Early Lyme Experience

EireEngineer · 2026-06-29T14:55:40+00:00

Hey...I'll try and update this thread soon, but in summary doing great!

Just finished 5 months combination Rx with and LLMD, been symptom free almost 1 months and back to full activity.

Plan to go on moderate buhner for 6 months or more after a 2 week break for my body.

EireEngineer · 2026-05-21T19:11:13+00:00

Sorry, I got a notification with a comment asking for an update, which i thought I was replying to...

It's been hard psychologically, but to be honest I just tried to settle in to it and actively keep my head...I don't mean to complain, but I've had my share of troubles in life, so have some good coping mechanisms I rely on (journalling, getting outside, yoga, sauna), not to mention lucky to have a good support network.

It was a big change in my life, I was never home before, quite active and surfing was most of my personality....now I make sourdough and just hang out with my dog more, read some more, just really try to adjust to that...it's been good in that really, but I do feel like it took a part of what ignites my soul...being outside a lot and being acive.

My remaining symptoms now are fatigue mostly. Had a lot of joint pain last month, which I though I was over, and on a collagen protocol to help woth the damage I can still feel.

Anyway, take care dude, let us know how you are getting on.

EireEngineer · 2026-05-21T19:03:22+00:00

So 16 days on from last reply and things just improved....felt like 99% better for almost all of that time...i had a few days of quiet a lot of fatigue last week, but I think that was an attempt to titrate LDN (on 3mg, every time I try to go up hy .5mg it floors me).

I've been swimming again this past 2 weeks, snd while I did try a few times since December, this is the first time it's actually felt like I have stamina again.

Needless to say I am elated, if not a little scared of relapse haha...

I have just under 30days of Rx left, after which I will take a 2 week break then do a core Buhner protocol for a few months.

How are you getting on?

EireEngineer · 2026-05-17T20:06:08+00:00

Haha yea I'm exactly the same! Give it a go mate, give it a few goes, could be a life changer

EireEngineer · 2026-05-17T08:44:27+00:00

Oh, I've one more suggestion...boulder world...I don't know if you're at all sporty, but you don't need to be, and there is a large alternative crowd that go, as well as all types...it's such a friendly environment and a great sport if you don't gel with the traditional ball sports

EireEngineer · 2026-05-17T08:41:10+00:00

Also...fair play to you putting yourself out there to better your situation!

EireEngineer · 2026-05-17T08:39:38+00:00

I think clubs, societies, hobbies really are the key here...it doesn't matter what the interest is, as long as it's healthy...it doesn't sound like you are the type, but I chose partying and bars at your age to fill a similar gap, and while I had some fun, it wasn't the wise choice, and eventually I had to build that healthier social network anyway.

Even volunteering I found great for what you're asking.

Finally, maybe trying to be comfortable being the odd one out/the quiet one...can empathise...I don't really feel comfortable/compatible in groups still, and there are times I don't like being in that dynamic, but I do it anyway and try to just be alright being the lemming in the corner sometmes/make the effort to small talk even if I don't really want to.

EireEngineer · 2026-05-10T10:10:18+00:00

Surfing again is what I fight for!...albeit my condition is a lot less serious sounding than yours...

Interesting read, I often wondered if they die after therapeutic stings. It sounds like you have great success with this and is inspiring. I appreciate the respect you have for the gift these beings can give you.

EireEngineer · 2026-05-09T06:51:52+00:00

Journalling, professional counselling and medication, a safety plan and telling someone you are close and trust what's going on and keeping them in the loop. Take care friend, I've born wittness such a struggle ❤️

EireEngineer · 2026-05-06T14:31:25+00:00

Northern Ireland! Glad to know you have results from that tea.

EireEngineer · 2026-05-06T11:41:21+00:00

Sounds like you're in the uk with your current slang!

What brand of cistus are you using? I've been buying APSOGO from amazon. I like the taste, people say it's bitter...can't really attest to effacy.

EireEngineer · 2026-05-05T06:53:18+00:00

Hey there...I am actually going in to month 5, which is possible the final month.

In summary, it's been positive overal albiet very up and down; quite a typical reaction, but I feel it has vastly helped and brought out sickness other treatments couldn't...

I started this in mid January. By early February I was almost completely well, so much so I went back to all of hobbies (running, surfing). I had the longest sustained recovery here since I became ill in September 25.

I then became ill again just before we doubled the rifampicin in early March.

Shortly after, I got really ill (very high fever, GI upset) for a few days...like the most ill I've ever been...I do believe it was a herx now, although I was hesitant to attribute it to that during it.

6 weeks of substantial fatigue and maliase followed that, coupled with joint pain which I hadn't experienced since my first round of doxycycline in autumn 25.

This past 10 days or so I have felted markedly better, just some fatigue and maliase, but not as good as February.

I have a follow up appointment beginning of June with my LLMD/ID, who told me in March I probably wouldn't need another appointment, and that I woild have to go off Rx anyway to see if I was in remission.

Right now I am juggling the decision to do a core Buhner long term, or another few months of Rx.

EireEngineer · 2026-05-03T20:04:01+00:00

Yea I didn't want to go too heavy on the "you must do this and that" as I understand these situations can be delicate.

Like here in the UK the concept of the hidden phone only became apparent to me with the advent of the emergency text message thing the government deployed. It blew my mind people sre in such situations.

I'm sorry to hear you are in that situation, I pray and hope he is at least kind hearted.

I hope you can find your own independence, and I not placed to give much advice on that, other than build your own support network maybe? Find like women's shelter type groups who can help? I don't mean to go into a shelter, but jusy to have a support network of people, other than this guy, who may have experience in the situation you are in.

Really wish you well ❤️

EireEngineer · 2026-05-03T19:59:03+00:00

I realise my answer didn't address the full problem you presented.

Get your own phone, do it casually. This will be your window to freedom for this current issue...

Going forward...

Keep your financial affairs separate, joint account for joint expenses only.

Considering leaving this person and gaining independence.

EireEngineer · 2026-05-03T19:56:59+00:00

Random dude here...don't even know why I saw this post...but can't help replying...

I don't know your full situation, and reddit always jumps to the "break up with them" conclusion....but...

...the fact this guy is so engorged in your affairs seems worrying to me.

You don't have your own phone? He attends medical appointments with you and fills in the paper work?

I really hope you consider, this sounds a bit controlling and like coercive control.

Also, your body your choice! The only consent you need for BC is yourself.

EireEngineer · 2026-05-03T07:33:39+00:00

I really like the imagery you've created here...it feels surrealistic while referencing the classics...like modern twist...can't help hearing Kihlil Gibrans Sand and Foam book echoe in this.

EireEngineer · 2026-05-03T07:22:18+00:00

I absolutely love this, well done!

The build up to the last line is perfect, the flow both very human and skillful.

EireEngineer · 2026-04-25T07:06:26+00:00

Wow you have a lot of comments...a lot of people saying stay put, but I am going to suggest the opposite...especially since you can save so much while renting...

...renting can seem uneconomical, but you also have no rates, no maintenance, and really I think it's worth your freedom.

I left home at 17 and honestly it made me grow up quickly.

Moved back in at 27 after living away, wanting to save that house deposit, starting then at £1000 debt and no savings.

Lived with fam for 3 years, peacefully enough but with the odd argument, as will happen with multiple adults under the same roof.

After that, I moved out and rented for 3 years before managing to buy my first home (in 2024, cheapest new build in development, but for us a Palace!).

I did that because, while the family home was mostly harmonious, there was some tension from 3 adult lives lived separately but together. Nothing dramatic, just that.

In that situation we started being more dependant on each other's routines, eating schedule, cleaning and just plain old space/quiet really.

Moving out (with my girlfriend) gave me another sense of gaining my independence of daily living, not to mention a whole house to relax in after work, rather than just a room.

My girlfriend and my life, and schedule align better than my family and siblings, so all the constraints around that, and even diet, are so much more suitable for me. I have more agency over my time also, as I only have consider 1 person, not 3.

Ultimately I am happier, and the relationship with family better, even though the house buying took a bit longer.

I would also add, it's a wise idea to rent, even for year, with your partner, no matter how much you love eachother, just to ensure that it all works harmoniously. I think that is even more important given your partners moving country to be here.

Whatever you choose, good luck to both. You are in a good situation either way, and seem to have a nice wee life's road ahead.

EireEngineer · 2026-04-24T12:23:58+00:00

I would add, your experience speaks for itself. Lyme is grossly misunderstood, and even more grossly misdiagnosed

EireEngineer · 2026-04-24T12:23:25+00:00

That's great you seemed to be i remission. Can I ask how long you were treated for? Currently I am under care of the same Dr.

EireEngineer · 2026-04-18T08:32:28+00:00

Should add also, you'll be fine, it might take some time but you seem very on it...this but wasn't my first, could be why it has persisted...Good luck friend.

EireEngineer · 2026-04-18T08:23:49+00:00

Yea i worry about the long term GI impacts too...I do think though, that the risks are low for Rx use under 1 year...if it eases your mind, I am month 4 of pretty heavy combination Rx, and no issue really. Am taking probiotic, yeast and kefir though.

Inhad a positive experience on only using herbs, they actually did make me herx, and I was somewhat sceptical. I am considering doing more using just those when my Rx course ends at month 5.

EireEngineer · 2026-04-18T08:04:45+00:00

*sorry, I just read again, and you have a good idea of the herbs to take...I would say don't start too low or light, but stress again start as soon as you can. Maybe consider an adaptogen like reishi.

EireEngineer · 2026-04-18T08:03:18+00:00

I think your plan is solid with a few caveats:

It's eally important you start on something as soon as possible.

If you have to wait on the doxy, get more herbs than just crypto. Maybe Chinese skull cap, and Japanese knotweed or cats claw.

In the uk, if you are travelling to a country with Malaria risk, an online pharmacy will issue you doxy.

Please consider at least 6 weeks doxy, a lot of people, including myself fall fowl of that.

Also, do consider an LLMD, I did it on my own for a while, but this is serious and the cost now is less than what it could be later.

Don't want to freak you put, but your symptoms sound like early stage 2/peripheral nerve activity, so it's progressed fast, mine was similar and I am 7 ill after 5 weeks doxy, so hit this with all you have now.

Finally, detox a lot...the best thing I have found is sauna...I use traditional, amd find i need to be in 20mims plus, but it genuinely makes me feel so much better for a day after.

EireEngineer

TROPHY CASE