I've had lyme disease since 1995. Diagnosed five years ago. Been on and off abx since that time with no success. Abx have done a number on my stomach, plus I can't handle many of the side effects.
I'm experiencing neurological symptoms, blurry eyes, joint pain, gut pain, anxiety, just to name a few. I do not have night sweats and normally I do sleep well through the night, except for waking up from joint pain (arthritis).
My LLMD says (according to the tests two years ago) I don't have co-infections but he suspects I do have them. Which ones? I don't know. I suspect I do have one or more co-infections but don't really know for sure.
I do know that my neuro problems and all the rest of my symptoms have gotten worse in the past few months. The gut pain is probably the most bothersome. I was tested for yeast-negative.
After doing a lot of research over the past few months I've decided that I need to treat this disease again. I've decided to go with a herbal protocol. Sadly, where I live there are no good naturopathic doctors in our area. I've visited with a few of them and they are clueless when it comes to lyme disease.
Here's my questions: I have researched the Condensed Cowden protocol, Zhang, and Buhner. It's really hard for me to decide which one to go with.
There are both positive and negative reviews from people who've tried these protocols. It doesn't appear one herbal protocol is that much better than the other one from what I can tell from researching this.
One thing I like about the Cowden protocol is it is organized and well structured and easy to understand. But is it the best herbal protocol of the three?
I would like to hear from those of you who've tried any of these protocols and tell me which one you are on (or have been on) and how did you do on the protocol. Did anyone overcome lyme with any of these protocols?
Anyone is welcome to comment on this topic even if you haven't done a herbal protocol. Any comments, feedback and input would be greatly appreciated. For those of you who suggest I stay on antibiotics, I can't. It's no longer an option for me. I wish it was, but it isn't.
I plan to start this herbal treatment in January. I can't put it off any longer. This disease is destroying my health, and if I don't do something soon it's going to destroy my life.
I'm looking forward to getting input from those of you here on this forum. I want to get well (as we all do). I'm hoping and praying that one of these herbal protocols will help me to accomplish this.
Thank you in advance for your contribution to this thread.
Gary
[ 12-30-2009, 06:50 PM: Message edited by: gwb ]
Posted by lpkayak (Member # 5230) on :
buhner
Posted by gwb (Member # 7273) on :
Thanks, lpkayak.
Could you tell me why you say Buhner? Have you done this protocol yourself and did you have good success with it? A few more details would be nice. : )
Gary
Posted by gwb (Member # 7273) on :
I was sure hoping to get some more input regarding my questions about herbal protocols.
I'm going to be starting on one of these protocols very soon in January. Sure would like to get some feedback from you all before I decide which protocol to use.
Thanks!
Gary
Posted by Deep in 'tis pear (Member # 10427) on :
I took the Zhang Artemisia for Babesia for a while. It really made a big difference while I was on it. No more night sweats and overall feeling much better - and my test became negative. Unfortunately - it didn't last. So, I am debating, the regular antibiiotic route or the Artemisia again???
Posted by gwb (Member # 7273) on :
Deep, how long were you on Zhang's Artemisia? You didn't follow the whole protocol, just artemisia only? Did you have bad herxes with it?
Gary
Posted by learning721 (Member # 23798) on :
does anyone know about Cowden- the lady that is helping me with the herbs says it is safe to work up to as much as 60 drops, is this true? i thought the max was like 20?
Posted by learning721 (Member # 23798) on :
sorry, i didn't post which product- the samento
Posted by gwb (Member # 7273) on :
Well, didn't get as many comments as I had hoped for so I'm bumping this up this morning.
Happy New Year's Eve everyone!
Gary
Posted by Wonko (Member # 18318) on :
When I took samento, I went up to 15 drops twice a day (so 30 total a day). I started small, though.
Cat's claw was a good start for me, but I'm now on abx and can't comment about other herbal treatments.
Posted by lymewreck36 (Member # 4395) on :
Hi Gary and Happy New Year's Eve. I am also interested in the same topic.
There are some books that touch on this subject in varying depths.
These books would explain Buhner's protocol, but did I hear that he has some new modifications?
Where does one buy the Cowden protocol or the Zang?
Mary
Posted by lymewreck36 (Member # 4395) on :
Gary, I will be looking at this more closely, AGAIN, but be patient for responses. It is a holiday, and not everyone will be around to check the email. With the start of the new year, you should get more feed back. I will look in my books in a day or two and try to remember to get back to you with specifics.
If you do a "search" in medical questions in this forum, type in Buhner protocol herbs and see the ton of stuff that comes up. That should keep you busy until more people are at computer screens again.
Mary
Posted by gwb (Member # 7273) on :
Bumping to the top to keep this going.
Happy New Year you all!
Gary
Posted by lymetwister (Member # 19590) on :
Gary,
You mailbox is full. Have some info. for ya.
Gary
Posted by massman (Member # 18116) on :
Did you see Dr T in Texas ?
Posted by thejoje (Member # 19976) on :
Gary, My doc does mostly Zhang but compliments the protocol with many different medications, herbs, supplements.
From what I have read about this disease, it's not the treatment of Lyme only that brings success, it is the addressing of all the co-infections, and ruined body systems that can bring you back to health.
So for example, in addition to the Zhang herbs, my family is on adrenal support, thyroid support, biofilm busters, bioidentical hormone replacements, tons of supplements, pre and pro biotics, etc.
We are also now beginning to look at the co-infections more seriously. While all Igenx labs came back negative for babesia, bartonella, etc, we are now switching labs to Klongin and Fry labs to test for the co's.
I'm sure that treatment will involve more abx, which are not great for you.
But a doctor who is more knowledgeable about going after the co-infections and treating the whole body system might be more beneficial for you.
I have switched docs a few times myself and while it was difficult, it definitely paid off. One thing that was helpful is the "phone consult" which saves some amount of travel.
I hope more people will respond to your reply so that you can make a good decision.
So sorry to hear about your neuro problems. I hope that 2010 will bring hope and relief for you.
Take care, Joanne
Posted by djf2005 (Member # 11449) on :
I am on condensed cowden and it is working ok.
I have tried buhner and zhang in the past.
Cowden has the most herbs it seems and most options as well as being easy to follow.
An idea would be to try the "condensed" program and then add accordingly. (what I am doing)
I cannot say for sure if herbs and the supporting protocol I am on will be enough, but I am giving it a shot.
It's month 2 on cowden and I am at about 30%, I was barely functioning before I began.
Herbs and natural treatments are a long term approach, this I do know.
Also, I started many threads in the past regarding cowden if you do a search youll find some more info.
Take care
Derek
Posted by f13girl (Member # 23844) on :
Everyone is different-- I tried zhang protocol for 8 months working by email with Dr. zhang and my osteopath (including first 3 months on artemisin). I did not found that I herxed on it. I then started to ramp up on buhner herbs simultaneously at month 7 (Dr. zhang said it was ok)-when i had a "herx" that lasted for months and made me worse/did not get to baseline. What ever approach- take it slow and see how your body responds. For me zhang did not appear to be working- but maybe I didn't give it a long enough? Very expensive.
There are also the products by raintree- "spiro" , "myco" etc. I wonder if they have worked for anyone.
Posted by sixgoofykids (Member # 11141) on :
Gary, this is what I was going to PM you, but then I saw this thread.
The Cowden at first worked great on me, likely because it has a lot of good detox herbs. I had to get back on abx though because I declined on the protocol.
I preferred the Buhner herbs, though they are not what got me better, either.
What really worked for me was the Bionic 880 treatment I got in Germany. I blogged about it (if you read, go back to Oct. 2008 to start).
I did well on abx and was responsive to them, but didn't get to where I wanted to be.
I took TOA free cat's claw. I liked it better as part of Buhner. I really liked andrographis and resveratrol. I took Samento and Banderol with those two. Don't do much for coinfections though. You could always take enula and artemisia for babesia (and drink tonic water ... I like Fever Tree, doesn't have corn syrup).
I took NAC with alpha lipoic acid. My LLMD liked the two to be taken together. NAC needs to be taken away from everything else, so I generally took it in the middle of the night when I'd wake up.
Adrenal essence was nice, I took it. Mag is good, I took malate. Don't know about DPO.
It's important to do what resonates with you. Learn to listen to your body. If it sounds useless to you, it probably is. If it sounds like you would like it, it most likely would help. I never got into energy testing because I don't have anyone to do it for me, so I learned to listen to my intuition.
When I finally got ART tested, it confirmed literally everything I already knew about myself. Samento didn't do much for me, but I loved andrographis and resveratrol .... might be the opposite for someone else.
Good luck with your herbal protocol!!
Oh, it's important to work on the gut. I eat a lot of fermented products. I make my own, but you can buy things like raw sauerkraut, kombucha, kefir, etc. These healed my gut. I think it's a big part of healing to have a strong gut.
Another thing, parasite treatment (humaworm, enula, and Dr. Natura) was big for my recovery, too. As was regular exercise.
Happy New Year!
Posted by gwb (Member # 7273) on :
Mailbox is cleaned out now.
quote:Originally posted by lymetwister: Gary,
You mailbox is full. Have some info. for ya.
Gary
Posted by Keebler (Member # 12673) on :
- Clarification to something SGK said: " . . .I took TOA free cat's claw. I liked it better as part of Buhner. . . ."
However, Buhner does not suggest using the TOA free at all. He instructs using only the regular cat's claw with everything in it as the TOA part is the part that helps nourish the nerves.
---
If you experience anxiety, andrographis and regular cat's claw have done the best for calming this, in my experience.
Allicin, as a hot herb, is stimulating. The Puraria (sp?) formula of Hepapro is very calming. It's also called Kudzu root.
-----
I've been waiting to add my experience as I've compared using both Zhang and Buhner many times but am just too tired to be complete and my hands can only go so far.
Back when I still had some money, I used both protocols for Zhang at separate times. The Allicin protocol worked best but, when I needed to be garlic-smell-free, the coptis plan helped for sort times.
I could only afford to stay with Zhang for a couple months at at time for about 3 different times over the span of a couple years.
Looking back, after later using only part of the Buhner protocol (andrographis and sometimes resversatrol) I really did GREAT on Zhang's.
I saw him in a seminar years ago and while it was geared to the hepatitis patients, he altered that for myself and another lyme patient, basically giving the hepatitis patients new lyme info and the two lyme patients there a great course on the liver.
The hepatitis patients patients there (about 40 in number) had flown in from up to 1,000 miles away and most had been working with him for some time. the were all doing absolutely fantastic.
The other lyme patient there was back to about 90% after a harrowing time with time. He was there to ask how to get over that last bump and each of us had some private time to discuss individual matters.
On the Z. bulletin board, from time to time, there are some who say they've regained their health to near full strength.
But most people don't stick it out to the time required. I did not due to money. While Hepapro brand is the absolute best in my book - and I tried every less espensive substitution I could find - the Hepapro quality is excellent.
f I have the money, I do not mind at all trading fair money for fair treatment of employees, growers, packers, etc. And other cheap herbs are often cut with other stuff, so quality really matters. But, when one runs out, there simply is no more.
I never stopped due to the garlic smell (other than for short time ) but I live alone and really never get out. I can smell like garlic.
But when I did the protocol I COULD go out more and really just did not mind. I just told people I spill some garlic sauce at a restaurant. Allicin is a true gift of gold for the brain.
As for andrographis, that's mostly what I can afford now on Buhner. the resversatrol money only lasted for a few bottles but I can afford regular cat's claw which really helped calm my nerve tissue.
Androgpraphis has helped mnay thingl. hands nubme now. must sotp. soirry . will come back.
--
P.S. Andrographis has helped calm seizures for me. It helps tremendously with the pain relief in general (but not in my hand)s , sleep and calming tinnitus to a degree. It increases urination and can decrease edema.
For me, it does not seem to help hyperacusis. And it makes me more tired - but as long as it lessens the seizures, I'm on board with that.
It is the only thing I can afford now and I do see some benefit in it but can only assume that it would be better as intended, a key part to a combined formula.
Just sharing my experience, though. -
[ 01-01-2010, 03:43 PM: Message edited by: Keebler ]
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Keebler: - Clarification to something SGK said: " . . .I took TOA free cat's claw. I liked it better as part of Buhner. . . ."
However, Buhner does not suggest using the TOA free at all. He instructs using only the regular cat's claw with everything in it as the TOA part is the part that helps nourish the nerves. -
Correct. My LLMD had me on Samento. I didn't mean for it to sound like TOA-free was part of Buhner, even though I used it that way. I meant, I liked the cat's claw better in the Buhner protocol than the Cowden.
Posted by gwb (Member # 7273) on :
Yes, we've emailed back and forth a couple of times. I asked him about his protocol but he didn't really want to go into it without a phone consult first.
He did say that Cat's Claw would for sure be in the protocol which is what I would expect. He also said he'd give me a "flooding dose" (400 Billion) of probiotics to start with for two weeks before he'd even begin treatment.
I'm sure he's a great ND but one thing that turned me off is when he referred to Lyme as "Lymes". Maybe I'm too sensitive to that but it makes me wonder if he really knows his stuff when it comes to lyme disease. I'm convinced he's a great ND but do have some reservations about his lyme protocol.
I'm still giving it some thought. I do appreciate that he's willing to treat me over the phone, especially since long distance travel is difficult for me at this time.
massman, what do you think about the herbal protocols I mentioned?
Gary
quote:Originally posted by massman: Did you see Dr T in Texas ?
Posted by massman (Member # 18116) on :
I use mixed herbals not straight.
On Dr. T. - sorry if semantics is more important than actual results
Many here say they want a good doc, but often there is a "sticking point" that comes up after the referral that squashes the referral.
I pretty much refer to docs that I personally know and have worked with.
Oh well...............
Posted by Keebler (Member # 12673) on :
- I, too, can be turned away if a doctor used and "s" in lyme. It is a red flag - but it's good to ask before turning back.
I don't know which doctor to which you refer but I've always heard Dr. Z say and write it correctly. On the phone, sometimes, words are not as clear.
(But massman seems to know you were referring to a Dr. T)
As your comment is nearer to Dr. Z I just wanted to clear that.
Regardless of who used the "s" - sometimes, a person will accidently slur in an "s" or it may come from the start of the next word. He may have been trying to hold back a sneeze.
Some doctors from certain regions of the country will use the "s" - sort of a southern drawl but you can easily ask them for clarification to be sure they have indeed been thoroughly educated in "Lyme disease" -
I know I figure if they've read enough about it they should know. But, I'd had to toss out a good doctor over an assumption. You can ask about his education in this area, and then it should become clear if he has studied the work.
I once nearly did not hire someone on my staff (when I was working) because she had typo on her resume. However, she was still the best candidate and turned out to be fabulous at her job. -
Posted by gwb (Member # 7273) on :
Joanne,
Thanks for your response. Unfortunately, here in OK we don't have an LLMD, and the alternative and ND doctors here know very little about lyme disease.
I did see a new alt doctor yesterday who gave me some Xymogen supplements of various kinds but he knows very little about lyme. He wants to help me with my gut problems ("IBS") but what he gave me doesn't really seem to focus on that so I'm a little puzzled about it.
The alt doctor gave me some Adrenal Support supplements which I believe will be good for me for sure. He also gave me some MedCaps DPO (Dual Phase Optimizers). I'm not sure, but I think it's a detoxifier of some sort.
He included some Chelex which is supposed to remove heavy metals. It also includes binders to help remove it from your system. I'm kind of scared of this one since no telling where the metals are going to end up. He also gave me NAC which is another one of those supplements that make me a bit nervous to take.
He also gave me some Magnesium Citrate to help move my bowels. That's been a problem for me the last couple of months. Been taking Magnesium Malate but it hasn't helped with the bowels. Hopefully the Citrate will.
You are fortunate to have a good doctor in your area who understands all the different aspects of this disease and how it needs to be treated. My previous LLMD was a newbie (nice guy) but he doesn't know how to treat late stage chronic lyme patients like me. He knows very little about toxin removal, etc.
I can't do antibiotics anymore--too rough on my gut. My gut is a mess (maybe leaky gut syndrome) and that's the one thing that keeps me pretty miserable almost everyday.
Two years ago my LLMD said the test results revealed no co-infections, but he suspects I do have them since the tests are unreliable. I really don't know what co-infections I might have but it would be nice to know.
Basically, my only option is to do phone consults with ND's or alternative doctors who are willing to do that. I have found a couple of ND's who are willing to do that for up to 200.00 bucks an hour. I'm somewhat reluctant since neither one will share with me what their protocol would be.
Looks like whatever I do will have to be done on my own. Another option is to temporarily (2-4 weeks) move to another state and get natural treatment from a LLND, or an alternative doctor, then come back home and do the rest of it on my own with occasional phone consults.
Didn't mean to ramble on here. It's so difficult living with this disease and not having anyone nearby who can help guide me through a herbal/supplement protocol. Glad to have people like you and others here who are helpful and care enough to offer your input and advice.
Thanks again for responding and I hope you and your family continue to get better and that 2010 will be a great year for you.
Gary
quote:Originally posted by thejoje: Gary, My doc does mostly Zhang but compliments the protocol with many different medications, herbs, supplements.
From what I have read about this disease, it's not the treatment of Lyme only that brings success, it is the addressing of all the co-infections, and ruined body systems that can bring you back to health.
So for example, in addition to the Zhang herbs, my family is on adrenal support, thyroid support, biofilm busters, bioidentical hormone replacements, tons of supplements, pre and pro biotics, etc.
We are also now beginning to look at the co-infections more seriously. While all Igenx labs came back negative for babesia, bartonella, etc, we are now switching labs to Klongin and Fry labs to test for the co's.
I'm sure that treatment will involve more abx, which are not great for you.
But a doctor who is more knowledgeable about going after the co-infections and treating the whole body system might be more beneficial for you.
I have switched docs a few times myself and while it was difficult, it definitely paid off. One thing that was helpful is the "phone consult" which saves some amount of travel.
I hope more people will respond to your reply so that you can make a good decision.
So sorry to hear about your neuro problems. I hope that 2010 will bring hope and relief for you.
Take care, Joanne
Posted by MariaA (Member # 9128) on :
Check out some of the threads in my signature- the 'herbal links' thread. While that one focuses mostly on Buhner, there are a few threads on other protocols and a lot of info on individual patients' experiences.
Posted by gwb (Member # 7273) on :
The doctor who I was referring to with massman was through email correspondence. He specifically spelled it "Lymes". If it had been on the phone, I agree with you, it could have been a misunderstanding. He clearly typed it that way.
I have not made a decision yet if I will go with him or not. I still might give him a try, I don't know yet. This ND was not willing to give me more information on his protocol for Lyme, and that's another reason I'm somewhat reluctant to go forward with him.
I think he's a pretty good ND from what I've researched on him, but there's no evidence that he's an expert in Lyme disease. In fact, I could not find one time on his website where Lyme disease is even mentioned.
Anyway, Keebler, thanks so much for your lengthy and informative response to my questions. Your information (as usual) is very helpful and I appreciate you taking the time to respond to me.
About garlic, I ordered some Biopure which is supposed to be the best on the market (organic). I think even Dr B recommends if I remember right. Anyway, when I took them it about burned a hole in my stomach.
I took them with food but still... I plan to try taking them again but am reluctant to do so now with my stomach being so out of whack. It's so frustrating not being able to take some needed supplements because my stomach so badly reacts to them.
I'm just now started eating naturally fermented sauerkraut. I've increased the dosage of probiotics I've been taking and taking more digestive enzymes as the alternative doctor suggested I do. I'm also drinking some tea recipes that a couple of posters here recommended to me. Slippery elm bark, marshmallow root, spearmint, etc. We'll see how that works out.
Thanks again for your reply to my post.
I wish you a very Happy (and healthy) New Year!
Gary
quote:Originally posted by Keebler: - I, too, can be turned away if a doctor used and "s" in lyme. It is a red flag - but it's good to ask before turning back.
I don't know which doctor to which you refer but I've always heard Dr. Z say and write it correctly. On the phone, sometimes, words are not as clear.
(But massman seems to know you were referring to a Dr. T)
As your comment is nearer to Dr. Z I just wanted to clear that.
Regardless of who used the "s" - sometimes, a person will accidently slur in an "s" or it may come from the start of the next word. He may have been trying to hold back a sneeze.
Some doctors from certain regions of the country will use the "s" - sort of a southern drawl but you can easily ask them for clarification to be sure they have indeed been thoroughly educated in "Lyme disease" -
I know I figure if they've read enough about it they should know. But, I'd had to toss out a good doctor over an assumption. You can ask about his education in this area, and then it should become clear if he has studied the work.
I once nearly did not hire someone on my staff (when I was working) because she had typo on her resume. However, she was still the best candidate and turned out to be fabulous at her job. -
Posted by lymewreck36 (Member # 4395) on :
This is such a great thread! Thanks everyone for your suggestions. I couldn't survive without all of your wisdom and experience.
Mary
Posted by f13girl (Member # 23844) on :
one more thought on your gut issues. You may want consider the SCD (specific Carbohydrate Diet) to repair your gut and damage abx may have done. See "breaking the vicious cycle" . Diet was originally created for celiac and then used for crohns disease, but some docs (alternative) are prescribing it immune issues and they are also using it to treat autism. You may also wonder consider adding LDN (low dose naltrexone) into the mix. The same alternative dr I know of (Dr. Cowan-Four fold healing-is combining LDN with the SCD diet for immune issues).
Posted by NellieK (Member # 23554) on :
I don't know if these are in any of the protocols you mentioned, but I'm taking Samento and Cumanda (microbial defense), which make me feel a little ill. 1/2 hour later, I take burbur (detox) which makes me feel good again. So I think it's doing SOMETHING! I've been instructed to take more burbur if I remain ill after taking it 1/2 hour after the others. The burbur really seems to calm my stomach in particular, as well as take away some of my headache. I'm up to about 20 drops Samento & Cumanda/day and 40 drops Burber/day.
Posted by massman (Member # 18116) on :
Ever thought or tried to think from a health pro's point of view ?
perhaps when they mention protocols the not yet patient may write them down, find a wicked cheap source of what they think is close, try them with poor results + then say they have been there, done that + it does not work.
Anyway, I regret the recommendation. Sorry.
Posted by Keebler (Member # 12673) on :
- Why ever regret a recommendation? It's good to see options, give them some thought or discussion and work it all out from there.
We can learn something from every corner. -
Posted by gwb (Member # 7273) on :
sixgoofykids: Thanks for your lengthy and informative thread. It is very helpful.
Glad that the Bionic 800 treatment was so helpful to you. If I had the $$$ I'd be on the next flight to Germany. : )
I'm skeptical (by nature) about the ART but very open to this idea. I had planned to go to Bellevue, WA last November to see a doctor who does ART. It was going to be a two week treatment plan that included teachig me how to treat myself when I got back home. This doctor was willing to do phone consults for me from then on out.
However, our daughter-in-law, who was pregnant, found out that her due date would be moved up to the same dates I was supposed to get treated in Washington State. We had to cancel that because my wife didn't want to miss the delivery of our new granddaughter.
I've considered rescheduling my appt but with the way my health is right now I don't think I could handle a round trip flight from OK to Seattle at this time. It's sad I have to go so far to get more advanced treatment, but that's the way it is when you live in OK.
By the way, a few days ago I bought some organic, naturally fermented sauerkraut (low sodium) and today I ate about three tablespoons full of it. It actually tasted very good.
However, later on the left side of my abdomen began hurting pretty bad and I got nauseated. Not sure if that's a normal response for someone who's not used to eating fermented food.
Not long after that my blood pressure went up to 140/95 which isn't normal for me. I'm usually about 120/70 in that range. Again, not sure this is from the sauerkraut or not, but it was an unpleasant experience (still is).
But my blood pressure is back down to normal now. The sodium in the sauerkraut is very low, so I know it wasn't from the sodium. Any thoughts about this?
You mentioned parasite cleansing. According to my recent stool sample I have no parasites. How accurate that test is I do not know.I plan to talk to my new alt doctor about parasite cleansing next time I see him.
I wasn't real impressed with him and he seemed to be in a hurry with me yesterday. I had so many questions to ask him but was unable to spend enough time with me. It's hard to find a decent ND or alternative doctor in this state.
RIght now I'm pretty discouraged about my gut and the increased intensity of the pain. My GI doctor shrugs his shoulders and says it's just IBS and I gotta learn to live with it. I think it's much more than IBS and that is just another way of saying he has no clue what's wrong with me.
My recent stool test showed that I had zero good bacteria in my gut and that my intestines weren't absorbing nutrients well. I asked the doctor why this could be? He has no answer except to say "increase probiotics to 30 billion a day and take more digestive enzymes".
I've been taking about 10-20 billion probiotics daily for about one year and I take digestive enzymes with each meal, so I don't see how this is going to help my intestines to absorb any better. How much more enzymes should I be taking?
Last year at this time I weighed 275 pound @ 5'10 . Today I weigh 195 and haven't tried to lose weight. I've even shrunk two inches and am now 5'8. I've lost a lot of bone mass the past year. I lose a pound or two a week and the all the doctors have to say about it is, "congratulations!".
Why do they think it's a good thing that I lose a pound to two a week without trying, especially considering I'm in so much pain? Makes no sense. I can barely eat 800 calories a day.
I'm taking lots of supplements, vitamin C, colostrum, B complex, Omega 3 fish oil, vitamin E, probiotics, multivitamins, digestive enzymes, B-12, co-q-10 and a couple of others that have slipped my mind and yet I'm still losing weight. And worst of all, I'm losing muscle and bone mass.
Sorry to ramble again. It's been so discouraging go to so many different doctors and not getting any answers. I'm doing my part to try to get well but I feel like I'm in a losing battle and no one is helping me to fight it.
Six, thanks again for your response to my post along with your suggestions and input. I do appreciate it very much.
Happy New Year.
Gary
[ 01-02-2010, 08:16 AM: Message edited by: gwb ]
Posted by gwb (Member # 7273) on :
quote:Originally posted by massman: Ever thought or tried to think from a health pro's point of view ?
perhaps when they mention protocols the not yet patient may write them down, find a wicked cheap source of what they think is close, try them with poor results + then say they have been there, done that + it does not work.
Anyway, I regret the recommendation. Sorry.
I appreciate your many suggestions and recommendations you provide here. Nothing to be sorry about. I pm'd you. Thanks for all you do.
Happy New Year!
Gary
Posted by randibear (Member # 11290) on :
if you would like to try the liquid herbs i would be willing to send you some. i also have some of the buhner's cat's claw, etc.
i'm taking a good break from everything.
i also have the humaworm if you're interested.
Posted by djf2005 (Member # 11449) on :
Gary-
You are getting a lot of good advice on this thread.
One thing to keep in mind; testing for parasites via stool is extremely unreliable.
IMO, most lyme patients have a parasitic component to their illness; some more serious than others.
It's usually brushed off by most people in the 1-2 year treatment stage because it just does not logically make sense to them.
I have been treating 3 years and am coming to realize that parasites/worms/etc are a big role in lyme disease complex. (not "lymes"..lol)
Anyway, whichever herbal route you decide to employ, I would recommend using enula, wormwood, or humaworm at some point to clean the buggers out.
I am on enula currently and it seems to be helping the gut issues although it is hard to tolerate.
In short, from what I have learned the past few years, severe GI issues in Lyme disease complex are "usually" caused by bartonella, parasites of some kind, lyme, heavy metals, or candida. Bartonella and parasites more often then not.
Unfortunately more and more enzymes and probiotics I also have tried for extended periods of time with little relief.
I think getting to the root cause is the only way to fix the issue.
I hope that you feel better soon. Hang in there.
Best
Derek
Posted by gwb (Member # 7273) on :
quote:Originally posted by MariaA: Check out some of the threads in my signature- the 'herbal links' thread. While that one focuses mostly on Buhner, there are a few threads on other protocols and a lot of info on individual patients' experiences.
Maria, thank you for letting me know about the threads you mentioned. I'm going to be checking those out.
Happy New Year and thanks for your contribution to this forum. It is greatly appreciated.
Gary
Posted by gwb (Member # 7273) on :
quote:Originally posted by NellieK: I don't know if these are in any of the protocols you mentioned, but I'm taking Samento and Cumanda (microbial defense), which make me feel a little ill. 1/2 hour later, I take burbur (detox) which makes me feel good again. So I think it's doing SOMETHING! I've been instructed to take more burbur if I remain ill after taking it 1/2 hour after the others. The burbur really seems to calm my stomach in particular, as well as take away some of my headache. I'm up to about 20 drops Samento & Cumanda/day and 40 drops Burber/day.
Nellie, I've heard a lot about Samento, Cumanda and Burbur. I do think this is used in the Cowden protocol if I remember correctly from what I've read.
Thanks for sharing your experience with me. Please keep me posted and let me know how things go in the next few weeks and months. Very curious to know how it works out for you.
Happy New Year and I hope you have better health in 2010!
Gary
Posted by gwb (Member # 7273) on :
quote:Originally posted by Deep in 'tis pear: I took the Zhang Artemisia for Babesia for a while. It really made a big difference while I was on it. No more night sweats and overall feeling much better - and my test became negative. Unfortunately - it didn't last. So, I am debating, the regular antibiiotic route or the Artemisia again???
Deep, thanks for sharing your experience with Zhang Artemisia with me. Sorry to hear it didn't last. Wonder why that was?
Whatever you decide to do, antibiotics or Artemisia, I hope it works out best for you.
Happy New Year and I hope and pray 2010 is a better year for your health.
Gary
Posted by gwb (Member # 7273) on :
quote:Originally posted by Wonko: When I took samento, I went up to 15 drops twice a day (so 30 total a day). I started small, though.
Cat's claw was a good start for me, but I'm now on abx and can't comment about other herbal treatments.
Wonko, thanks for sharing about your experience with Samento. Hope you are doing better on abx now and that you get better this year.
Happy New Year!
Gary
Posted by sixgoofykids (Member # 11141) on :
My stool test came out that I had no parasites. It also said I had bad bacteria in my gut and no good bacteria. I saw plenty of worms so I know from experience that the stool testing is not accurate.
I could eat no solid food without pain at my sickest. I ate a lot of smoothies. I make them now with homemade kefir (got my grains at kefirlady.com), whey protein, super seed, and a little maple syrup to sweeten it.
Whey is good because it's an easy to digest protein.
If you have no good bacteria, it could have been the sauerkraut. Start slowly with the ferments and see if that helps. They are loaded with bacteria and enzymes. For a long time I always ate a fermented product with every meal and it helped tons with digestion.
After one of my babies was born I had high blood pressure and as soon as they took care of my abdominal cramping (due to gas, not childbirth), my blood pressure came down. That makes me think the two can be connected??
I had extreme pain in my gut whenever I ate solid food. I treated parasites and bartonella at the same time, so there's no real way for me to know which treatment helped, but it was after that that it started improving, though it was many months and a lot of work to get it to be more normal.
I have only had ART twice. It can be done without ART, though it is a good tool if it's available to you.
Posted by gwb (Member # 7273) on :
quote:Originally posted by lymewreck36: Hi Gary and Happy New Year's Eve. I am also interested in the same topic.
There are some books that touch on this subject in varying depths.
I was diagnosed the beginning of 2008 and went on abx but by June I was experiencing so many side effects (although otherwise feeling much better), that I decided to go on Zhang's herbs. I started the entire recommended protocol as directed in his book, for lyme. I used allicin for a month and then switched to Coptis. After five months I began to relapse badly. I went to a homeopathic doctor who gave me cat's claw and vitamin C (huge amounts) but I continued to get worse.
So I traveled 1000 miles to see an LLMD for the first time. He did a clinical diagnosis of lyme and bartonella. Most of my symptoms at that time were bart and he started me on Levaquin. I was doing very well wiping out most of the symptoms but suddenly I experienced extreme muscle pain which quickly developed into tendonitis. I could not tolerat any other replacement antibiotic and each telephone consult was $100 plus the cost of all the drugs I was buying, which I could not use. I decided I had developed chemical sensitivity and asked the LLMD for herbal remedies. He told me I would have to make another trip out to see his assistant, which I could not afford.
I bought Dr. S' book on bart which recommended "extremely high amounts of HH and Cumanda". A couple of people who consulted with him emailed me with what the recommended dosage was so I began using both of these herbs. I worked up to 18 HH capsules a day and at times took up to 60 drops of Cumanda. In addition to that I was taking 1500 mg TOA free Samento, not Cowdens but another brand. And I also took 1000mg of grapefruit seed extract. I took a large amount of vitamins, minerals and other supplements. Five months and I began to have symptoms returning; headache, hot flashes, pain in shins and lack of motivation. I emailed Zhang who told me it was probably a herx. Others online said the same thing. Two more months and I was in a major depression with tremendous anxiety. Unable to sleep as insomnia was now part of the vicious cycle, I got up in the middle of the night and took a Rifampin left over from last year's arsenal. I am currently taking 600 Rifampin and 500mg Zitho every day with slow, if any improvment. I was much better last year after the five weeks of levaquin. Currently I have shin pain and my arm feels like it is getting the tendonitis again. I don't know what I will do if I have to stop this medication because the herbs simply do not work. The LLMD told me that there is no herbal treatment that cures bartonella but there are some herbs effective for lyme. He suggested cat's claw, teasel root and andrographis. Andrographis is very strong and many people cannot handle it.
It is important to know your co-infections which you can probably figure out for yourself simply by studying the symptoms. I have found when I am just addressing one disease it allows the other infection to escalate and take over.
Posted by gwb (Member # 7273) on :
quote:Originally posted by randibear: if you would like to try the liquid herbs i would be willing to send you some. i also have some of the buhner's cat's claw, etc.
i'm taking a good break from everything.
i also have the humaworm if you're interested.
randibear, thanks for your kind offer to send me some liquid herbs and cat's claw that you have left over. After I decide which protocol to go with I will get back with you and let you know. I'm still not sure what I'm going to do yet.
By the way, how have you been feeling lately? Hope things are improving with your health issues.
Thanks again for your offer. Happy New Year and I hope your health greatly improves in 2010!
Gary
Posted by gwb (Member # 7273) on :
quote:Originally posted by djf2005: Gary-
You are getting a lot of good advice on this thread.
One thing to keep in mind; testing for parasites via stool is extremely unreliable.
IMO, most lyme patients have a parasitic component to their illness; some more serious than others.
It's usually brushed off by most people in the 1-2 year treatment stage because it just does not logically make sense to them.
I have been treating 3 years and am coming to realize that parasites/worms/etc are a big role in lyme disease complex. (not "lymes"..lol)
Anyway, whichever herbal route you decide to employ, I would recommend using enula, wormwood, or humaworm at some point to clean the buggers out.
I am on enula currently and it seems to be helping the gut issues although it is hard to tolerate.
In short, from what I have learned the past few years, severe GI issues in Lyme disease complex are "usually" caused by bartonella, parasites of some kind, lyme, heavy metals, or candida. Bartonella and parasites more often then not.
Unfortunately more and more enzymes and probiotics I also have tried for extended periods of time with little relief.
I think getting to the root cause is the only way to fix the issue.
I hope that you feel better soon. Hang in there.
Best
Derek
Derek, I agree, the advice I've been getting here is definitely helpful.
Yes, I've been told the stool test is not the most reliable test for parasites. I had a blood test for Celiac and it came back negative but I read that these tests are also not reliable even though my GI doctor said they're 100% reliable.
I decided to follow several people's advice and stop gluten to see if that would help. Sure enough, after not eating gluten for a few days I experienced less pain. However, my left side abdomen is still very painful but it's not as bad as before. Maybe in time it will get better the longer I'm gluten free.
Thanks for your advice about how to treat the parasites. I plan to ask my new alternative doctor about this and hopefully he will have some ideas to help me in this regards.
If not, I will go ahead and try some of the products you suggested and see how that works out. i do believe I need to address this for sure. Does it matter when I start this? Can I do it now or should I start the herbs first or what?
This is what's so confusing to me. It's hard for me to know which order to do things. There's so much that needs to be done, detox, chelating, liver cleanse, anti this, anti that, etc. It makes my head spin trying to figure out where to start and in what order to do things.
I wish there was an accurate test for bart and babs but seems there really isn't. My previous LLMD tested me for co-infections and said the tests came back negative. He did say that the tests aren't reliable and suspects I do have at least one co-infection (possibly more) but he didn't treat me for anything except lyme.
I agree that getting to the root cause is the only way to fix the issues as you said. The question is, how do I get to the root causes? So far none of the doctors I've seen have been able to figure out what the root causes are.
Seems it's up to me to figure it out and that's something that I'm not doing a very good job of so far. Hopefully with all of this input I'm getting here I'll get closer to finding some answers.
Thanks again for your reply to my questions. You've been helpful and I really appreciate it.
Happy New Year!
Gary
Posted by gwb (Member # 7273) on :
quote:Originally posted by sixgoofykids: My stool test came out that I had no parasites. It also said I had bad bacteria in my gut and no good bacteria. I saw plenty of worms so I know from experience that the stool testing is not accurate.
I could eat no solid food without pain at my sickest. I ate a lot of smoothies. I make them now with homemade kefir (got my grains at kefirlady.com), whey protein, super seed, and a little maple syrup to sweeten it.
Whey is good because it's an easy to digest protein.
If you have no good bacteria, it could have been the sauerkraut. Start slowly with the ferments and see if that helps. They are loaded with bacteria and enzymes. For a long time I always ate a fermented product with every meal and it helped tons with digestion.
After one of my babies was born I had high blood pressure and as soon as they took care of my abdominal cramping (due to gas, not childbirth), my blood pressure came down. That makes me think the two can be connected??
I had extreme pain in my gut whenever I ate solid food. I treated parasites and bartonella at the same time, so there's no real way for me to know which treatment helped, but it was after that that it started improving, though it was many months and a lot of work to get it to be more normal.
I have only had ART twice. It can be done without ART, though it is a good tool if it's available to you.
Six, like I told Derek, I know the stool test isn't reliable. I would not at all be surprised if I have parasites.
I will look into making some homemade kefir. I've heard it's very healthy for the gut.
I guess I overdid the sauerkraut this afternoon. Only had about three tablespoons of it but maybe I need to start with less like you said. I'll try less tomorrow and work my way up.
Interesting your comment about high blood pressure. The past two days my abdominal pain has been pretty bad and today, for the first time in a long time, my blood pressure shot up to 140/95.
That isn't the worst it's ever been but I haven't had blood pressure that high in months since I've lost 100 pounds. Maybe it's related to the abdominal pain like you mentioned. Interesting.
I wouldn't mind having ART done on me (although I'm skeptical), but we don't have any ART practitioners here in OK. At least I haven't been able to find one yet.
Anyway, thanks so much for your input and suggestions here and your pm to me. Your blog has been real helpful to me too.
Thanks again and Happy New Year!
Gary
Posted by gwb (Member # 7273) on :
nefferdun, thanks for your lengthy and informative reply to my questions.
I'm sorry to know that you didn't do well on the herbal protocol. That isn't very encouraging for me to know but I've read enough to know that not everyone responds good to herbal protocols for one reason or another.
I don't know how it will be for me but I do know that I cannot tolerate antibiotics anymore. My stomach is a mess and I do believe antibiotics had a role in messing up my stomach. Many of the side effects of abx are too hard for me to handle.
I really don't have many options available to me. Yes, I could rife and I very well may try to do that, but first I need to do a herbal protocol and see how it works for me.
I'm so sorry for the hell you've gone through with this disease. It's so frustrating and it makes me mad to see so many of us suffering with this. Especially it bothers me to see so many kids with lyme suffering with this evil disease.
The medical profession should be ashamed of itself for ignoring a disease that's becoming an epidemic. We are all pretty much fending for ourselves without any help from the medical community. Sure, there are LLMD's who are sticking their necks out for us and doing what they can, but it's not enough.
Sorry to go on this rant here but it just makes me so mad and frustrated to see so many of us suffering needlessly simply because no one is taking this disease seriously.
You said, "It is important to know your co-infections which you can probably figure out for yourself simply by studying the symptoms". Yeah, well we shouldn't have to try to figure it out for ourselves, Why can't there be reliable tests for us to confirm one way or the other what co-infections we have?
That's what makes this disease so aggravating, we have to figure it out for ourselves (for the most part) because the medical community won't do it for us. We have to spend thousands of dollars trying various protocols and hope that something eventually works.
And while we do these trials on ourselves many of us are doing harm to our bodies because we're so desperate to try anything to get well, even if it brings us more harm, and possibly even kills us.
I'm just getting madder and madder as I write this so I'm going to shut up now and go read Facebook for awhile and try to unwind before I hit the sack.
I sure hope things get better for you (and for all of us) this New Year--2010.
Thanks again for taking the time to respond to my questions.
Good night.
Gary
Posted by gwb (Member # 7273) on :
quote:Originally posted by f13girl: one more thought on your gut issues. You may want consider the SCD (specific Carbohydrate Diet) to repair your gut and damage abx may have done. See "breaking the vicious cycle" . Diet was originally created for celiac and then used for crohns disease, but some docs (alternative) are prescribing it immune issues and they are also using it to treat autism. You may also wonder consider adding LDN (low dose naltrexone) into the mix. The same alternative dr I know of (Dr. Cowan-Four fold healing-is combining LDN with the SCD diet for immune issues).
f13girl,
Thanks for your reply to my questions. I am actually doing the SCD pretty much. I try to follow it 100% but I noticed that some of the teas I've been drinking are on the "illegal" list.
Slippery Elm Bark and a couple other ones that slip my mind right now are not legal, but drinking these teas do seem to help me. Maybe in the long run it isn't good but it does soothe my stomach when I drink those teas.
So yeah, I'm doing the SCD with the exception of the teas. I believe I'm gluten intolerant too so I recently stopped all gluten products.
Thanks for bringing up LDN. I've notice a lot of talk about this recently on the SCD forums and even here. One of the posters here Dan B takes it for Crohn's disease if I remember right. I will ask my alternative doctor about this next time I see him.
Thanks again for your reply to my post. I appreciate it.
Happy New Year!
Gary
Posted by learning721 (Member # 23798) on :
GARY until you decide what treatment you want to do it wouldn't hurt a thing to throw in pumpkin seeds to your diet- they are very healthy for you, will help with the weight loss and MOST importantly- they are very anti-parasitic-
www.curezone.com has a forum on the humaworm and also has parasite support forums
pumpkin seeds- according to research there paraylize parasites- especially the "visible" kind- maybe it's just a theory or maybe it actually works- i feel they help me out alot!
Posted by learning721 (Member # 23798) on :
oh and for anyone with knowledge- can zhang's artemesia be used alone? i visited hepapro's webesite and see there are 2 kinds
does anyone know what the difference between these two is? i am interested in using whichever is the equivilent of wormwood- for parasites- recommended by my son's LLMD.
also, does anyone know if enula can be takin in conjunction with samento or cumanda??
THANKS!
[ 01-03-2010, 07:38 AM: Message edited by: learning721 ]
Posted by djf2005 (Member # 11449) on :
I am taking enula at bedtime while following the condensed cowden protocol (banderol and samento. etc) during the day.
I am finding enula very hard to tolerate, and have a history of having difficulty tolerating artemensin, hbot, and every other anti parasitic therapy. At the time I was not sure what all this was hitting, now I tend to think parasites are a large part of the picture.
Wormwood basically is art.
Good luck
Derek
Posted by learning721 (Member # 23798) on :
thanks djf, gee, i'm up to 3 drops of samento and haven't felt a thing- but i must admit i'm nervious to keep going up with it- and nervious to try the enula
i wish i could finds some more success stories with cowden!
Posted by beyondtbi (Member # 23743) on :
Hi Gary,
I was dx this August and did Doxy for 3 months and felt much MUCH worse. The exhaustion, muscle pains, nausea just increased. And i am trying to work. Plus all the candida stuff. So, I quit the doxy. I found an LLMD (really DO) does who does energy medicine and Cowden's He started me on some Cowden formulas on 11/16. He said that first he was going to build me up and address the viruses and endocrin stuff before directly going after the Lyme. He also started me on low dose Naltrexone and increased my thyroid meds. I am seeing some improvement in ability to sleep, in feeling creative, have a bit more energy, and I feel a bit of brain fog has lifted. The stomach stuff is definately better. I still have all my symptoms, but not quite as bad. He states that both he and his wife have Lyme and that he is quite improved. That alone gives me hope. He told me that if people don't respond to the Cowden's, he uses the Marshall Protocol. So I know there are other things to do if I don't get significantly better. All this is very pricey. Hope this helps, Carol
Posted by gwb (Member # 7273) on :
Carol, that's wonderful that you found a lyme literate DO. I'm glad that you are starting to feel better.
I noticed you are in Texas. Are you being treated by a LLDO in Texas? Would you mind sending me a pm with his name and contact information?
I'm really thrilled that you are doing well on your protocol. This is encouraging to me. I look forward to getting your pm and hope that maybe this DO isn't too far from where I live in OK and possibly I could go and see him.
Thanks for sharing your experience with me!
Gary
Posted by nefferdun (Member # 20157) on :
I completely understand your anger toward the medical community for ignoring lyme which is epidemic and probably the actual cause of many diseases. I feel exploited by the manufacturers of the drugs and herbal products that are promoted to cure us but don't.
One bottle of HH-2 has 45 capsules and costs $38. According to Dr. S a man needs to take 25 capsules a day so one bottle would not last you two days! My bottle lasted three days but it did not cure me or even keep me in remission. And I am not one of those people that usually does not respond and gets sicker and sicker. I am very healthy, generally speaking and have had very quick responses to abx but simply have a sensitive system that cannot take them for long periods of time. I can't even drink coffee or take cold medicine. HH, by the way is a common garden plant called Camelion. It is extremely invasive so you could grow your own, put leaves in your salads etc. I use a lot of herbs, always have so I am also not a person that does not value them or have success using them.
Someone on another site did a research on HH and says they found the manufacturer of Zhang's herbs. The HH is much better than any other manufacturer but he could not buy it directly unless he bought huge amounts. However, the cost to Zhang (he figured) was $0.28 a bottle and with packaging came to about $1.50.
If I was going to do another herbal protocol I would do Buhner because he is not selling the herbs that he promotes. He gives reputable sites where you can buy the herbs in his book but you can get them elsewhere. It is still expensive but not nearly so much as Cowden or Zhang.
I did have better luck controlling lyme with herbs, than I did with bartonella. You can buy toa free cat's claw in capsules - I got 90 500mg capsules for about $60 and it seemed to help keep things under control, taking one three times a day.. I also used grapefruit seed extract which is easy to find - 1000 mg. For bart Buhner recommends resveratrol and stephania. Resveratrol is a powerful antioxidant so it is good to take any way. Recently Dr Oz said if he were going to recommend taking just one supplement a day it would be resveratrol.
There are a lot of very important supplements that need to be taken to help support our immune systems, detox, and replace minerals and vitamins that are depleted because of disease. It is imperative that we do not drink, smoke, eat any sugar or highly processed food. You just have to let go of bad habits and begin to think about everything that goes into your mouth as being nutrition. I was amazed the other day when a post brought up the sickest people on another forum and it turns out they are all long time smokers! How dumb is that?
Good luck with finding something that works for you. You might also try Diflucan, which is not an abx and helps kill lyme as well as yeast.
Posted by TS96 (Member # 14048) on :
I enjoyed almost 8 months of remission on limited cowden protocol but just recently had some symptoms come back and now back on abx.
I had orginally been on 14 months of various abx regimins before going into remission.
I liked Cowden... I think it helped a lot but didn't stand up for the long haul.
Posted by Rooster (Member # 11776) on :
I did Cowden religiously for 6 months straight and never missed a dose, no matter what. No
matter who had to watch me put ten thousand drops into a glass and then ask me what was wrong with me.I did not notice one thing.
I did not feel better or worse. i changed my diet to a lyme friendly diet and lost like 12 pounds. I was already skinny and I don't know if it was
the protocol or diet, probably both. I quit the protocol after 6 months in oct. 08 and spent probably $3,000 not counting other suppliments. I
just found this post because I was trying to research Dr. Z
I find that when researching anything on here I wind up getting so frustrated because there never seems to be a real solid conclusion because we are all different.
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