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Banderol/Samento herx with each increase in drops

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Posted 2/17/2014 10:41 PM (GMT 0)
The LLND I am seeing has me using a modified Cowden protocol. I have worked up to 10 drops of each twice a day. I can only increase a drop about every 5 days. With every increase I notice my chest pressure increases and I have an elevated heart rate for a few days. Also my fatigue is worse. I asked my LLND about this and she said that some people herx with each drop increase. Has anyone else noticed this? According to Canadian testing I don't have Lyme but she said that with what I am experiencing using Samento/Banderol I have Lyme.
Posted 2/17/2014 10:54 PM (GMT 0)
hi dmw!

I'm one of those patients :-)

after 2,5 months on Samento, I can still only tolerate 3x2 drops per day (sometimes 2x2). If I try more, I can't get out of bed. My dr said I should just continue on this dosage, if necessary just 3x1 drop per day. Although the protocol I got is saying 30 drops per day, he says to stick with the low dose.
I herx now, but it is tolerable most days. Not comfortable, not easy, but I don't have to stay in bed like when I was trying 3x3 drops per day
Only started Banderol last Monday, not sure about what to think about that one.

Please go slow with the Samento, listen to what your body is saying to you. It seems like your LLND knows what she's talking about.
Posted 2/17/2014 11:27 PM (GMT 0)
Thanks for your reply Marie. My herx was much worse on antibiotics, only 3 hours sleep a night, severe depression and fatigue plus the chest pressure and elevated heart rate. I had to stop the antibiotic due to abdominal pain. My LLND said that working up to 30 drops can take from 1 to 6 months. Your herx on Samento sounds much worse than mine! I am fatigued but can still go to exercise class.....but I need a nap later! Have you taken antibiotics and are you seeing a LLMD or LLND?

Post Edited (dmw52) : 2/17/2014 5:02:20 PM (GMT-7)

Posted 2/17/2014 11:56 PM (GMT 0)
I heRx with every drop increase too. .my chest gets a weird feeling too....joints and muscles burn and hurt within minutes of taking. It has taken me 2.5 months to get up to 13 drops twice a day on Samento and about 2 months to get to twelve on Banderol. I feel like its slow but as long as I feel bad at all I wait till its gone to move on.
Posted 2/18/2014 4:33 AM (GMT 0)
Yes, absolutely. I'm only on two drops of each per day, and so far only four days out of the week, and I herx just from adding another day.

I've figured out that it would take me four years (I'm not kidding)! to reach the full dose.

Margaret
Posted 2/18/2014 5:24 AM (GMT 0)
dmw52:

You can definitely herx with each drop increase. Increasing a drop every 5 days isn't so bad and sounds like for you the right approach. I herxed when I first began, the first week. After that minor herxs and worked up to full dose. Dr. R is quite gentle and definitely advises taking it slow. Since your herxing that means its working.

Are you helping your body detox? I've slowly gotten into a routine of daily detox baths, cilantro-parsley-ginger tea, tons of water and a good sweat if I have enough energy. Some of these may help you, or may not haha.

You never sent away for an Igenex test?

LC
Posted 2/18/2014 12:04 PM (GMT 0)
Lyme Contractor,

I have debated about whether to have the testing done through Igenex but I really can't see the benefit and it is very expensive. My GP is just going to say that Igenex gets a lot of false positives, and it isn't going to change my treatment. Infectious Disease doesn't consider them valid. I read about another person getting tested for Lyme and it was negative but she tested positive for a co-infection. So if my Lyme test is negative, do I then order the co-infection panel which I've read isn't very reliable? I've also been wondering if the testing would be reliable since I've been taking Banderol and Samento? I''m still wondering if I should have the testing done. Which test did you have done?

I am surprised that you were able to work up to a full dose already. It wonder if how long you have been infected determines how quickly you can increase the doses. I believe I was bitten by a tick in April.....large bruise on my back and a rash and this is when my symptoms started. When do you think you were infected?

I have been doing the epsom salt baths, ACV, and exercising. I haven't tried the dry brushing yet....need to get going on that.

Donna
Posted 2/18/2014 3:57 PM (GMT 0)
Hi Donna,

I have been on abx before, for a total of 15,5 months (these were the combinations: Minocycline/Azythromycine/Plaquenil, then Rifampicine/Tetralysal, then Azythromycine/Tetralysal, then Ketek, then Cefuroxyme, then Doxycycline).

Things only got worse, so my dr decided to get me off abx and start with a modified Cowden protocol.

The title LLMD doesn't exist here, but I'm seeing an internist/cardiologist who made it his life's work to try to heal people with CFS/ME and find the cause behind it.

Good that you can still exercice! Try not overdoing it though...
:-)
Posted 2/18/2014 4:03 PM (GMT 0)
DMW52,

Well the testing through Igenex isn't a must. Since you have recollection of what you believe to be a tick bite and you are responding to treatment, along with your symptoms, I would say its pretty certain at this point you have Lyme. If I was in your position I probably wouldn't order one either.

I have no idea when I got bit or how I contracted Lyme. Just fell ill in August '13. The longer I go on with this it makes me think that I was infected for a while before that, maybe even years. Dr. R actually did the requisition for me and results were sent to her. I couldn't even get a doctor to sign one! I had the full Lyme Infection Panel #6050 I believe. It was worth it in my case because I had a very positive test, in fact I was CDC positive.

Yes I am lucky that I didn't have much issue with working up to full dose. Dr. R felt I was going to work up quite quickly for some reason. I guess I manage pretty well, although its not easy. Wish I had more definitive herx so I know its working for sure. I think each individual is different and some people naturally detox better than others so this might be a case of that. Just a guess.

Sounds like your doing lots of detoxing! I as well need to get on the dry brushing, was just thinking of that the other day.

I wouldn't be discouraged by working up slowly because a drop every 5 days is still a good pace. There's plenty of others who have to take it way slower or can only ever handle smaller doses. It sounds like you are managing quite well if you are exercising.

Have you been feeling better since starting? What are your main symptoms?

LC
Posted 2/18/2014 4:47 PM (GMT 0)
Marie, just wondering if you are from Canada. I only did Minocycline for 16 days, and most of the days were only 100mg and my symptoms became much worse. You are so lucky to be seeing a doctor who really wants to help!

LymeContractor, at this point my main symptoms are the chest pressure/elevated heart rate, irritated eyes and fatigue. The aching in my joints isn't bad, but I feel that I have had a significant loss of cartilage, especially in my left elbow. (As I mentioned in another posting, my insomnia, hot flashes and fatigue have been worse lately....since I ran out of TADS.) My worst symptom originally (and my first symptom) was the joint pain. ( Felt like I was developing Rheumatoid Arthritis) I have definitely improved since starting to see Dr R. What are your worst symptoms? Are you seeing improvement?
Posted 2/18/2014 4:55 PM (GMT 0)
I'm Belgian :-)
my dr is extremely intelligent, but could do better in social skills, no offence to him, but it can be pretty frustrating at times. He's one of those rare non-static drs: he's always researching and studying. Not lazy at all. Like a dr should be.
Posted 2/19/2014 2:09 AM (GMT 0)
DMW52 what does he have you on, just Samento and Bandarol or are you adding more little by little.

I bought some Samento to see if my hubby would react since I have had Lyme for 15 yrs and he in the last 5 yrs has been having symptoms. Not sure if we will mention it to our doctor yet since it would cost us $140 more dollars per month for an office visit. I am on antibiotics but would rather go the herbal route.

When nobody could find out what was wrong with me I went to an Ayervedic doctor who flew into town every 6 months or so, and I actually almost felt normal while on the herb but the longer I was off, symptoms returned.

Hope the herbs/drops work for you.
Posted 2/19/2014 4:14 AM (GMT 0)
dmw52: My main symptoms are tingling, nerve twitching, joint issues (not much pain, clicking, popping...I think be discussed that topic previously), weight loss.

My stomach improved quite quickly before I even started the Samento/Banderol. I've put some weight back on, but otherwise I can't say I've seen much improvement. Its been frustrating me quite a bit lately. But I will be asking Dr. R at my next appointment which is soon.

Revive: Me and dmw52 are by chance seeing the same LLND, which is really the only one I know of in Canada. But I'll let her answer the question regarding the treatment protocol ;)

LC
Posted 2/19/2014 11:57 AM (GMT 0)
Lyme Contractor, do you have inflammation in your joints? I was told by ID that I can't have Lyme because I don't have inflammation in my joints. The popping/clicking in my joints is still there but not as bad as when all this started. I sounded like rice krispies when I got out of bed in the morning! I have been eating a lot of almonds lately and my treat is cocoa/almonds/coconut oil made into bars. That has put some of my weight back on. Wonder if it will just take time for your body to repair the damage? You might see more improvement when you start pulsing the other herbs. I am also wondering about you not herxing much with Samento and Banderol.

Revive, the LLND has us do a detox for 6 weeks.....supplements such as clay, chorella, lumbrokinase. Then we slowly build up Banderol and Samento. One breakfast and supper, the other lunch and before bed. After being on the full dose (30 drops) for 3 months, then we will add 4 other herbs and pulse them like the Cowden protocol. Best wishes to you and your husband.
Posted 2/19/2014 4:29 PM (GMT 0)
dm52,

Well I would imagine I have inflammation, but my story is similar to yours with doctors. Saw a Rheumatologist who said with out swollen, red joints and blood markers for Rheum. Arth. that I don't have inflammation. I am probably just noticing my joints cracking more.........its all in my head lol. I'm 24 years old, I don't think every single joint in my body is supposed to pop and ligaments slip.

Those bars sound great! I also eat a ton of nuts. Try pumpkin seeds they are super high in good fat and antioxidants. Never knew this before.

I'm hoping it just takes a while. Dr. R for whatever reason didn't think I would have much issue with herxing or need to take it slow, so theres that. I guess I lived a healthy lifestyle before, changed my diets months before seeing her and was doing some detox prior to that so maybe that plays into it. Also I have a really high tolerance for medications and being an athlete, a super high pain tolerance. So these could all play into minimal herxes. I feel like I definitely herxed at the beginning, I had random tooth pain everywhere in my mouth. I even went to the dentist, but he said your teeth look great. This subsided after a week. Yah I'm thinking it may just take a while to see more improvement.

LC
Posted 2/19/2014 8:17 PM (GMT 0)
Lyme Contractor,
The first naturopath that I saw in May put me on an inflammatory diet....only vegetables and fish. She had me juicing a liter of vegetable juice each day. The diet really helped with the joint aching. The Rheumatologist that I saw in Sept said that my joints looked "beautiful" and that she thought I would continue to heal! Ha...that was helpful!!! ("You were just noticing your joints cracking more" and you are 24....that was helpful too!) The diet could be why by the time I saw the rheumotologist the ultrasound of my joints didn't show inflammation. I haven't had any sugar since May. I miss my wine and corona! I have also been taking garlic, oreganol, and citricida since Mayl. Are you on any of these?

I feel so bad for you! My daughter is your age, 24 (25 tomorrow). You should be out enjoying life, not trying to figure out what to do to heal! However, I do think your body will need time to recover from this. Unfortunately there isn't a quick fix. Also, the other herbs may look after remaining issues. keep us posted with what Dr R has to say.

Must buy more pumpkin seeds. They are also anti-parasitic.

Just finished writing a letter to the MP's regarding passing Bill C-442. Unfortunately the Lyme problem in Canada is only going to get worse!

Post Edited (dmw52) : 2/19/2014 1:37:52 PM (GMT-7)
Posted 2/20/2014 4:07 AM (GMT 0)
dmw52,

To be frank, I miss beer! haha. I miss lots of foods. I am a huge eater due to my active lifestyle and used to eat around 6000 calories a day. Now its hard to fill all those calories in with stuff that is GF, SF and LF. I take Oregano Oil Caps out of the three you mentioned.

Yeah....not going to lie it kind of sucks. I didn't in vision being sick like this at the age of 24. My life was best it ever been. On the market for my first house, running the majority of the projects at work, best shape of my life, etc. then bam! Oh well what can you do, can't complain too much because that gets you no where. This will just be a bump in the road for me, and I will get better somehow.

I actually phoned Dr. R's office today and have an appointment for tomorrow. I have a large project just outside of Calgary for a couple months so its convenient for me to go see her while I'm here. My home is Manitoba.

I definitely need to write a few letters and make meetings with local politicians regarding Bill C-442 and Lyme in general. Will get to this when things calm down for me work wise (which is never...).

Thanks for the advice and chats back and forth by the way. Its just kind of nice to know someone else who is seeing Dr. R and knows what its like to have Lyme in Canada.

LC
Posted 2/20/2014 12:50 PM (GMT 0)
Lyme Contractor, I can relate to everything you are saying! (I don't think my son could go without beer!) I retired from teaching at the end of June. I had hoped to go south for a month or so, but....... didn't envision this for retirement either! At least my depression is gone. It is getting better (slowly)! I spend a lot of my time researching (and lately writing letters to MP's and Infectious Disease)!

You are so lucky to get to see Dr R in person. Anxious to hear how you make out. I have really enjoyed hearing from you too. I only know of one other person working with Dr R. She hasn't given up her daily scotch and isn't seeing improvement. People without Lyme have no idea!

By the way do you remember having a rash or having a tick bite? (The ironic thing is that I had my foot operated on and was hardly outside in the spring. Outside just long enough I guess!)
Posted 2/20/2014 4:12 PM (GMT 0)
dmw52,

I never had/have any mental symptoms, although I have a lot of CNS involvement. I am glad you are improving, that's great to hear. I had a spinal tap done when I first got sick, which didn't heal for 2.5 weeks. So I was bed ridden laying down for that time, as I would lose all pressure in my head when standing. That's when I did all my research haha.

Yup I am lucky to see Dr. R in person at least once more. Did you see her in person for your initial appointment?

No recollection of a tick bite. But I practically live outdoors in the summer with 2 cabins, soccer and work. Could have been anytime. All it takes is being outside the one time I guess unfortunately!

LC
Posted 2/20/2014 11:06 PM (GMT 0)
Lyme Contractor,

I haven't seen Dr R in person; I live in NS. Spinal tap sounds brutal! Glad I missed that.

I don't know how I feel about gardening and working in the yard now. I live on a lake and spent as much time outside as possible. My son is getting married in our backyard next Sept. Wonder if that is a good idea now.

I went to Dominican about two weeks before my symptoms started, so I guess I could have picked it up there.....it seems to be everywhere.
Posted 2/20/2014 11:52 PM (GMT 0)
Can someone answer what it means if I have don't have a herx reaction when taking full dose samento and full dose banderol?
Posted 2/21/2014 12:38 AM (GMT 0)
Dmw52, thanks for your reply. Detoxing before hand is a great idea, I have been a health fanatic for years and do multiple detoxes per year plus always took milk thistle, drink lemon water and Epsom salt baths, so already a habit for me.

My hubby is herxing so sounds like I gave him Lyme, he started with a tremor in his hands and mouth 5 yrs ago. Not sure if we will try the herbal route or if we will mention to my LLDO.

Good luck with your protocol and keep us posted on the results.
Posted 2/21/2014 2:26 AM (GMT 0)
dmw52:

Just had my appointment with Dr. R. Overall it was good. She says it varies in time for people to see great improvement. She also mentioned the fact that my joint symptoms may have more to do with the damage the disease has left behind. So she put my on two more things for repair. BioSil and Curcumin. Are you taking either of these? Also she just attended a conference regarding micrology. She is now offering some sort of cell recognition and blood smear testing. Its done under a high strength microscope. Its meant to detect the active infection and mainly co-infections. I've heard quite a number of people here talk about it so sounds interesting.

My opinion regarding being outside etc. is that I won't live afraid. I will go straight back into the bush and go fishing and hunting as soon as summer comes around. If I get re-infected well....I know how to deal with it this time haha.

cpoly:

I am in the same boat as you. I have little to no herx on full dose Samento/Banderol. This is most likely that we are the lucky ones who detox easily and get rid of the toxins that are die off from the disease. On the other hand........it can mean its not quite working. But I have had small improvements after full dose for a month now so it can be a slow progress. Hope this helps.

LC
Posted 2/21/2014 2:59 AM (GMT 0)
I have found little increments of improvement if I go VERY slowly on Cowden. I would never follow his own guidelines.

A little ironic, but that's the way it is. He probably never had Lyme.

Margaret
Posted 2/21/2014 11:25 AM (GMT 0)
Lyme Contractor,

Dr R does have me taking Biosil. I've read great things about Curcumin and tried to take it when all of this started and it made my muscles tighten up (still very tight).....an allergic reaction I think. The same thing happened to my mom. You are young, so your joints should heal.

Is Dr R doing Live Blood Cell Analysis? Did you have it done? I had it done years ago when I had taken tons of antibiotics and developed a yeast overgrowth. (My classroom leaked in many places and had mould....my reaction was to have strep throat.) Does she do any other testing or acupuncture when you see her in person?

It had occurred to me that maybe you are just very good at detoxing and that is why you are not herxing. I am just starting to be able to sweat.

By the way I am ordering my supplements online for much better prices....some from Canada, others from US. Still costing $600-700 a month. Not a cheap disease to have. I worry about people who can't afford to get help!
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