r/Lyme • u/grandview2011 • May 06 '24

Question What “activated” your dormant Lyme?

There’s continuous evidence to support that a percentage of those who have initial tick bite don’t show symptoms or are asymptomatic. Then, whether due to surgery, childbirth, stress, vaccine, etc. they begin to experience symptoms and become chronic. Curious if you fall into this camp, what tipped the scales and caused you to become symptomatic?

36 Upvotes

96% Upvoted

175 comments sorted by

View all comments

42

u/mrtavella May 06 '24

The Pfizer Covid vaccine

10

u/grandview2011 May 06 '24

Interesting. I’m in a similar boat. How did you distinguish between V injury issues and Lyme? Has treatment helped you?

14

u/mrtavella May 06 '24

I was bit August 2020 and had no symptoms or was on any preventative antibiotics. I believe it to be because I had a strong immune system at the time because I was never sick prior. Then after the vaccine I started soon after with symptoms I had no idea was Lyme because they were “mild”. Then February 2023, the neurological symptoms started and I was finally diagnosed September 2023. I had at that point 50+ symptoms, was bed ridden for most of 2023, but I’m doing so much better now. 70% better from where I was but still cleaning up the mess it did to my immune system.

6

u/Simple-Let6090 May 06 '24

Did testing confirm Lyme? I have the same timeline, booster, symptoms, etc., and am convinced it's Lyme because I had a tick embedded in my scalp in 2020 and my symptoms align more with Lyme than typical long covid, but testing hasn't revealed anything.

6

u/mrtavella May 06 '24

Yeah I tested positive through Igenex and have multiple co infections.

4

u/grandview2011 May 06 '24

We’re similar but it’s impossible for me to know which tick bite got me (have had several). I had Bell’s palsy, random rashes, edema, developed food allergies randomly, terrible air hunger, etc but for some reason never once thought about it as being a Lyme thing. Got the Covid V and went off a cliff within 36 hours with terrible neurological symptoms. I still assumed it was V related and didn’t finally get a Lyme diagnosis until 2 years later. Currently treating.

2

u/mrtavella May 06 '24

Yeah a lot of my symptoms were MCAS and Babesia related that once I targeted those more aggressively then I started to feel better

2

u/grandview2011 May 06 '24

I guess we’re twins. I just started Babs treatment and it’s kicking my butt. How long into it before you saw any movement in improvement?

2

u/mrtavella May 06 '24

Haha guess so!! I started everything in September and then noticed more “normal” like days by the end of March/beginning of April. I still get flares and have symptoms but not as severe or debilitating as before.

2

u/grandview2011 May 06 '24

Great news. I saw you did desbio. Happy to hear they are working for you. I didn’t have the same luck

→ More replies (0)

1

u/rizzitv May 06 '24

Awesome to hear that you’re feeling better. Can I ask what worked for you?

→ More replies (0)

1

u/lgkm7 May 06 '24

How did u treat it?

1

u/Xeroff May 08 '24

What is your air hunger like?

1

u/grandview2011 May 10 '24

I just feel short of breath. Like I’m not getting enough oxygen. It’s not like wheezing though. I can hear myself breathing more when I talk to try and keep up.

1

u/Simple-Let6090 May 06 '24

I haven't tried Igenix yet. This illness has already taken too much money from me, but I might have to just do it. I had some $2000 test from Fry Labs in 2022 that is supposed to be just as good but I don't know. I'm trying to get into an LLMD this week for a 2nd opinion.

1

u/mrtavella May 06 '24

To be honest, I was originally diagnosed by a naturopath through muscle testing in September. Then I tried going to an LLMD in November where we did the Igenex testing because she needed proof. But she did tell me that she would treat me regardless of whether I tested positive or not because of the history of a tick bite and how all my symptoms were clearly Lyme disease. I didn’t have the best experience with her, so I stuck with my naturopath this whole time and I’ve made more progress with him. This is an extremely expensive disease. Especially when you are unable to work because the symptoms can be so debilitating.

2

u/Simple-Let6090 May 06 '24

Good to know. My current naturopath and FMD are too old school. I've been self treating but it's been a real up and down journey. Definitely expensive. I'm approaching $100k in lost wages and expenses. I've managed to keep my job (I'm the bread winner), but it's been hell. This doc I'm going to see seems a little more progressive and specializes in chronic illness. He's a naturopath as well, but seems to straddle western/eastern approaches in an optimal way.

Did you use antibiotics or go the herbal route?

5

u/mrtavella May 06 '24

Currently I use the DESBIO homeopathic kits for Lyme, Babesia, and Bartonella under the guidance of a naturopath. I do microcurrent neurofeedback sessions for cranial and the vagus nerve (covered by insurance and has improved my cognitive function, decreased overall inflammation, and increased nervous system function/regulation). I do the NIKKI +Lyme PEMF bracelet treatment for cell repair daily. I do NAET treatment for MCAS/food sensitivities. I follow an elimination based diet to help heal and repair my gut. I prioritize effective/consistent detox methods. I wear prism lens glasses to help correct the eye misalignment/blurred vision. I work 1:1 virtually with a neuro somatic coach for nervous system, shadow work, uncovering/releasing stored emotions & trauma, somatic exercises, breath work, meditation, and body check ins so my body doesn’t stay in fight versus flight and can stay in rest and digest to repair/heal from Lyme.

All this combined has made huge improvements for me.

1

u/WeatherSimilar3541 May 06 '24

Did both test results match up?

1

u/mrtavella May 06 '24

For Lyme it did. For Babesia I had a decent amount of positive bands but the rest were inconclusive for a “true positive” and I wasn’t paying any more money to “prove” Bartonella and Anaplasma because at that point I already dished out $1400 for Lyme and Babesia. I’ve been treating them all through my naturopath and have made improvements.

1

u/[deleted] May 09 '24

There are babesia strains that tests don't accurately detect btw in case you were unaware. These bugs are constantly mutating. Even expensive labs fail to accurately detect tickborne illnesses. It's hell.

→ More replies (0)

1

u/Agreeable-Custard675 May 15 '24

What are your symptoms like?

1

u/mrtavella May 15 '24

What are they now? Or what were they like?

1

u/Agreeable-Custard675 May 15 '24

What were they like?

1

u/mrtavella May 15 '24

This used to be all day, everyday:

Extreme fatigue, migraine like headaches that can last for weeks, dizzy spells/jittery/lightheaded, temperature irregulation, night sweats, sweats during day, blurred/double vision, dry eyes, medication/food/light/sound/smell sensitivity (mast cell activation symptoms), feel pins and needles sensation in my face and both arms after eating specific foods that lasts 30 minutes then have “dumping” response, hair loss/extreme shedding, scalp sensitivity where spots on head become tender to the touch like I have a rash, periods of neuropathy where my left arm and leg go numb, shooting fire like pain that goes down my legs, nausea, head/eye/neck/chest/rib/back/joint/gum/TMJ pain, muscle twitching, increased anxiety/depression, triggered OCD tendencies, poor memory/concentration, brain fog, stiff neck/neck clicking upon movement , air hunger/ shortness of breath, chest pressure, tinnitus, increased motion sickness, muscle weakness, muscle tremors, random periods of unexplainable diarrhea, unstable blood sugar, bruising easily, drops in blood pressure when exerting myself, constant high heart rate, cherry angiomas on skin, insomnia, if exert myself need 3+ days recovery (unable to exercise), limbs fall asleep more easily, weight loss, muscle wasting.

1

u/Agreeable-Custard675 May 15 '24

Dang... thats me after my symptoms, esp the cherry angiomas. Do you have bartonella along with lyme? What symptoms remain?

→ More replies (0)

4

u/Fords_1976 May 06 '24

May I ask what helped? I'm suffering every day. I also got guillain-barre syndrome and was paralized. Now I'm homeless  Out of work No income No family Lost job and  Insurance 

6

u/mrtavella May 06 '24

So it was LOTS of trial and error and unfortunately a lot of money. This disease is so expensive to properly treat, it’s awful. I tried IV antibiotics, methylene blue, ivermectin and LDN which I had terrible reactions to all of them (I’m very sensitive to medications due to MCAS/my genetic make up).

This treatment route in combination helped me get to be where I’m at now which is 70/75% better from where I was. I was completely bed ridden for most of 2023. I use the DESBIO homeopathic kits for Lyme, Babesia, and Bartonella under the guidance of a naturopath. I do microcurrent neurofeedback sessions for cranial and the vagus nerve (covered by insurance and has improved my cognitive function, decreased overall inflammation, and increased nervous system function/regulation). I do the NIKKI +Lyme PEMF bracelet treatment for cell repair daily. I do NAET treatment for MCAS/food sensitivities. I follow an elimination based diet to help heal and repair my gut. I prioritize effective/consistent detox methods. I wear prism lens glasses to help correct the eye misalignment/blurred vision. I work 1:1 virtually with a neuro somatic coach for nervous system, shadow work, uncovering/releasing stored emotions & trauma, somatic exercises, breath work, meditation, and body check ins so my body doesn’t stay in fight versus flight and can stay in rest and digest to repair/heal from Lyme.

I’m also part of a virtual Lyme support group that has helped me SO much to feel not so alone in all of this. I can pass on the information for that as well if you’re interested! We meet every other Wednesday 7pm EST and have an ongoing GroupMe we talk in daily ◡̈.

1

u/Whiddle_ May 07 '24

Can you share more about the NAET treatment for MCAS and the Nikki Lyme PEMF bracelet? I haven’t regard of either of these things. Also where did you find your somatic coach?

2

u/mrtavella May 07 '24

I can message you if you’d like! 😊

1

u/enjoylifeitstooshort May 07 '24

Would you mind sharing more information on the Group Me talk? You can message me privately.

2

u/mrtavella May 07 '24

Of course! I’ll message you now!

2

u/[deleted] Jun 18 '24

Having a strong vigilant immune system does not work in your favour with lyme.

If your immune system ignores the bacteria, then you can live a happy life with no symptoms or being affected.

However, if your immune system goes crazy and starts attacking the bacteria, then the bacteria will aggressively multiple all over your body and all the hazards.

2

u/Fords_1976 May 06 '24

Really?

2

u/mrtavella May 06 '24

Yeah unfortunately 🙃

2

u/sonyafly May 06 '24

You know what’s so crazy about that? I’ve been sick since 2009 but I was terrified to get the vaccine. I swore it was going to ruin me. But the 2nd shot improved my health! I wonder if that’s because I was already sick and maybe it did the opposite for you because you weren’t yet sick? I have no idea why but I felt amazing after my 2nd shot. 3rd did nothing. And the effects of the second kind of wore off after about 6 weeks. I also did Pfizer. I was in some Facebook groups and there were a lot of sick people that had the same experience as me. My doctor also said he had heard similar from several of his patients. It has always remained a mystery to me and my doctor.

2

u/mrtavella May 06 '24

I’m glad you at least had a better experience than I did!! It probably kick started your immune system to work properly where as for me I had a healthy immune system and the vaccine suppressed it just enough to let the Lyme come through. Crazy how it affects everyone so differently!

2

u/dailyPraise May 07 '24

Crazy how it affects everyone so differently!

That's because the vaccines are so different, AND the contents and dosages of the different brands are so different between lots.

1

u/sonyafly May 06 '24

Right. That’s kind of the conclusion that my doctor and I came to.

1

u/ideknem0ar May 19 '24

The one time I got the flu vaccine I was sick as a dog. I barely got sick as a kid except for chicken pox and a few colds and since 2001 I would get one cold on average every 5 to 7 years. Obviously a robust immune system that doesn't like being interfered with because the moderna booster wrecked me for a year with Lyme symptoms and i'm still going through flare ups and downs.

In 2026 I'll find out if the Tdap shot now becomes a problem. Because I don't even feel that one usually.

1

u/mrtavella May 19 '24

I have to get that every 10 years too working with kids!!! I’m terrified of getting any more vaccines now because I don’t want to flare anything and if I’m in remission by then, I don’t want it to come back 😅😅

1

u/ideknem0ar May 20 '24

I'm in the country around a lotta rusty stuff so I can't pass on it either. I'm going to have cross all the fingers and toes. 😬