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How long have you had Lyme disease, and how are you doing now?

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Lyme Disease
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Posted 11/3/2019 6:41 PM (GMT 0)
I have some questions. How long have you had Lyme disease and how long was your treatment? Are you fully healed after treatment or do you still have symptoms years after? I have heard that you never really get rid of the Lyme bacteria or other co-infections, you just have to keep they under control from flaring up. Are you back on your regular diet i.e. non-inflammatory foods etc?
Posted 11/3/2019 7:24 PM (GMT 0)
I first got symptoms in 2013.

I treated with a LLND (lyme and bart) for about 1 1/2 years. (abx and some herbs)
Then I self treated for another 1 1/2 years. (Some herbal/some abx/)
And then in 2018 started treatment with a LLMD and have been with that clinic ever since. Focus is on abx/antimalarial plus a few herbals.

It’s been a long haul... My symptoms have slowly diminished. over that time.

Started with 30+ symptoms - down to a few symptoms left including my original (and worst) one.

Relapsing can happen but people can and do get into remission and stay there.

I personally do know several who are in remission and have had no relapses. One of them follows a non-inflammatory diet but the others do not - as far as I know.

There are many forum members who obtained remission - a few names:

RowingMom’s daughter
Opugirl
lymepickle
Astroman
Cd3764
Peteza
Fronton
Dejavu
MauiHawaii
Posted 11/3/2019 10:59 PM (GMT 0)
I've had Lyme disease for 10 years. I've had babesia for longer than that. I've been free of most of my symptoms for 12-14 months now. I guess I would consider myself in remission.

My treatment was mostly different herbs off and on for 3 or 4 years, and then I did cold laser therapy.

The only problems I've had are periodic episodes of stomach upset, and one symptom that only went away only recently was bone soreness. Kneeling down on a hard surface was extremely painful for me until a month ago. I also had an attack of feeling nervous over the summer, but I've been okay since then.

I don't know if I've gotten rid of every last Lyme bacteria, but I have a feeling they're not coming back anytime soon. I've pretty much gone back to my regular diet. I don't eat wheat because most of my family and friends eat gluten-free anyway. I've always had problems with milk products, so I eat only very limited amounts. I am addicted to broccoli and onions for some reason though.

I still take some herbs (they help with fighting off colds and stuff), but I've pretty much back to living life normally. Weird things still happen sometimes though, like I get really clumsy and start bumping into things, or I get a stomachache, but I've been pretty good.

Best luck to you on your healing journey!
Posted 11/3/2019 11:08 PM (GMT 0)
After trying to figure out what was wrong with me for 3 years, I got diagnosed with Lyme by iGenex: March 2017.

I was positive by both iGenex and CDC/NYS standards.
I had many bands positive.
This was the only bright-side, that I did not have to guess whether or not I really have it.

I had already been sick for about 3 years.
So I guess that means I'm nearing the 6 year mark in a few months.

That said, I had certain intense health issues for most of my life.
Which did not make sense, as I've always been athletic and always ate healthy.

So sometimes I wonder if I had it longer than I think I had.
Time will tell.

My last treatment was BVT which got me to ~50-60% better.
Ever since stopping it I've declined fast to ~30% better.

Antibiotics did absolutely nothing for me. And I tried many combinations at high dosages.
Herbs did more than antibiotics, but also not that much.

My next treatment will be Disulfiram.
Posted 11/4/2019 2:35 AM (GMT 0)
No idea how long, maybe since I was 6 or so. Symptoms got real bad in 2012, awful in 2013, got a diagnosis in 2014. Have had remission and relapse periods. Last week was an amazing week for me, reached a whopping 85% functionality based on my personalized progress chart I made for myself. Usually I'm operating in the 70s though. It has to be an awful week if I'm in the 60s. At my worst I was probably 50% functioning capacity. I was never 100% to begin with though, not even prior to 2012.
Posted 11/4/2019 3:31 AM (GMT 0)
I think I got Lyme disease either as a **** or teen. Either on a trip to South Carolina in 1986 or Pittsburgh in 1992. I remember starting with head rushes around age 11 and jaw dysfunction as well as cold sweats.

By age 19 I (after a round of abx, being on birth control pills and possibly having the MTHFR genetic mutation) developed repeated candida infections which plagued me from 1994-1996. During that time I developed gall bladder attacks/pancreatitis, IBS & chronic sinus infections, costochondral & epigastric pain. Up until that point, I'd never gotten more than just occasional self-limiting virus.

By my late 20's a month after receiving a steroid shot for a bad sinus infection, I started having panic attacks, liver pain, shoulder pain, brain fog, tingles, leg cramps, & vertigo. This went on for a few months and went into remission in 2004.

It came back in 05. I started seeing an acupuncturist and got it under control and then got pregnant in 2006. This all seemed to remit. Had a healthy baby boy in '07.

Then in 2008 I developed EBV age 33 while living in SE Asia. Moved back to the States in '09 & seemed to be okay accept for intermission splenic pain.

Fast forward to 2011 developed numbness on side of my knee while pregnant. Noticed a painful left leg. Almost died in childbirth due to a hemorrhage. Then developed a mild GBS reaction to a TDAP shot post-baby. Recovered.

Then discovered I was TB pos, due to overseas exposure at previous duty station. Two mos afterwards, EBV reactivated while on Isoniazid for TB exposure. Completely activated the Lyme.

By 2014, I had muscle twitching, my left leg nearly paralyzed due to severe cramping and synovitis. I had severe shoulder pain and borderline weakness in my left shoulder. During a yearly exam w/my Ob/Gyn, I asked for a neuro referral.

Explained symptoms, she said "okay, but it's gonna take you mos to see one and they won't help you." "I think you have Lyme disease." My concept of Lyme was "we don't have ticks where I grew up, how, where?" I was completely ignorant even though, I lived and traveled on the East Coast.

Sure enough tested IgM pos, Band 23 & 41 June, 2014. Treated from July 14-2015 w/oral ABX regimen. I reached remission in January 2015.

Symptoms activated again in May 2019.

Post Edited (ElizKA26) : 11/3/2019 8:38:14 PM (GMT-7)

Posted 11/5/2019 1:24 AM (GMT 0)
Apparently I got lyme from my mom In utero.
I have had panic attacks and anxiety my whole life.
I didn’t have other lyme symptoms until I began having food allergies when I was 16-17 yrs old. Symptoms came on slowly but steadily. From vertigo and light sensitivity and complex partial seizures to extreme fatigue. And then full blown 9/10 joint pain and hallucinations and neuro issues and insomnia. could name so much more.

got dx from out of state dr after over a dozen local drs failed me when I was 21. started herbal protocols and did treatment for 4 years as I could tolerate the herxes. I was officially taken off of abx when I was 25 and lasted 5 months, the longest i’ve ever been, without abx.

during that time without abx, I had minimal symptoms but did have mini flares with too much exertion or stress or not eating anti inflammatory.

then had relapse and had to go back on abx for a month. now off of them again. but not because I don’t need them. i’m off for emergency reason that my adrenals have tanked and I can no longer tolerate herxes.

we are trying to support my adrenals as I just deal with/suffer all my lyme, babesia, ehrlichia symptoms.

detox pathways, mostly, lymphatics, in my opinion is the most important thing to keep healthy in treating lyme. if you can’t detox in some format, you will end up with “dead lyme bugs” or tons of toxins/cytokines in areas. for me, that is my brain since my cranial lymph fluid backs up. they have done lymphatic cupping drainage massage along with FSM for just a little over a year, and that helps more than anything. now, after detoxing through that treatment for a year, when i get cranial sacral done on me at treatment (draining the brain) I usually have 3 days of almost no symptoms after. to me that is a sign that the toxins are doing more damage than the lyme itself.
Posted 11/5/2019 2:03 AM (GMT 0)
"I think I got Lyme disease either as a **** or teen. Either on a trip to South Carolina in 1986 or Pittsburgh in 1992. I remember starting with head rushes around age 11 and jaw dysfunction as well as cold sweats."

I'm wondering what this bleeped word is...can't figure it out
Posted 11/5/2019 2:42 PM (GMT 0)
It is the shorter version of pre adolescent, I'm not sure why it was bleeped out.
Posted 11/5/2019 2:43 PM (GMT 0)
I had it about 2-3 years. I did have a bad tick embedment that kicked it all off. I treated with antibiotics for about 8-12 months then used herbs. I have been doing pretty well the last year or so.
Posted 11/5/2019 2:48 PM (GMT 0)
"then had relapse and had to go back on abx for a month. now off of them again. but not because I don’t need them. i’m off for emergency reason that my adrenals have tanked and I can no longer tolerate herxes."

@ lymegirly, I think this is what's happened to me. I've been on Bactrim now for over a month for a recurrence after treating the first time in 2014, for Bartonella. I keep having these Panic attack episodes while trying to fall asleep on the Bactrim. Can't take it anymore.
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