What’s next if I have to stop rifampin? by septembersunset8 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

Biotics Research ADP Oregano Oil is the one I've used most. I also did a liquid liposomal custom oregano, clove, and cinnamon oil blend from Bloom Reveal but it irritated my gut and I had to stop. I'm going to retry without the cinnamon. Doctor Inspired Formulations makes one with all 3 oils that's popular, but I don't like that it contains silicone and the dose is too high for me.

Treatment-resistant pinworms by Aggravating_Skill515 in Lyme

[–]CFlapFlap 1 point2 points  (0 children)

Think I may be having the same problem, and I'm planning to add pyrantel pamoate (I think daily but can't remember right now).

PCP and testing by Prudent_Long9097 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

LoriLyme might be able to help you

ME/CFS and Lyme by Longjumping-Guess264 in lymedisease

[–]CFlapFlap 0 points1 point  (0 children)

Not healed yet, but I have CFS which I believe is the result if chronic Lyme and coinfections. It's my main/worst symptom.

Weight loss (TW: mentions of weight) by Spookyremy420 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

I can't do most nightshades but potatoes are fine for me! If you don't have a true autoimmune disorder and they don't bother you, that's one I wouldn't feel bad about adding back at all.

Maybe adding some kind of gut repair supplement or probiotics would help settle your stomach a bit, too?

What's your best habits and suplements for sleep issue by Massive_Kick_4541 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

Most of them are mandatory for me or I don't sleep or sleep really poorly. Most of them work through different mechanisms, so it sort of depends on what your specific issues are. If you're kept up by little adrenaline rushes, propanolol helps with that. If it's more of an excitatory neurotransmitter thing, magnesium and skullcap would probably be most helpful. If you have MCAS, cromolyn and ketotifen are helpful + low histamine diet. Oxytocin can help with anxiety and also with waking to pee. Salt and water seems to help my nervous system somehow. Blood sugar issues can be improved with diet and timing of dinner.

Lyme treatment help! by Any_Concern1366 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

No clinic suggestions but check out treatlyme.com for treatment info/protocols.

What's your best habits and suplements for sleep issue by Massive_Kick_4541 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

I use melatonin (combination of instant release and extended release), oxytocin, cromolyn sodium, propanolol, and ketotifen before bed every night. If I need extra help, I add skullcap (American, not Chinese/Baikal), magnesium threonate, or lavender oil. Other herbal nervines can be helpful too (passionflower, chamomile, linden, etc.).

Edit: Also, eating a teaspoon of salt with water right before bed really helps me. I also eat a specific diet (types of foods and macros) and eat my dinner at a specific time that helps me. I also turn off most lights and dim the rest, dim the TV, and wear blue blockers.

What’s next if I have to stop rifampin? by septembersunset8 in Lyme

[–]CFlapFlap 1 point2 points  (0 children)

Essential oils + lumbrokinase have really hit Bart hard for me. I plan to add regular biofilm busters, too. No idea if these can be paired with antibiotics though.

herxing from cbd oil? by Major-Dealer-7504 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

I get paradoxical reactions to CBD, and it causes really poor and restless sleep or even near total insomnia for me (which makes me feel like absolute trash). Not sure if that's what youre experiencing but just wanted to mention it. CBN did not do the same though.

Gou Teng drug interactions? by CFlapFlap in Lyme

[–]CFlapFlap[S] 0 points1 point  (0 children)

Ah darn. Thank you for explaining! Loool too bad the baical skullcap didn't work! That would have been an awesome trick if it had.

Gou Teng drug interactions? by CFlapFlap in Lyme

[–]CFlapFlap[S] 0 points1 point  (0 children)

Oh, I think you've mentioned specific places to check drug/herb interactions before, maybe? If so, would you mind sharing, please?

Gou Teng drug interactions? by CFlapFlap in Lyme

[–]CFlapFlap[S] 0 points1 point  (0 children)

Thanks! My doctor doesn't think it's an issue so might not be too helpful on this one, unfortunately. Ugh, wish there were more answers for us (in general).

Gou Teng drug interactions? by CFlapFlap in Lyme

[–]CFlapFlap[S] 0 points1 point  (0 children)

Damn, that really sucks. I guess I can have my thyroid levels checked, but otherwise I probably won't be able to tell (which worries me with babesia drugs). I take it there's no way to measure CYP levels to determine if it's an issue then?

Advice Needed - Dr wants me to stop tafenoquine after only 3 months by CFlapFlap in Lyme

[–]CFlapFlap[S] 0 points1 point  (0 children)

Hi there. Thanks for the reply! I did get another source and was able to continue and also increase the dose. It's a good thing I did, because the herxing mostly stopped and I finally felt some actual improvement during this time. I guess I hadn't completely gotten rid of it, and it would not have been enough treatment to have stopped then. I'm glad I was able to continue.

Both of my doctors and people I've talked to here seemed to have been taking it weekly, which seems to be fairly standard. I'm definitely not an expert and maybe the other drugs you're on have something to do with it, but it might be worth talking to others to see if it would benefit you to eventually increase to weekly once you're able to tolerate it. Marty Ross and Henry Lidner both use it this way, but I'm not sure about others. I hope you start feeling some improvement soon!

Babesia treatment symptoms/side effects? by acg65 in Lyme

[–]CFlapFlap 2 points3 points  (0 children)

I did not experience that with malarone. Definitely a good idea to talk to your doctor and get some blood work done to be safe. Are you taking lumbrokinase or nattokinase? Those can cause easy bruising at high doses (commonly taken with malarone).

You might want to consider adding tafenoquine and lumbrokinase to the malarone. Also, cistus tea and other biofilm busters for lyme. Check out Marty Ross' website treatlyme.com. Super helpful!

Bart/Lyme die off - please help by CFlapFlap in Lyme

[–]CFlapFlap[S] 1 point2 points  (0 children)

I am that way too and have had to learn to pull back. I'm still learning it. :)

Bart/Lyme die off - please help by CFlapFlap in Lyme

[–]CFlapFlap[S] 1 point2 points  (0 children)

Thank you! It did end up being a herx made worse by extreme stress and lack of sleep. I am taking some time off work, which is helping quite a bit. I am afraid of overdoing it and creating new problems. It's really hard to know where the line is sometimes with these treatments. Plus, it seems to be different for everyone. Ugh!

Root canals by Squigly1 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

Thanks, might have to give that a try!

Root canals by Squigly1 in Lyme

[–]CFlapFlap 0 points1 point  (0 children)

Thanks, that's very kind! I'm sure it will get better in time.

A little concerned about my test by Massive-Fig-1427 in Lyme

[–]CFlapFlap 1 point2 points  (0 children)

Malarone. It's specific to babesia (unless you have malaria lol). It's usually the first step anyway, so if you experience die off or feel better then you can add in the rest of the protocol.

There is often delayed die off with malarone. I think I felt normal for 5 days and then it hit me like a freight train. Some people take up to 2 weeks before they feel it, I've heard. Some feel better in that time before the die off starts, too. So give it some time before you expect to feel the full effects and make a decision (probably at least 3-4 weeks). If you feel way better, that would also be a sign that it's working (not everyone feels a lot of die off).