Lumbrokinase Herx for 8 days?

Hello, first time poster but have been lurking this forum for a year gaining very useful information. I partly feel I just need to vent but also just receive some advice. I'm going to try and tell my story.

I'm a male 29, and three years ago I fell very ill, very suddenly. I was in and out of the doctors and the only diagnosis I got was graves disease, I went on medication for that and felt absolutely no relief.. My mother suggested I get the western blot test because she had Lyme's disease and said she thought maybe I did too when I was younger however as I grew my symptoms resolved.

So I get the western blot test for Lyme, babesia and Bartonella. All come back negative and in my head I move on.

At the start of this year, I got so desperate, it felt like nothing was helping me and I was just getting worse. My main symptoms were as follows:

-POTS.
-high blood pressure.
-peripheral neuropathy.
-strange and different rashes that would come and go, some have stayed for years.
-severe discolouration of hands with livedo reticularis when standing.
-heart palpations.
-air hunger.
-headaches.
-disrupted sleep, waking up at three am on the dot.
-hard to explain this one but on my worst days, I feel like my blood is poison. It prickles and tingles and just feels awful. Trying to explain this to naturopaths and doctors Ive always been told oh that's just anxiety or your thyroid. But my gut instinct told me it wasn't.

In my research of these symptoms I would always land on pages to do with Lyme's disease. So in my desperation I looked up some natural treatments and just thought I'll try one thing and if it improves one symptom I'll know I'm on the right path.

I bought the core protocol and started slow and steady with the herbs, I could handle most of them except JK at the start, this brought on a strong reaction, heart pumping fast and general malaise. Which I discovered to be a Herx(could of been allergy but my gut told me it wasn't). After the Herx had subsided I noticed a marked improvement in neuropathy and overall gaining of strength and energy.

So entirely based on the herxing and subsequent relief I self diagnosed a little bit. I say this because I'm in Australia and there is little to no help for Lyme's disease here as the government says it's impossible to contract and doctors literally have to treat it in secret.

So it's been nine months since the core protocol and Ive since expanded my protocol through research, online and book reading.

Anti microbials
-cryptolepis(this caused Herx).
-sida acuta(this caused Herx and quite large with the cryptolepis).
-houttuniya(this didn't do much to me).
-andrographis(no Herx).
-cats claw(no Herx).
-Jk(big Herx at first but since no issues).

I take a detox regime, liposomal gluthiaone, milk thistle, chlorella, collagen, calcium ascorbate and do Epsom salt baths, yoga every day.

Based on my the microbials that made me Herx, I sorta think along the lines that a coinfection is more causing my symptoms, can't really say which one.

My health was improving, slowly but noticeably, I even went back to work part time. I got up to the point of no longer herxing at my current dose and about a month ago experienced a whole week of literally 0 symptoms. It was incredible, I remember just crying in my car on the way to the shops because everything felt so easy. I thought I was done but boy was I wrong.

Feeling good and strong I added lumbrokinase as I know sticky blood is an issue for me. I took it for about seven days straight and it has brought out a very delayed and drawn out severe Herx in me. I stopped taking the lumbrokinase eight days ago, and over the course of those eight days I've gotten worse and worse. Toxic feeling, strange rashes come and go, headache, pots symptoms have returned, sob all of it.

I'm feeling terrified Ive undone the last nine months of progress.

I'm sorry for the long post, I really haven't got anyone to talk to about this except my partner and my mother. I'm mentally exhausted from all this as I'm sure everyone here is but I guess I really just wanted to reach out and make some sort of contact with someone who understands.

lumbrokinase is one of the strongest biofilm busters where Lyme, Bart and Babs are protected. This caused a release of the infections and causes a flare in symptoms that may have reduced over your treatment protocol. Maybe cut back a bit on lumbrokinase to every few days to see if this herx will stabilize. Maybe try serrapetase or another biofilm buster for a while, and then build back up to lumbrokinase.

hello and welcome - and congratulations on your first post!

i also have lyme and bartonella and can relate very much to your experience

well done on working out your own diagnosis, self treating and getting your symptoms under control - that's is no mean feat - and the fact that you are able to make this kind of progress bodes very well for recovery

i have also been treating with mainly herbs, in fact many of the same ones as you are using and making progress - not quite to the point of being able to go back to work yet - but not far away.

in terms of herx type reactions
sida and cryptolepis were some of the strongest for me also
houttuynia was also strong for me - but the dose is much higher than the others - approx. 3x as much for similar reactions - this is in line with Buhner's dosing guide so makes sense

having managed to definitively diagnose myself with bartonella via Microscopy recently - i also experimented lumbrokinase - in an effort to address Fibrin deposits and biofilms that were so prevalent in my blood in the microscopy slides - see my microscopy thread for more on that if its of interest - here
https://www.healingwell.com/community/default.aspx?f=30&m=4268122&p=4

i had a v similar experience to you - a sudden and long lasting flare of symptoms that took around 2 weeks to fully settle down.

in my case i was aware lumbrokinase is a very strong fibrinolytic enzyme ( a fibrinolytic enzyme is an enzyme that breaks down fibrin - one of the clotting proteins in the human body that is typically dramatically over stimulated in bartonella infection ) - and also has lytic activity against some of the proteins found in bacterial extracellular matrix ( these are the proteins that bacterial build biofilms from - something different to fibrin)

for this reason i had first taken a weaker fibrinolytic agent - Bromelain - for 6 weeks before switching to lumbrokinase.

i had worked up to 2x 3000gdu of bromelain per day ( 2 doctors best brand capsules) - before trying 1x 360,000lumbrokinase units of lumbrokinase ( a single Doctors Best brand capsule )
based on the strength of reaction - i would say the lumbrokinase capsules are 4-8x as strong as the bromelain per capsule - it was too much for me and i had to stop after 3-4 days.

it seems - this kind of reaction is not uncommon - even for people with lyme etc who are part recovered or near fully functional.
one of the best known LLMD's Dr J who some of the members here see - has described giving biofilm agents to some of his higher functioning patients during his early trials of biofilm agents - and being inundated with scared and confused patient reporting dramatic flares of symptoms - so he now ramps these up more gradually - but includes them in all his protocols.

perhaps take a break from them till things have settled and then start either a less strong one - like bromelain - or try opening the lumbrokinase capsules and taking only a fraction at a time and gradually build up at a rate you can tolerate

this worked with bromelain for me - initially i could only tolerate a 1/2 capsule every other day - but i got to 2 capsules in around 2 months and saw dramatic improvements in the fibrin / biofilm deposits in my blood in over that time.

a good deal of your symptoms are a good fit for bartonella - or something v similar

-POTS.( its a form of autonomic disfunction typically associated with auto-immune neuropathies from bart and lyme)
-high blood pressure. (lyme and all co-infections can do this - but bart is one of the key ones as it infects the cells that line the blood vessels damaging them - and also creates teh fibrin deposits as mentioned above - which restrict blood flow)
-peripheral neuropathy. ( lyme and bart seem most highly associated )
-strange and different rashes that would come and go, some have stayed for years.(v typical of bart)
-severe discolouration of hands with livedo reticularis when standing.(a typical bart sign - poss also rickettsia )
-heart palpations.( defo bart - poss lyme and babs, brucella, ricketsia etc also )
-air hunger.( typiclaly more associated with Babesia )
-headaches. ( all of them)
-disrupted sleep, waking up at three am on the dot.( again all of them disrupt sleep i have had this early awakening also)
-hard to explain this one but on my worst days, I feel like my blood is poison. It prickles and tingles and just feels awful. Trying to explain this to naturopaths and doctors Ive always been told oh that's just anxiety or your thyroid. But my gut instinct told me it wasn't. ( sounds like it could be neuropathy related-or sticky blood related )

I've herxed for months after taking valproate, but that's kinda a special case because it sticks around so long and kills the bacteria slowly. The bacteria die, and then the biofilm or whatever breaks down slowly over months. I wasn't taking lumbrokinase at the time, and didn't want to because I was afraid it would just make the detox more severe.

If you herxed for nearly 2 months, that would be a surprise since most antibiotics are gone after a few days. Does lumbrokinase stay in the body that long, or were you taking something else besides lumbrokinase?

Thanks so much everyone for all the Information and replies.

It's very interesting alot of you have suggested based on my symptom picture that it could be Bartonella as I was operating under the impression it was more likely Babesia. But that was just based on my limited research and I believe you guys would be more knowledgeable then me.

I did try houttuniya but didn't feel much of a Herx on it so I assumed Bartonella wasn't the issue.

I've finally gotten in contact with a naturopath in Australia who specialises in Lyme like illnesses and I gotta say it was a massive relief talking to her and getting it off my chest. And she also agreed based on my symptom picture and the reactions Ive had to herbs that it is likely I have Lyme.

It's been a week since I've posted this and I haven't had any more lumbrokinase, Ive still been taking my herb protocol but in agreeing what WalkingByFaith said I don't think I can resume at my usual dose as when I take it I almost immediately feel very strange, hot flushes like a fever and my skin crawls and just overall lousy.

I have had a few decent days since but I'm still not back to where I was. But even on my bad days I can do my usual 30 min yoga and hour walk with my dog. That's about it though. Feeling a great deal more anxiety and still not sleeping great.

Is very hard to deal with mental of it all. I suppose I should be glad but for the last nine months even though I was back to my old self I had the progress, and most importantly the hope that I was on the right track, and while I know I still am it all takes a massive hit with a moment like this.

I have such high respect for anyone that grinds this out with all the research and all the things that have to be done to overcome it. True warriors.

Thank you all for the kind words and advice.

Hawaii5O said...
Did you get tested for the different forms of Bartonella as well as lyme? I was negative for Lyme but positive for Bartonella Henselae. I had shooting pains all over my body at one stage, numbness and cold sensations in my legs and intense stomach and face pain. I am still recovering, but the unrelenting shooting pains are thankfully well behind me now. But it has taken over 5 years to get me here, and the committment to taking herbs and other antimicrobials on a long term basis after antibiotics didn't work for me. I am in Australia too and testing was performed by Geelong Rickettsia Labratory.

Welcome to the forum, Hawaii50!!

Do you have a LLMD in Australia?