klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Hello fellow Herb Users,
Can I pick your brains for a minute please? I apologize for the length of this post. I am trying to be as clear and brief as I can be and still get the basis for my questions across. Thank you.
There is a saying that goes something like this: If you keep doing what you've been doing, but expect a different result, that is the definition of insanity. Not wanting that definition to apply to me, I think I may need to try a different herbal protocol....(For those who do not know me, I am allergic to all ABX but fluroquinolones, so that option is out).
After 3+ years on herbs, with 2 1/2 of that on a modified Cowden Protocol (modified by my inability to tolerate more than half of the high prescribed dosages without death-dealing herxes), I have improvement in some areas like Lyme Rages, but over all, I am worse or at best, breaking even. Besides, the improvement in Rages may be due to my DHEA supplement, not the Lyme protocol.
Selma and JimBob's improvements are inspiring to me, and give me hope. Since I have already thoroughly read Buhner's book, I am thinking of trying a modified Buhner Protocol (modified by my bad reaction to Andrographis, ie. it made my MCS dangerously worse, and raised my already high blood pressure).
I went to Raintree's web site to read about their Cat's Claw, the only brand Buhner recommends. I was surprised to see it listed as an "immune stimulant". I then checked other sites that sell it, with the same result.
Samento, (TOA free Cat's Claw), which is what I've been taking on my current Protocol, is always referred to as an "immune modulator", rather than a stimulant, which I think is a rather important difference in a disease in which one side of the immune system is upregulated, and the other is downregualted.
I would like to know if any of you have tried BOTH Samento and Cat's Claw at different times, and if so, what differences did you note? Thanks.
I am concerned because even though I am definitely very late-stage in Lyme, with documented brain and heart damage, I still seem to be definitely TH2 dominant, with the severe MCS,and allergic to everything, etc. typical of TH2 dominance.
Buhner says this constant TH2 dominance is typical of autoimmune diseases, NOT Lyme. I have been extensively tested over the 21 yrs. of my illness for other diseases, but only the Lyme testing (2 Bowens) was very positive.
This has left me wondering if I do have an autoimmune illness instead of Lyme, and the reason for my endless heavy herxing on Samento with little to show for it, is because the "herxing" is really a further upregulation of my already upregulated Th2 immune system, therefore making me worse, not better. Increased immune TH2 cytokines can cause all the symptoms we call "herxing".
I have already ordered Huperzine A, Source Naturals Resveratrol, and an effervescent vitamin C formula to add to the things I already take (there is considerable overlap between the Cowden and Buhner Protocols).
However, I am on disability and money is thin. So, before I go ordering Raintree Cat's Claw powder, when I still have a six month supply of Samento liquid extract left, I would like to get some opinions on the above from those of you who have experience with herbs, like Selma and JimBob, and any others with helpful thoughts....I appreciate your input!
Confused, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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TerryK
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Member # 8552
posted
I had problems taking samento (tried it for 7 months) and I recently consulted with an ND (seemed quite literate with lyme and co's) who said that one will not get better on samento if they have babesia.
Just thought I would pass that along. I can't answer your other question about samento, sorry. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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oxygenbabe
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Member # 5831
posted
Can you try a mild hyperbaric oxygen chamber to stabilize your system for a few months?
Posts: 2276 | From united states | Registered: Jun 2004
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I'm also about to start the Buhner protocol and have already begun taking some support supplements he recommends. I also have taken my first dose of salt/c today and am experiencing a mild herx from it.
I know how hard it can be when you're trying everything and nothing seems to work. You have hope one moment that it will get better and then a while later you feel as if you're out of steam and out of choices.
A very important thing to remember is that there is ALWAYS something else out there to try, even with limited funds and ultra-sensitivity--as long as you believe in your capacity to get well, your body will (slowly) follow your lead.
One of the worst things about this disease is how much it effects our mental state, our ability to think clearly, and our capacity for hope. I can imagine at times we all have felt powerless in the face of this monster.
I have just begun my own fight against Lyme's, but I have had the experience of suffering from a debilitating immune deficiency before (fortunately or unfortunately for me) and if there's one thing it taught me it's this: anyone can find health.
The key is finding what works for your individual body and spirit. I have no doubt you will discover your own protocol despite your complex health situation and sensitivities.
Just a few suggestions that may offer possibilities. I've been in touch with a couple people who have had positive results with the salt/c protocol.
This is a very cheap, though experimental program that may be of some benefit to you.
Also, biotic silver--I think there was a recent post on it here.
Oil of oregano is also another possibility.
I imagine you've already done a whole lot more reserach than I have on these and other protocols, but I thought I'd throw them in just in case. I have had die off from each of these products--so much so that I'm certain they work.
In any case, I wish you nothing but luck and health on your path to wellness and i hope you are able to coordinate a plan that will work well for you.
I wish I had more experience myself with herbal remedies for Lyme's, but that's about all I've got. I've read some of Selma's and Jimbob's post and I agree they are inspiring. It helps so much to hear from people who are further along in their recovery...
In any case let us know how you're getting on with your change in protocol,
Ashley Posts: 77 | From New York | Registered: Oct 2006
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in two short years, you won't be able to get any of these herbs anymore - unless the public is made aware and responds.
go to the site, learn, sign petitions, send a few emails and post this around your town with any businesses that sell or treat with herbs.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Klutzo, I just answered your PM, but I didn't answer about Samento and Cats claw.
I took the allergy research brand pills toa free many many months ago (last year), I had some reaction to it, some improvement I guess, but also liver pain. I felt toxic with it, then stopped after about a bottle (or two, can't remember).
When I changed to raintree version, I felt better, much less pain if kept about level 2 of Buhner's protocol.
I'm very thin and very sensitive to things like homeopathy, I'm knocked down with any antibiotic I ever took before lyme, so I may be an exception.
I wrote to Buhner long time ago to say that there were papers saying that some long stage lyme sufferers were TH2 dominant, not TH1. He said all papers he had got in his hand at the moment of publication said the opposite, that's why he wrote the warning about astragalus for long time sufferers (as it induces Th1 reaction).
But he added that lyme is so complicated that he wouldn't be surprised about these 'exceptions'.
So you could then try astragalus? He wrote in another email about astragalus to my little daughter, that it's a very 'inoffensive' herb, it can take in loads without being ever toxic. All other herbs are more toxic than astragalus.
I used astragalus a lot in the beginning (until about May this year).
You could also contact the man, he's so nice. Your question is important so he may answer soon if not too busy.
Hope others will come with more answers, Klutzo. Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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If you are looking for immune modulators to balance out any Lyme protocol you do, look into serrapeptase, CMO (cetyl myristoleate), and the long chain polysaccharides from aloe vera gel. Also flaxseed oil, nuts, and anything with Omega-3's in it. These are used by a lot of people with auto-immune problems to regulate immune functioning. It sounds like you need to look at this side of it in addition to doing things to kill Lyme.
Also for the brain stuff, this is not herbal, but cranialsacral bodywork on my cranial bones, neck, and spine helped me a lot in addition to supplementation.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Wow! I really appreciate all your responses. I guess I should have mentioned how many other things I've already tried to save your time, but my post was already so long, sorry....
Terry - I have 2 negative Babs tests, and all quinine derivatives make me stop breathing. This includes herbals too! I have no Babs sx except chills, and those are one of the few sx Samento has relieved by 95%.
Oxygenbabe - I cannot begin to afford hyperbaric oxygen. We already cut all fat from our budget, and there is no juice left in this tomato! Thanks for the suggestion though. If manna drops from heaven, I may try it out. Glad you can do it.
Ashleygait - I can't do Salt/C because I have poorly controlled high blood pressure and it does appear to be salt sensitive. I already tried oregano oil at max doses X 2 mos with no response at all.
Mo - I signed Codex petitions over a year ago, and have posted on another thread here about it. It is truly scary, I agree. I will die without my Mg supplement, let alone my herbs.
Selma - I wrote to Buhner when I read his book a long while ago, but he did not answer. He most likely has not read Paul M. Cheney, M. D. He needs to remember some good info is written under the several other diagnoses that Lyme most often imitates, like CFS, which is what Dr. Cheney writes about. Cheney makes a darn good argument for TH2 dominance. At least Buhner is willing to allow exceptions.
Astagalus stimulates the whole IS, which scares me with my TH2 in overdrive. I'm afraid it would do the same thing to me that Andrographis did.
Farah - I took Serrapeptase for months, and almost a year for Nattokinase. Did not notice any change. I eat nuts 3 X day, eat safe fish once weekly, and take krill oil twice daily, but can't tolerate the effect of even tiny amts. of flax on my bowel. I already had cranial-sacral therapy. It helped my TMJ some, but was far too expensive for the results I got.
I am very glad all of the above things worked for some of you! Shows how we are all different.
Does anyone have an opinion about these herbs maybe working by making immune overdrive worse, rather than it being real herxing? Or are you all convinced you are really improving, not just in a temporary remission? (I think it's important ot play Devil's advocate, and doubt everything in order to find the meat hiding among all the fat!)
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Alternate all herbal products at least every week. If people are ART tested, the same herbals hardly ever show up as compatible.
Review Selma's notes. She is changing her intake. Our body changes -- it does not want the same agents just as it does not want the same foods all the time. As if the Liver/Kidney saying: " There she comes with her same old "herb" again, which puts me into overdrive. I am going on strike (autoimmune reaction)."
Surprise your bugs and your organs with something new.
Include the Rizoles (Ozonated Oils). Alternate them if you do not have anyone to energy test you frequently.
If you feel really miserable after taking something, this is not a herx. Stop taking it and wait a day or two or 7 and change to something else.
This is what I learned over a number of years. And I really got well this way.
Unless you have done an extensive heavy metal detox and cleared all dental infections, autoimmune problems will not go away.
I have in front of me a folder about two inches thick covering the spoken word of a three day seminar. I have the index to it also. Every time the word "autoimmune" appears, the words "heavy metal" contamination is part of the sentence. Autoimmune discussion appeared more than 20 times during the 30 hours of lecturing. Several hours were spent on Lyme, metals and autoimmune reactions. Metals always first.
It is very clear and Dr. K. discusses this every time he lectures on Lyme:
You cannot eradicate the overload of microbes without severe consequences (as you tell them) if you are still heavy metal toxic. You spill the heavy metals with the bacteria die-off, they are excreted via the liver into the bowels and they are reabsorbed again in the colon to be resettling elsewhere in the body. It is a mad merry-go-round.
Some kind soul translated this seminar that took place in Switzerland several years ago. I have the video, but here read some of what Drs. Klinghardt and Kane had to say:
ARTICLE
Without claiming completeness, brought in readable form using own wording. If you want to see Dr. Klinghardt and Dr. Kane as originals, you have to get the videos.
Dr. Klinghardt: 1. In all chronic diseases heavy metals play a role. So please don't ask: May heavy metals play a role at my MS or my Morbus Crohn? The question is answered: heavy metals play a role at all chronic diseases.
2. Heavy metals lead to chronic infections by fungi, bacteria, mycoplasma, viruses. But it is a big mistake to treat these infections without changing the milieu.
3. We all have neuro toxins in our body. Under these neuro toxins mercury has a special importance, because it prevents detoxification. When mercury is removed, then the other toxins tumble out. Neuro toxins lead to "Neurotoxine mediated chronic illness".
4. Heavy metals are excreted via liver into the bowels and are resorbed again in the colon (enterohepatic cycle). This cycle must be interrupted. The green algae Chlorella pyrenoidosa is suitable for this. Beginning with 4 x 5 to 6 g per day, this dose may be reduced after 6 weeks
5. All fish has heavy metal burden; the higher in food chain, the more its contamination (the shark eats many fish, which have eaten many other fishes, is much more contaminated than the little fish). Therefore pregnant women should not eat fish or, if they do, then with
6. There is a synergistic effect between different treatments for heavy metal excretion. The combination of Chlorella - bear's garlic - Chinese parsley is after all the basis of heavy metal excretion.
7. Heavy metals disturb the fatty acid metabolism, which can result in neurologic defects. But the nerve system may be "repaired" by certain fats and oils.
Neurologic diseases increase massively, e.g. autism. Autism is made by damage of the immune system by vaccination and heavy metals. Damage by vaccination concerns enzymes of the fatty acid metabolism of the nerves. At those children first of all you have to excrete the heavy metals,. with 6 g Chlorella 4 x per day, and bears garlic.
During detoxification infections will be visible, because after dropping the mercury the bacteria can once more grow in the body. Heavy metal load induces weakened immune resistance, and so viruses, bacteria and fungi are not really rejected and are chronically at half sleep. But because of the antibiotic property of mercury can not really grow. If the mercury is now excreted, then these bacteria and viruses get the chance to grow. Result: there is no heavy metal excretion without infection, including muscle pain and headache.
Some statistics: 400 - 500 years old skeletons and the bones of persons died in 1987 - 1997 have been examined for lead. The modern bones had 500 - 1000 times more lead than the old. Lead inhibits development and disturbs formation of blood. Since some years lead is out of the petrol. But now carcinogen chemicals (MTBE) are in it. So the neuro toxins are replaced by carcinogenes.
Now Dr. Klinghardt gave the floor to Dr. Patricia Kane, a leading food expert in the USA, who reported about her research on essential fatty acids and her treatment of neurologically ill patients. Dr. Klinghardt translated (into German):
60 % of the brain are lipids. Mercury is lipophil. Mercury goes, where fats and oils are. So the brain is damaged.
There is a good message: a brain damaged by toxins can be "repaired" partially by adding the right, essential fatty acids and by avoiding of the wrong fatty acids.
In the interior of the cells there are, besides other structures and the mitochondria, which had been the center of research so far, also peroxisomes, or organelles. In these peroxisomes all detoxification takes place. The metabolism via Cytochrome P450 takes place in the peroxisomes. In the peroxisomes the fats are burned (i.e. processed).
At persons poisoned with mercury, long chained fatty acids, which can not be broken down, are established in the peroxisomes. If mercury makes the peroxisomes be sticky, detoxification is impossible.
The cell is filled with microtubules (tube structures). They are important for the transportation within the nerve cells. Emotions go along these tubuli. Also mitochondria wander along these tubuli. Brains with mercury loose these tubuli. Mercury damages proteins in brain as at Alzheimer. The damage is identical.
60 % of the brain are lipids and also the membrane of each cell consists of a double lipid layer. Fatty acids are among others responsible for the transport of information and nutrition through the cell membrane.
An unsaturated fatty acid has a long chain with strong vibration. A saturated fatty acid has no vibration, it is stiff. When mercury nests into the chain of unsaturated fatty acids, the vibration stops, the fatty acid becomes stiff. Also the fatty acids in the cell membrane are damaged by mercury. The mercurydamaged cell is stiff, the transport of information and nutrition will be impossible.
The cell needs fatty acids for its normal functioning. But with damage of the cell membrane too much fat could be in the blood - but, caused by the disturbed transport mechanism, too few fat in the cell.
Heavy metals consume Omega-6-lipids, which are - among others - serve as predecessors of the arachidonic acid, which is very important for the body. Twelve years ago Dr. Klinghardt recommended to his patients to eat 6 eggs per day - because of its sulphur and its arachidonic acid. This fatty acid is also found in butter and cheese.
What has to be taken into account now to give the burdened brain, what it needs?
At the intake of fats the balance between Omega-6 and Omega-3 is very important. Omega-6-oils are in sun flower oil, thistle oil and evening primrose oil. From this the protaglandins-1-seires is established, which is important for the communication in the cell. Omega-6-oils are also in meat and butter, from which the prostaglandins of the series 2 are produced, which are among others important for the production of the leukotriene (inflammation mediators). Omega-3-oils are in fish or in linseed oil. Consideration of oils is essential for mercury detoxification.
The work of Dr. Yehuda and Dr. Rabinowitz is important, e.g. Fatty Acids and Brain Peptides" (Peptides 1998;19(2):407-19). Dr. Yehuda recommends a balance of 4 : 1 between Omega-6 and Omega-3-oils, e.g. 4 parts sun flower with 1 part linseed oil.
The oils should be biological, cold squeezed, in dark bottles and cooled. In the USA there are manufacturers, who cool their oils from the beginning. Just during the two days of mailing the oils are not cooled.
If you want to know it exactly, you have a lab in USA, which can find out by blood test, which fatty acids are missing in the patients brain (see addendum). The lipid concentration in the red blood cells is measured, this correlates with the lipid concentration in the brain. Then a diet plan with exactly fats and oils is recommended.
An other point should be considered at detoxification. The Phospholipase 2 (PLA2) destroys essential fatty acids. Therefor PLA2 stimulants should be avoided
Insulin is a PLA2-stimulator. So the patients should have a diet with low carbohydrates, a maximum of 6 bread exchange units per day. Dr. Klinghardt adds: avoid all grain, also rice. No bread! So eat in future vegetables with eggs.
With increased PLA2 the following happens: - membrane lipids are lost - prostaglandins synthesis is disturbed - the membrane permeability is disturbed - the homeostasis is disturbed.
The therapeutic goal at brain diseases is to break down long chained fatty acids. So you should avoid peanut oil, rape-seed oil and mustard, because they contain long chained fatty acids. E.g. at autistic children we work with evening primrose oil and electrolytes.
First nutrition has to changed, missing substances have to be added, then detoxification. Dr. Kane and Dr. Klinghardt trace autism back to a heavy metal burden. With the method described above Dr. Kane has cured some children with diagnosis autism.
Now Dr. Klinghardt spoke until the end of the evening:
There are 3 kinds of mercury: metallic mercury, mercury salts and organic mercury. In an amalgam filling there is often 500 mg mercury. Basically in 2 fillings there is enough mercury to kill a person. But mercury leaves the fillings very slowly, and so the body has time to distribute it all. Bacteria in mouth and gut change it to methyl mercury. It is that methyl mercury, which is carried from the mother to the child during pregnancy. If then additionally the child is vaccinated, sometimes the burden is too big after the 3rd or 4th vaccination, it is enough. In USA a child of 5 years has gotten 33 vaccinations.
In former times mercury chrome was a source, which has meanwhile been taken from the market. Now mercury is available in drops for ears and eyes, in thermostats, in liquids for contact lenses.
As soon as the blood brain barrier is damaged by mercury, all other poisons can pass into the brain unhindered.
If the body is filled up with all those good things, which the body needs, then there will be a competition - mercury is released out of the compound. If calcium is dosed very high, mercury is released.
Complete detoxification is possible with goat whey, Chlorella, Chinese parsley and bears garlic. If you don't find goat whey, you can take sheep whey or cow whey as a replacement.
If you don't tolerate Chlorella, there is an alternative with sauerkraut, 4 x per day 2 spoons, also with apple pectin or Chitosan, which is made from the skeleton of insects.
At patients, who suffer from Parkinson's disease, also at MS and ALS, additionally to the above mentioned glutathione is injected.
Asthma sufferers are successfully treated with selenase: inhale with sprayer 1 ampul of selenase per day, during 3 weeks. This therapy has worked until now with every patient.
At brain patients the poisoning is also in the guts. Formerly detoxification was given i.v. (intravenous). But mercury poisoning is mainly in the guts. Dr. Klinghardt had a patient, a dentist, who excreted after DMPS i.v. just 2 micro g / liter in urine. Then Dr. Klinghardt injected DMPS into the stomach - and in urine there were values of 1500 micro g per liter! A little bit DMPS into the stomach skin - and via nerves and spinal cord the guts were detoxificated. So it is important to inject small quantities directly at the concerned place.
If somebody is chronically ill, then he has a heavy metal burden. In the center of malign tumour there is always heavy metal. But be careful: mercury is volatile at room temperature and escapes even from the tumour tissue!
A hair analysis is a good supervision of effectiveness of detoxification. The first analysis has to be done before the beginning of the detoxification, the second 6 weeks after beginning of the detoxification. If heavy metals are increased at the second analysis, then detoxification is efficient. If not increased, then the detoxification schedule is useless and should be changed.
Detoxification in short words:
1. goat whey 2. oil schedule 3. diet: low carbohydrates, many proteins (amino acids are needed for transportation of mercury). When diet is changed and minerals are supplemented, detoxification can start. 4. Basis of detoxification is the combination of Chlorella, bear's garlic and Chinese parsley. It is important to say, that strict vegetarians, who don't eat eggs, will get difficulties at detoxification.
There is a new kind of Chlorella, which is grown in glass tubes, which is better (cleaner) than the types of Chlorella used until now.
Following: enumeration of further methods of excretion.
At last some remarks concerning the discussion: selenium yes or no. Most people have selenium deficiency and need selenium. Too much selenium binds mercury in the brain.
� Chlorella pyrenoidosa: a sweet water algae, which always has played e big role in Chinese medicine. It can mobilise and bind to toxins. So they are transported out of the body. The enterohepatic circulation is interrupted. Detoxification goes via liver and guts. Algae are dried and pressed to tablets. � Bear's garlic (ransom, B�rlauch, allium ursinum) contains sulphur compounds, binds to mercury and excretes it via liver and guts out of the body. � The cell detoxifying effect of Chinese parsley (Koriander) was discovered and described by Prof. Omura. The therapeutic experience is impressive, but be careful with dosage. (Excretion of heavy metals by Chlorella, bear's garlic and chinese parsley was discussed in detail in Dr. Klinghardt's first lecture 1998 in Z�rich. From then there is also a video, which can be delivered by Paracelsus Pharmacy in Einsiedeln.
Personal: Auditorium Maximum of the ETH Z�rich (Translation)
(Please note that this is already five years old and more is being learned all the time. The Body-Bio Lipid test is questionable. Dr. K. does not use it because he is of the opinion that the lab parameters are incorrect. He uses a different lab now, if necessary. He uses energy testing most often to see what is missing in form of oils.)
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
Thank you for posting this, klutzo. I too have been wondering about the herbal "immune modulators" and whether they're okay if you have autoimmune tendencies. My rheumatologist says to avoid astragalus, echinacea, Co-Q10, and melatonin. Don't know if this is true. She didn't seem familiar with many herbs.
I wish I could find an immunologist who works with herbs. In the mean time, I like Gigi's assessment. Am looking into heavy metals next. Thank you, Gigi, for all the great information.
Posts: 30 | From CA | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi klutzo,
About one month into abx treatment, I read a summary of Buhner's protocol. Still have to buy the book, but since then I have been taking resveratrol, freeze-dried garlic, and stephania extract.
I have had some good progress since starting with these, so am sticking with them. And pulsing the NOW's Cat's Claw extract and Andrographis.
Andrographis works fine for me if taken at night before going to sleep.
Wishing you good health and hope you find the right combination for you!
What is MCS?
Posts: 2557 | From home | Registered: Aug 2006
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Whoa, Dude. Sorry, I thought you meant something else.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
More great info, thanks!
Gigi - I took notes from your notes! I will look into the rizoles and see where I can find them......never heard of them before. (I went and Googled, only found one article. There are so many different kinds, and it says you need a health practitioner experienced in using them to know what to use and how. The only one I have on hand is castor oil).
I am now taking 4 grams of chlorella daily because that was the lowest amt. I could take that would diminish the herxing, but I see Dr. K recommends more, so I will raise it again.
I love butter and cheese and recently started eating them again, since nothing I do seems to help my weight anyway, so maybe it will have good health effects too...that's nice to know. My cholesterol already dropped 44 pts. contrary to what conventional docs would expect!
So far, I have gotten the best progress from using just Samento for long periods of time with no breaks, so constantly changing goes against my experience, but I can try to do it more and see what happens.
The Cowden Protocol that I do now, requires me to change every 12 1/2 days from Samento to Cumanda and back again, with a 1 1/2 day break inbetween, and I think it has slowed me down, compared to the progress I made when on just Samento.
Kezzie's web page says to take Samento for at least a year with no break at all for Lyme, and he got out of a wheelchair with that plan, so I don't know.....There are so many things I can't take, since I am allergic to so many herbs or have other bad reactions, that the choices are few here.
May - I take 260 mgs. of COQ10 daily with no side-effects. Melatonin made me hallucinate, however, so I avoid it.
Vermont Lymie - MCS is Multiple Chemical Sensitivities.
NoMoreMuscles - Puhleesseee.... I have the munchies bad enough already!
Thanks to all of you who replied, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I'm having a similar dilemma, Klutzo.
I found that the Samento really messed with my heart, so I could never take more than 8 drops 2 x a day or I had too many episodes of fainting with tachycardia, heart flutters, that kind of thing.
I went off the Samento for a couple of months entirely, added some good vitamin E to my regimen, and got rid of all my heart palpitations and such. It was great.
Then I tried Cumanda a few days ago. YOW! That stuff is powerful! I only made it up to 3 drops and I had the fainting/tachycardia thing again, and even though I completely stopped the Cumanda, my heart still feels like it is going to lurch off into another episode several times a day.
Grrrr.
And like you, I'm leery about the salt/C thing with my heart issues. I know I can do the Vitamin C side of it - it's the salt that has me concerned.
I'm working with a homeopath right now - NOT a naturopath or a holistic person or a nutritionist or herbalist. (For those of you unfamiliar with homeopathy, if you don't know what it is, look it up. It probably isn't what you think.)
Anyway, I do believe that homeopathy is good way to get the immune system functioning in a more normal way. I think it can also be helpful for heavy metal issues, but I haven't gotten that far yet. Like most people with chronic illnesses, I know that my immune system is a mess, and that's a big part of the problem. I've already had some minor successes, and learning more every day. I've taken virtually no drugs for pain, inflammation, cold/bronchitis/sinus symptoms since I started with homeopathy 6 weeks ago, which has really helped my GI tract.
Anyway, here's my thought:
As I was thinking about your post, I thought about one of Dr. K's statements - about what he would suggest for a sick, chronically ill person who only wanted to take ONE thing. Dr. K's answer was the freeze-dried garlic (Bio-Pure). That was Dr. K's top pick from all that he has to choose from, including abx. It addresses all kinds of microbes, parasites and worms, and even crosses the blood-brain barrier.
So, that's the idea that I have been toying with as something pro-active to kill invaders of all kinds. And maybe it won't affect my heart like the herbal tinctures do.
What do you think?
Now, I think JimBob has an issue with garlic, as I recall, because it is a ``hot'' herb so would not be in sinc with Buhner's protocol. But I'm not on Buhner's protocol at this point.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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klutzo
Frequent Contributor (1K+ posts)
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posted
Hi Tracy, 16 drops of Samento is above the average treatment level dose of 15 drops per day. True, some can take a lot more, but you are considered lucky if your effective dose is lower, since the results are supposed to be just as good, but it's cheaper. If you have heart herxing (I had it too at the start) you must raise the dosage even slower.
As I mention above, Cumanda packs a real sneak-up-on-you kind of herx punch. I had less trouble ramping it up than with Samento, but it still took time. Sounds like you are definitely killing something.
Nutramedix does not believe we should herx. They used to have a customer advisor, which they stopped, probably for legal reasons. Back when they had him, he told me never to allow herxing, but to back off one drop when it starts, and keep backing until it stops. Then always try to stay one dose below it.
The problem I have had with that is the cyclic nature of the Bb. A dose that causes no herx at all one week, can bring me to my knees the next, so I am constantly adjusting and misjudging. I do not seem to follow the regular four week cycle anymore like I did 3 years ago.
Re: garlic. My very first treatment was the Zhang Protocol, which I followed faithfully for 6 months. After 3 months I had to drop one of the many herbs on the protocol, called Circulation P, since it raised my blood pressure too high. However, it was not one of the two Bb killers (one being garlic and he other HH). I kept taking all the other stuff,though it really broke the bank.
The amount of garlic on the Zhang Protocol will make vampires run from you. My husband could not stand to be near me. I had to explain to everyone I had contact with why I smelled like garlic.
It did not make me herx. It did not lower my blood pressure or cholesterol, like I'd always heard it would, and it did not seem to be doing much of anything ,except killing my love of garlic. It took 6 months after I stopped taking it before I could stand to cook with garlic again.
However, it may work great for you.....we are all different. Garlic is full of selenium, a bonus along with it's antibiotic properties. It won't hurt you and is worth a try. Dr. K's freeze dried garlic probably does not smell so bad either. Good luck with it!
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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luvs2ride
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Klutzo
I don't think anyone has mentioned your gut.
If you have leaky gut syndrome, you will develop allergies to just about everything. LGS is behind a lot of auto-immune disorders. Lyme can damage the gut as can lots of other bacteria and fungi. Bad diet, abx, and stress also can damage the gut.
If your gut is leaking, none of the herbs are going to help. You need to heal the gut. I would look into this with a doctor trained in nutrition. You can heal the gut while working on the other stuff too.
IMHO.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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hardynaka
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Great thread. Thanks Gigi for repeating the same stuff. I keep learning though everytime I read your posts, as this stuff is complicated and now without brain fog and fatigue, I can absorb better the info!!
I do think I need changing herbs constantly. Three weeks is a MAXIMUM for me, but even less is better. The point is I don't see my naturopath more often (distance problem), but she's backing up my changes!
There's one herb I never changed though, it is andrographis. I feel this herb is still new for her and for most practioners. But the tincture does not do as well as the whole herb in my experience (and Buhner's recommendations).
I feel artemisia annua whole herb works wonderful against lyme too, not only babesia. It's a strong herb and I did feel strong changes during the weeks I took it (I can't take it for too long though).
As for parasite cleanse, I did it twice. Once borrelia is there and active, parasites will keep coming, even if you're getting better and better. Borrelia will try to strike back through parasites, I feel. You kill parastites, borrelia loses one battle.
Only doing it once is not enough. I did this twice in 5 months and felt CLEARLY the difference both times. I only used lighter cleanses though (KMT and frozen garlic/ St. John's wort).
But supportive/ cleansing herbs, I keep them most of the time constant (add some with specific problems, but the basic stuff I keep).
I do feel that one need constant changes in killing herbs to take borrelia in surprise, as you said! Only andro is my magic herb, I can't stay without it without relapsing.
So probably Klutzo could stay with Samento but add things and take them off to try to give the same surprise effect!?? Just a suggestion!
Posts: 1086 | From Switzerland | Registered: Oct 2005
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klutzo
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Hi Luvs - I did work with a holistic doctor for a year, after going through 4 others who knew less than I did, before settling on him. That is all I could afford. I was repeatedly AK tested and told I did not have LGS. (I had already done quite a bit of work on my GI system on own by then).
A previous holistic doc did stool and other testing and also said no LGS, and much to her surpise, no food allergy....she had been sure that was a problem for me. I told her I had done every kind of testing there is for food allergy with no results, but she did a specialized stool immune complex test which confirmed it.
The doc I saw for a year said: "you are only as strong as your weakest organ sytem, and unfortunately, you have very weak adrenals". We treated them for a year with many products, including some of the best, but they were still testing as being shot when I ran out of money. Cortisone is not the problem. It is more complicated than that.
I have continued treating them on my own, using what testing showed to be needed, and what seems to make the most difference for me (B Complex and DHEA), but I think my genetics, and the extreme financial stressors as a result of this illness are keeping them weak.
I have read that if a mother has weak adrenals when her child is in the womb, that child will be born with them and have them life long. If I had known, I could have chosen a less stressful life (grin). My mom definitely had this problem, though she did not have Lyme. I realize that now with hindsight (isn't hindsight wonderful!).
I do continue to do preventative gut treatment, and I have always eaten a far healthier diet than most people. I agree that this is very important,thanks for the reminder!
- - - - - - --
Hi Selma, I am thinking of adding the Biopure Garlic as a third option and trying one week on Samento, one on Cumanda, then one on garlic. I admit this is tempting, partly because garlic does not make me herx, and I am sick of the endless herxing on Samento. The Biopure Garlic is much too expensive for me to take all the time and I could not find a freeze dried form in any of my favorite brands, so pulsing it would be my only option.
I did take the Zhang garlic for six months at the highest dose though, back when I had more cash, and he is the one who pioneered garlic as a Lyme tx, so I find it hard to believe his choice of garlic supp. would be that inferior, and as I said before, It did not help me much.
On another topic: Gigi mentioned in her post on rizoles that deep sleep is essential, or you won't heal. I agree. I do not believe ANY protocol works without it, and I think that is my major problem, since I have both severe alpha/delta sleep intrusion, and UARS, which is why I finally broke down and decided I must treat my apnea with CPAP. I'd been resisting it, not wanting any more misery, and those machines are miserable.
To my surprise, I got used to the machine quickly, though I still hate it, but CPAP has caused all sorts of strange and serious symptoms, and I don't know what will happen yet....I may not be able to use it. I can't live with constant vertigo so bad I fall into walls, or sciatica so bad I can barely walk, let alone exercise.
The sleep lab has my smart card from my CPAP machine and is going over it to try and figure out why it is making me so much worse. Meanwhile, I had to stop using CPAP because I could not function and my back needs to heal. (They just phoned me while I was typing this and said the doc will go over the data from the Smart Card with me this Thursday at my appt.)
I think if I can get some deep sleep, a lot of my other problems will resolve themselves....ie. it may be that my herbs ARE killing Lyme as well as they do in other people (after all, my second Bowen test showed a much lower level of them in my blood), BUT I am not repairing any of the 21 years of damage that was done, because I get zero deep sleep.
I believe if I cannot resolve the sleep problem, I might as well throw in the towel, stop spending money we don't have, stop the herxing misery, and try to enjoy the time I have left. From the symptoms I have at night due to my hypopnea, I have no doubt a stroke is on the horizon if I can't find a solution soon. I consider this to be the basic truth underneath all the surface problems.
Klutzo
P.S. For anyone confused by my use of the terms UARS, Apnea, and Hypopnea interchangeably in this post, my sleep doc says they are all part of the same continuum.
What I actually have is hypopneas at a very high rate, but with my oxygen staying OK in spite of it, this is called UARS. However, the tx is the same as plain apnea, so the docs call it OSA anyway. Confused? So was I!
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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oxygenbabe
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Hi, I'm sorry hbot is out of the question. Zhang's garlic is allitridi--available widely in China. Thats a breakdown product of garlic that is useful but not nearly as strong as allicin. My preferred source is Allimax and I get the liquid They have stabilized allicin in water. Allicin is normally broken down quickly to allitridi and other compounds. Re: deep sleep, google Jeffrey Thompson neuroacoustic and also google hemi-sync. I use their sleeping through the rain, and midsummer night. Those are binaural beat entrainment cd'S that have music overlaid, and help your brain move into theta and delta. They're not a cure but useful. I am still having significant sleep issues but they do help.
ALso for sleep try very strong chamomile or passionflower tea. I mean, 4 or 5 teabags in one cup of steaming hot water steeped for 5 minutes. Both have benzo- constituents, ie their own natural tranquilizers.
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klutzo
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Hi Oxygenbabe, Thanks for the info on Zhang garlic...interesting. I will look up the kind you take...
Once again, I am the weirdo here! Hemisync tapes made me really, really ill. I used one desgined for deep sleep and it made me shaky, and unbelievably irritated,all 3 times I tried it. I can't even find words to describe how much the sound irritated me. I'm glad it worked for you. Enya relaxes me more than any other music.
I am very allergic to Chamommile ( a close relative of Ragweed), and Passion flower is not nearly strong enough. Valerian and Lemon balm are also far too weak, and I am allergic to Hops and St. John's Wort. I must take Xanax and Clonidine to get any sleep at all.
Before I got the drugs, I once was awake four nights in a row, and had to be hospitalized. I was so tired that my hearing was fading in and out, and I could no longer walk unassisted, but I still could not fall asleep,so they admitted me, and knocked me out with sleeping pills!
Xanax and Klonopin are the only two benzos that don't wreck deep sleep. Klonopin is best, but it makes me stop breathing (it is a close relative of quinine).
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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luvs2ride
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Klutzo
Wow. Healing the gut has done such wonders for me I always bring it up first. Sure sounds like you already have it covered.
One other thought. Are you left-handed?
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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oxygenbabe
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Klutzo, darn, I imagine then that the binaural beats are not good for your brain. I'm sorry to hear that, and about chamomile and so on. I feel at a loss to help.
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klutzo
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Luvs - No, I am right handed, and my husband, who is ambidextrous, but mostly a leftie and believes they are superior, thinks this is my whole problem.... Why do you ask?
OxygenBabe - Please do not feel badly. I appreciate your efforts. You are not the first one to throw up your hands where I am concerned! I had a serious head injury in which I was declared dead at the scene. I have brain damage from that. Maybe that is why the hemisync tapes bothered me so much.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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JimBoB
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Hi Klutzo:
Sure hope you can get a handle on this one of these days. Sounds miserable.
We sure are all different all right. My wife LOVES Enya, and I liked her at first, but after awhile it really got to me to listen to her same sounds over and over. I never listen to her any more. I like lots of different kinds of music but can't listen to any one kind for too long.
And a lot of the time, I just like pure silence. More and more.
My wife needs total darkness to sleep, even wears a mask every night. I can sleep better with lots of light. It would drive me up a wall to have to wear a mask. Course she is built different than me too.
As far as Garlic, I took it for awhile, but didn't notice any improvements in how I felt, and since Sarah at 1st Chinese said it was a hot herb, and all of Buhner's herbs are either COLD or Neutral, I stopped taking it. Most days I feel better now.
I STILL have two amalgams to get rid of. Not too crazy about my dentist. Last time, he extracted a tooth, the had to do surgery, and I got an infection in my gum, and something sharp came out about 3 weeks after surgery.
Second time this has happened with him.
Have you ever tried Coptis? I have been on that now for a couple of months. Seems to work. Don't take it with Andrographis though, and take a LOT LESS of it than Andrographis. That is the only herb I am using at this time that is not in Buhner's Healing Lyme book.
As far as healing the gut, the ONLY thing that worked for me was C-Salts from Nutrition Wholesale that Buhner recommends. Did/does wonders for me. (NO salt in C-Salts).
I rarely HERX! I don't like that feeling at all. I feel the Red Root tincture, Milk Thistle and the Sarsaparilla all contribute to this lack of herxing. You do NOT need to herx to feel better. I can attest to that. To me it is a setback to herx.
How does one know the real difference between pain and herxes anyhow?
I used Oregeno for awhile but quit for the most part after Sarah at 1st Chinese couldn't find any real info on it. I know Dr. Cass Ingrim strongly recommends it, and it is VERY strong.
I find when I feel a sore throat/cold coming on; taking it does help to keep them mild and of shorter duration.
Buhner's recommended herbs are not for "killing" the Spirochetes, but rather to help keep them happy and easy to live with, so they don't cause us so much pain. AND to strengthen our own immune systems to fight them off more naturally.
3000 to 4000 mg of Vitamin C a day in the form of C-Salts, Vitamin B5, Vitamin E, Vitamin A all also help in our fight. I take the protocols for eyes, asthma and arthritis, plus the core protocol. I was up to 2500 capsules a month plus tinctures, but now I am down to about 1900 a month. I was actually down to about 1500 a month, but upped it recently and feel better most of the time.
Compared to a year ago, it is like night and day. I was probably at about 30% to 35% back then and about 85 to 95% now. Depending on the day. I could not do it without buying my herbs in bulk and encapsulating them myself. I buy most of them from 1st Chinese Herbs now. They are nice to deal with and reasonable on their prices and FREE shipping on orders of $40 or more.
I find sleep is very important. When I get tired my eyes don't focus very well, but I usually keep pushing.
I still don't eat the most healthy, but am doing a little better most of the time. Still a sugaraholic though.
I use mainly whole herb herbs. Except for my Red Root and Periwinkle tinctures and my Hu Zhang (Resveratrol), which I prefer Plum Flower Brand 5:1 powder extract.
I have not had any Artemisia annua since July when I had that bad reaction when taking it and Coptis and Andrographis together. (Even though they were low doses of each herb).
I truly hope you can find what will work for you. It is miserable to be miserable.
hardynaka
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Klutzo, oh my God, what a hell you're living... Hope you'll make it, at least finding a solution for your sleep problem.
My insomnia and night terrors got so much better and so fast with Buhner's herbs... They never returned if I kept on herbs. But I could take them all as I didn't have the MCS as you do...
As for garlic, Buhner said in Planetthrive.com that he doesn't think it's indicated to kill borrelia, but he sees it more like an immune booster.
I had the feeling it didn't kill borrelia either as my most common lyme symtpoms didn't improve with it. What it did kill were other stuff, parallel infections in the gut and brain, for that I'm pretty convinced.
I took it together with the KMT sessions. I never took more than 3 a day and it WAS strong! I tried many brands (about 6, if I remember right), many said to have allicin, but never really felt anything until I tried the freeze dried version (open in water). Tastes terrible in the beginning, burns my mouth etc, but now I'm used to it.
My prefered dose is 2 a day, taken far from Buhner's herbs. They do warm the body a bit. At this dosage, one box lasts a long time, so it does pay back. For the other brands, I was taking loads of capsules a day, and without the good results, so it was like throwing money away.
I feel frozen garlic does not kill well yeast either, at least, not in that low doses I took. For that, I took pau d'arco tincture, more specific. The combo (pau d'arco + garlic) was a strong boost, and I definitively believe borrelia lost a battle (not because borrelia was killed, but because his 'friends' were!).
I believe borrelia tries to put us down with the help from such parallel infections/ parasites, as we feel miserable when our intestines and brain are not working properly due to infections/ parasites.
Just rambling, as I dont' think any of these stuff will help your sleep problems. Some people do yogi meditation to help sleeping better. I have the opposite effect (I can sleep only about 2-3 hours if I meditate). Different people, different results...
Klutzo, dont' give up! Try to concentrate on finding a solution to sleep first. My magic herb was andrographis for that. Hope you find yours!
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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luvs2ride
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Klutzo,
Me thinks your hubby is right since left-handed people work out of the right side of their brain. :-) I'm ambidextrous too. Lefties are probably forced to develop some right hand skills just because the world is built for right hand people.
Actually, the reason I asked is because I often have the reverse effect with meds, tranquilizers, even the honey/vinegar drink and accupuncture which help so many with pain actually drove me into unbearable pain. I was telling this to an accupuncurist who asked if I was left-handed. When I said yes, she explained left-handed people are wired reverse of right handed people and therefore the accupuncture points that work for right handed people drive left-handed people into severe pain. That would be me! She also said we (lefties) often have trouble with meds.
I guess that is not your problem though.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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klutzo
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Hi JimBob - Thanks, I will look at coptis and C-salts. I know coptis is strong. I have heard C-salts recommended before, but have not tried them.
3-4 grams of vitaminc C would cause me to live in the bathroom! 500 mgs. is all I can handle. I am going to try effervescent C in powdered packs, where I can take in a bit more, but control the dose myself as tolerated. As I take more C, I will back off on the Mg. I currently take 880 mgs. of Mg per day, and can take less if I have another "laxative" supplement like C to take it's place.
Are you worried about the fertilizer used on your Chinese herbs? I've always been leery of herbs grown elsewhere, since they often use animal wastes as fertilizer, the same thing that caused our spinach related illness here in the U.S. Their bodies are used to it over there, but our immune systems are not used to such things.
I allow myself 2 sugar treats per week, and that helps keep my cravings at bay. This week I've had one treat so far, a bowl of multi-grain Cheerios. That may not sound too special, but it does have sugar, and that makes it a treat to me.
I sure do understand the force of those cravings! My weight is the one area of discipline in my life that I've failed in. I've lost about 300 lbs., while trying to lose the same 60 lbs., over and over again. I gained 45 lbs. in the first 2 months of illness, and another 15 when I got conned into taking estrogen replacement for awhile.
I can also empathize with your desire for silence. I have a team of tree trimmers in my yard right now and it is really noisy! It sounded like they just broke our patio deck to pieces....I hope not. We have huge oak trees that are messy and require maintenance, but they are also beautiful, shady, and full of nice songbirds.
I also like all sorts of music (except for hip hop). I never get tired of Enya, but when not trying to relax, I am primarily a blues freak, which is about as far from Enya as you can get!
Hi Selma - My cortisone shots for my back have set off a yeast flare, and the corners of my mouth are cracked and painful, my tongue is covered in white gook, and I feel like I am walking underwater in cement shoes.
I am gargling Probiotics, taking 3 times my normal dose of Probiotics, and cancelling my sugar treats until it's handled. I also switched back to Cumanda to try to kill it, and it does seem to be helping. Everything is a trade-off with this stinking' disease.
I've done Yoga since age 17 (am now 55 going on 105!). The arthritis is making it more and more difficult to do many of the poses, so I am only doing about five minutes, 3 X week now for stretching and to try to maintain some range of motion. If you can do yoga, I think that should help a lot.
Hi Luvs - My DH is old enough that he was forced to write with his right hand in elementary school, hence his being ambidextrous. It has helped him in his career, since he can give one arm a rest while using the other (he's a contractor).
Maybe that is why acupuncture did not work for his arthritis....the practitioner never asked about handedness. Thanks for the tip!
My hubby does have some trouble with codeine. It speeds up his heart. But it does that to me also. He has not had any paradoxical reactions to any other meds, thank goodness.
I assume you know the dark side of left-handedness, ie. they die much younger, on average. I think accidents using equipment designed for right-handers are part of the reason.
Thanks to you all!
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Truthfinder
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Oxygenbabe, where do you get your Allimax?
JimBob, aren't those C salts basically just an ascorbate form of Vitamin C? It took me awhile to find that place where you get it from - looks like a pretty good price for the stuff - thanks.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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klutzo
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Tracy, I'm not oxygenbabe, but I just ordered Allimax from iherb.com last night. I had trouble finding it, because I looked under "G" for garlic. It is listed under "A" for Allicin.
JimBob, I looked up the C salts and they look very much like what I just ordered. I agree that is a good way to take C, esp. if you have bowel trouble with large doses like I do. Thanks.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Truthfinder
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Klutzo,
I found it at i-herb, too, but not in the liquid form.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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klutzo
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Tracy, I had not seen a liquid Allimax at either of the two companies I always use, so I Googled it and found several. The first was www.evitamins.com, which has the liquid for $23.99. I am not familiar with them, but at least there are places to get it.
Klutzo
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oxygenbabe
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He's the US distributor. I took too much yesterday and my stomach is bothering me Posts: 2276 | From united states | Registered: Jun 2004
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Truthfinder
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Thanks Klutzo and Oxygen!
Trach
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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