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Posted 8/4/2017 8:59 PM (GMT -5)
I've been treating lyme for about 5 years, and it hasn't gone away. My approach probably hasn't been the best. Because I have to work, I only take abx and herbs on the weekends, because the herx makes me sick. I did ask my boss to lay me off so I was able to treat the lyme consistently for about 7 months with abx and herbs. However, it has not gone away.

I was recently listening to Dr. Nielsen's youtube video, and he talks about a woman who was in real estate, and she said she was going to lose her entire life savings if she took more than a year off to treat lyme disease. So she treated it extremely aggressively for a year, and by the end of the year she was symptom free, except that she needed to take maintenance biofilm busters to keep the disease at bay. He says once you have chronic lyme, you never truly eradicate it from your body:
https://www.youtube.com/watch?v=pkY-lckynP0

So, What I'm thinking about doing is asking my boss to lay me off again. That will give me 6 months on unemployment, and then I'll pay my way with my savings for another 6 months, so that will give me a full year to heavily treat lyme. I'm planning on being extremely sick every day for a year's time. No breaks.

I think a protocol of 2 months on biofilm busters, then heavy herbs and abx for remaining 10 months to try to eradicate this disease. I think this is my only shot of getting rid of this disease. I've had it for 5 years, and it's obviously not going away without a fight.

My only concern is if I put in this effort and dedication to treatment and then it ends up coming back. That would be incredibly depressing, but if it happens it happens. Dr. Nielsen says chronic lyme never goes away so you need to remain on maintenance drugs for the rest of your life. I think these drugs consist of biofilm busters and herbs.

He says that your immune system will fight off the spirochetes, but I'm not totally sure I believe that because if our immune system could fight off the disease, why did we get it in the first place. So with that thinking maybe I will continue to take abx on the weekends like I do know, as maintenance. We'll see when we get there.
Posted 8/4/2017 9:17 PM (GMT -5)
I hate that this disease forces us to make such hard life decisions like these.

gfields, I wish you the best of luck with your plan!

Denver1
Posted 8/5/2017 4:09 AM (GMT -5)
Yes, and I feel if it wasn't so politicized, then we would have better research and better treatment guidelines and better treatments. But it is, so there's nothing much we can do.
Posted 8/5/2017 5:03 AM (GMT -5)
it took me 2 years to get back to work ...iv abx , iv silver , bvt , herbs and orals and rife , i have been relentless. u gotta try gfields..insanity is doing the same thing over and over expecting different results, try different modalities? extreme circumstance call for extreme measures
Posted 8/5/2017 5:49 AM (GMT -5)
I am praying and hoping for healing for you. We will be here to help and remember you can lean us on to make it through the bad times.

Please take time to restore your soul through all of this. A smile, a bit of joy here and there, I know its tough, this is a demanding disease and fight.

Those moments that you can find some peace in this hell will make a difference in the long run.

You take care and you go for the win girl!!!!!!


Jo
Posted 8/5/2017 12:46 PM (GMT -5)
Thanks for all the help and support of this community! It does really help as we all struggle to get through this disease. Hopefully once I get well again, I can contribute back to the community and tell people how I was able to achieve health again. The more stories we have about how people achieved health again, the more avenues we'll have for those who are struggling.

Another issue I feel bad about is all the poor animals in the forest who have this awful disease. I would imagine that every single animal probably has lyme disease, and they have no access to antibiotics, or the specific herbs they need to treat their disease. They are just suffering day in and day out in the woods. Squirrels, chipmunks, raccoons, deer, mice, crows. They probably all have lyme disease. If this disease was in fact weaponized, as many people have suspicions about, I hope the weaponizers realize how much suffering they have unleashed not just for humans, but the entire planet, including the innocent animals of the forest. Very tragic.

Perhaps the only way to eradicate lyme disease on the planet would be to devise a disease for ticks that would destroy their population. Even then, lyme would be passed down from parent to child in the animal communities, even if ticks were destroyed.

Post Edited (gfields) : 8/5/2017 11:49:29 AM (GMT-6)

Posted 8/5/2017 3:48 PM (GMT -5)
Do you have someone to help guide you like an herbalist or LLMD?
Posted 8/5/2017 4:35 PM (GMT -5)
"if our immune system could fight off the disease, why did we get it in the first place. "

Don't underestimate the immune system, it can kill diseases far more effectively than antibiotics. Most of us just don't treat it very nice or are impacted by the innumerable environmental variables that have been shifting around us. Whether a healthy immune system can fully eradicate Lyme or not, you definitely need it's help. It's your only shot of remission/cure. Antibiotics largely just tip the balance in favor of the immune system. But if you never get there, maintenance herbs wouldn't be the worst thing in the world. I shutter at the thought of maintenance antibiotics for life though...

Anyways if i can suggest another alternative... Rather than quitting your job or only taking herbs on the weekend, maybe try smaller doses? I spent a whole year thinking i was never going to heal because the herxheimers were so intolerable i nearly checked into the ER a few times. I was only taking average doses. I finally started microdosing and immediately noticed benefits. Then i upped the dose of knotweed by like 1/4tsp every month. Ensuring no surprises would hit me three weeks in. Mild herxes here and then, then remission, then increase ad nauseum. I've had pain come and go every time i increase the dose but it's nothing incapacitating and i'm finally on a full dose after about 4 months of slowly working up to it and living a pretty functional life. I really don't think the "hit it hard" approach is always right for everyone. Sure i want to get better, but i'd rather spend 3 years being mostly functional and improving than 1 year in bed in pain and agony and not even know if it will go away at the end. I've also found that treating too hard becomes catalytic. Not only do i have massive die offs, but end up with runaway inflammation that never resolves. Probably because dead bacteria->inflammation->antibody->dead bacteria->inflammation->antibody... And though you'd hope that it ultimately ends at "dead bacteria" that's never seemed to really work out for me. Just made me sick and miserable. Going slow and titrating up i seem to be able to retain all my improvement.
Posted 8/5/2017 6:18 PM (GMT -5)
I have an LLMD. I just switched to a new one. She prescribed me abx for M/W/F/SA/Sun but I tried that for a week and I couldn't function at work. My job is very stressful and mentally demanding.

I suppose I could try taking small amounts of the biofilm busters while I'm at work over the course of the week and see how that impacts me. If I only took like 1/16 of each of the biofilm buster pills, I could get a sense of how I could tolerate that while at work.
Posted 8/5/2017 10:18 PM (GMT -5)
"Sure i want to get better, but i'd rather spend 3 years being mostly functional and improving than 1 year in bed in pain and agony"

Thing is i was not functional...and was already in pain and agony ...psilo you still have your wits about you ...some are not so lucky ...and i have seen spirochetes come out of white blood cells ...it wears theirs plasmids like a cloak ...erlichia specifically infects wbc ..bart takes out the immune as well....no amount of cats claw or jk or 1/16th doses of whatever is going to get anybody very far imo...

I didnt want to been in hell for 7 years saying oh i wish i would treated harder or tried this or that....so 1.5 years of super hell was worth it to me because i now have a quality of life back ...to each their own i can respect mild misery ..and hung out there for many years ...more than one way to skin this cat scratch fever

Post Edited (bluelyme) : 8/5/2017 9:21:08 PM (GMT-6)

Posted 8/5/2017 10:27 PM (GMT -5)
gfields,

Any chance you could get approved for Short-Term (then, once exhausted, Long-Term) Disability and get paid?

A couple of years ago, I was so bad that I took a month of FMLA leave without pay. Recently, I was able to get approved for two months of Short-Term Disability with pay. I should have applied for STD the first time, but I figured they wouldn't approve it.

This most recent time, though, I figured why not apply...I had nothing to lose.

Whatever the case, I do wish yo the best of luck. I'm so sorry you've been battling this so long. Don't give-up!

The Dude
Posted 8/6/2017 8:21 AM (GMT -5)
Thanks man. Yeah, I did try getting disability, but I got denied twice. They said, "You can work. You're not that sick." They don't take lyme seriously because of what the CDC says.

I've asked my boss to lay me off in the past, and they've done that. So I think I might do that again. In my state of Massachusetts, you can collect unemployment for 6 months, so that's better than nothing, and then I'll just pay my way for another 6 months. That would be a year of treatment, so that might be better than nothing. If I hit it hard, I might be able to eradicate it. I read somewhere it has an 8 month lifecycle.
Posted 8/6/2017 9:20 AM (GMT -5)
Hello gfields.. I've been treating for 8 months now and I finally feel 100% well after introducing MSM ( a natural solvent that interferes with the adhesion of biofilms or pathogens to surfaces; makes cell membranes more permeable to nutrients) and coffee enemas (Twice a week). This biofilm stuff is very mucousy and slimy, which allows it to become very adhesive to any surface (especially the colon). Build your dose of MSM slowly, and make sure you use binders (I got a terrible headache the first time I took 5 grams of MSM at once, now I can take 15 grams with no herxing). I've never been able to see biofilm in my BM until I started coffee enemas, so I highly recommend doing them if you want to see real progress. This whole treatment phase has been trial and error for me, and I've finally settled on this protocol.
Posted 8/6/2017 1:31 PM (GMT -5)

bluelyme said...
"Sure i want to get better, but i'd rather spend 3 years being mostly functional and improving than 1 year in bed in pain and agony"

Thing is i was not functional...and was already in pain and agony ...psilo you still have your wits about you ...some are not so lucky ...and i have seen spirochetes come out of white blood cells ...it wears theirs plasmids like a cloak ...erlichia specifically infects wbc ..bart takes out the immune as well....no amount of cats claw or jk or 1/16th doses of whatever is going to get anybody very far imo...

I didnt want to been in hell for 7 years saying oh i wish i would treated harder or tried this or that....so 1.5 years of super hell was worth it to me because i now have a quality of life back ...to each their own i can respect mild misery ..and hung out there for many years ...more than one way to skin this cat scratch fever

Certainly blue. I totally understand that. Just to be clear though i wasn't suggesting OP suffer at his current level for several years without seriously treating. The low doses have helped me feel tremendously better and they prevent all the spontaneous changing and new symptoms that contribute the most to my dysfunction. To me they have been the fastest path to FEELING better. That's all i'm saying. Most of us will probably only get better on high doses, but at least for me, i can work up to that over a long time while feeling better immediately. The smallest dose of knotweed killed my vasculitis in 60 minutes. Of course, that is a pretty superficial symptom. The deeper they are the more hardy they are, but many of us need to strike some balance between aggressively treating debilitating symptoms and adding to them by herxing continuously. I used to have all kinds of stabbing pains, feeling like i was going to stroke out etc. They simply disappeared on my low dose plan (now i'm up to full doses and experienced much less backlash). So i guess a better way i can put it is to say "titrate" the doses. Taking regular doses of several things all at once is exactly what put me in bed. All i'm really trying to do is clear out the most susceptible ****ers first so they don't contribute to my misery when i go for the more stubborn ones.

And Gfields, i don't know that my plan would work as well for biofilm busters. My sort of philosophy is remove the foam from the top before you go deep. Those ketes having a field day just grazing on your tissues are open targets for low doses of herbs. Leaving them while you go for the deeply embedded bunkered dudes just adds to the die off. Or so that's the approach that's been working for me so far. Slough off the excess, then advance your front. One step at a time to avoid being bed bound. I can now comfortably handle doses twice as large as i could when i tried to go for it at once.

Post Edited (Psilociraptor) : 8/6/2017 12:37:44 PM (GMT-6)

Posted 8/7/2017 1:04 AM (GMT -5)
What is MSM? I've never tried a coffee enema. Maybe I should read up on that.

I think you might be on to something with the low and slow. I had caught athletes foot during college because I was arrogant and I laughed at everyone wearing flip flops to the shower. I just went with bear feet, and then I caught athlete's foot. I had it for at least 10 years. I tried everything to get rid of it, but nothing worked. Then I said, you know what, I'm just going to treat this every single day until it goes away. Before I was sporadic about it, and didn't have a system down. After I treated it every single day for about a year, it finally went away. It hasn't come back. I seriously believed that I was going to be stuck with it for my entire life, but one day it went away. I kept treating it after it had gone away for at least 3 months. It hasn't come back since and it's been at least a year.

I think lyme is going to be similar to the athletes foot. It's this thing that just won't go away and you just need to be very persistent and keep treating it, treating it, treating it, and once it seems like it has gone away, just keep treating it, treating it, treating it. Finally, some day, maybe it will finally be gone.
Posted 8/7/2017 2:26 AM (GMT -5)
MSM = Methylsulfonylmethane - sulphur nutrient from plankton

It used to be a popular supplement for arthritis several years ago (maybe it still is?)
In the days of Glucosamine/Chondroitin.

Psilo - are you treating with herbs only? And how low are you talking? (doses)

re: vasculitis - what are the symptoms?
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