My new LLMD took me off all abx for a week, and wants to put me on the Cowden Protol of herbs next week and see how I do.
I haven't been responding well to the abx I've taken so far, and I can't tolerate a much more aggressive approach, which he says I would need.
I have multiple co-infections besides Lyme.
I'd need more than IV rocephin; I would have to take several other abx in addition to that, which I can't tolerate because of my esophagus and gut.
I also developed a yeast infection, despite taking loads of probiotics. I started diflucan two days ago.
I'm quite anxious to be taken off everything this week, and I feel Lyme lousy besides just plain scared.
And I don't even know if this protocol will work. Will I relapse further?
Has anyone tried the Cowden protocol? How did it work out?
THese ketes are having a field day in my body.
Lymehead
Posted by randibear (Member # 11290) on :
i think it was the cowden protocol that some llmd put me on. it was liquid samento, very restricted diet, other stuff.
didn't do squat for me tho... sorry...
Posted by Talktel (Member # 7980) on :
By the way, in case I didn't make myself clear, the LLMD is not taking me off abx for just a week.
He's taking me off it entirely and just using the Cowden Protocol instead. But this week I'm not on anything.
Does anyone know anything about this?
Posted by Lymetoo (Member # 743) on :
You can do a search here by clicking on the little word "search" up above on this page.
Then type in Cowden Protocol, Medical Questions, and click on "search".
I hope you do well on this, but I dont' know much of anything about it. Just what I've read here over the years.
Posted by JimBoB (Member # 8454) on :
Ask your LLMD about Buhner's Protocol.
It works better for many people.
I have used it for 21 months now and am doing relatively well on it.
I couldn't take abx either. It was destroying my stomach. Only C-Salts from Nutrition Wholesale helped fix that.
The herbs that BUhner recommends work, and they don't harm your systems, IF you take them properly. THEY make you "feel" better while you are treating too.
I speak from experience of my own, and from talking to many others.
Jim Posted by Talktel (Member # 7980) on :
Hi,
My llmd is very emphatic about the Cowden protocol. I can't even ask about the Buhner protocol because he's not that amenable to questions.
And he decided that I was anxious, which I was bec. I felt that he was pulling the plug.
He felt that I wasn't responding to the IM rocephin shots of abx I was taking, and I needed far more aggresive abx which I would not be able to swallow, or tolerate.
He said that IV rocephin itself wouldn't help because of the many co-infections I have.
He says he has had a large percentage of success with the Cowden protocol.
I wish he would have let me have it along with abx. I can't imagine the abx didn't do anything. Even if he would put me on IV rocephin with the protocol for the co-infections.
Especially because I feel awful today, (terrible brain fog, numb feet and joint pain, fatigue) and I'm not on anything in order to detoxify my body, until I start it on Wednesday.
I've got a yeast infection also, which diflucon is so far not even helping.
I feel like I'm being hung out to dry and am quite scared.
Lymehead
Posted by JimBoB (Member # 8454) on :
It sounds to me like you need a DIFFERENT 'new' LLMD. JMO, but IF it were me, I would look further.
After all it is YOUR body. IF you have all these coinfections and he wasn't about to give you more than one abx and no herbs for them, it SOUNDS to me that he doesn't know too much about treating these diseases.
JUST because someone hangs out a shingle, doesn't mean they are an expert, to be sure.
Your choice of course. Just my 2 cents worth.
Hope you find a way that truly WORKS for you.
Take care of YOURSELF, no one else will.
Jim. Posted by TerryK (Member # 8552) on :
quote: My llmd is very emphatic about the Cowden protocol. I can't even ask about the Buhner protocol because he's not that amenable to questions.
This is a red flag to me. Your relationship with your LLMD should be a partnership but at the very least, you should be able to ask questions.
If you have the option of seeing another LLMD, tell this one what you want. If he won't at least consider it then maybe you should go somewhere else.
As JimBob said, it is your body. Hope you can work it out or find someone who can meet your needs.
Terry
Posted by Talktel (Member # 7980) on :
He is a new llmd that I'm using, and he is a very well known ILADS doc.
My anxiety stemmed from the fact that he was taking me off all abx. And that I'm feeling lousy, which he didn't believe in a herx for more than three to four weeks.
I think that I'm generally a pretty normal person. Or at least I was before Lyme decimated my life.
I had just seen him for the second time. He would have initially used IV rocephin along with many different abx for the co-infections.
Instead, I ended up on daily rocephin IM shots (my fault) for six to eight weeks and 500mg of Leviquin, (Leviquin was only for about three to four weeks when he pulled me off it) for bart and micoplasma, in addition to Larium for babs.
He felt I should have been seeing some signs of improvement by then, if it was working.
These are drugs that I have been able to tolerate. For babs, Mepron didn't work, because I could tolerate zith. along with it, and I can't swallow the malarone pill.
I've been on different IM shots such as bicillin LA for two plus years and now rocephin shot for eight weeks, and leviquin on and off.
This LLMD would have put me on biaxin and I couldn't swallow it, or not tolerate it. Larium so far seems to be fine.
THat's why he wants to put me on this protocol. Because he feels like he can't treat me aggresively enough as he would want to, so the other option he feels is this.
I feel quite desperate. He is the umpteenth LLMD I have seen since Dr. B. retired, and my last resort. I had thought he was in the same league as Dr. B.
Lymehead
Posted by breathwork (Member # 567) on :
I have not used the Cowden protocol, but the local folks that I know that use it are seeing good results thus far.
It's not a cake walk or just supplemental herbs....The herxes are just as difficult and you can swallow water with drops of tinctures in it much more easily than large pills.
I wouldn't write the new LLMD off just yet...Frankly, I've been on various orals and IVs off and on for over ten years...Cowden is looking appealing to me about now.
Historically I am a allopathic medicine person, being a trauma nurse....but after seeing the results of Cowden in friends, I'm open to trying it.
Using antibiotics and the herbs simutaneously can be extremely hard on the liver...so using both would be irresponsible in my opinion.
Remember that artemisinin is an herb and look what is has done for many with babs...it's the treatment of choice for the WHO for malaria....herbal doesn't mean ineffective or less effective.
Artemisinin is the only drug that really has clobbered my babs.
Digitalis, a very common cardiac medication, is from a plant grown in my dad's flower garden...so are many medications.
Herbal meds aren't researched by pharmaceutical companies much as they cannot be patented...At best they try to create synthetic derivatives that would hopefully do the same as the natural herbal medication, but it then would be patentable, thus profitable.
See if you can contact others on the protocol to get feedback ...both pro and con...you might feel more well informed about saying yea or nay to Cowden.
I hope this is of some help...
Carol Ann
Posted by Aniek (Member # 5374) on :
I use Cumanda, which is part of the Cowden protocol, to treat yeast. So you may at least get your yeast under control on the protocol.
You do need to be comfortable with your doctor. You need to make the decision of whether you feel ok stopping abx or not. If you aren't, then maybe you need a new doctor.
I do know of at least one person who has Lyme under control on Cowden. But I don't know how much treatment she had first.
Posted by Pocono Lyme (Member # 5939) on :
We must have the same LLMD and I am considering changing. I had the same experience.
A bit scared too.
Posted by Lymeblue (Member # 6897) on :
I'm doing great on Cowdens.
After several years in a row worth of abx....strong ones!!...for me it was a relief to have my LLMD suggesting something different than abx. Cowden's targets not only lyme but , yeasts, boosts you rimmune system ,and helps in detox.
It is working for me except for my babs.
After 2months worth of Cowden's I started to feel tired, dizzy,etc thinking it was the lyme coming back (since I was only on Cowden's) , my LLMD suggested babs which he then added malarone ,larium and artemisia.
These days I'm doing GREAT on Cowdens , malarone and Larium, so it was NOT the Lyme bacteria itself messing me up , but babesia.
To me only to take one malarone a day and one larium every 6 days means vacation mode! after taking biaxin,levaquin,doxy IM bicillin,ketek and the list goes on and on....
Maybe Cowdens can help you with your lyme but you still medication for co infections IMO
Have you herx on Samento?
Posted by Talktel (Member # 7980) on :
Thanks all,
I'm starting the cowden protocol tomorrow.
I haven't tried anything yet, but the llmd says it targets lyme and co-infections with the exception of babesia.
He's keeping me on Larium for that. (I can't swallow malarone or tolerate plaquenil because of my gut)
How would I know if the protocol is working or not? Should I expect a herx like abx? At what point should I see if there's improvement or not?
The regimented diet concerns me as well. What does one eat if food can't be enclosed in plastic? All the time? Everything is packaged in plastic today!
Also, does this protocol mean absolutely no dairy, corn or peanut products, sugar, pepper or anything of that sort at any time? or just at the time when I take these herbs? Can I use any sugar equivalent like splenda, equal etc?
Does anyone have a clue?
Lymehead
Posted by hardynaka (Member # 8099) on :
Don't think you're NOT going to herx or improve on herbs.
As the other post said, people can herx immensely on artemisinin, an herbal extract. You name others, andrographis, cats claw, samento, turmeric, etc.
I had only used herbs to treat. I mean, mostly herbs. I find them superior to drugs in many senses (less side effects, for example). They don't cause the candida that's as nasty to treat as borrelia.
No one here with cronic GI candida will deny that this is a persistent and nasty critter!!
I didn't have to fight this nasty candida for long (except for a few weeks after abx).
I did a 2 week hiking tour in the mountaisn this weekend and yesterday went on kayaking for half a day.
I'm then all for herbs !!
Just let us know how it goes with Cowden!
Anxiety was for me a strong babesia symptom. I had it twice, so I can tell!
Selma
Posted by Talktel (Member # 7980) on :
Thanks for the good wishes.
I feel really weak and sick today, and this is no herx!
You sound really good!
I hope it works as well for me, even though I do remain somewhat sceptical.
How long until I figure out if it's a herx on these herbs... or a relapse?
Lymehead
Posted by Julz (Member # 12678) on :
Hi...just curious...because I have also been searching for a LLMD since Dr B closed his practice and still not feeling very confident...and have totally relapsed over this past year. Can you send me a private messge and tell me who you have / are seeing? I hope this new protocal works great for you! Please keep us posted.
Thanks,
Julz
Posted by Ruth Ruth (Member # 11059) on :
quote:Also, does this protocol mean absolutely no dairy, corn or peanut products, sugar, pepper or anything of that sort at any time? or just at the time when I take these herbs? Can I use any sugar equivalent like splenda, equal etc?
There must be reasons they ask you to change your diet. I beliefe your list (above) is of common allergens that might aggravate inflammation. If that is the case, then you would have less symptoms if you avoid them all the time.
You probably will want to have a talk with your new doctor about your diet questions.
Sweeteners: I use the sweetleaf stevia products, even to sweeten my water so I will drink enough throughout the day. It seemed to be the safest, best tasting option for me.
Posted by karatelady (Member # 7854) on :
I just did a Google search on "Cowden Protocol" just to see what the other herbs were besides Samento, Cumanda and Burbur and this thread came up 3rd from the top!
Sheesh!
Sandy
Posted by Talktel (Member # 7980) on :
Hi all,
The cowden protocol got pushed off for one more week bec. I'm having an unexpected minor surgery.
I was on absolutely nothing this week, no abx or herbs, and have gone downhill pretty bad, emotionally too.
I can't start the protocol tomorrow, but have to wait till after the surgery, till next THursday.
So I was started on Rochephin shots again until then. (Which does not come close to the strength of IV)
My llmd's PA now says I should take the rochephin shot for a month along with the cowden protocol.
Than continue with the protocol, and we'll see from there.
I wonder if I'll herx from the rochephin after a week of discontinuing it.
I'm also dealing with total non support from my spouse, which makes life pretty rough.
Lyme disease is miserable an d anyone who doesn't think so should get an infected tick bite, let it sit for a few years, as mine did, and then we'll talk!
Lymehead
Posted by 8man12 (Member # 7664) on :
Use Arteminisinin for the other TBd's,it will cover all of them,you may want to use some andrographis also.I do 10 days on,3 days off. Oil of oregano for the yeast,with some homemade colloidol silver,every other day. And probiotics.
Posted by CherylSue (Member # 13077) on :
I am working with a naturopathic doctor and doing a modified Cowden protocol using cumanda, burbur, pinella, parsley, etc. and will be adding samento sometime in the future. There's a lot of herxing going on. I've started July 5th. I, too, have a lot of emotional lability and anxiety on this protocol. I suspect I have Babs, too.
My question: Nutramedix clains cumanda and samento are good for babeosis. Yet, several comments from posters on this board claim it isn't so according to their LLMD. What then, did you use for the Babs? Artemisinin? I pulled up a report that said this was toxic. Did you use a certain brand? I imagine they are all not alike.
If the Cumanda/samento are good for Lyme, then what herbal is good for Babs besides artemisinin? Is there such a herb?
Thanks for your reply.
Posted by frakktured1 (Member # 13028) on :
I don't believe this llmd is anywhere near as good as dr b...
He would'nt have ever suggested this cowdens protocol... He would have had you on IV rocephin or vancomycin...
Especially since you did'nt get anywhere with IM penicillin la.
Somethings just not quite right here...
I understand about family not understanding our disease. I have some members that understand and some too busy to bother with my problems.
Funny thing is the ones that are too busy with their own problems have symptoms that I warned them about. Getting tested that is. But you know
they never will. They dont want to have that nasty thing uncle frakktured has! EWWWWW!
If I were you I would fire this llmd....he/she does'nt even sound like an ILADS practitioner!
just my opinion. fxd
Posted by fatigued15 (Member # 6437) on :
frakktured1 that is a strong statement about this llmd. Do you go to him?
My son has been seen in this office for 2 years. This llmd gave him his life back. He does not just use the cowden protocol. He must have his reasons when he does. He has left no stones unturned. Communication, compassion, caring we can not say enough about this llmd and the wonderful care he and his staff has given to my son.
Posted by CherylSue (Member # 13077) on :
So, Cowden's protocol does not treat babesia? I thought it was supposed to. What is Larium? Is that a good Babs ABX?
This is an interesting thread especially since I'm on a modified Cowden protocol working with a naturopath.
CherylSue
Posted by Talktel (Member # 7980) on :
Hi all,
I think the LLMD just fired me last night, and said "we weren't a fit". That maybe I should find another doc.
What other doc? I think I've been to them all! He was my last hope.
I would have started the cowden by now, but just had minor surgery two days ago and am having bleeding issues.
I don't know if the herbs have anything in it that would exacerbate the bleeding, and don't think I can start the cowden now and take a chance.
So I am without sufficient treatment now, and probably without a doc. Even though I told him I would still use the protocol.
I've just about had it with everything.
Lymehead
Posted by Julz (Member # 12678) on :
Hi Talktel,
Don't lose faith now... I have been following this thread since the beginning. I am really sorry that this happened to you. I can definitely relate to how you must be feeling. It really upsets me when docs think that it is not ok to question what they are advising you to do, and you should just do whatever they tell you without any thought or concern. I believe everything happens for a reason...I am still trying to figure out the positive reason to all this Lyme agony...but in this case I believe, in the end, you will find that this was the best thing that could have happened to you. I know that in the meantime you don't feel well, are questioning everything you said to this Dr. and feeling like you must have done something wrong, and of course worried about what you are going to do now. I can tell you that when Dr B closed his practice I went to this doctors office to hopefully find a great replacement for Dr B, and after the first visit I knew that he was not for me. I felt like he didn't consider what my particular problems were, but was giving me "the same protocals he gave to everyone else that came to him from Dr. B." I walked out with...no joke...10 different RX's...very aggressive treatment and no infor about side effects, possible issues, etc...and this was for a patient that had just had 2 unexplained seizure episodes, and was being told it was from the antibiotics. Anyway, I just want to make you feel better. He is not the only doctor out there, and he is right, probably not the right doctor for you. (pretty arrogant if you ask me..even though his PA was very nice.) There are many other LLMD's...I have been to MANY of them. If you would like to find out more, please send me a private message so we can communicate freely and maybe I can help direct you to the right doc, geographically desirable for you.
Posted by CherylSue (Member # 13077) on :
Anybody here improve on the cumanda, burbur, samento protocol? Would love to hear from you.
Talktel, I hope you are feeling better after surgery and found another LLMD.
CherylSue
Posted by JimBoB (Member # 8454) on :
My duck kinda fired me too, a couple years ago. Soooooo, I went on my own. And I am feeling many times better than before I started the Buhner Protocols.
It has been 22 months now, and I am on a reduced maintenance dose and working quite hard everyday out there tearing cars and truck apart; cutting, hauling and piling firewood. Only thing I am missing in my life is good sex now.
I am 66 years old, so IF I can do it and you are younger, you CERTAINLY can do it.
There IS life after doctors. Believe me. I speak from experience. It is my opinion nowadays, that if we hung a few of them by the you know what's; maybe, just maybe, a few of them might start really listening to us.
Take charge AND care of yourself. You are all you got, and no one else cares as much about you as you do. I learned that from this disease too. See, Lyme Disease is not all bad!
Jim Posted by SouthernCO (Member # 11167) on :
Thanks JimBob:
Your story gives some hope to old folks like me (63). Lost my LLMD when he closed his practice end of July, so I have diagnoses of Lyme, babesia, and CP, but no supervision. My wife says I'm better off treating myself, but, when I woke up again today with depression and pain like nails hammered into the sides of both knees, it seems completely hopeless.
Glad to hear you are able to get back to work, and thanks so much for your contributions.
Dave
Posted by JimBoB (Member # 8454) on :
quote:Originally posted by SouthernCO: Thanks JimBob:
Your story gives some hope to old folks like me (63). Lost my LLMD when he closed his practice end of July, so I have diagnoses of Lyme, babesia, and CP, but no supervision. My wife says I'm better off treating myself, but, when I woke up again today with depression and pain like nails hammered into the sides of both knees, it seems completely hopeless.
Glad to hear you are able to get back to work, and thanks so much for your contributions.
Dave
NEVER give up Dave. I have an occasional "Bad" day also. But for the most part I am doing pretty well for an "old guy".
Gonna go out now and cut some slabwood and haul and pile it for the winter. Then come back in and watch a little NASCAR practice, then back out for more wood cutting. Need to pace ourselves also as we get older.
I have always had the tendency to work till I drop. But can't do that any more.
If you haven't tried the Buhner protocol, try it, most people like it. I got some good results within a few days of going on Sarsaparilla, Cat's Claw and Devils Claw, 22 months ago. Then added in the Andrographis, Stephania Root, etc..
I think Red Root tincture and Milk Thistle are also important. I never or rarely herxed on it. A couple of times I had setbacks, but mostly from experimenting with what people told me to try on this board.
Stick to Buhner's protocols, and read and reread his book. He also has a couple of excellent CD's out there from this year too.
I thought I was going to die in 2005, but here I am alive and 'kicking', and doing pretty decent these days. Not perfect, but decent. And I am gonna keep going until I can't anymore.
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