Topic: prescribed biofilm dissolvers- is this for real???
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
My latest and last "LLMD" did not prescribe a single antibiotic for me. (Before i say anything else, i will not disclose his name, even in PM's).
He told me my chronic Lyme had gone on for too many years for me to hope I would ever get well, that the best I could hope for was to, in essence, treat secondary symptoms and regain some ground in terms of general overall health.
So, no antibiotics, just herbs, and most puzzling of all- a specific, VERY expensive "med' that supposedly works on biofilms.
If we're at the point where TBD biofilms can be dissolved with a med- I am thrilled!! But... unless i've missed a huge breakthrough in the past many months-- -- which is possible--- meds for biofilms seems downright quacky.
So, the question- --has anyone had success with this kind of med?
thanks, dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
posted
Could you at least tell us what the med is that is supposed to work on biofilms?
I do believe that lumbrokinase, wobenzyme and monolaurin from coconut oil will all work to some extent on either biofilms or excess fibrinogen. Both issues can help bacteria etc hide. And EDTA may work on biofilms if they are composed of calcium or magnesium -- I think the jury is still out on the exact makeup of biofilms.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Grapefruit Seed Extract (GSE) can help address the biofilm. So can some other things, just as some address the cyst form.
If biofilm is dissolved, or if the cyst form is broken open, spirochetes will circulate - and that can can cause damage if left unchecked.
You'd better have an anti-spirochetal formula at the ready. I do see you did say, herbs, but they'd better be very specific to lyme and not just a support supplement.
Now, some herbs can be very good at addressing infection. Allicin is one of those. Some herbs are just support, though.
I do not share the opinion of that LLMD. There have been many with decades' old lyme who have achieved a solid remission.
I saw one LLMD, a very long 6,000 miles for that round trip, to be told I'd be very ill for the rest of my life. I don't accept that.
Sadly, he was one of the few who took medicare so I had little choice. But, it was such a waste and cost me airfare and lodging.
He said I was the 2nd sickest lyme patient he'd ever seen but had little hope that I'd ever be much better. I was devastated.
He did not believe in treating with antibiotics more than short term. So, techinically, he may not be a LLMD but he was on a list that I'd gotten. I'd also read an article about him and it sounded like he'd treat completely but, by the time I got out there, he'd changed his ways. The best that could be done would be to mitigate the toxins.
While that part is important, it is not enough and I still fight to believe that a good remission is possible if one can have the right tools.
If you can, I'd sure find another LLMD with a more positive track record and a more positive attitude and one of being the ultimate detective.
And antibiotics may not be the only way to go. Bionic 880 and Rife machines are an option, too. -
[ 10-16-2010, 10:20 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Bea- the biofilm med is "Boluoke Lumbrokinase." Personally, i've never heard if it.
Keebler- this "LLMD" came highly recommended by folks I (any many others) have trusted 100% in the past. Which is why, in large part, i was so floored to be prescribed only herbs, not antibiotics, much less to be told my case was hopeless.
I don't accept the last part, that there is no way i can achieve remission. (Please, no fighting here about the next part). I also don't believe this doc's premise that herbs alone can kill bacteria, so no, i don;t believe that the herbs prescribed will make a signfcant difference.
(Which herbs? Who knows. I am to order a specific blended concoction of tea from a specific vendor, no individual herbs mentioned).
But, 1 1/2 years without treatment later, i am willing to try, so will do the general tx prescribed for 2-3 months.
I just can't justify the hundreds of of dollars per month for the biofilm med without hearing from those with better knowledge about it.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Bea- reading back, i see that the med i mentioned is one you list. On what do you base your belief that this med might help tackle biofilms?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
"You wrote: He told me my chronic Lyme had gone on for too many years for me to hope I would ever get well, that the best I could hope for was to, in essence, treat secondary symptoms and regain some ground in terms of general overall health."
The ONLY way this statement makes any sense is if he thinks you have NO persistent infections.
I was sick for many decades before I got treatment. I've improved a LOT. Life is worth living again.
I would find a real LLMD who believes in treating on-going infection. If you;ve been infected for a long time you probably have other infections besides lyme. Are those being treated?
Biofilms do exist. I think the jury is out on effective treatment.
Terry, I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Hubby takes the Jarrow brand of lumbrokinase and orders it from VitaCost. Personally I feel that it is a reliable brand and it is much cheaper than the Boluke brand.
The Chinese developed lumbrokinase to treat stroke victims. It is derived from a specific type of earthworm. You know that an earthworm can be cut into 2 parts and still live and not bleed to death. For some reason this particular enzyme from earthworms works to dissolve clots instead of causing clots.
Hubby worked his way up and was taking 4 lumbrokinase at one time -- only takes 1 or 2 daily now. He had tried heparin (shots and oral lozenges and even IV) but feels that the lumbrokinase is much more helpful.
Pretty sure there have been some studies on it, but don;t have any references available right now.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
This is a good article about biofilms. According to one comment from a poster, there have been np studies on borrelia biofilms.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Terry-
this a real LLMD in the sense of, he believes in the reality of chronic Lyme and TBD's, and he believes that I have persistent and active infection.
He just doesn't seem to believe that antibiotics are necessary, at least in my case.
I told him directly that I was extremely doubtful that herbs alone could kill bacteria of any kind, much less TBD bacteria. His reply, essentially, was that i was wrong, that herbs can indeed be just as effective as antibiotics. He used artesimina's effectiveness against malaria/babesia as an example.
My brain is cooked, but somehow i don't think that art for babesia is the same as herb X for Lyme.
Bea- thanks for the info, but i'm having a difficult time making use of it. I don't have heart problems, so how is a heart med supposed to help?!
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Terry- thanks for the link. will tackle it tomorrow...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know of at least one person who beat lyme with an allicin protocol and no abx. It took a couple years but he made it back to 90% of his former self, considered success in his book, with hopes that the rest would still improve.
He was back to skiing mountains. Just to give a little hope. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Keebler-
hope is everything. thanks.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
sometimesdilly, Please check out the second link I added.
There are plenty of studies that show that some herbs have anti-bacterial activity. I do believe that herbs can have antibacterial action similar to abx but perhaps not as strong in most cases.
My LLMD combines abx with herbs. This is such a nasty illness, why not use all the tools available? ABX have knocked my infections down considerably. Even Buhner and others who don't usually use abx admit that they are often needed in chronic lyme treatment.
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Fibrinogen is what causes blood to clot. Everyone needs some -- but too much is not good. Infections can cause increased fibrinogen. Hemex Lab does an expensive test -- $300 or $400 I think -- to measure the level of fibrinogen. The test is called an ISAC panel -- the letters stand for Immune System Activation of Clotting.
I also believe that in high enough doses some specific herbs can have some effect on lyme and other tickborne diseases.
But for both herbs and antibiotics to work they need to be able to get to the bacteria or virus or spirochete -- and that is how things like lumbrokinase can help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
When I found out about hypercoagulation and the need to reduce inflammation, I read info about systemic enzyme therapy.
Lumbrokinase is a systemic enzyme.
I had success with Wobenzym, a mixture of enzymes that is used alot in Europe. Within two weeks I had a HUGE improvement...my constant severe headaches were reduced.
I had read that the docs in Europe prescribed this for arthritis patients, and that they often used doses of 20 to 30 tablets to "force the therapeutic response."
Knowing this, I ramped up to 12 tablets daily, in one dose on an empty stomach. I read that about 25% of the enzymes are absorbed into the body. They reduce inflammation, reduce fibrin.
A couple times when I could not get Wobenzym, I switched to another brand. The headaches came back, the aches and pains came back, my joints hurt again.
I am pleased that you will be trying systemic enzymes. Some docs prescribe them along with the antibiotics, to reduce the biofilm.
Dr. Stephen Sinatra in New England, a cardiac physician, has suggested a protocol of Wobenzym and cat's claw to treat Lyme. The enzymes to reduce the biofilm, the cat's claw to stimulate the white blood cells to phage, or eat, the bacteria they find in the bloodstream.
You should be able to find info with a search. Although Lumbrokinase is not in the Wobenzym blend, both are systemic enzymes. Some people have better luck with a particular product.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
I've tried Lumbrokinase with 2 doctors to no effect.
Both took me off it agreeing that it seemed to do nothing but was worth try.
At least it is cheaper now but useless in my experience.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
My LLMD wanted me to be on Lumbrokinase due to my neurologic problems from Lyme. He said that it was used to reverse strokes--that it helped to open up the tiny blood vessels in the brain in particular.
I took it for about 6 months.
I can't say that I had any particular results from it.
However, recently, after having a couple of seizures, I took it again for two months.
Having hypercoagulation, I was particularly interested in something that would work on that situation. For me, Rechts-Regulat works the best on hypercoagulation.
For general blood vessel cleaning out, my husband uses Vitalzyme, which was the least expensive high-potency mix of systemic enzymes we could find. It works quite well for him.
I hadn't heard of using Lumbrokinase (or other systemic enzyme)to break up biofilms, but that would probably be their action if they clean out the gunk in blood vessels.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
posted
Nattokinase and Lumbrokinase Dissolve Biofilms Causing Fibromyalgia, Autism, Chronic Fatigue (This is the title of the article)
Interesting article mentions lyme but mostly autism. Dr. J put me on Nattokinase when I started abx and I wasn't sure why but since reading this it explains the reason.
My husband's LLMD has prescribed Boluoke (Canada RNA brand) in two contexts: while he was on IV abx, and to address possible hypercoagulation based on a blood clotting panel. He never specifically mentioned biofilms, although as Cass said, it makes sense that that could be an effect.
The cheapest place I found to get it was galaxynutritioncenter.com, although it's still more expensive than other brands ($58/bottle).
I wish I could comment on whether the Boluoke made a difference, but it was always taken along with powerful abx, so I can't tease it out.
Best to you, Viva
Posts: 532 | From southeast US | Registered: Oct 2005
| IP: Logged |
posted
I have started taking Boluoke lumbrokinase for hypercoagulation. I didn't learn about its effects on biofilms until I started reading here.
Although I can't report on results yet, I have to tell you that this stuff really gives me a herx! Within 5 to 6 hours of taking a single dose, I was definitely herxing. I found this really encouraging--it must be doing its thing!
So, I backed off and started taking just one a week to ease into it. This didn't seem to help the herxing problem either, so finally I divided the capsules into two half-doses (using some empty capsules from the health food store). The half-dose doesn't trigger a herx, so I've been taking that every other day, and this week I'll be taking a half-dose once every day.
Once that's going okay, I will increase to a half-dose twice a day, and then hopefully keep increasing to the prescribed 3 capsules a day. The goal I understand is to keep a constant level of it in your bloodstream to prevent the fibrin from building up.
(I'm taking Biaxin with Plaquenil also.)
Posts: 261 | From Nebraska | Registered: Jan 2010
| IP: Logged |
posted
Back to antibiotics, Eva Sapi lead scientist studying Borrelia burgdorferi at UNH presented yesterday at ILADS that the best antibiotic combination, in vitro for dissolving the Lyme/Borrelia biofilm is doxycycline + flagyl. She also showed a chart of the various enzymes you have mentioned above. Have to check the CD for that a little later.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I wonder what your LLMD's logic IS in prescribing a "bio-film dissolver" w/o any abx to go along with it?
The point that the pathologist/ researcher in the film U.O.S. (Dr. MacDonald) was making was that the biofilms helped the 'kete 'colonies' evade the antibiotic(s), hence making the disease "very hard to treat" & the patient "prone to relapse".
I also question your doctor's opinion that Your Lyme infection had gone on for too long "... for me to hope I would ever get well." That's the quackery, as far as I'm concerned!
I've known folks (a couple here on these boards) that were sick with Lyme for many Years & who are either now doing quite well, or atleast feel they've made a significant (90%+) recovery. Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
Whether this is relevant to Lyme, I don't know. But in the meantime, we're taking the S. boulardi.
And yeah, like others have said, I don't necessarily agree with your doc's assessment that you've had this infection too long for you to get well.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
| IP: Logged |
posted
I took Boluoke 10 yrs ago ( for several years ) .. so it's definitely not cutting edge! I should still be on it, but it's rather pricey. It is supposed to be the best lumrokinase out there.
Hope you can find help with herbs, or other natural methods, dilly. Some of those things can really help once you get the bacteria knocked down with antibiotics.
I took abx for 4 yrs and then followed it with Rife.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thanks to all of you for the feedback and information.
I've been a believer for several years in the role biofilms may play in hindering recovery-- the science of that makes perfect sense to me. And as I said, I'd be thrilled to learn that we already have effective agents available to us to go after them.
From what you all have posted, it sounds like as usual, what works for some of us may not help others of us at all.
Most important to me right now, though, it sounds like there is at least good logic underlying my doc's prescription of Lumbrokinase, which I find very reassuring.
I'm not trying to offend anyone's sensibilities, but I'm too many years into TBD's and unsuccessful treatment by multiple docs to feel OK anymore about obediently swallowing pills and advice without question, and without asking others about their experiences.
That said, and I may be creating my own reality here, but I'm going to choose to believe this doc knows what he's doing.
Maybe he thinks there is no point at the moment in pouring more abx into a body so decimated by years of multiple active infections and the assault of non-stop abx.
Maybe he wants to address some fundamentals first (apparently including adrenal exhaustion and severe magnesium deficiency), let the dust settle, and then think about what abx might be required.
First things first, which is ordering up the requisite shelf-full of pills and potions and getting going.
Thanks again for the feedback. I'll definitely post about any success I may have with this no-abx regime.
hugs, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
"Maybe he thinks there is no point at the moment in pouring more abx into a body so decimated by years of multiple active infections and the assault of non-stop abx.
Maybe he wants to address some fundamentals first (apparently including adrenal exhaustion and severe magnesium deficiency), let the dust settle, and then think about what abx might be required."
---Sounds very logical to me! Please do let us know how you're doing!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
quote:Maybe he wants to address some fundamentals first (apparently including adrenal exhaustion and severe magnesium deficiency), let the dust settle, and then think about what abx might be required.
Those are biggies. I firmly believe that in addition to addressing bacteria, you need to restore your body's mineral levels to help it heal and keep the bacteria at bay. Your LLMD sounds like a smart guy and he may very well be on the right track.
If you have known severe magnesium deficiency, it is crucial to address this immediately in order to help yourself get well. Orals supplements will not get you back to normal levels.
IV therapy aided by IM will transform you. I've seen it myself, and literally watched myself become a new person in 30 minutes by getting an IV. So many issues that afflicted me disappeared by addressing this. No amount of abx will fix magnesium deficiency. I'm sure you are aware of this, but pointing this out for newer members.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hey toots and julie-
thanks for the encouragement.
Julie, the magnesium prescribed is in pill form (1,000 mg daily, total).
Sure hope you're wrong about the pill form not working...
(though i seem to remember others saying the same thing).
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hi Dilly!!
There's no way your body can absorb 1000mg a day orally. Unfortunately, most of it ends up in the bathroom.
If I had to do it over again, I would have had my LLMD do the IV's earlier than we did. I ended up giving it a try one day when I woke up with a pulse of 124 bpm, having anxiety, brain fog and inflammation run amuk.
Emergency visit to the LLMD resulted in my first IV Mag treatment. And I was a new person within 30 minutes.
So this wasn't a relapse or even a lyme symptom - this was a mineral deficieny that just hadn't been addressed properly yet.
Marnie was so so right - I wish she still put up her reminders about Mag deficiency. So many people miss the boat on this.
I just always thought getting an IV was a big thing, but it really isn't. Just a little drip bag that takes about 30 minutes or so. And holy moly - I can't believe the difference.
Mind you - this was AFTER I'd stopped abx and close to a year after I'd begun taking orals 8 times a day (low doses). We drew blood and sent it out for a mag level test before the first IV - it was still super super low. I only did 4 IV's every 2 weeks (I think), and supplemented by weekly IM shots. I continue to do the shots myself.
I've been told the transdermal Magnesium Oil is effective - I bought a bottle of Ancient Minerals to give it a try. Can't say for sure if it works, as I still do the IM.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
The cheapest and quickest way to get magnesium into you is an epsom salts bath. The body will only absorb the amount it needs.
Many have detox reactions because magnesium is needed for so many bodily functions and enzymes will start working that weren't working before. Also, the sulphur in the epsom salts will help with detox.
I have given hubby IV magnesium -- drips and also IV push. Unless you are extremely deficient you would probably not notice much except for a possible flushing effect if the drip goes in too fast.
If you are deficient in magnesium it is also necessary to consider that other minerals such as calcium and potassium may also be deficient. Too much of any one mineral will throw off the balance of the other minerals.
Hubby takes betaine HCL because he is deficient in stomach acid which is needed to break down minerals to be absorbed.
If a routine bloodtest shows low magnesium then you are probably deficient. Red blood cell magnesium is a more specialized test which makes it more expensive -- but it can give a better measure.
One doc thought that even though hubby had a high red blood cell magnesium level he was losing magnesium due to "leaky cell membranes". Kind of hard to prove that theory.
Extra potassium and calcium seem to be more beneficial to hubby than extra magnesium. And he needs extra sodium as well.
Magnesium citrate is the form hubby seems to do best with. It may take some trial and error to see how you feel and if your bloodwork improves on different brands or forms of magnesium.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
![[toilet]](graemlins/toilet.gif)
Printer-friendly view of this topic