I am working with a naturopath on treating my lyme disease. If we go back to when I first had symptoms, we are guessing I've had this for 12+ years. I was officially diagnosed 3.5 months ago.
I am currently on a Researched Nutritionals protocol. Been on it for about 3 months now. The cost is pretty hefty ($800+ a month). How do I know if it's working? What should I be looking for? I don't feel anything - good or bad. Symptoms are the same with no real improvement.
Honestly, the amount of money I'm dropping on this is no joke. I've asked my 'doctor' (if you can really call a naturopath that) and it seems like we are just casually trying whatever.
I've heard we need to add more herbs, but nothing goes away. This seems questionable to me. How do you continue adding herbs, without taking any away?
How do I afford to keep adding expenses to these costs every month. So far, the price is not worth the outcome.
Are herbal treatments even legit? Is it worth my time pursuing this or what is the next step. I'm confused and, as I'm sure you all know, there doesn't seem to be any real solid information out there.
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(breaking up the post for easier reading for many here)
[ 02-10-2016, 02:03 PM: Message edited by: Robin123 ]
Posted by Keebler (Member # 12673) on :
- you say " I've asked my 'doctor' (if you can really call a naturopath that)" end quote.
Yes, naturopathic doctors are doctors. Best to find a LL ND, though so they have extra education in lyme.
And best when they incorporate a ride range of options, not just stick with one brand.
Naturopathic doctors go though four years of medical school learning this area of medicine that dates back for thousands of years. But not all naturopathic doctors are lyme literate.
Yes, herbal treatments are "legit" - but that does not mean all herbal attempts are equal.
I do not know about Researched Nutritionals and don't have time to research that right now.
Keep in mind that combinations often work best: Antibiotics AND herbal support -- or at times of just herbal, they MUST be very specific.
Detail below should help. Others may be able to weigh in on the brand / your plan.
Talk with both your state lyme support group and your local one about your doctor's experience and success rate.
If you been ill for 12 years, sadly, this will like take several years to treat. There is hope, though. But it is good to be sure you have the best protocol that you can fine. -
Posted by Keebler (Member # 12673) on :
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
Links here to two major sources: Buhner, & Zhang. Be sure to get their books.
RIFE Machine - Reference LINKS -
Posted by Keebler (Member # 12673) on :
- Best to get Harrod Buhner's books on lyme and coinfections, he has a new edition out.
An excellent introduction into herbal medicine. -
Posted by Judie (Member # 38323) on :
An ND (Naturopathic Doctor) is a doctor and does go to medical school for part of the training. A naturopath may or may not be a doctor. It depends on the schooling.
As far as just herbals, a lot of people do a course of antibiotics before doing herbals because herbals aren't strong enough for some infections. Some people don't have other options because they can't tolerate antibiotics.
I do herbal Chinese medicine which I believe is legit (it's been around 1000s of years longer than western). I started with antibiotics.
Cost is $35 a visit plus herbs which is way less than what you're spending.
When I worked with an ND on other issues (before Lyme), I got improvement in 2 weeks on some severe issues regular doctors couldn't help.
Posted by Jordana (Member # 45305) on :
It's kind of the same thing with abx -- just trying "whatever." Some people just don't respond to one antibiotic but they have massive response to another one -- some people can't tolerate some of them, some people need more aggressive treatement, some need to scale back.
The naturopath probably isn't "just trying whatever"; they're probably trying things to see if you respond. Problem is...yeah, what if it doesn't work, for all that money?
There's no easy answer to this, we're all in the same situation. If the standard protocol of 21 days of doxycycline worked for everyone Lyme would not be the beast of a problem that it is.
I also haven't heard of many cases where people felt better right away. Sometimes nothing at all happens for like...months. Especially with herbals - Buhner doesn't have a treatment plan that lasts less than a year.
Some of this takes a little faith, you know?
Posted by Haley (Member # 22008) on :
I have had some success with Cowden (also not cheap). I like his protocol because he has a schedule where you check everything off. This helps a lot when dealing with brain fog.
I do 2 weeks on and then take 2 days off. I feel extremely good on those days off (dare I say it). It's as if I have stepped up another level of healing. If I didn't feel so good on those days off. I probably would discontinue.
Posted by CCB_83 (Member # 46964) on :
Thanks for all of the insight so far. This is extremely helpful. As I've read your responses, I think the biggest issue for me is the increasing price of this treatment with no end in sight. It's just not sustainable.
I just ordered the Buhner book, that seems like it might provide me with a background on this.
I also think I need to ask my doctor a few questions about experience and training with Lyme. I got a referral to them, so that's on me for not vetting that out more.
Based on the outcome of that conversation, I may just have to take a look at other options. I did ask for names of LLMDs and they referred me out to a website to request those and said they don't work with any. Maybe that's a red flag?
If I go with a Buhner or Cowden protocol, would I even need to work with a doctor?
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(breaking up the post for easier reading for many here)
[ 02-10-2016, 01:59 PM: Message edited by: Robin123 ]
Posted by WPinVA (Member # 33581) on :
It's hard to tell from your post whether your naturopath is lyme literate and has a lot of experience with Lyme. That would be the first thing to check.
Second, you might consider finding a LLMD and considering antibiotics. Herbal treatments are legit but may not be strong enough for what you need. A lot of people do well with starting out with abx, and then switching to herbals once they have stabilized. Or take a combo of abx and herbals from the start.
Researched Nutritionals are good products, but I'm not aware of a specific Researched Nutritionals protocol. And yes, they certainly are very expensive! I have always taken them as an adjunct to abx, not the main course.
Posted by minimonkey (Member # 8693) on :
I'm using a scaled down version of the Cowden protocol now, and that seems to keep my Lyme in relative remission. I do herx from it -- but it doesn't wreck my digestive system like antibiotics did.
As others have said, everyone is different, and unfortunately, all these treatments end up being expensive since insurance is unlikely to pay for much of the treatment (if any) no matter which route you go. Good luck to you.
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(breaking up the post for easier reading for many here)
[ 02-10-2016, 01:59 PM: Message edited by: Robin123 ]
Posted by bluelyme (Member # 47170) on :
what the bleep..cowden hasn't dented it...chinese herbs did a number but worry about liver impact...just made andro ,knot weed ,r root and teasel..gave me good sweats...doing bvt but llmd said that doesn't kill it but i think i herx pretty good ...some say rife works i dont know what to believe.
i guess do it all somethings gotta stick it to them for long enough without killing us?
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(breaking up the post for easier reading for many here)
[ 02-10-2016, 02:00 PM: Message edited by: Robin123 ]
Posted by TNT (Member # 42349) on :
For one, tinidazole being a cyst-killing drug would cause conversion to more spirochetes.
And, I think minocycline is an intra-cellular drug (correct me if I'm wrong), so it would be forcing any ketes out of the RBCs and into the plasma. The net effect may be that there are more ketes in the plasma than would normally be seen.
I'm a firm believer in the synergistic effect of ABX and the concurrent intake of antimicrobial herbs. I have found herbs to be extremely helpful and very potent...alone and in combination.
About the BVT... it looks as promising as ANYTHING to date for curative potential. Posted by Brussels (Member # 13480) on :
Many people never take abx and can fight lyme successfully, specially chronic lyme.
Just see the amount of people on Buhner's protocol.
The problem with all is timing, dosage and combination. The easiest is abx combinations (just because there are less possibilities), but many people do not get healed after years of amazing combinations...
Herbs are harder, because you need to combine even more stuff, the choices are huge. Buhner is a good starting point!
Side effects with herbs are smaller (usually), and they do not create resistance (like abx certainly does).
Plus, they still nourish and clean your body, sometimes, modulate your immune system etc, while abx is certain catastrophe for your gut, sooner or later, adding more to chronic health problems in the middle-long term.
I would read some of Buhner's books and try on your own too. There are forums where you can ask questions about his protocols.
I find it crazy that herbal protocols have to cost so much.
There are cheaper alternatives to some Cowden tinctures too (like making your own parsley, buying other brands of Noni tincture, that work very well too, no doubt, IGNORING his TOA free cats claw and going directly to normal cat's claw in bulk)...
Only shifting to TOA free when normal cats claw does not work....
Plus all the Chinese herbs!
There is an amazing array of anti bacterial herbs and immuno modulating herbs that cost very little, if bought in bulk in Chinese herbal pharmacies.
I love homeopathy, which is very inexpensive, and believe me, quite potent (in case of nosodes).
It' s much less expensive than the majority of herbs and an amazing tool to do so many things (even larger field than herbs, if you want to dig into it....)
Informing yourself is still the most useful thing in this lyme journey.
Finding professional help is always good, but no one has the answers anyway. The more you learn, the better for you!
Posted by CCB_83 (Member # 46964) on :
Thank you all for the insight. I just received my copy of Buhner's book. I am looking forward to reading that. I also have started researching on my own. I am finding that informing myself is a huge part of this.
It's so hard knowing that no one really has an answer.
Posted by hopingandpraying (Member # 9256) on :
I contacted Nutramedix who manufacture the products for the Cowden Protocol several months ago and learned they have a Financial Hardship Program for the Cowden Support Protocol which is available for one patient of a practitioner. The cost is about one-third the regular price!
An application is filled out and they call the practitioner to verify the information. The patient is then notified of approval. The stipulation is is that only one patient in each doctor's practice may get this assistance.
You would have to call them to find out if this is still available to patients.
Posted by bluelyme (Member # 47170) on :
Thank you tnt thank you brussels. ..ccb no body knows is right ..i quote somebody else in saying antimicrobials in lyme is like trying to kill a snake with bugspray...
Posted by Blymey919 (Member # 47424) on :
Keebler and Brussels great info!
Buhner's herbal protocols, books and website gave me a great place to begin, helped me become better informed and better able to assess what was & wasn't working for me.
I have a great LLMD but after researching more I feel I have a better 'voice' a protocol that's working for me, individually.
I found it important to remember that Borrelia has the ability to modify it's DNA to adapt to an individual's immune response (& pass that DNA to its offspring!).
May not work for others, but for me - after doing the research - honing in on a solution that felt right for my healing became paramount to doing what seemed to be the popular option(s).
I've learned to listen to my body and trust my intuition, in conjunction with guidance from my LLMD who practices functional medicine.
My husband and I have both been fighting Lyme - over 10 yrs for me and nearly 20 yrs for my husband. I contracted Lyme + some coinfections from my husband.
He tested negative repeatedly for Lyme so never knew he had it until I tested positive and began my treatment.
The financial strain for us has been enormous. We've also found we've individually responded better to differing protocols (with some overlap).
Beyond the info already provided from others, a few suggestions I'll throw out there for cutting some costs and help financially...
- Consider obtaining what herbs you can in powder form and make your own capsules. Buhner has some links on his site for getting some herbs in bulk.
LuckyVitamin.com is a good resource for obtaining cheap empty capsules and a capsule making machine (I like 'The Capsule Machine' using size '0' capsules).
I even grow some of the herbs I use frequently (Nettle, Feverfew, Tumeric, Ginger, St John's Wort, Comfrey & Chinese Skullcap among others) and make my own teas, tinctures & salves.
There are lots of online resources and books on this - Rosemary Gladstar has a beginner guide to doing this if it interests you. It's been cost-effective, beneficial and really fulfilling for me.
As far as preparations, dosaging and formulas, I've become very comfortable with it all after consulting knowledgable practitioners, aromatherapists, practice and some great books.
- Check in with friends and family to see if they can help organize a local or GoFundMe fundraiser for financial support.
- Research financial resources/support on this site , your employer, your community, etc.,... to find out options and avenues for further financial support.
All the best to you and hope you find a healing path that begins working for you.
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(breaking up the post for easier reading for many here)
[ 02-10-2016, 02:02 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Interesting thread -
First, if you all could break up your posting into no more than 3 lines at a time, for those here who need the space around a couple lines to be able to read here - thx -
To answer some Qs, yes, naturopaths are trained to treat Lyme disease. There are lots of herbal approaches people are using; sometimes people cannot tolerate antibiotics. It's a matter of finding out which ones work for us - we're all different.
There are Buhner sites where people discuss the herbs and how they're doing on them.
Posted by yanivnaced (Member # 13212) on :
if you want to do herbs cheaply you can buy them in bulk and brew your own decoctions (ie. make a tea).
All of the herbs listed in Buhner's books and a lot more are available online.
Years ago when my wife was sick I used to buy herbs online in bulk from '1st chinese herbs' and also a site called 'rain-tree'.
Our naturopath said that the decoction needs to be brewed until strong and bitter, then you know you are getting a good dose of the active compounds into your system.
Posted by Brussels (Member # 13480) on :
You don't even need to do capsules with the capsule machine.
I used to do that in the beginning, after I got fed up, and just mixed all the powder herbs in a glass or bottle and drank that during the day.
After lyme treatment, I got used to take the worst taste stuff that exists on the planet. The only thing I cannot stand are Rizols, ozonated oils.
For some reason, I refuse to take that if not in capsule. All the rest, Buhner, Chinese herbs, rain forest herb, I take them in powder, and in water. Easy, and effective (even though some people may die from the awful taste).
For me, I really got used to. and I had to give those same powders to a small child, who HAD to ingest without capsules. It always worked with few tricks....
Posted by Hides1 (Member # 6348) on :
Make sure you know what you are treating otherwise the treatment may be worthless. Many people have the confections- babesia, bartonella, and mycoplasma, erlichia etc. You have to know if you have these cause treatment is different. Stephen Buhner has great herbal books which go in depth with symptoms and herbs. He has the Lyme one but also I found the Bartonella/Mycoplasma and the Babesia one to be EXTREMELY helpful. One solution doe snot fit all and most people with Lyme have the coinfections too!
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