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A Question That I’m Sure Is Asked Often…

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Lyme Disease
When Did Your Notice A Positive Change In Symptoms?
Days - 0.0% - 0 votes
Weeks - 11.1% - 1 votes
Couple Months - 22.2% - 2 votes
Several Months - 22.2% - 2 votes
Year - 0.0% - 0 votes
Years+ - 44.4% - 4 votes
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Posted 10/28/2021 9:12 PM (GMT 0)
When do people start seeing a turn in their symptoms after treatment? Everybody’s different, but for me, I am completely untreated and feel in the dark about all of this. I’m just about to start treatment and I’m really not ready and not sure how ready I ever will be!

I’m sure people will see my name and see all the posts that I create. Look, i’m just really into it and feel really stuck in so this is the only place where I feel like I can ask these kind of questions and have some kind of Safetynet. I like to keep things open for discussion so we can help create a better environment in my mind. Instead of reading all this scary crap on the Internet, I feel like it’s better to get the positive things in the front, so that way I’m active thinking, “You’re gonna be well again, this will all just be a bad memory.” And I’m doing my best to think that way, but I just need to get the best info I can. Of course, no one can predict when something will work, but when you start seeing others you can generally pull an average of it all. It may seem far and wide, but as long as I’m not hearing that I’ll be in this for another 10 years, I’m okay. I feel like I am constantly repeating stuff in my mind and I just need to know how to control of it. I do everything naturally, like eating well and meditation, I also try to focus my mind, but it’s a chemical thing inside of me that’s making me lash onto these things.

I’m really hoping that trading this doesn’t make me go clinically insane. I have felt close before, but sometimes I wonder if that’s just because it’s all gotten so bad that it’s as bad as it gets. I truly hope. I have a lot of fear of losing myself. I want to see improvements, even if they’re minor. Anything!

I have seen some say they get better in just a couple of weeks, but I know that’s for many “healthy” people. Even with my healthy lifestyle, I am not that fortunate. However, I’m hoping with treatment I can one of those people, and even get well I’m a few months. At least enough to be able to walk around again!
Posted 10/29/2021 12:26 AM (GMT 0)
You are probably going to get a lot of answers you don't like. However, you are on a support forum and most come here because they are still struggling.

For me, my initial Doxy prescription helped quite a bit, but my symptoms never went away. Then, they came back hardcore and I went to see a LLMD. The first several months of treatment helped my symptoms moderately, but again, after some time I regressed. The best success I have had was later with Disulfiram. I was still was struggling but after a few months at a full dose (500mg) I was able to do things I hadn't done in years (and haven't done since) such as travel for the holidays, and actually get to the gym semi-regularly. After I stopped Disfulfiram, you guessed it, I regressed badly again. Not sure what to do now.
Posted 10/29/2021 12:43 AM (GMT 0)
I was diagnosed with CIRS/mold before I knew I had Lyme. I was diagnosed first of Sep 2016, moved to a less moldy house end of that month and started glutathione, fish oil, and binders. In Nov, I took Cholestyramine for 11 days. In Jan 2017, I had a positive Lyme test and took Minocycline for 7 days and stopped. April 2017 (8 months into mold detox), I had my first day of briefly feeling better. In July 2017, I started Buhner’s protocols for Lyme and bartonella, starting with the supportive and immune modulating herbs. In Aug 2017, I started houttuynia and then Sida acuta. It was after starting houttuynia that I had my first symptom improvement.
Posted 10/29/2021 3:38 AM (GMT 0)
I think it was a few months before I had improvement in a few symptoms.
Posted 10/29/2021 10:18 AM (GMT 0)
I was hiking 2015 and had a tick stuck on me for some days. Got a really nasty ring around it that was there for months. Didnt make me ill at the time but I remeber I was struggling with horrible nightmares for some reasons. A while after the system gradually went down until it almost shut down around 2016. I was out more than a year, slowly turned around at beginning of 2018. Took me 3 years of 2 steps forward 1 step back to get back to decent shape again..

There is not many clear true facts about this disease except for one thing, the recuperation takes an awful amount of time and isnt very linear...
Posted 10/29/2021 10:23 AM (GMT 0)
the longer the infection has been present and the more complex the symptoms pattern - typically response to treatment is likely to be slower - but it will still work.

many people have been ill for decades and still recovered
Posted 10/29/2021 11:54 AM (GMT 0)
(I copied this from an article, but it REALLY APPLIES)

"“Don’t like the weather in New England? Wait five minutes and it will change.”

This maxim applies to Lyme disease, too..........."

The Good News is that as you get further into your treatment,
the half-life of your Bad Days will get shorter!!

Rob
Posted 10/30/2021 5:35 AM (GMT 0)
Thanks for the responses everyone.

Yes, I assume I am so bad due to how long I may have had this. I have incredibly painful symptoms, I feel like everything is always moving and it has not stopped since May 15th. I definitely know I am one of the complex cases in the sense of symptoms, just don't know how I will respond o treatment. I herx to coconut oil, and I herx to garlic. I get MCAS symptoms from biting into low histamine foods such as blueberries and apples which both contain Quercetin, which should help but doesn't. I don't have the slightest bit of relief ever, except when I starve and don't eat anything, I feel like I am at baseline and my symptoms still are so bad.

It makes me wonder if I am so bad that just maybe I will feel better rather quickly from treatment. I dealt with a lot of the more "common" symptoms for so many years, ever since 2011 when the panic attacks came on. We are under the assumption that I was bite somewhere between 2007-2011, with the former being more likely. I just feel like things have not been right in my life for so many years.Now it is to the point where I actually and quite literally feel like I am about to die. Maybe I need treatment urgently, I am not sure. I know this has progresses a lot this year. I am just concerned with treating this as I cannot face constantly herxing. I feel like I read everyone's stories on here and that makes me worse. There is simply no way I can handle being worse than I already am. Believe me, I am bad, bad, badddd. I am not trying to make it sound like I am so much worse but I just scratch my head at how people can take this stuff. I feel as though I need to grip my head and want scream at the top of my lungs when I get some of these herx reactions. How the hell do I actually stabilize enough and avoid this as much as possible? It also makes me feel like I have more going on. I suppose I am simply "sensitive" as some might say. What do you all think of what I'm saying? I am freaking scared and concerned. I wouldn't be surprised if I have Lyme alongside every co-infection out there, as well as the mold that we know I have in my system causing even more hell.

Bleh. I just need a breathe. Some time to breathe and get back in the game.

Side question - what does herxing look like for you? How come I only got a bad flu one time in June (it was like meningitis but my brain looks good on recent MRIs, although we know this is not the case) and since things have been just the feelings of fluctuations? I feel like I need to hear stories. I just feel so... not normal. Beyond that stage now. I just feel like I will never be well again. It's madness. Where do I even start...?
Posted 10/30/2021 5:50 AM (GMT 0)
i knew i was herxing well when my eyes would burn and itch real good . super heavy legs lethargy low bp and sweats etc...
it took 9 months of triple treatments to stop the bone crushing pain and vertigo ... 3 yrs yo get back to some sorta life .

general rule of thumb in holistic medicine is 1 year of illness equates to 1 month of heavy duty treatment . so 36 months was about right for 30 yrs of bein sick with pulsing and breaks and all.

dr k likes to start biggest to smallest meaning from helminith first , then protozoan ,fungal then bacteria then myco and then viruses so that one doesn't reinfect themselves with something harboring in something larger ..and since u have such strong food reactions id start a good parasite cleanse, then candida , put a layer of s boulardi and good probiotics and the pick a lyme protocol and stick to it for a bit . u got this . there will be a day when u say , hey this sucks less than it did yesterday ...

also holy basil likely saved my life from the emo herxes that bartonella caused . i shoulda had a straight jacket while on titering up alinia

Post Edited (bluelyme) : 10/30/2021 12:02:11 AM (GMT-6)

Posted 10/30/2021 12:47 PM (GMT 0)
Hi all,

I felt a difference in a couple of weeks after taking Borrelogen (Jernigan remedy). First I couldn't believe it but it just kept getting better. I went from being bedridden and difficulty in walking to having energy (I was extremely fatigued). I felt so good that I got out a can of paint from my basement and started to paint my living room. I didn't get far but I did a section. That alone was like a miracle for me.

Of course I had lots of symptoms (brain fog, migrating pain, etc.). I had Jernigan's original book and I followed his protocol in his book. I started taking detox baths (epsom salts with hydrogen peroxide), prior to the baths I would dry skin brush. I also took foot baths (mustard and cayenne pepper).

I suffered from severe brain fog so I called up the clinic and they suggested I start taking the Neuro-Antitox CNS/PNS formula and do coffee enema's. Thus I took their advice and changed my diet.

Again, I was amazed that after being undiagnosed for 5 long years that I was able to feel that good in such a short time. I said to my lyme friends "what the _____ is in that stuff?" LOL! And the lyme friends who was more knowledgeable about Jernigan's protocol explained it to me.

Just wanted to chime in.
Denise
Posted 11/1/2021 7:06 PM (GMT 0)

Garzie said...
the longer the infection has been present and the more complex the symptoms pattern - typically response to treatment is likely to be slower - but it will still work.

many people have been ill for decades and still recovered

Yes, had it prob for decades , hard to tell/remember what normal felt like, now im almost there, yes, it feels better.

I realize I might not ever be 100% but Im no longer young so 100% healthy would actually be abnormal for 50+ year olds. That said, I now again do things that were not possible in my 40th decade of life ( low energy and all over body pain back then, + no sleep)..

For me the answer was 1.5 years after starting ABX. But my whole body was so screwed up with autoimmune that I changed to a healthier life style / foods ect........So I'm still slowly improving 5 years after my last ABX.
Posted 11/12/2021 1:33 PM (GMT 0)

MooseSafari said...

There is not many clear true facts about this disease except for one thing, the recuperation takes an awful amount of time and isnt very linear...

I would definitely agree with this. There are some who do have a clear, linear progression, but they seem to be in the minority, at least among the people I have heard from here.

There are too many medical unknowns, period. The world we live in today isn’t the same world our great grandparents lived in. No one knows the real effects of our current toxic environment on our bodies or on the microbes that live inside us.
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