posted
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
-------------------- Lymer since 89 Namaste Posts: 52 | From Fort Worth Texas | Registered: Jan 2013
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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!
Posts: 2386 | From New England | Registered: Aug 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I also would be very interested in what you have found helpful. Thanks for thinking of us!
Posts: 1748 | From United States | Registered: Dec 2011
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posted
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
-------------------- Lymer since 89 Namaste Posts: 52 | From Fort Worth Texas | Registered: Jan 2013
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
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!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
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.
-------------------- Lymer since 89 Namaste Posts: 52 | From Fort Worth Texas | Registered: Jan 2013
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