lifted just the bar with no weight on it in the beginning.
I lasted for about 10 minutes my first weight lifting session--and that was just a few seconds of weight lifting and lying there panting afterwards until I tried again.
Nevertheless, I persevered. It took me forever to get up to 30 minutes of weight lifting. Then, finally I was able to do an entire hour, doing each muscle group for just a few minutes at a time.
I did a full body workout--arms, back, chest, abs, buttocks, legs, etc.--doing the same easy weight lifting over and over again to make a 1 hour routine.
Eventually, after months, I was able to add more weight. Then, I knew I was finally getting somewhere.
I don't want to minimize how difficult this was to do. Please don't think that it was no problem for me because it was. But, I believed what Burrascano said that it was doing for my immune system and that this was the way out of a compromised immune system. And, it was.
Posted by daphnesmom1 (Member # 39433) on :
My next LLMD appt is Oct 4th. I plan on bringing up parasites. Early, early on in treatment I was treated with Malarone and many abx combinations, I can't ever remember.
But I see people are treated with Ivermectin and Alinia. I suspect my LLMD will go there. Which is fine with me.
I guess blood testing doesn't matter with parasites? All my tests come back neg.
I was able to use weights up to last year and then something happened. I used to walk about a mile and then do about 20 minutes of weight work, and slowly I started backsliding.
I have been primarily on Cowden after 3 years of abx. I think I am one of those people where the abx are too strong and the herbs just cause flares and don't really get me anywhere.
Hard to tell.
Edited to add, that I have been in remission 3 times over the last 6 years. Functioning at 90%, so I am hoping it's attainable again.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by daphnesmom1: Hi, six, good to see you pop in. You are always an inspiration. I think of you often and am glad to hear you continue on with good health.
Do you mind if I ask what else you are doing besides eating right to heal your gut?
Thanks. I try to glance over the board a couple times a week, but sometimes I'm not so good about it. I run a business with my daughter (pilates studio) and she just had a baby (first grandbaby) so I've been pretty busy!
My gut is good now. I ate a lot of food I fermented myself - sauerkraut, kefir, kombucha - for a long time, many months. I ate a little sauerkraut (usually cabbage, onions, garlic, and grated carrots) with every meal. I found the natural probiotics to be more effective than anything I could take orally, including VSL3#.
I also took Thorne Biogest with meals. It was a game-changer for me. I eventually weaned off it because I no longer needed it.
I did the Dr. Natura cleanse for as long as they say to do it. Very helpful.
Treating parasites was very helpful. Humaworm and enula.
I do the Natura cleanse yearly now for maintenance of my gut. It has a light parasite cleanse as part of it, too. They recommend it yearly (or maybe more, can't remember), so I do it based on that recommendation, not because I have any symptoms.
I did not eat sugar. I eat some now, but hardly any at all, I just don't like it. Sometimes I'll have a tiny bit of ice cream if the family is having some, but that's about it.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by TF: Notice that sixgoofykids did lots of pilates to get well.
Yes. I do not think you can get better without exercise. I think it's no coincidence that TF and I both got better and stayed better even after using entirely different protocols.
And the pilates I did is every bit as hardcore as any weightlifting program. I have young guys as clients and one expects a workout equivalent to the Crossfit one he did before he got hurt doing Crossfit. Though you certainly can't start out at this kind of level .... that's another reason I like pilates .... you can start out slowly, even lying down to take gravity out of the equation ... but if it's not your thing, find your thing and do it, just be sure it's whole body and is strength training.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by TF: I don't want to minimize how difficult this was to do. Please don't think that it was no problem for me because it was. But, I believed what Burrascano said that it was doing for my immune system and that this was the way out of a compromised immune system. And, it was.
Exactly. Some days my "exercise" was just getting out of bed and walking around the house, but that was only when it was really, really bad.
Other days, my husband would get me in the car, take me to the gym, and I'd walk it, then sit, then turn around and go home.
Other days, I'd actually lift some weights.
Eventually, I discovered Pilates and did that at my own pace.
Start slowly. Drink a lot. Exercise releases so many toxins, it can even stress a "healthy" person's kidneys if done at too high a level!!! I know because I spent 4 days in the hospital when I overdid it during teacher training. (Crossfit recently hit the news for this issue).
Posted by surprise (Member # 34987) on :
It is really good to hear from 6goofykids and TF- so glad you still post.
I have been consistently weight lifting and walking hills in my neighborhood (sunny CA) and it has helped me tremendously-
gives me self confidence, I feel and look healthier, can open jars on my own ;-). I am very, very grateful I can do this now. Circulation, muscles, appetite all a plus. My kids see it too.
Posted by KH111 (Member # 25829) on :
My husband got bit by a tick back in 2003. Treated within 10 days, but still ended up treating for 18 months. Learned he also had babesia. Then I got both lyme and babesia from him and I was treated as well. We stopped abx in the fall of 2004 and have not been on abx since. Since stopping abx my husband has done 3 Ironmans and one 50 mile run at high altitude. So I guess you can call it remission/cured.
Posted by RC1 (Member # 31923) on :
Daphnesmom,
If I had not remediated the mold in my house I'm sure I would still be sick. If you are mold susceptible (you can find out with the HLA DR test) that can be what's holding you back. 25% of us have these genes.
What happens is this the Lyme infection wrecks your HLA (Human Leukocyte Antigen) and makes it so you can no longer detox mold.
The symptoms are the same as Lyme, they are both neurotoxins.
Posted by Ohio72 (Member # 42237) on :
Well did get semi results back from Western Blot very generic report from doctors saying band 41 positive and didnt show any other bands whether they were IND or NEG or anything just simple text saying band 41 positive. Anyways thanks to some people here I found a doctor that I will be seeing on the 30th of this month, hopefully can get to the bottom of my health issues.
Posted by GretaM (Member # 40917) on :
Ohio-I'm so happy to hear that you have a doc appt lined up! That's great news! I hope everything goes well and please keep us posted Posted by YinYang (Member # 36358) on :
Hi All,
I see some names I remember in this thread. I, too, am doing really well. And, like six, it's not from the antibiotics. If you look back in my posts I went to a very scary place with ABX (I was having seizure activity in my brain, my children were acting as if they were autistic...etc.).
I switched to herbs. Had to undo a ton of damage I did to myself and my family with the ABX. Starting with Buhner's core protocol. Adding from there. Really shifted my lifestyle and I feel as good as I did before I was sick with Lyme.
It's possible.
Posted by Brussels (Member # 13480) on :
Yes, me too, like Six and YinYang, I think I am cured too.
Remission, cured, whatever word you use is fine. It means, no treatment, no symptom, for more than 4 years now. In the beginning, it was hard to reach 6 months without relapsing or being bitten again.
Now, even the new tick bites do not bring lyme so far. ONe day , who knows, but so far, so good.
I lost teeth to lyme, my hair color changed (more white hair), I think I got more electrosensitive (or more electro aware...), but that is basically it, on the physical level.
I have to keep on a healthy diet, exercising or doing yoga, I do treat candida on and off, but muuuuch better than a decade ago, but lyme is gone.
Posted by tdtid (Member # 10276) on :
As someone said earlier, many of us don't post on here any more once we get into long term remission since we are now out living the life that we had missed out on for so many years of being sick.
I know I'm guilty of not being on here constantly, the way I was when I was so ill.
My doctor does tell me that at this time, lyme doesn't have a "cure", BUT we can knock it in to long term remission, which is where I am right now.
There IS hope at the end of the tunnel. Although it can be overwhelming and hard while going through it, I can 100 percent say that it was all worth it.
When I started out, they thought I finally had had a stroke, so I could no longer walk, talk and I was numb on one side of the body and tremored on the other. I was in horrid shape. And yet 5 1/2 years later after aggressive treatment and then moving to herbals, vitamins and minerals and healthy life style choices, I'm back enjoying life.
And through it all, Lymenet was my saving grace since there was always some one here to set my mind at ease and let me know that various herxing was normal or times when I should call the doctor. It was like they took my hand and walked me through it.
So stick around and keep us posted on your good as well as bad times. This was a huge support system as I struggled this horrid battle, but yes, I'm living my life to the fullest now. Yes, I'm OLDER now, so don't have the same energy levels....hahahaha....but life is good.
![[Smile]](smile.gif)
I try to glance over the board a couple times a week, but sometimes I'm not so good about it. I run a business with my daughter (pilates studio) and she just had a baby (first grandbaby) so I've been pretty busy!