tingling limbs from lumbrokinase?

i think it could well be herx related

lumbrokinase was crazy strong for me and drove all the usual herx like symptoms i typically experience

disturbed sleep, fatigue, sore head etc

i am not sure exactly why - but here are a couple of possibilities

1- ischemia reperfusion injury
people with lyme and especially bart tend to have micro-clots and fibrin deposits blocking up their microcirculation and reducing oxygen and nutrients into tissues
some form of mild reperfusion injury might occur as one dissolves some of this fibrin with lumbrokinase or similar fibrinolytic enzymes

2- releasing pathogens and fragments from fibrin deposits -
this i have seen under the microscope after adding 6 weeks of bromelain( another fibrinolytic - but not as strong as bromelain ) to my regime - fibrin deposits were much reduced - i also experienced herx reactions during this time and had to go very slowly with the dose ramp up
by dissolving fibrin and releasing pathogens from their protected niches - the immune system is now able to get at the microbes - and when it does this it releases cytokines and you get inflammation in the system as it mops up microbes and fragments of extra cellular matrix

or perhaps seven a combination of the above

my advice would be to use the fibrinolytic alongside suitable abx or antimicrobials and go slow - ramping up at a pace your body can tolerate

Thanks both - yes I've been at my full dose of rifampin and clarithromycin for a couple of months now, started in september and got to full dose in december. Also using ADP oregano in terms of antimicrobials. I would like to be on another herbal, knotweed or cryptolepis perhaps, but I can't seem to tolerate them anymore (have some older posts about this). But yeah I feel pretty good about the antimicrobials I'm on otherwise. Doing milk thistle, glutathione, broccoli sprouts for sulphuraphane, infrared heated yoga (less intense than sauna but makes me sweat and is gentler), epsom salts baths, lemon water, colesevelam as a binder.

Thanks for sharing that dosing suggestion loski, good to know. I was definitely just going to start with one capsule, I wondered about every other day even, for the first week.

Interesting in terms of repurfusion injury. I know that is a huge reason for foot pain in bart, but I never thought about how breaking up fibrin could possible contribute to a shorter term worsening.

morningstars:

Which Lumbrokinase product are you using? Is it Boluoke from Canada RNA (as loski01 is using), or something else?

I'm asking for my own curiosity, as I recall Stephen Buhner (R.I.P.) writing about Lumbrokinase and him mentioning Boluoke specifically. (He mistakenly spelled it incorrectly, as noted in his following remarks.)

"Note: some people think that earthworm-based forms of lumbrokinase are better than its synthetic, chemically produced forms. The best of these seems to be Canada RNA brand but it is very expensive; the dosage is half of the synthetic forms." Source

"buluoke – the real stuff from earthworms, not the cheap stuff . . . you can get a powdered form that is much cheaper than the capsules made in Canada..." Source

"Lumbrokinase, Buluoke only. IPF sufferers almost always have heavy sedimentation rates. It has to be addressed. Mine are bad. Additionally, these substances are antifibrotic and will help reverse and reduce the fibrosis in the lungs. I take 3-6 capsules a day. Expensive." Source

On two occasions, I e-mailed Stephen and asked if he would share the name/brand of the "...powdered form that is much cheaper than the capsules made in Canada." Unfortunately, I never received a reply. Given that he was battling Pulmonary Fibrosis, though, I knew he was focused on more important tasks.

Though I can't recall where I read it, I do recall the claim that some manufacturers allegedly use "ground-up earthworms" and others use earthworm extracts. Supposedly, the former is the cheaper and less effective, while the latter is more expensive and more effective.

It's probably unlikely that manufacturers would literally grind up earthworms and that would be the sole component of a Lumbrokinase supplement. I wish I could remember where I read the original claim, so I could contact the author and request them to cite the source of their claim.

Regards,
Dude

Hi Dude,

Yes I am using boluoke. I was aware of it being a part of multiple LLMD's protocol, balked at the cost and put it off for as long as possible. I just graduated university and haven't been able to work full time nor receive disability or other support, so it was not a lightly made decision. However, after having been undiagnosed for at least 20 years, and knowing how stubborn bartonella is, I just wanted to go for it and try a bottle to see. I might try another brand after - I think allergy research group is the other one Dr. MR sells, and says he doesn't notice a difference in effectiveness. I'm in Canada so I haven't looked into whether or not I can get it.

I have seen the discussion around purity and effectiveness though, I think I heard someone talk about how you can get lumbrokinase through Traditional Chinese Medicine practitioners and it's effectively the same thing (might have been what Buhner was referring to?), but frankly I just want to try whatever the top doctors are doing. I think part of it for me too is like, if I tried a different version of any supplement and it doesn't work, I would always wonder, if I just got the one that the doctor suggests would it have worked? So I'm trying to waste less time and money (maybe) by just doing the standard stuff and making choices from there, if that makes sense.

I'll have to revisit Buhner's book, when I first read it I was at the very beginning of all this and probably totally glossed over that part. I took a look at the Canada RNA FAQ's and found this interesting piece of info:

"Preliminary data shows that Boluoke® could reduce low-shear whole blood viscosity up to 38% in 4 hours (using Rheolog® machine by Rheologics). However, in some patients with high baseline whole blood viscosity, the viscosity at 4-6 hours after oral dosing may increase temporarily (possibly due to increased generation of FDP & D-Dimers). If the patient continues with the dosage (1-2 caps tid), the viscosity should come down nicely at 24 hours."

It sounds like they are saying if your blood was highly viscous to begin with, you could have a temporary increase. I'm not a doctor or scientist but with this info it seems plausible that it could explain why I had an increase in tingling overnight because of poorer flow. I only took one capsule that day, not two (which they say would help to bring down viscosity).

I will keep you posted on how it goes. I didn't take a capsule today as I've decided to do every other day for this week, and with the help of some warm yoga I did start to feel better in the afternoon (about 24 hours after having taken the first pill).

Hey, morningstars:

Thanks for your prior note. I meant to respond the following day, but it slipped my mind. I'm glad you read through the Boluoke F.A.Q.s -- that was my hope and why I left some "teasers."

Anyway, I wanted to say that I'm happy to hear that you've had some improvement in the tingling. I hope you remain free of the issue. I look forward to any other updates that you share.

Wishing you the best,
Dude

Okay so it's been just about 2 weeks since I started lumbrokinase. The first day I had what I described above, nightmare/sleep paralysis/increased tingling, and then it eased off a bit and I actually had a good 5 days where I had really low pain days. It was awesome - I never really describe my pain as diffuse body-wide/unspecific pain (like how they describe fibro pain), but having those days made me realize that's pretty much what I have 24/7, I just didn't realize it. I would always say I'm just constantly uncomfortable.

Anyway, in the past I've herxed around day 7 of any new additions to my protocol, so I was waiting and that passed by. I had whispers of herx stuff from the start - some joint pain, some head/neck pain, possible chills around day 8, but nothing major until today (day 13), when I felt pretty bad overall.

The difference today is that I took lumbrokinase in the morning on an empty stomach, rather than in the afternoon on an empty stomach (I was going to increase to two capsules a day starting today, so I took it earlier for spacing). I have very slow motility, to the point where I have been on prescription motility agents for months now (prucalopride/motegrity is a miracle drug, by the way), but even then, I suspect that my digestion is just sluggish. So I wonder if taking it in the morning made it hit harder because I had been fasting much longer. So today after that dose I very quickly got really bad TMJ pain and neck pain, a headache that was kind of like a pressure band but more one sided, knee pain, shivers, some weird nerve stuff. I took glutathione and it helped, then I went to infrared warm yoga in the eve and feel almost completely better.

Anyway, the main update I wanted to give in regard to this is that I've noticed that while my initial tingling and nightmares have sort of backed off (haven't had anything as bad as that first night) I have consistently been waking up suddenly at various times - often in the middle of the night or early am, and then again in the morning, and immediately severely anxious/thinking of impending doom. Like, I'm barely awake and able to process being awake before I'm so anxious, it's not really my brain coming up with this stuff if that makes sense. I have also had some nightmares and waking up with asleep limbs, but not as bad as that first night. The waking up at unusual times is quite odd for me though. Historically I've had trouble falling asleep/feeling sleepy (histamine, probably) but once I'm asleep I'm usually good, I rarely would wake up.