I took Tindamax. Hated it. While I didn't notice a herx specifically, I just felt crummy all the time on it. It also killed off a bunch of good bacteria in my mouth and gave me a dark tongue, which I couldn't completely eliminate as long as I took it. It also gave me a chronic metallic taste in my mouth by the second day. Blech. At least I didn't overeat, as everything tasted bad.
More recently, my doc gave me an herbal called Bolouke by Canada RNA Biochemical Inc. He said it was a derivative of earthworms and I'm almost positive he said it might help me with biofilms. I eased into it over 3 days, and 2 days after hitting the full dose, I got really sick. It was like I had a full blown case of acute Babesia with a very swollen, tender spleen + stomach pain + swollen, tender liver (or gallbladder), terrible malaise, headaches, and complete exhaustion. It was awful.
I stopped the supplement, and then the next day or two later, stopped all meds to let my body catch up with what I believed to be an overload of Babesia coming out of biofilms. I don't know that for sure, but that's sure what it felt like. I am confident the Boluoke triggered it because I was careful to add in only one supplement at a time so if I had a reaction, I'd know what caused it.
I haven't resumed the Boluoke because I am afraid it will make me worse again. I'm holding off until after spring break as we're going to see family for a week. I don't want to be disabled. When I do resume, I suspect I'll ease into it VERY slowly, over weeks rather than days and see how I respond.
Here's one small caveat: The bottle says "for circulatory health." According to one article I read about it, Boluoke helps break up fibrin, which is used by the body in connective tissue and by the blood to form clots. Some believe that fibrin is also a component in biofilms. The supplement can thin the blood a bit. Buyer beware. Some brands are supposedly just ground up earthworms. I believe
I will be thrilled if the Boluoke does the job. Tindamax is hard on my body, not to mention really expensive. While Boluoke is the most expensive supplement I've bought to date, it's still a fraction of the price of Tindamax.
Why not flagyl as a cyst buster? That's what my LLMD used, and it was fine for me, a confessed total lightweight when it comes to meds.
Here's from a 2008 (is that really FIVE years ago??) LymeMD post, fwiw:
"Flagyl tastes bad and you can't drink alcohol with it: two negatives. It causes a significant Herx. It is thought to only kill Lyme cysts. The alternative drug is Tindamax. Many internet entries claim that Plaquenil also kills Lyme cyst. I have found no substantiation of this claim. Some patients respond great to Flagyl while others do not. Again, Stratton has found it to be a critical part of his CPN protocol. One could argue that cysts convert back to the other active forms and that long term therapy against spirochetes and L-forms is adequate. My experience is that Flagyl is helpful. Spirochetes bathed in Rocephin or Doxycyline have been shown to convert to the cystic form within hours. I don't want to give the Lyme any place to run to. Have meds on board which can kill any of the three forms. I will reiterate that pulses doesn't make sense to me. This allows for periods of time for the accumulation of large cyst loads. Once daily Flagyl, 250 mg or 500mg is adequate."
Isn't there a difference between cysts and biofilms? I thought they were two separate ways for borrelia to hide.
My doc is dead against flagyl as he has had patients getting liver filure on it. I asked him to prescribe it for me a while back as I had had it before and it made me feel great, but he refused.
I've had plaquenyl for a year, my doc said it breaks cysts but I've no way of knowing if it really did.
I think I'll ask him about bolouke. I'll go off and do some searches now...
I took serrapeptase and I believe it released babesia and I ended up in the hospital with blood clots. Be super careful taking biofilm degrading products. I believe the best are BFB 1 and 2 from Supreme Nutrition. They are a topical essential oil blend that degrade biofilms but also kill microbes so you do not release them. Start very slow like one drop daily and then build up and if it does cause a reaction stop. Also a low fatdiet cn be helpful to starve them
BFD dosing instructions from the site noach advertised above:
Adults: First 3 days 1 drop into the sole of each foot or bottom of big toe twice daily (either one drop of BFB 1 into one foot and one of BFB 2 into the other if both are indicated or one drop of the particular indicated product into both feet twice daily). After 3 days if there is good tolerance (no rash or major die off) add one drop to the print side of the thumb and one to the back of the earlobe each time a drop is placed on the foot"
So just putting some of these drops on your skin can kill biofilms in our bodies?
There is good systemic absorption of essential oils and my friends and I that have done it have seen herxing. Oral ingestion of essential oils can be quite harsh so we tried topical as recommended not expecting much but were pleasantly surprised. There are quite a number of docs using these as I understand getting good results
I am not sure that they are mutually exclusive. That is to say it may have this coating all the time even in cyst form. I know that when in cyst form it is essentially in suspended animation and having a slime coating at this time may be beneficial.
"The structure of the Lyme spirochete is unlike any other bacteria that has ever been studied before. It is one of the largest of the spirochetes (0.25 microns x 50 microns) It is as long, as a fine human hair is thick. Borrelia burgdorferi is a highly motile bacteria, it can swim extremely efficiently through both blood and tissue because of internal propulsion. It is propelled by an internal arrangement of flagella, bundled together, that runs the length of the bacteria from tip to tip. Like other Borrelia bacteria Borrelia burgdorferi has a three layer cell wall which helps determine the spiral shape of the bacteria. What makes this bacteria different from other species, is that it also has a clear gel-like coat of glyco-proteins which surround the bacteria. This extra layer is sometimes called the Slime Layer or S-layer. (See diagram 1) (45,46,59)
This means: This extra layer of glyco-proteins may act like a stealthy coat of armor that protects and hides the bacteria from the immune system. The human immune system uses proteins that are on the surface of the bacteria as markers, and sends attacking antibodies and killer T-cells to those markers, called outer surface protein antigens (OSP antigens). This nearly invisible layer is rarely seen in washed cultures, but can be seen regularly in tissue biopsies.(46)"
An article on this doctors opinion on biofilm treatment
Further clarification on my own treatment... I thought Boluoke was for biofilms, but I learned at a later appointment that it was more to break up fibrin in my blood. It's what our bodies use to form clots, different from biofilms.
People with Babesia sometimes get "sticky blood" although how Babs causes this. Babesia likes to hide in the fibrin circulating in the blood, and "sticky blood" has too much fibrin. After a few days on Boluoke, I got very sick with what I could only describe as a bad case of acute Babesia. I'm pretty sure I had a ton of bugs hiding out in excess fibrin. I don't know for sure if I had "sticky blood," but I do know that I used to always get a bruise from a blood draw. In the last year of dealing with Babesia - no bruises, just a little red puncture mark. I feel better after a Niacin flush, too, so I think Babesia has caused circulatory issues for me.
So, back to the question of Lyme biofilms: I am now on Nattokinase for Lyme biofilms. I am also on Stevia. I felt really crummy for the first couple weeks on Stevia and had a slight increase in my rib soreness/pain (a Lyme specific symptom), so I believe it was having some effect, more than I expected. I have had less of a reaction to Nattokinase, but I'm ramping up very slowly. (I initially didn't take Stevia very seriously and I ramped up on it quickly.)
Rib pain has been a pretty consistent herx for me when starting a new anti-Lyme med or supplement. It gets worse, then starts to get better. My rib soreness has been fairly steady since stopping the Bicillin shots, so it seems oral meds just aren't getting to it. I guess the cartilage between the ribs is as good a hiding place as some joints.
And so I went out on a limb and decided to try some colloidal silver. I read several articles about it and concluded it wouldn't hurt me as long as I followed the safe usage dosage (there's a calculator online). Anything else I'm taking would harm me in too-high a dose, so I concluded it was worth trying to see if it boosted my current abx, Omnicef.
Omnicef didn't trigger any increased rib pain when I started it, so I'm not sure it's done much except stop Lyme from increasing. Well, the 2nd day after starting the silver, I got some sharp pains in Lyme's favorite spots on my lower ribs. Couldn't miss that! I had pain on and off for a week and while the sharp pains have now stopped, the ribs are still more sore than before starting the silver. Now, I'm hoping they'll settle down and start to feel better. I'm on a "short term" dose, which is higher than a daily/maintenance dose, so I'll only take it about 10 days this month, then wait a month and decide if I'll take it again.
I have no idea if it's getting at biofilms in my ribs or if it's just killing stubborn spirochetes who've escaped abx and my antibodies for a while. But it's definitely helping. I'm convinced from my own experience that as soon as I level out for more than 3-4 weeks, it's time to throw something else at Lyme.
I wish we knew more about biofilms, but studies are few and far between.
I visited Stepen Fry a few weeks ago and he gave us a small presentation on biofilms. He has had good success using a McDougall diet. My friends and I already seemed to be having success with BFB by Supreme Nutrition (which I was informed is going to be tested at a university in NY). I now along with friends and clients have been doing both. After herxing in some, people, most show a good improvement in terms of symptoms at least. We all are tho not eating any junk food and on other herbal antimicrobials simultaneously as well as detox products
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