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Do you guys have "flares"

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Posted 12/9/2020 1:17 PM (GMT -5)
For the last 2 years or so i have seen some initial improvement, followed by a general plateau where my symptoms are relatively limited and more importantly very manageable. These include twitching, some cramping, occasional pain in my chest. I haven't treated lyme in almost 2 years and basically just have some supplements that i've gotten used to taking.

But it looks like every few months i have what can really only be described as a flare. So much so that it makes me think i might have MS. Basically it comes on pretty strong, over the course of about a week and then very slowly the symptoms die down again until it gets to a plateau level.

3 weeks ago the most recent "flare" showed up. Over the course of about 10 days i went from very mild twitching and chest pain to the following(in order of showing up over 10 days).

Increased chest pain
Slight weakness
Pain and cramping
Massive twitching everywhere in my body
Dizziness
Anxiety
Hypersensitivity on skin(hot and cold feelings)

Last time i had a flare it wasn't nearly this bad, and still took about 2 months for it to settle down. So i'm really worried that even if this starts to settle down it might take a very long time.(right now things still seem to be getting slightly worse almost every day)

My questions are: Has anyone experienced something like this? How many of you have thought you might have MS, and what made you realize it wasn't MS? Any explanation as to why this might be happening?

For those who don't know, i treated lyme with multiple antibiotics throughout 2018, but didn't really see any improvement. Found out i had a mold issue, moved out of my house into an apartment and treated with natural binders. Throughout 2019 made improvement before hitting a plateau in around September. Since then things have been very stable(excluding the flares), with a possible slight improvement up until 3 weeks ago.
Posted 12/9/2020 3:41 PM (GMT -5)
I think if you have treated adequately, flares are common place every now and then. I have wondered the same thing recently, though. I am getting over something these past few days (maybe COVID?), and it has caused Lyme symptoms to show up pretty strong. Usually when this happens I have a cold or the flu (normal sick). I treated for several years with multiple abx and I am currently approaching 7 months of no abx, so when these symptoms hit a few days ago, naturally I was freaking out the Lyme has reappeared, but to my pleasant surprise, I am getting back to my normal self pretty quick and today I feel really good which leads me to believe I was likely fighting off some other foreign invader.

Chapelle, another forum member, recently posted a thread title "Major Flare" where she shares a similar experience.

Here is a link to a good interview of Daryl Hall and Dr. Horowitz. Daryl mentions that about once per year he has a flare that he has to treat with a short course of Omnicef. I have read many other articles of people treating initially for a lengthy period of time, and now (once the bacteria load has been sufficiently reduced), can manage a flare on their own, or require just a short course of abx to get back to normal. If this is the new norm for me, I'll take it!

https://www.huffpost.com/entry/its-a-scandal--daryl-hall_b_11118332

I think the key is to not let the flare get out of control. Monitor it closely, and if you think it is getting worse and worse, it may be best to treat in case it is a true relapse, in which case you want to intervene sooner rather than later.
Posted 12/10/2020 8:24 PM (GMT -5)
Bump.
Posted 12/11/2020 9:50 AM (GMT -5)
I had flares for YEARS before I knew it was Lyme. I would get flares of cardiac symptoms that would come for days to weeks and then months. They would disappear for a time and then return. I also had flares of stiffness and pain in my fingers, wrists, feet and ankles that came and went for years. Sometimes it was the hands. Other times the feet. Other times both together.

Sounds like you need to be treating.

I got slack on treatment, quitting houttutnia in early June after I ran out, and quitting sida acuta in August when I stopped to take 7 days of Flagyl and never restarted. Only remained on Japanese knotweed and a couple of supportive herbs. Now I am noticing cardiac symptoms again. Haven’t had it in years. I need to get serious about treatment again.
Posted 12/11/2020 9:56 AM (GMT -5)
Flares are an unfortunate part of my life. I live in fear of the flare!!! Everything i do causes a flare. Too much stress, too much coffee, the wrong food, too much exercise, too little exercise. It's the immune system, not the bugs.
Posted 12/11/2020 10:03 AM (GMT -5)
PMS is my worst time. I know I have some uterine fibroids which are tumors caused my estrogen overload. I wonder if getting them removed would help? I highly recommend rosin salt baths during flares. Light a candle and use some essential oil!
Posted 12/11/2020 10:47 AM (GMT -5)
Guys thanks so much for the responses. Very interesting to hear your thoughts, and while i am glad i am not alone, I am also sad that you guys struggle with flares. I think like DCD mentioned the worst part is living in fear of what causes it and whether you are going to get another one. Because i really don't know what combination of factors is causing my illness, whenever i have a flare i get SEVERE health anxiety and my mind tends to jump to things like ALS or MS.

@Fronton, thanks for sharing. When you treated with ABX did you experience herxes? I only treated for 8 months, but besides the occasional flares(even then) i could never tie my abx to herxing directly. Therefore i tend to lean more to dcd2103's viewpoint where it's not really the lyme causing this.
Posted 12/11/2020 10:51 AM (GMT -5)
At WBF, i wouldn't treat with ABX again, it messes up my digestive system too much and i just never noticed massive improvement. However i did order some tinctures for JKplus and babs stuff(always had a lot of babesia symptoms) so i'm going to start that soon, however i want to get a stable baseline before i do so i can see if it affects me strongly in any way.

Having said that i also lean more to dcd's viewpoint that it's not so much lyme critters attacking me, but rather my nervous system freaking out for some other reason. I have some mold issues and have serious detoxing issues.
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