Need encouragement

Guys I relapsed six months ago for the fourth time and I'm so burned out.

I did abx for four months and couldn't handle them so I switched to a modified buhner Rawls about a week ago. I am one of those super sensitive herxy people that has a hard time tolerating anything.

I'm just really struggling. I'm a ten year lyme vet and I'm doing everything I can think of. Just need encouragement

No I've never gotten symptom free just functional again. This time around I tried to use the antibiotic combos that have worked in the past but can not tolerate them at this time. So I'm using herbals as of a week ago. I'm just super sick can't tolerate hardly any rxs living at home it's just tough. Really tough.

Keep hanging in there! I swear this journey can feel like the myth of Sisyphus. Or chipping away at an endless mountain (pathogens representing mountain)... but persistence pays off, it can take a lot of trial and error, and what works can be a bit different for each and everyone of us.

I'm like you, unfortunately very herx sensitive. It is grueling and a marathon, the key is finding the pace you can manage and this often involves lots of tinkering. If you push too hard it will make the possibility of potential burn-out greater. I hope you can find a pace that works for you. I wouldn't hesitate to lower dosages. If I push too hard it traps me in a herx-vortex and it burns me out hard, in those situations I feel trapped because I'm smothered by fatigue/symptoms, which is psychologically tough. That's usually a sign I need to ease up on the antimicrobials. When I do ease up it allows me to catch my breath and center myself, allowing me to regain my physical and mental strength and helps me regain energy and motivation to keep pushing forward.

Hugs of encouragement.

Carumba is right.

Did you have testing for things like coinfections, viruses, mold, candida, leaky gut, parsites, dental issues, and metals?

Also, consider your adrenals and thyroid.

Sorry for overwhelming you, you probably know all this, but it's easy to forget these puzzle pieces of healing.

Keep us posted on how you're doing😊

My heart goes out to you. Sending positive thoughts and vibes your way that you rid your body of this soon!

I don't have any advice, just wanted to say I understand. This disease is so cruel. I'm sorry you are still dealing with it.

DJF2005 said...
Thanks everybody and yeah I pretty much address everything. After all this time I lead my doctor which is also exhausting. I do think I need to be less aggressive with the herbs. It's only been a week on them and I always rush to get on things and start the herx vortex that is so hard to then get out of. We keep moving forward. There is no alternative. Thanks for the kind words. I really really appreciate it.

We do have to remember that this is a marathon, not a sprint to the finish line. Rushing things has never worked out well with these infections.

I would encourage you to lower your doses a bit and increase your detoxing. This should begin to ease your symptom severity. Be sure to use some binders for a while to lower the toxin load more quickly.

You can lower your doses up to half for several days without hardly changing the course of your treatment, then ramp back up slowly as you can tolerate it.

I've been in horrible, long term herxing, and it took me many months to recover from it, so pushing your body harder than it can go only leads to longer breaks from treatments.

Hang in there!!

You are up on those doses in just 8 days? If so, then you most definitely are on too high of a dose. Please, cut those doses in half and continue to increase your detoxing and using binders for a few days. You may still need to drop one or two of those for a few days too, depending on how bad your herx is.

Herxing is a minor cytokine cascade - a larger cytokine cascade can turn into a life threatening situation, so we do want you to be very cautious with this!

So, those are the doses of each pill? If you don't want to open them and save the bit that you don't use immediately, yes, you can cut back to once a day dosing - but you may still experience the herxing after that one dose, just so you know.

You can save the half of the contents of the pill in some little air tight container, and then add it to juice or unsweetened apple sauce to take it later too.

I think that's what I'm gonna do. I'll restart with jk and give it a week for each herb. Does that sound reasonable?

Hi DJF. I won't speak to the herxing issues, as others have done that well.

But, I just wanted to add to the chorus of support here. It's rollercoaster ride, and we're all on it with you.

Hold tight, and keep your head up. A friend of mine had Lyme for 20 years. He actually grew up in Old Lyme, CT. He ultimately treated with antibiotics for 3 years with an MD in MA who is now retired. He is healed and has not relapsed in 8 years.

I share that story with you because I know he felt he would never get better. And, it was a long, long road. He would stop his medications, and relapse, and start again. But, he finally got there. You can, too. You can get better and sustain your health.

One question -- have you ever sought a second opinion? That is, have you been working with the same LLMD for the duration of your treatment?

I have seen 3 LLMDS. While I have a long way to go yet, the third is really helping me turn a corner.

Stay strong -- I'm pulling for you.
KB

DJF2005 said...
I think that's what I'm gonna do. I'll restart with jk and give it a week for each herb. Does that sound reasonable?

Try cutting both herbs to half doses...see how you feel. And of course detox like crazy.

Give that half dose a few weeks...then raise one herb at a time...and since those aren't drops...it's not as easy to titrate up. So, when you raise one herb...don't raise the other herb for a couple of weeks....and only if you're doing well.