I was diagnosed with Lyme disease 3 weeks ago, I was left misdiagnosed with CFS for 2.5 years untill I found an LLMD. I decided to try Samento before going on long-term antibiotics to see if this would have any effects. I have been on it for 3 weeks, first week I noticed I was feeling more tired, weak and I had more pains. Second week I had a severe herx and was almost bedridden, terrible pain, extreme fatiuge etc,etc.. I stopped all the meds for 6 days and detoxed, I felt better on day 6 off the meds, so I restarted at two drops - I have been stuck on two drops for almost 3 weeks now!. I know it's a good thing in some ways that I had a herx, because its encouraging that the Samento is doing it's job.
Just wondering how long it took for you to see improvments, if any? Did you have better improvments on antibiotics?
Posted by klutzo (Member # 5701) on :
Hi, I've been on Samento for almost 3 years now. I am allergic to all ABX except Cipro, which does not kill Lyme.
Samento made me herx so hard I had to keep the dose down to 5 drops per day for almost 2 years before I could raise it.
I also had to take an antifribinolytic enzyme (Nattokinase) inbetween meals to strip fibrin off the Borrelia so the Samento could attack it. The longer you've been sick without treatment, the more likely it is you will need to do this.
I have now been on the full 15 drop dose for about 3 months. I have settled into a pattern where I herx really hard about 7-9 days per month, and the rest of the time I feel much better than I used to.
I can drive again except for that 7-9 day period, and I can socialize again as long as I avoid crowded, noisy places.
I can sleep for 3 hrs. now before waking, where it used to be only 1 1/2 hrs. and I can sometimes go as long as 2 hrs. without having to pee, whereas I had to go every 20 minutes before treatment.
I have stopped having Lyme rages, except for very rarely when I am pushed for time and exert myself too much, and I can get them under control now.
It took a really long time to get this far, but I had been sick 20 yrs. with two misdiagnoses, before being dx'd with Lyme. My Bowen test showed I had the highest possible level of Lyme in my blood before treatment.
I still have major neuroborreliosis, since Samento makes me have insomnia, so I do not divide my dosage equally. I take 9 drops in the morning ,and 6 drops at night.
I am now trying the Cowden Protocol, where I alternate Samento for 2 weeks with Cumanda for 2 weeks, and use Burbur for detox. I make sure to take plenty of Mg citrate and B complex, in divided doses throughout the day and digestive enzymes with all meals.
I definitely get results, though I feel in my case, it may be too little too late. However, I have no choice, since I am allergic to ABX.
Klutzo
Posted by wrotek (Member # 5354) on :
klutzo how do U find difference between allergy to antibiotics and herxheimer reaction ?
Posted by GiGi (Member # 259) on :
Samento is much for effective if you combine it with some electrolytes. You get much better absorption and transport of the active ingredients through the cell membrane. Electrolytes also activates all Autonomic Nervous System functions and improves trans-cell communications.
Dr. K. suggests to patients to mix the daily dose of PC-Samento into a glass bottle of good water, with the electrolytes, and drink it throughout the day.
He said recently: "In my work this product has shown the most consistent action against Borrelia, Bartonella, Ehrlichiosis, Rickettsia, mycoplasma and other infections. Herxheimer reactions are expected and may occur at any stage of the treatment (on the first day of use or after many months) and repeatedly. During herxes I recommend colon hydrotherapy, KMT lymphatic drainage, common sense diet, moderate exercise, drinking more water than usual, a a massage and a nurturing environment."
I have been told that he also adds some of the other herbal tinctures (PC-Noni, Sarsaparilla, Polygonum, Andrographis) into the mixture, a bit of honey for taste, drinking it throughout the day. Glass bottle only - n o p l a s t i c . He tests the patients with ART for compatibility.
Take care.
Posted by troutscout (Member # 3121) on :
Gigi,
What is "PC" Samento?
Trout Posted by SForsgren (Member # 7686) on :
It is the name for the specific product offered by www.BiopureUS.com Posted by JeffM (Member # 8919) on :
I take Cats Claw, Uno de Gato, and No, it has not helped.
Posted by klutzo (Member # 5701) on :
Wrotek - Have skin tests for antibiotic allergy at an allergists office. That's what I had to do. I was hoping it was just herxing, but alas, I had 4+ level allergies to all of them (that is the highest possible allergy). If I ever get pneumonia, I'm a goner.
BTW, severe allergies to just about everything are a sign of TH2 immune dominance, and you should probably avoid general immune stimulants like andrographis, cordyceps, echinacea or astragalus, for example. - - - - -
Gigi - I did not find Sarsaparilla to help me, though I know it helps some folks. Andrographis almost put me in the hospital with a strong allergic reaction to something that had not bothered me before. It is a general immune stimulant, so is not a good idea for those like me, who are already very Th2 dominant. I stick with immune modulation, using Samento and Cumanda to try to nudge my immunity back towards Th1.
I do not know about the sipping all day protocol...interesting! That may work for some, but I was told to take Samento on an empty stomach, at least 30 mins. away from anything else, and since I am insulin resistant and must eat 5 small meals, that means twice daily dosing, first thing in the am and at bedtime. - - - - -
Jeff- You might want to try Samento before giving up. Buhner believes Cat's Claw is better, but most docs disagree and almost all of the Lyme research is done on Samento. I say, whatever works for you is fine. Samento is supposed to be much stronger, and make sure you use the liquid extract, not capsules.
I can tell you from personal experience, that capsules are nothing compared to liquid. I got zero reaction from maximum dosage of capsules. Also, give it plenty of time, at least a couple of months.
It is only the super-sickies like me who herx on one drop right off the bat. I had gone untreated for 17 yrs., and been diagnosed with fibromyalgia, which meant I was frequently injected with cortisone too....the worst possible thing for Lyme.
Klutzo
Posted by geniveve (Member # 8646) on :
i, also, tried the capsules. 500 mg. did absolutely nothing.
Posted by GiGi (Member # 259) on :
Trout, rather than my fumbling around trying to describe PC-Noni and PC-Samento, go to Dr. K.'s website and read through the article "Lyme Disease: A Look Beyond Antibiotics." He describes it there under PC-Noni, etc.
PC-Noni and PC-Samento are also carriers of sophisticated anti-Lyme frequencies. He tells there how he instructs his patients to use these agents.
To everyone else interested, per Dr. K. the tinctures get readily into the tissues where they are needed when used with electrolytes. They are even more effectivwe when using phospholipids as a shuttle agent for the herbs into the cells.
PC-Samento has to be activated by acid. Either add the daily dose of Rechts-Regulat (acidic ph) into the bottle or take on empty stomach, when stomach-ph is low.
Often the capsules do not make it to the place where they are needed.
Lots to consider to do it right. Don't always blame the med if it isn't having effects as you expected.
Take care.
Posted by 5dana8 (Member # 7935) on :
I am sorry for my following stupid question:
I thought cat's claw & samento where the same thing becuase in Bruhners book they are lsited togeather...
What is the difference. Is it the same herb? Is it one is in liquid and the other in caps?.
Posted by JimBoB (Member # 8454) on :
Dana:
The CORRECT name is Uncaria tomentosa, U. Guianensis.
The COMMON names are Cat's claw, Una de Gato, Samento, Saventaro.
SOMEBODY, decided that they wanted to differentiate the TOA-free Cat's Claw from the whole herb Cat's Claw, so designated IT the name Samento. However, Samento IS the correct name for the "normal" whole herb Cat's Claw, ALSO.
There are actually many species of Cat's Claw. Research data IS incomplete, but many of the others may or may not work as well as the Uncaria tomentosa.
It is INCORRECT to state that TOA-free Cat's Claw is better or more effective than the complete Cat's Claw herb. This is a controversy because of a single series of in vitro studies, that is in test tubes, in labortories. Not in real life, real people. (in vivo).
That is provable and has been.
I use Cat's Claw WHOLE HERB along WITH Devil's Claw, BOTH in capsules with GREAT affect on arthritus, plus other symptoms I had. AND I did not have to wait long to get results. I had results last November, in about 5 days, from my Lyme arthritis symptoms.
It is important you do NOT take ANY acid blockers with Cat's Claw. Also you need to quit taking it at least 10 days BEFORE any surgery.
As to CIPRO, NOT killing Lyme, I personally can attest that it DOES kill much of the Lyme Spirochetes. But like any antibiotic, it does NOT kill them all. And IF you have had Lyme for more than the intitial few weeks, you will most likely have a relapse. Just like any other antibiotic. ALSO, Cipro, kills your COLON. I personally know of cases where this has happened. THAT side effect is quite common with Cipro.
GIGI: I agree with you that we DO need Sarsaparilla, to keep our blood cleansed. Without that, we are SURE to herx a whole bunch more. AT least 90% or more of us do. THose of us who are not straddled with highly abnormal allergies, that is.
Also, for most of us, Andrographis is very important and the MOST important herb in Lyme Spirochete killing. It is highly recommend for those of us who have had long term Lyme. Whereas Astragalus is NOT recommended for those of us with Chronic Lyme.
We MUST be careful to differntiate between those two when treating chronic and late Lyme Disease. Otherwise we COULD get ourselves into trouble.
Stephen Buhner IS the master Herbalist, and certainly knows what he is talking about in his Healing Lyme book, to be sure. THAT book has the whole scoop on the Th1 and Th2 levels and what WILL and what will NOT work for it.
Jim
Posted by ChrisBtheLymie (Member # 8916) on :
Thanks for all the info.
I will stick on this Samento for 3 months untill I next see my LLMD, I will ask to move onto antibiotics as well as Samento. I have managed to get onto 4 drops a day now, so hopefully I can stay on this for a while.
Posted by 5dana8 (Member # 7935) on :
Hi
Has anyone tlked to their LLMD about the safety of mixing samento/ca6ts clae with the abx?
This question I am to ask my LLMD soon. I don't have an appt. till may but will call.
Does any one have any experiences/ bad reaction to mixing like a single abx into buhner's herb combo's?
Thanks ya'll dana
Posted by JimBoB (Member # 8454) on :
I have over two months exerience with the mixing of Buhner's Herbal protocol, (actually I have added other into it too), with abx.
I have reported that several times on this group.
I personally do BETTER withOUT the abx as far as HOW I FEEL. That is NOT to say, I wasn't killing ketes. I just FEEL so much better withOUT the abx.
AND because of my super sensitive stomach, I just do not want to go back on abx. Just not worth it to me, at least not at THIS point in time.
I AM getting better on just the herbs right now. I killed about all the ketes I can with the two months of abx along WITH the herbs. NOW it is up to the Herbs to do it the rest of the way.
jim Posted by JimBoB (Member # 8454) on :
JeffM:
HOW do you KNOW it has NOT helped? Have you been tested both before and after by Ingenex to find out before and after counts?
Jim Posted by ChrisBtheLymie (Member # 8916) on :
How much does the Igenex test cost? I have been tested through my U.K LLMD who uses Bradford darkfield microscopy, he has seen the keets in my blood, I was bitten by a tick 6 months before coming ill with litterely 90% of Lyme symptoms and I had a severe 'herx' when starting Samento - so we are both pretty damn sure I have it - But I am quite interested about the Igenex test, not sure if my G.P would be too happy. Do you think it's worth it? Not sure how common co-infections are in the U.K, but it will put my mind at rest to be tested by Bowen or Igenex.
Posted by wolfbelv (Member # 8872) on :
ChrisBtheLymie:
I don't have the complete price sheet handy, but I do know that the IgG Western blot costs $95, and the IgM W. blot costs $95. (Igenex) I think you'd want both tests, if not others as well.
Posted by 5dana8 (Member # 7935) on :
hi ChrisBthelymie
You might want to call igenex first about the shippimg your blood situation because you are in the UK.
The phone # is 1-800-832-3200
I don't know the details but I think that you don't want your blood shipped and waiting in route for a long time. Maybe you could overnite it. They would know better the details.
Take care dana
Posted by JimBoB (Member # 8454) on :
Yes, Chris, it would cost you a fortune to send it over here, especially overnighted, IF that is even possible. I doubt that. Probably 2 day is the fastest from there to California.
If I remember right, someone reported that it costs $390 for an Ingenex test.
Jim Posted by ChrisBtheLymie (Member # 8916) on :
I will probably give them a ring, thanks for the help. I was going to have the Bowen test and fedex said it would cost around �38 ($65) I think Does Bowen and Igenex test for Bartonella?
I just can't imagine paying all this money and getting a false-negative. How often do false-negatives happen at Igenex?
Posted by Truthfinder (Member # 8512) on :
Hi, Chris (I met you before on another board) - good to see you here!
I know that Bowen does not test for Bartonella at this time. I think Igenex does.
If I understood correctly when I called, the prices I got from Igenex last fall are:
Lyme, 2 Western Blots: $190.00
Babesia antibody test: 125.00 or Babesia, PCR test: 197.00
Other co-infections: same as Babesia
From what I have read on this board, I don't think I would go with any PCR tests. It is a sensitive test, but only works if they happen to catch some Lyme DNA in the sample taken. It sounds a little too much like gambling for me.
Sadly, there is a chance of a false-negative with any of the antibody tests, from what I understand.
Tracy Posted by Elinor (Member # 8174) on :
The Bowen test looks for borrelia, babesia and erlichia, I think the bartonella test is a separate one your doctor can do if you have the symptoms.
You can send blood to Bowen from the UK but from some areas it can take two days, this is ok as long as you tell your doctor and he can make a slight adjustment to the serial dilution number. Make sure to send it on the day the blood is drawn and at the start of the week.
Posted by ChrisBtheLymie (Member # 8916) on :
Thanks Truthfinder!! and Elinor.
Think I will go for the Bowen test, think it will provide some useful info. I did send a request to my G.P but she hasn't replied - she is either away or doesn't like the idea.
It will help put my mind at rest a little to be tested for the coinfections, but I don't seem to have many coinfection symptoms, apart from mild night sweats?
Thanks again.
Posted by Elinor (Member # 8174) on :
It's very unlikely that your GP will know anything about the Bowen test, and even less likely that the NHS will pay for it.
Your LLMD will have all the details though and will be able to send you the kit with everything you need for organising sending the blood by Fedex. You will just need your GP or their nurse to take the blood, most will do that, then you will have to arrange the pick up by Fedex and fill in the forms etc.
Posted by JimBoB (Member # 8454) on :
Chris, don't hold your breath waiting for your GP to reply. IF your GP is ANYTNING like MY GP, you will NEVER hear back on it.
Therefore I have NEVER been tested. I don't have the money for an LLMD. BUT I was clinically diagnosed by my GP 6 years ago. AND more or less treated at THAT time, but relapsed later and he wouldn't do anything this time. Nada!
SO, I am self treating, mostly with herbs, but did do some abx, too.
Today, it feels like I don't have Lyme at all. I do have to fast the next few days though, and probably won't take any herbs then, so don't know WHAT that will do.
I have an illesotomy and my skin is burnt below the stoma and it won't heal now, so have to fast, only water till it heals.
Jim
Posted by ChrisBtheLymie (Member # 8916) on :
I just phoned my doctors and my G.P sent a letter to Bowen 10 days ago requesting the test, but the letter was sent to the wrong person. I will give Bowen a ring later, looks like it's all sorted though.
Thanks for your help.
Posted by JimBoB (Member # 8454) on :
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dana
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