posted
After about 4 years of the usual ABX treatment--combos, changing after 6 months, with the ususal Babs and Bart treatment, along with heavy metal chelation--I had hit a plateau. Most of my symptoms were gone, but my energy level stayed right around 3, with 10 being well.
My LLMD had been using NutraMedix Banderol and Samento with those who were very near remission but stayed just shy of that. He told me the ABX can keep the spirokete underground, but the problem is still there. So, my ABX was dropped, along with lumbrokinase and gse, and now I'm only taking Banderol and Samento. I'm starting with 5 drops each on a really empty stomach (well over an hour after eating), and building up slowly. I take them at least 15 minutes apart.
Right away my pain level went up slightly. It's not bad enough to take anything for it--I'm so used to being sore, it hardly gets my attention. But it's reassuring to know that some killing is going on--more than what ABX, lumbrokinase and gse were doing in the last few months. Apparently, these 2 herbs work synergistically and on all 3 forms of the spirokete, plus the biofilm.
I'm still taking mountains of supplements to stengthen my system, etc.
I did a little searching here and didn't see this exact protocol described. My Dr. read about it last summer, and has found it to be as effective as the ABX combo treatment, and now is using it more--sometimes even at the start of treatment.
I've not been on this regimen very long, but am feeling optimistic. I'm still taking probiotics, but not as much as I did with the ABX (300+ billion). I'll be building my gut up for a long time, but wonder if these herbs harm the "good guys" at all.
[ 04-23-2012, 01:50 PM: Message edited by: daisys ]
Posts: 563 | From New Mexico, USA | Registered: May 2007
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As advised by my dr. and the Cowden Protocol here's the schedule.
Lyme Borreliosis; Chronic Schedule: * Start with Samento 1 drop, 1-3 x per day. * Increase dosage with 1 extra drop a week to 10 drops, 3 x per day. (If there is a Herxheimer reaction, or extreme tiredness, stop for 1 day and start slowly again with the lowest dosage with which it was going well).
* Use Samento for 12.5 days and then stop for 1.5 days.
* After 1 month at 30 drops per day - substitute use of Samento with use of Banderol 2 x 20 drops and continue with Banderol for 12.5 days, then stop for 1.5 days, then switch back to use of Samento.
Thereafter, rotate the use of Samento and Banderol. This should prevent the bacteria from building up a resistance to Samento.
* In case of co-infections (present in 45% of chronic Lyme disease cases), add Cumanda (build up to 20 drops, 2 x per day) for 8-12 months. This should be used in addition to either Samento or Banderol.
Posts: 412 | From Virginia | Registered: Sep 2010
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posted
I'm using banderol + samento while on ABX. Is this ok? I'm starting with 1 drop 2x/day and adding a drop every 7 days.
Last time I tried this combo i was up to 3 drops 2x/day and by day 6 I had the worst day of my life, pain wise. So I stopped. Just restarted 5 days ago.
But yeah it's killing something!!!
Posts: 908 | From Albany | Registered: Nov 2008
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I had been on traditional abx, and new specialist weaned me off them and had me start taking banderol and samento.
For me, sort of like jlcd described, my initial symptoms were off the chart bad. One drop caused me incredible nausea, plus a lot of joint pain.
I've been ramping up VERY slowly. Now, I'm up to 30 drops of the banderol and 20 of the samento.
After reading about the Cowden protocol, I'm going to talk to lyme specialist about adding cumada.
Posts: 2549 | From never never land | Registered: May 2005
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lymeboy
Unregistered
posted
I am on ABX, and I will be starting Banderol and Samento tommorrow. I wonder if this will start me herxing. Haven't had any reactoins so far with this new protocol.
I have heard from quite a few people that these herbs have gotten them around a corner or two. Good luck!
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lymeboy
Unregistered
posted
here is a discussion about your exact situation on another board. There is a link in the first post to a study of the Samento + Banderol combo vs. Doxy....
posted
I appreciate the responses to my post--I haven't been coming here, and forgot I had posted my new treatment! Thank you, everybody, and I will follow up on the information given.
I now am up to 14 drops of each, 15-20 minutes apart, twice a day. I add a drop of each herb every week. With every increase, the first few days I feel worse, with pain, and sudden perspiration without a fever, or feeling hot at all. I also have trouble sleeping at first, and then that clears up by the end of the week on each dose. The symptoms generally level out, but are still there. I actually don't feel much different starting the 14 drops than I did the first week with 5 drops.
I feel I have more strength, but I'm not motivated to exercise yet, other than walking. I'd say my energy has gone up a little, but I'm unreliable. Some days I can do whatever I have planned, and other days I have to cancel. When I'm detoxing through the pores, not only do I not want to be in public when dripping wet, I also feel weak in the legs.
I'm also losing hair again, thankfully not in the handfulls that I did when I first started being treated. I learned before to look for new hair growing in along the hairline--if so, then the hair is growing back in, and the hair loss is not permanent.
I'm encouraged that I am herxing more on these herbs than I had been with the antibiotics for quite a while. I think the ABX regimen saved my life, but it had lost it's effectiveness at killing the spiroketes. Now, hopefully, the herbs, Samento and Banderol, will help enough that my body can rebuild strentgh to do what it needs to do to keep it all under control.
I do have Cumanda, and once took a break from ABX by using Samento and Cumanda, switching them every 12 days. My LLMD has told me to keep the Cumanda that I have left, because it may be used again. At the time I did take the herbs, the symptoms gradually got worse, so I was put back on the ABX.
I'll post again after I've had a chance to see how it goes when I reach my optimum dosage long enough to evaluate it's effectiveness.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
Lymeboy, that study is fascinating--I think I've heard that the spirokete form is the most damaging form, so in that way, the ABX treatment does help with improvement. My immune system was stilled revved up too high with it, now I see why--the infection is still there.
I've been doing well with the Samento/Banderol regimen and now I've added transfer factor LymPlus (Researched Nutritionals). This is my first day, and I don't feel any effects of it yet, other than slightly more hip joint ache. My LLMD told me this transfer factor is specific for Lyme and a list of associated infective agents.
One4islands, my LLMD doesn't have me switching them off, but taking them at the same time, since he says they work so well together. Before, I switched off between Samento and Cumanda, to avoid resistance.
jlcd1, are you still on that regimen? Did a LLMD put you on it? Mine told me they're all experimenting, because no one is researching for them to learn except for what they learn from each other's treatment outcomes.
Andie333, my doctor told me to keep the Cumanda that I have left over from before. He says it will figure in later in my treatment.
This week, I'm taking one transfer factor a day, and then I go up to 2 a day, and it stays at that rate. I'm feeling very optimistic about this. I'm doing well, except not getting around that last corner, and it feels like this is going to do the trick!
Posts: 563 | From New Mexico, USA | Registered: May 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hi Daisys,
I'm so glad you are improving. I so agree with you that the abx are losing their punch, and we need to look for something outside of that - like the herbals.
I tried banderol. I worked up to 4 drops twice daily with 1 samento drop at night. Boy, did I have an emotional herx. I just started this week, so I will have to take it verrry. sloow.
If you're the Daisys from the ProHealth board, we started Lyme treatment around the same time. I had achieved a 90-95% remission, but I relapsed this spring. I just started work today, and it's been really tough.
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Yes, I'm that Daisys and remember your posts from that board.
Even though it's tough, it's great that you are able to work at all. I remember that your work is very important to you.
I wonder if you know what caused the relapse? It is a relapsing/recurring illness, so it may have been unpreventable--but it would be great if you could track what affected you.
I have done well with the herbs, and was expecting to really react to the transfer factor, but am happy to say I just reacted enough to know it's doing something. Having said that, I do have ups and downs. Some are definitely herxing and detoxing, and others I cause by overdoing the treats.
I just got The Lyme Diet book, and see that I've basically been on that diet for quite a while now. So, patience and sticking to the right foods will hopefully pay off.
Good health to you, Daisys
Posts: 563 | From New Mexico, USA | Registered: May 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hi Daisys,
I'm working but it is a struggle in this relapse.
I'm so glad you are doing better. I tried a few days of the samento/banderol combo but herxed. But then again, I herx on everything.
How are you doing with these herbs? Are you off abx?
Be well.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Yes, I'm off ABX, and using just the Samento, Banderol, and Transfer Factor Lymplus.
I'm definitely getting more energy (finally!), but the pain level is getting a little worse all along. I've called today about whether to lower the dosage of the herbs, or just keep taking something for the pain--which I don't like doing, but don't want to slow down recovery either. I just don't sleep without help with the pain, even though I'm on strong sleep meds. So, hopefully, my doctor will have a good solution in mind.
I've hit a little bump with hormonal support being changed, and my body reacting to that, but when that settles down, I'll have a better idea of how much I've gained with this regimen.
I can't imagine working at all, so I know you're struggling. Hope it gets better for you soon.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
Just a quick update: The pain has gone down, and I would estimate that now I mainly have the FM soreness that I've had for years. I can ignore it, or be distracted, but it's always there--like I've just exercised a little too much.
Sometimes, after taking the herbs, I do have some symptoms, mainly headaches.
My energy level is improving. I'm not up to being busy without break every day, but I definitely can do a lot more without having to recoup the next day.
The other way that I can tell that I'm doing well is that I'm losing weight. I don't change anything with my diet (it's very strict, and my way of life now). When I'm not doing well, I gain weight, and when I am improving, I lose weight.
[ 11-03-2011, 02:03 PM: Message edited by: daisys ]
Posts: 563 | From New Mexico, USA | Registered: May 2007
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I don't know the name of the tests, but I just had the results from 4 tests that measure inflamation. The 3 that are related to Lyme disease came back normal.
The one not related to Lyme disease is high, and I'm now taking Losartan. I've asked for a copy of the test so I can research it.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
Congrats! That is so awesome your test results are normal now.
After years of abx I just began taking banderol & samento today so found your thread very interesting.
Thanks for posting. Hope you update as I would like to find out more about the tests you mentioned.
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
Congrats, very interesting thread. I hope to be in your position someday and I hope to remember this herbal protocol when the time is right for me!
Posts: 274 | From United States | Registered: Feb 2012
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Many congratulations, Daisys and continued good health.
Posts: 1647 | From UK | Registered: Nov 2008
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Many congratulations, Daisys and continued good health.
Posts: 1647 | From UK | Registered: Nov 2008
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posted
Hi I appreciate the post as I'm always looking for success story's from people who pursue other alternatives rather then the antibiotic route.
So I was curious enough to do some Google searching on prices. I came across a link on Amazon for the amount of $33.00 ea.
Then there were two reviews on the Banderol. And I was surprised to see a scathing review from Dr. J S, I believe the one down in Florida.
I found his review interesting enough and am considering reading other people's success stories on Banderol & Samento, before I make a decision on whether to try it.
But I'm posting a link to his post. His post was recent on April 1, 2012. I'd like for people who have tried it to read his opinion and give their input on what they think of it.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
I appreciate all the response to my post about getting better on Samento and Banderol. I know I needed to be treated for all the co-infections, so I definitely am glad I went to a LLMD rather than just self treat with these 2 herbs.
I find that I have a condition: I don't get rid of toxins. I have the methylation and sulfuric detox blockages.
My LLMD told me not to take cholestryamine any more. Before, I had a build up of fat cells with toxins that were not removed from the body. Cholestryamine worked well to clear it all out, but I guess they've found problems with it.
So, I've started taking a lot of chlorella every time I eat. It removes the toxins, but not the fat cells they had been in. I am slowly getting rid of those fat cells as I've lowered carbs, and eat a lot more veggies, so my diet is lower in calories. I'm also taking the "simplified methylation protocol" supplements, and molybdenum (because I also have the sulfuric detox blockage). I'm also on Losartan after coming in high with the TGF B1 test.
Now that the weather is nice, I'm feeling better. I hope this summer to gain ground in general health. I have a better quality of life now, but feel I will always be working with the detox blockages.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Daisys,
Have you tried high-dose magnesium for your muscle pain? I was told I had Fibromyalgia before I knew I had Lyme, and when I added a magnesium supplement to my regular supplement regime (I already was taking a calcium magnesium supplement), I no longer had the muscle pain. I found I had to take at least as much magnesium as calcium to keep the pain away.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
Razzle, Sorry I've been away so long. Yes, I've been taking lots of magnesium for many years. It was the first thing that really helped me. I took the malic acid sort.
Calcium and magnesium compete for the same receptors. So, I take calcium at lunch, and magnesium at breakfast, dinner and nighttime.
I'm still struggling with the the detox blockage problem, and am making an appointment to see my LLMD about it. I may have candida and/or thyroid issues.
I'm amazed that I've been on this regimen for 5 years. I've been telling people that I've been in treatment for 5 years, but I was on ABX maybe about 4 years before that, and 1 year with another doctor before that...so, I've been in treatment for about 10 years.
I still have low energy, but have a better quality of life than previously. I still have days of being too tired to do much, and I'm no fun in the evenings--I'm ready for bed by 8, like it or not, my body just doesn't do evenings.
I saw a study showed that FM, CFIDS(ME), and Lyme are 3 different conditions. They used spinal fluid to see what was going on in the brain, and all 3 conditions had extra protein in the brain, but were different mixes from each other. So, since I've been DX'd with all 3, I could well have all 3.
I know I still have some spirokete infection, because sometimes, after taking the herbs, I'll have joint pain. Sorry, wish I had better news than that, after all this time. I take a full dropper of the 2 herbs, and just lately, have added Cumanda to see if it makes a difference.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thanks for sharing your story--
I am currently taking 25 drops 2x a day of Samento, Banderol, and Cumunda-
with Minocycline, Diflucan, Tindimax, Serraptease
Call me crazy, and I am, but I just want to push through and then go off everything and see what happens.
All of this together is a doozy- I am detoxing, and extremely tired, on the couch when I can during the day--- But WOW am I getting cleaned out.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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