Hi fellow lymers, I just joined this forum in hopes of sharing what I have been doing to manage my Lyme. I contracted Lyme in 1989 and wasn't diagnosed until 1994. I did all the antibiotics for years and hit critical mass with major digestive problems in January 2001. At that point I abandoned the medical world and began an in-depth research adventure. I have had no medical treatment since that time. It has been 12 years now and my health is better than since I was diagnosed. There are lots of wonderful herbs and supplements available and I use several successfully.
If anyone is interested please let me know. I have very minimal symptoms most of the time. Flare ups are rare and only last 1 to 2 days any more, as long as I continue to be vigilant about taking my supplements.
I really feel for all of you who are suffering the side effects of the meds and all the horrible symptoms of this dreaded disease.I was totally disabled for a year in 1996 and it has been a slow climb back to health. I will post what I use if anyone wants the information
Posted by dbpei (Member # 33574) on :
I would love to hear about your healing journey and the supplements you have taken. Thank you for offering to provide us with this info and welcome!
Posted by Ellen101 (Member # 35432) on :
I also would be very interested in what you have found helpful. Thanks for thinking of us!
Posted by heatherene56 (Member # 39857) on :
Disclaimer: I am not a doctor and have no formal medical training. The following is just my story and what I do to have a decent quality of life.
As with anyone who has had Lyme for a long time, I have been through many ups and downs. I really don't know when I contracted Lyme. I know that in 1989 I was having joint pain, fatigue, migraine headaches and irregular heart beat that woke me up at night. I went to the Dr. periodically with severe fatigue and they couldn't find anything wrong.
In 1994 I was watching an interview with Annette Funachello on TV and she described her symptoms of MS. I got really scared because she described several symptoms I was experiencing. Weakness & numbness in limbs, dizzy spells, balance problems, cognitive difficulties, etc. I went to my Dr. who referred me immediately to a neurologist. Came up positive for lyme. then a spinal tap confirmed late stage.
First was 2g IV rocephin for 30 days and I was "cured" they said. 6 months later worse than ever. Spent the next year and half trying to find a Dr. who would treat me. The neurologist sent me to an infectious disease specialist who told me he didn't think I had lyme disease. Anyway I will spare you the details of all the Drs I tried to get help from. No one wants to touch this one.
In April 1996 I was in really bad shape and a friend told me he knew someone who had been treated successfully. I got Dr's. name and number and He started me on oral abx. 1500 mg of biaxin and 400 mg suprax, 10 mg flexeril 3x day and 100 mg zoloft. I went down for over 3 months. Couldn't function at all. Then slowly I started being able to do some things although the fatigue continued and I had to sleep 15 to 18 hours a day. The mornings were the worst. This reduced my symptoms but I never felt well.
Also, 3 months after Dr. started treating me my medical insurance dropped him as a network provider. He continued to treat me for which I am very grateful.
I wouldn't have stopped the antibiotics for anything!!!! they really improved the quality of my life.
In January 2001 my digestive system seized up and I said some prayers (which had kept me going all this time) and I started researching for herbs that would kill bacteria.
I have used myself as a human guennie pig many times. I have tried it all. I haven't taken any antibiotics since Jan. 2001. If you have a question about any particular herb or supplement please ask but there are too many to list. I have a shelf full of herb books now.
My current protocol is as follows:
Fresh raw garlic 5 to 7 cloves a day. I know it is hard to get that much down but the garlic really works. REALLY. People are concerned about the smell but there are things you can do to cut it. I work with people so I press the garlic and take it with dinner only. I smear it on whole wheat bread with butter and usually eat it with home made soup or something else that will help me get it down. you may start out slow with this because it will make you herx.
I use local or organic garlic. Never the stuff from china. I believe it is irradiated and pretty much dead. I tried capsules, cooking it and even pickled. The fresh, raw is what works best.
peppermint tea 1 to 2 cups per day It is a natural deodorizer and digestion aid
Drink lots of water 1 1/2 to 2 quarts per day (especially after eating the garlic) I use a great big glass and put 1/2 a fresh lemon in the water to alkalize it.
Ginger 1 capsule twice a day cuts the garlic smell and is also antibacterial. It helps with nausea and aids digestion.
Turmeric 1 capsule twice a day (can take more but take it with food) cuts the garlic smell and is Anti-inflamatory, anti-oxidant
Milk thistle 1 capsule twice a day good for overall digestion and is an amazing healer of the liver
Chlorella 2 (1,000 mg tabs) twice a day (Cracked cell wall) It is a super food and is 59% protein. This creates an alkaline system and gives me lots of energy.
Evening primrose oil 1 gelcap twice a day This really helps with the fevers and sweats, doesn't eliminate but reduces them by about 85%
Valerian Root 1 to 2 capsules 1 hour before bed. is a sleep promoter and mild muscle relaxer. helps me rest, reduces pain and there is no grogg the next day. Warning: it smells like dirty sox but is worth it.
Fenugreek 1 capsule twice a day is really great for all your mucous membranes and regulates blood sugar. I have dry eyes and it helps keep them moist
I have chronic constipation so I take a capsule of Casgara Sagrada every night. I don't know if anyone els has this problem from the abx
I don't eat night shade vegetables. These include potatoes, tomatoes, any red or green pepper and eggplant. When I stopped eating these vegetables my pain dropped by 85 to 90% within 2 weeks. It was an absolute miracle.
I also stopped eating peanut butter. Really caused a lot of inflamation
for several years after stopping the antibiotics I took a lot of acidophollis but I no longer have candida so I don't need it.
When I first stopped the abx I broke out with thrush over my entire scalp. Tea Tree shampoo took that away fast.
Some people swear by cats claw. I have taken it off and on but it gives me really bad sweats & fevers so when I do take it I take 1 or 2 caps at night and only every other day.
Everyone's body is different. I haven't been involved in the lyme community for many these years. I tried early on, but got really depressed and just worked on my own.
One very important discovery I made for myself is that keeping the body in an alkaline state is great for good general health but having lyme it is critical for reducing the inflamation, brain fog and fatigue.
I eat real food. Not packaged. I Pay attention to what I am eating and how it feels in my body. I Eliminate foods that make me feel worse.
I do Yoga (very modified) stretching and breathing regularly. Yoga means union and brings me into the moment which equals peace. This reduces stress and gets the body into a relaxed state so helps to heal.
I REST WHEN I AM TIRED!!!!! I learned this the hard way. There is no pushing through. It just puts me in bed for several days.
I do many things to manage my lyme and I am sure I am forgetting some things but these are the basics. If I think of something else, I will post more.
Good luck to you all and please feel free to ask any questions and let me know how it is going for you. Of course it takes time.
My life is good. Still have many limitations but I choose to focus on what I "Can" do, which is much more than in the past.
Namaste
Posted by map1131 (Member # 2022) on :
heather this lyme site many years ago was all about abx to regain health. Over the years alternative tx has been accepted and written about daily.
This site is just a good combo of traditional meds and alternative suggestions. It took many years and many times of intense fighting on board to allow alternative to speak. We all live in peace with one thing in mind....BEAT LYME & CO.
Pam
Posted by unsure445 (Member # 15962) on :
Glad to hear you are feeling good and thank you for sharing how you got to this place.
It sounds like you really listen to your body and know what it needs. And that you realize ongoing health is ongoing and not a destination. I struggle a bit with this�.
As far as what you take�sounds similar to the Byron White formulas.
Thanks again!
Posted by heatherene56 (Member # 39857) on :
I have never heard of Byron White. Just looked at his website. Lots of stuff for sale. I get my herbs bulk at the health food store and cap them myself. They are all raw. It is very inexpensive this way. I'm glad to see the Byron White resource for people. I have just bumbled along here. Thanks for your response.
Posted by Lymetoo (Member # 743) on :
WELCOME!!
moving to medical questions
Posted by heatherene56 (Member # 39857) on :
Just wanted to share some hope. We all get very discouraged at times
Posted by Lymetoo (Member # 743) on :
Many on this board use alternative health care. I do much of what you posted. Good stuff!!
The more you read here, the more you'll learn! Posted by birdie67 (Member # 35994) on :
Thanks so much for sharing. The Garlic sounds like it works great for you!
I have been taking a clove or two a day and feel like it helps too. I may slowly add more like you.
Wishing you continued good health Posted by LAXlover (Member # 25518) on :
Hi Heather and welcome!
I'm always for finding out the things that work for others. And I mean anything! Never thought I'd be rifing, taking far-infrared saunas, oxygen baths, etc! I'm currently taking an abx. break and doing a parasite cleanse & salt/c!
Hope you stick around LymeNet!
-LAXlover 75% of family with Lyme & critters Posted by daphnesmom1 (Member # 39433) on :
Thanks for posting this! Great Stuff and Lyme patients are always looking for something new. I personally will take your advice on the garlic. I am gluten free so I guess I can put it on Rice crackers.
Thanks again.
Posted by heatherene56 (Member # 39857) on :
Rice crackers will definitely work. The main thing is to mix it with something that will make it not burn your mouth. It is very hot and that's why I eat it with soup. It really helps it go down smooth.
I make sure I eat about a third of the soup when I'm finished eating the garlic because it will also burn the assophgus.
Posted by Haley (Member # 22008) on :
I was eating 1 to 2 cloves of garlic a day and was feeling sick from it. I don't know if it was killing stuff or if I became allergic to garlic.
Where do you find organic garlic? Do you buy it at the health food store. I may try to add this back into my regime and see what happens.
Do you think the garlic is what helped you to turn a corner?
Thank you for posting, hopefully all of us will one day be well and we won't forget to come back and tell people how we did it!
Posted by heatherene56 (Member # 39857) on :
Hi Haley, Thank you for your question. When I abandoned the antibiotics and started on the garlic I was very sick. It took a couple of months for me to start to feel better. I think it really depends on your overall health. Taking ginger with the garlic can help if you are feeling nausea.
I believe that any drug or herb that kills lyme is going to make a person feel worse before they feel better. My doctor explained to me a long time ago that the lyme hides in the cells and the immune system doesn't even recognize it. So when the lyme starts to die the dead bacteria floods the blood stream and the immune system kicks in, big time. From my understanding, that is what causes the herx reaction.
I get organic garlic at my local health food store. If they don't have it I get local garlic at the grocery.
I believe that the garlic is what kills the lyme. I also believe it really helped get rid of the candida albacans. Garlic is an amazing herb. It also helps with thinning blood killing fungus, parasites, and is also anti-viral.
It just takes time. I hope this helps. Namaste Heather
Posted by seibertneurolyme (Member # 6416) on :
Have you ever been treated or tested for babesia? The sweats and fevers sound like you could have that coinfection. And I do not think what you are taking will work on babesia.
The Zhang protocol is based primarily on garlic. You might want to research that. He wrote a book and sees tickborne patients in New York.
Also if you have not read it Stephen Buhner has two really great books. Healing Lyme discusses his herbal protocol for tickborne diseases. And the Herbal Antibiotics book -- 2nd edition-- is really good. It discusses herbs for babesia and bartonella that were researched after the other book was published -- primarily cryptolepis and sida acuta.
I am glad you are feeling better, but it does sound to me like you still have an underlying infection -- especially with such severe reactions to cat's claw.
Bea Seibert
Posted by heatherene56 (Member # 39857) on :
Thank you for the information. I don't think anyone knew much about any co-infections when I was diagnosed in 1994. No one ever mentioned anything about them.
I haven't seen a doctor in a long time. In fact all this co-infection info is news to me.
I have been researching it today and it sounds pretty bad. I can't read well at all. That was a problem before I got sick. I will look up the Zhang protocol.
Does a reaction to the cat's claw mean herx and it is killing the babesia?
Posted by dbpei (Member # 33574) on :
I don't think that cat's claw goes after babesia. It goes after borellia. I am taking Samento (a type of cat's claw) and Banderol.
Dr. Eva Sapi, a researcher who was studying cancer, had chronic lyme disease and as she got well, she started doing research on lyme disease. She discovered that these two herbs, if taken together, go after all 3 forms of the lyme bacteria as well as biofilms.
She has had some recent publications which are so valuable to the lyme community. Below are some of the articles with more info...
Thank you Heather ! Antibiotics rarely seem to do the job with those diagnosed late . And they cause a multitude of other problems that can be serious . Alternatives are always needed here !
I totally believe the garlic can be powerful with this disease . I am using it now for another issue , but will ramp up slowly to attempt to get better results . The best thing is that it is cheap and that it kills SOOO many pathogens ( like colloidal silver ) .
One thing that might make this garlic protocol is taking liquid chlorophyll with the garlic - a swig at the same time as it does not taste bad . It is an internal deodorizer .
The easiest way for me to take the garlic is by keeping lemon flavored hummus in the fridge and placing chopped up garlic in the hummus, then chewing it carefully . It has been very valuable this winter with a UTI that has lingered forever and ABX could not eradicate ( probably IC related) .
I thank you for sharing this .
How long did you use garlic before you noticed improvement ?
Posted by heatherene56 (Member # 39857) on :
I tried samento a couple of years ago but it is expensive. I went to cat's claw instead. I was having trouble functioning with it to I just stuck with the garlic.
I have never heard of banderol. What herb is it extracted from?
I must admit, I am feeling a little discouraged and overwhelmed with all this news. Thank you for the links. I read them. That would explain a lot about why I got so much worse a few months after my first round of IV rocephin.
Doxycycline just made me more sick. I couldn't tolerate it at all. Maybe because the round form was growing??
Am I going to have to get one of these protocols? I don't think there is a ND around where I live. I have been my own doctor for 12 years. Accepted that I will have this for the rest of my life and the best I can do is manage it.
About the garlic. I have always been very determined. When I started the garlic i ate a bulb a day for 2 1/2 months. I was very sick and digestion was horrible. It took a couple of months to start feeling better. I did have dramatic improvement in all my symptoms, except the pain. This was 2001
10 months later I eliminated the night shade vegetables and thats when the pain really dropped.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by heatherene56: I must admit, I am feeling a little discouraged and overwhelmed with all this news. Thank you for the links. I read them. That would explain a lot about why I got so much worse a few months after my first round of IV rocephin.
Am I going to have to get one of these protocols?
If you're doing well, why bother changing anything? Stick with what works!
Posted by Keebler (Member # 12673) on :
- Exactly in line with sixgoofykids' thought: "If you're doing well, why bother changing anything? Stick with what works!" (end quote).
However, for others who may be reading this thread (you for another time) - and just in general anytime I see anything about alternative approaches, links here provide vital basic information on this topic: --------------------------------------------
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor 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.
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.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
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.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both) -
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by heatherene56: I don't think there is a ND around where I live. I have been my own doctor for 12 years.
Yes, there is. You need to ask Keebler, she has posted about this before.
She's been offline due to computer problems, but I'm hoping she'll be back soon.
Posted by Carol in PA (Member # 5338) on :
Yayyy....Keebler's back!
Posted by Keebler (Member # 12673) on :
- [Yep, computer came back to me today, better as long as I don't stay on too long as to let it get too hot.] -
Posted by Keebler (Member # 12673) on :
- heatherene56,
Yes, there is a LL ND around the Dallas area, maybe more.
Be sure to take a look at the ND thread for how to select a LL ND as there are many considerations. A collection of various authors' works there can also help regarding the scope.
You can inquire here regarding those who are LL (and also check with your regional and state support groups for a fuller picture):
Texas Association of Naturopathic Doctors -
Posted by annxyzz (Member # 20404) on :
I was in Texas for years and there was only 1 LLMD in Louisiana and he quit taking new patients. The lyme people I knew who went long distances to "LLMDs" $pent a ton of money and made VERY LITTLE progress . They eneded up like Heather and myself , becoming our own doctors.
I am not saying doctors can not help , but I am not optimistic about cures for everyone when so many are ill years before lyme is identified .
As Stephen Buhner says, with lyme, EVERYTHING is EXPERIMENTAL .
I am with Heather in that I just try to manage the pathogen load with herbs and rife . ABX for 3 years caused me problems and I made little progress .
It would be great to have an LLMD expert, but even then there are no sure bets as I have seen people spend a lot of money and not improve.
I think this protocol is smart and I think garlic even attaches to heavy metals , which is a plus , but may also cause herxing .
I will continue w/ garlic and increase the amount and add chlorophyll to prevent smelling offensive .
Heather , you might research sida acuta, artemisinin, and cryptolepsis and consider rotating them in your protocol .
Thanks again for sharing - VERY helpful!
Posted by heatherene56 (Member # 39857) on :
Thank you for all the feedback and Links. I really appreciate these connections. I will check into it.
I am always looking for something new to feel a little better and maybe not have to eat so much garlic. I still love garlic but have to eat a lot.
I am grateful it works so well.
Posted by Keebler (Member # 12673) on :
OLIVE LEAF EXTRACT � LINKS -
Posted by annxyzz (Member # 20404) on :
Keebler , Do you know anyone who has had improvement with berberine ? What brand or product did they use ? Thanks!
Posted by heatherene56 (Member # 39857) on :
I tried olive leaf extract but had bladder problems when I took it. I stopped.
I have used goldenseal which has berberine and it is really potent. Very bitter. You can't take it for more than about 5 days at a time though. It is a very powerful herb. i only use it for colds. It really knocks it out fast. I just drink it straight but most people probably wouldn't drink it because it is so bitter.
Haven't heard of the other herb. What are the benefits?
Posted by VV (Member # 38828) on :
I would suggest being very cautious with berberine!
There are studies that show it causes muscle atrophy:
I stopped doing berberine once I saw this. I cannot afford to lose any muscle tissue.
Posted by heatherene56 (Member # 39857) on :
Thank you. I have been very careful with the goldenseal. I only take it 2 or 3 times a year.
Posted by Catgirl (Member # 31149) on :
Thanks for all your info Heatherene!
Posted by Catgirl (Member # 31149) on :
Heatherene, I forgot to mention, I agree with Bea, it does sound like you could have some babs (balance problems, cognitive issues, night sweats). Sida acuta, cryptoleptis, artemisinin or atemesia, or neem all help with babs, but you have to pulse them or you can become resistant.
Also, constipation can be parasites (very common with lyme patients). I use the salt/c protocol for this with herbs and sometimes parasite meds.
Haley, the garlic could have been hitting it, or you could be allergic to it. I'm supposedly allergic to it, and also resistant to it (testing).
Posted by VV (Member # 38828) on :
Catgirl,
"Sida acuta, cryptoleptis, artemisinin or atemesia, or neem"
When pulsing, what dosing and schedule have you used?
Posted by Catgirl (Member # 31149) on :
I haven't used sida acuta, but heard it's great. Bea probably knows the answer to this one.
The crypto, 1 tsp 3x/day for a month (don't know what tincture dosage is, but it's the same crypto, just made differently (condensed), so you need less, so I would probably follow whatever the directions say), art, 1 pill 2x/day for a month, neem, 1 pill 3 or 4x per day for a month. I more or less followed my body. If it felt like it wasn't working as well, I switched over to another herb (sometimes in 3 weeks).
Posted by Keebler (Member # 12673) on :
- Ann,
I've improved a lot with Berberine. It "cured" IC for me and helped improve seizure trigger threshold. Far fewer harsh startles from sudden sounds.
VV, thanks for that link. Not sure the parameters of the muscle study but it's important to find out more about their work.
I notice no problems with my muscles, though, it's good to see all the literature and there is a ton of it. Then to find a good LL ND with education and experience for a full protocol.
Berberine, alone, may not be a good idea but rarely is that a good idea for any treatment option as combination and rotation are so vital.
I still have a long way to go, of course. In a few months of using Berberine, I can't suggest it's a miracle but - for some symptoms it has been nearly that.
IC, urogenital tissue pain and vulvodynia are SO much improved and I've tried everything else. These are worse when off of it. So there seems a clearn connection to me.
Burning mouth and mouth ulcers finally better after years of sheer torture. I'm beginning to get saliva back in my mouth (still waiting for my eyes to be able to water, though).
Trigger joints in my hands also so much better when on Berberine. I've gone off of it for spells here and there partly as a test (and partly due to finances). When I'm on it for a period of time, my joints are so much better. Worse when off of it. WAY worse.
I have gravitated to the Tahoma Clinic brand in the links set above. No dyes.
As it's helped so much, I plan to start back on it (as I'm in terrible shape now off of it for a few weeks) . . . but in light of VV's link, I'll study that aspect and be sure my nutrition is tip-top so as to protect muscles.
Terry Wahls book on mitochondria is on my book shelf just waiting for me to finally read all of it.
I can't access a LL doctor but, for those who can, it's really best to do so. Still, I'm so grateful for the web and those good researchers who share their works. -
Posted by annxyzz (Member # 20404) on :
Keebler, I have IC . What brand of berberine or product worked for you ? Help!
Posted by heatherene56 (Member # 39857) on :
What is IC? I am not used to all the lingo her yet. It is almost like greek at times.
Posted by VV (Member # 38828) on :
OMG!!! Thanks, that explains a lot! Of course there is not cure. If you know something that helps, please let me know. I think sugar is a major irritant for this.
Posted by Keebler (Member # 12673) on :
- Ann,
I have gravitated to the Tahoma Clinic brand in the Berberine links set above. No dyes.
Heather,
Berberine has worked for me regarding IC. A nice surprise after being on it for a month or two - just happened and I was pleased to take notice of that.
It has not, however, done much to address urgency. But the pain has seen much improvement.
It's best to be seen by a doctor for IC, though, as it can have MANY different causes. Very common with lyme, though still best to see a doctor about this.
Consult first with your LLMD about it. And your gynecologist. -
[ 01-17-2013, 02:16 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- For women who have IC, this has had rave reviews. My ND told me of one woman she knows who found this to be her "cure" -
Fem Dolphilus by Jarrow -
Posted by heatherene56 (Member # 39857) on :
Thank You,
I am doing some google research and looking in my herb books. I like to understand as best I can what I am dealing with. I thought I had become prone to UTIs from years of weakened immune system.
Posted by kaybabalima (Member # 40029) on :
I've been taking the Byron White Formulas and I'm very happy with them. Much easier than dealing with a bunch of individual herbs and way more potent than I could make at home. The company is giving an intro/instruction to using their formulas on March 13 at 5:30 pm pst. Thought you folks looking for viable alternatives would like to know. This stuff really works but you have to use it properly to avoid die off and herxing etc. Go to their website and sign up for the telelconference. It's free too.
Posted by CherylSue (Member # 13077) on :
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