bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Lymenet Friends,
Just want to let you know that it's official. I'm in the land of living lyme-free.
Since Dec. 1 I have now logged in two months free of lyme symptoms. Muscle testing also shows I am free of the bugs.
What this means for me is: Being able to work a half day, then buy groceries, put them away and cook dinner.
Going to the gym or yoga class as part of my regular day, not as my entire day's activity outside of websurfing.
Finding myself only 15 pounds above my optimum weight, without actually trying.
Homeschooling my daughter and teaching her math and science.
Driving downtown and remembering where I was going.
Taking a four year old to the library and coming home with a variety of age appropriate books for the family.
Getting the dishes washed and house tidied up every day, and keeping up with the laundry.
Having people over for dinner, and having a sense of humor even until 11pm.
Learning to play poker and winning.
I've dusted my cobwebs, washed my curtains, and repainted some rooms. (I still won't vouch for what's under the beds, and lets not start with what's in the attic.)
I'm still tired. My daughter had a a bad ski accident just before Christmas, so I lost five nights of sleep in ICU and Trauma, then got a bad flu. But still no lyme symptoms.
It was an intense incident, but an amazing opportunity for us to reconnect and hit the reset button for the whole family.
I'm still having to retrain my adrenals and mitochondria how to do their thing.
But I have joy naturally again, instead of forcing myself with the constant reminder to "be joy" no matter what.
Having been through all this, when someone asks me if I'm happy, the answer is YES. No matter what happens, I am so grateful to be alive and to have my family.
Since some people have asked, I'll post my protocol on this thread in future posts.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Geneal
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posted
That is wonderful news! I am so glad for you.
Normalcy.......a dream I hope to reach soon too.
Keep us posted.
Don't be a stranger here.....please.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Thank you for posting and spreading your joy!
Posts: 984 | From San Diego | Registered: Nov 2006
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CD57
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Member # 11749
posted
Yay!!! Please share your protocol and any other tips you have.....and congratulations for getting your life back!!
Posts: 3528 | From US | Registered: Apr 2007
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Peacesoul
Unregistered
posted
I love success stories. That is great news.
posted
Man, that's wonderful!!! Be sure to go post your story over in General Support. It's a sticky at the top. "Success Stories"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Yes please do post
A. How long you were sick
B. What you took to get better.
It doesnt have to be long if you dont want it too.
Im so desperate for a cure, its been 16 years since I first got sick. Not a good way to live.
Posts: 2905 | From New England | Registered: Sep 2004
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Tracy9
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Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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D Bergy
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posted
Way to go!
I always like a happy ending. I hope to hear of many more down the road.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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heiwalove
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Member # 6467
It's good you posted your fantastic news here for all the newbies and ol'bies to read.
I hope to join you soon.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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Truthfinder
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posted
Bejoy, you have done amazingly well.
Please post your story AND your protocol on Success Stories over in General so that it won't get lost!
BTW, I had no idea about your daughter's ski accident - it's amazing that between that and the flu, you still didn't relapse. Wow!
As Charlie said, I hope you won't turn into `begone'. Check back with us on a regular basis, please.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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merrygirl
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posted
Congrats! I am so happy for you!
Woo hoo!!
Best of luck, Melissa
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
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Member # 7136
posted
YAY*)!*)! Wonderful news!!! I am very glad for you*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
congratulations! Yes, please do post your protocol on the web. I would definitely be interested. My prayer is that each one of us can post a similar topic in the NEAR future!
God's blessings! Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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groovy2
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posted
Hey Bejoy --
thats Great news --I am next in line -- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Bejoy, Your success story brought me to tears! It is wonderful to hear that becoming healthy after a long period of being sick is possible. I am so happy to hear you're getting your life back on track! It's things like these that bring hope to all of our hearts. Thanks for sharing your incredible success story and I hope your days are continued with lots of activity and happiness. - Vic
Posts: 82 | From New York | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Here's my history:
I grew up in the woods and pastures of southern Connecticut. No doubt I was tick bitten many times.
My best playmate was treated for Bartonella. I had a serious case of the "mumps" with encephalitis at age 7, and I think it may actually have been lyme disease.
After that I started getting strange symptoms like bladder spasms and various pains that were never diagnosed or treated. Lyme hadn't been invented yet.
On my honeymoon at 22 I remember the "big bite" I pulled off several ticks, thinking it was funny. Two weeks later I developed severe bladder infection symptoms, with negative culture, that never subsided until lyme treatment.
Months later I developed severe muscle and joint pain along with anxiety. Years later I developed debilitating fatigue, confusion and loss of coordination.
Through all this I kept some degree of health through exercise, healthy diet, chiropractic, massage, craniosacral, meditation, vitamins, herbs, allergy elimination, and candida treatment.
That gives me lyme for at least 20 years, all of my adult life, and probably 35 years, since I was 7.
Now I get to find out what life is like without pain and with coordination and brain power.
You know what it's like to live with lyme - you have to work twice as hard as everybody else to get half the result.
I'm either going to be an unstoppable powerhouse, or else I'm going to sit back and let life seem to float my way for a change. Either would be good.
It took me three months from diagnosis to start treatment. Then it took nine months from beginning to end of treatment. I am still treatment the effects of disease on my body, if not the disease itself.
My visit to my favorite kinesiologist yesterday reaffirmed that I do not need to treat lyme right now.
I'm still dealing with some of the emotional after-effects, like trusting that I am loveable with or without my ability to ski the fresh powder like a pro, or look and act like a seventeen year old with the keys to the van.
I'm glad for the opportunity, if not for the cause. Now as soon as I'm done with the "issues" I think I'll go for the best life has to offer. I missed out on many good years, and I think I'll take them back.
Thanks everyone, for your kind words, and for sharing my happiness. I wish for your health. I could not have done this without lymenet!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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adamm
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posted
I'm so happy for you! Get out there and have some fun!
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lymeladyinNY
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Member # 10235
posted
Great news, bejoy! You've given me hope when recently it's been flagging.
Keep it up!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Here is a sample of my daily regimen:
I altered it as needed about every two to three weeks, but the basics stayed the same. I accomplished most things on the protocol every day, but usually missed one or two items.
7:00 large glass warm proteolytic enzymes homeopathics penicillin shot when using
7:30 Cortef Vitamins, Supplements and Herbs antibiotics when using herbal tinctures natural hormone cremes Venex bee venom ointment Protein shake with greens, msm, and D-Ribse
11:00 Finish shake or have snack Lift weight bars with no weights on them or go for a three block stumble
1:00 Cortef Vitamins, Supplements and Herbs Antibiotics Lunch Sota Instruments silver pulser blood cleanser
3:00 Green Drink with D-Ribose Read lymenet and research lyme treatments
5:50 Large glass lemon water
6:00 Cortef Vitamins, supplements, herbs antibiotics when using Dinner natural hormone cremes
9:00 vitamins, supplements, herbs lemon water with liquid minerals probiotics hot tub soak at 106
My philosophy - pay now or pay later with interest. I stuck to it and it paid off! This won't work for everybody, because we are all different, with different needs and different blends of tick soup, but it worked for me.
More to come on protocol...
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Something we can all look to for inspiration is the fact that you may have had it for 2 decades and seem to have moved through it in 9 months of treatment.
Which ABX did you use?
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
Bejoy, I'm so glad you're doing so well. We've really gone through treatment together at about the same pace.
I'm doing a lot better, too .... focusing on rebuilding my adrenals, detoxing .... weaning off abx.
Keep in touch, okay?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CherylSue
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Member # 13077
posted
Awesome, Bejoy. We're thrilled for you, and you have given us hope that it may happen to us.
What Abx and dosages were you doing? Were you working with a LLMD?
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Bejoy thats alot of Cortef but I guess it worked!
What were you eating for a diet? Were you eating sensibly?
All the best LH
Posts: 2905 | From New England | Registered: Sep 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
My Diagnosis:
Borrelia Bartonella Babesia Also Klebsiela Pneumonia
Bacteria killer protocol:
Artemicin/Wormwood - one year
Andrographis - about three months
Oregon Grape Root tincture - about four months
Biotox Elim PRL tincture - berberine, hydrastine, artemisia - about eight months
Bartonella Remedy from Deseret Biologicals - one month series
Borrelia Remedy Series from Deseret Biologicals - one month series
Penicillin G Procaine injections (equivalent to Bicillin 3x week for five weeks and repeated one additional week after one month for strep)
Metronidazole (Flagyl) 500mg daily 3 days week while taking injections
Venex Bee Venom Ointment (one week as prescribed on the package, followed 1/4 inch once a day for about four months)
Low dose Salt/C (3-4 g salt a day 3 months)
Proteolytic Enzymes on an empty stomach (about four months)
German isopathics for Klebsiela Pneumonia
Sota Instruments Silver pulser (an electrical pulse blood cleanser, daily about 5 months)
Hot tub soak nightly at 106
Reviewing this list, I can't think of anything I would leave out, if I had it to do again. They all worked powerfully.
I used an integrative protocol, lower on abx, and high on herbs and homeopathics. I chose this because we have no LLMD within driving distance, and I have only catastrophic insurance.
I read and almost memorized Burrascano, Klinghardt, and Buhner.
I felt that I could go either way with traveling to an LLMD out of state or using instate resources, but that my finances and health would not support the traveling very well.
I chose local integrative non-LL resources, and I studied treatments daily. I really don't recommend being your own physician or care manager, if you can get to a good LLMD, but it can be done with commitment, and good medical support.
I made sure to wait at least two weeks, or until the new herx subsided before adding something new to my treatment, so I could be more clear about my reactions to it.
I also absolutely encourage the use of antibiotics, especially if you have someone to prescribe and carefully monitor. I say, use every thing you can find that works, especially if it has research behind it.
As for myself, I chose to add some non-researched approaches because they were relatively inexpensive and made sense to me.
When I'm finished with all my info for this post, I'll do a short write up in success stories, with a link to this one. More to come...
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Dosage please? thanks and congrats!
Posts: 655 | From USA | Registered: Sep 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Wow! you really hit them with everything didn't you.
You must have had a good game plan. I would not even be able to keep track of all of that. I am glad you found a way to kill it all.
I am sure there is a few things in your protocol we all can learn from.
Thank you for the list.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Party bejoy. Yeah, I love a good party. I see you even did it with some voodoo stuff. lol
Keep up the great work.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Truthfinder
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Member # 8512
posted
Glad you will be putting this in the Success Stories thread, bejoy! We really don't want to lose this great story and information.
Also, I didn't see where you mentioned muscle testing as part of your on-going protocol. I think this may have had a lot to do with your success, don't you?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Dosages and muscle testing:
My dosages changed from month to month, and I'm not sure I would remember all of them accurately, so won't post most of them here.
Besides that, what worked for me wouldn't necessarily be the right dosage for the next person.
If you want to talk to me more about specific products or dosages I used, you can PM me and I'll see what I can do.
My dosage amounts of herbs and supplements were based on a combination of the instructions on the package, instructions from medical websites, working with a Naturopathic Physician who used to be a medical nurse and who does ART, working with an applied kinesiologist, and using my own muscle testing skill.
I would highly recommend that anyone using products that have not been scientifically tested for lyme work with an ART practitioner or kinesiologist to get feedback from your own body about what is good for your body and what isn't.
I also respect that kinesiology isn't right for everybody. For intuitive types it makes perfect sense. For those who need to see some hard evidence it is probably not the right kind of information to give them confidence.
Having said that, my husband is the hard science kind of guy, and I've taught him to muscle test. We get the same or similar results in blind tests. He sometimes uses muscle testing to decide which over the counter meds to take for a cold.
If it works for you, then great, if not, thank goodness we have some terrific and reliable LLMD's with plenty of experience, if not quite enough research on some of the effective options.
I've been muscle testing for ten years, and have confidence in my ability to choose what is good for my body and how much. I tested all of my products daily or weekly. I double checked all of my choices monthly with my kinesiologist.
I even worked with him on which antibiotics would be best for my body, how much, how long, and when to start. Pretty amazing to have that kind of integrative medicine available!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Some thoughts on healing:
Thanks everybody for your warm replies. I am still feeling better and better everyday - more energy, flexibility, strength.
It still amazes me to get up out of a chair and just walk away without any pain. I still stumble and stay bent over for a few steps out of habit, then straighten up with a silly grin on my face.
You will get there too!!! I can't wait to hear your success stories!
I went skiing yesterday. I bought the pass in September as an incentive to keep going with a rigorous protocol, and a promise to myself that I would get well.
What an experience for me! I was terrified. I'm so used to asking my body to do something and then it refuses, or does something else. It's such an out-of -control feeling not to know if your body will comply.
I had the best skiing day of my life. I skied longer, harder, and better than I ever have. It's amazing the amount of energy that is left over for other things when you are not dealing with constant searing pain and mind numbing fatigue. But I sure did want a nap when I got home!
I also had to go and deal with my fears because my daughter fell off a cliff while skiing with her dad last month.
I was in PICU and Trauma with her for a week. She is still out of school from internal injuries. This ski day for me was mental health therapy for phobias. I think I'm getting through it all.
It's funny how these things happen. Be careful what you ask for...
I would never ask for my daughter to be traumatically injured! But before the accident I had been crying inside because I felt like I had lost her. All these years of being ill had created a huge separation between us.
She didn't trust me to be there for her physically or emotionally, and couldn't count on me for much of anything, even to give her meals or clothes that fit.
I still loved her like my little baby, but she was becoming a teen-ager with little connection to mom other than obeying directions, when I could manage come up with them.
So two weeks after I was pronounced lyme-free, she got in this accident. I had to put the rest of my life aside, and sit by her side for seven days.
She told me to leave the hospital and go home to take care of myself, because I was too sick to help her. I told her that I was strong enough and healthy enough to take care of her, and that she didn't need to worry about me.
From that moment on, she wouldn't let me leave her side, day or night for five days and screamed for me if I even walked across the room. It was a bit of a re-bonding experience, you might say. I'm still decompressing from the intensity of that week.
I do craniosacral work, and got do do countless hours of body work on her in the hospital, something she wasn't usually willing to lie still for at home. After the first day, she insisted on maintaining constant physical touch with me.
Now that she is home, we are able to spend time just talking and being mom and daughter together. After all this horrible lyme business and traumatic injury, I get to have my daughter back.
She wants to go back to school soon. Good for her, but I'll miss her. At least I know we now have a healthy connection that can last the rest of our lives.
So my lyme protocol was based on staying within the amount we could borrow off our house. I wanted to get well, and still keep my kids security and our home. I managed to do so, but it still wasn't cheap, and it brought us up to our limit to be able to borrow and pay back.
Now with my daughter's accident we are well beyond being able to pay any of these bills. We have always made our own way and had excellent credit, regardless of our income level.
Now we're left with some debts we can't begin to pay on our own. Strangely, it leaves me just throwing up my hands and laughing. Something bigger than me is going to have to get this handled.
Some friends asked us to put together a website so they could help us out. So my husband put together a website called http://www.kirasrecovery.com/ They sent out the link on their forward lists for us asking their friends to contribute.
We've begun to get some help from people we'll never even meet. It's pretty amazing. It's hard to know how to express our gratitude.
The only way I know how to make sense of this is to pass it forward. Professionally, my specialty is craniosacral and PTSD treatment for kids who have sufferred trauma. I'm giving free treatment to several kids who's parents couldn't otherwise afford to get them that kind of help.
One of my big issues with having been ill all these years is that I lost my friends and social connections. Between lymenet and now this, I'm getting a getting a feeling of being connected and supported by the rest of the world, and also a feeling that I have something of value to contribute again.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
be that joy-
what incredibly wonderful news! i am SO happy for you!!
you've worked hard for recovery, and oh so much deserve every last ounce of joy that comes with being well again.
as for your dd.
i'm sorry about the circumstances that provided the opportunity for you to be glued to her side when she most needed you, but what a magical gift for both of you that you were able to BE THERE, ALL THERE for her!
I understand completely what that must mean to you, having so much so often not been there for my precious son.
thank you so much for sharing your joyful news.
love, dilly
[ 02. February 2008, 01:14 AM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Truthfinder
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Member # 8512
posted
Wow.
When I think of the story you just told, it will be easy to remember your name.... "bejoy". It fits you and the story so well....
Thanks very much for sharing this with us....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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sparkle7
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Member # 10397
posted
Thanks for posting this. I'm going to copy it & print it out for reference.
Good luck with everything. I hope your success lasts well into old age & beyond. You suffered enough!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Adrenals, Cortef, and Natural Hormone Replacement Therapy:
By the time I got my lyme diagnosis, my adrenals were already shot from dealing with years of infection and trying to keep up with job and family.
I was struggling to keep going on 35 mg a day of Cortef (ok'd by my doc as a temporary measure) even when the usual highest recommended daily dose if 20mg. That's when I said, "Test me for everything you can think of!"
My Cortef/hydrocortisone/cortisol supplementation has ranged between 10mg to 35mg daily through the course of my treatment. I was down to 10 a day before the accident and flu, now back up to 15, hoping to get off it entirely one day soon.
I learned to muscle test daily for amount for the day, and amount for each dosage.
I also followed low cortisol symptoms, which include for me: foggy thinking carb and chocolate cravings scratchy eyes, like the the sandman low blood pressure can't stand up fatigue
I learned that it is just as detrimental to my body to have low cortisol as high, and I took the medication as needed.
While Cortef didn't cure my lyme, I don't think I could have survived or gotten better without it.
I increased my dosages as needed during bad herxes to support my system.
I did the saliva tests to check levels. I also tested for the full range of hormones, and took transdermal cremes for Progesterone, Testosterone, and DHEA. I am still on T and P, but not DHEA. Also taking Cytomel - thyroid T3 & T4. In addition I take digestive enzymes - Betaine HCL because when the adrenals are down you don't produce enough digestive enzymes.
Progesterone mellows out the socks-on-the-wrong-feet irritability. Testosterone allows me to change lanes on the highway, reduces pain, and increases libido.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Candida yeast, and Mercury detox:
There seems to be a link between lyme, candida, and mercury. Doing a search here you could read loads on this.
I had constant chronic candida for years until I got my mercury amalgams fillings removed about seven years ago, then after that only two or three times a year.
With amalgam removal I had some naturopathic treatment including vit C, cilantro, garlic and chlorella.
During lyme treatment I continued mercury detox.
I used hot tub sweats (far infrared saunas are probably better but I used what I had.) Also E-lyte chlorella (they grow it in glass so it doesn't pick up mercury from the environment.) Also cilantro tincture. Some people also use Reduced L Glutathione, but my body didn't want it.
For candida therapy I used fresh garlic, Caprylic acid, and oregano oil. I also did probiotic colonics at home. This worked better for me than anything else, because you don't get the bad herx from die off, you just remove the offending critters that are not attached to the tract wall.
I know how to do a clean candida diet, but didn't. When my cortsol drops, in my confusion nothing can convince me that a chocolate chip cookie isn't what the doctor ordered.
That's one reason why I personally felt the need to do abx for as short a time as possible. I couldn't pull out enough will power to feed myself what you have to and survive long term abx. Even on seven weeks of it, I'm still recovering from a nasty case of candida.
Besides, I was too overwhelmed with fatigue to cook. We ate chicken, peas, rice, Amy's, and Lean Cuisine. Period. Oh, and dark chocolate, and half a bag of cookies in the grocery store isles before I realized what I was up to.
Leaving my trail. Back with more tomorrow...
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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I think I'm in the same boat. Can you tell me how much better you felt after getting your amalgams removed? I know there is a lot of controversy over removal. Also, do you have other crowns in your mouth? Reason I ask is that I have heard that sometimes to get completely better, some people have had to deal with other teeth as well. However, the mercury was a key factor.
Thanks.
Posts: 49 | From Grass Valley, CA | Registered: Jan 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Two puggles, I sent you a PM. I'd start a new topic on amalgam removal so you can get more feedback than just my own. You might also do a search.
My experience with amalgam removals was pre-lyme diagnosis and treatment. I'm glad I did it. I think it was essential, but I'd do it more carefully if I had it to do over.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Supplements list:
I used supplements mainly geared towards adrenal support and mitochondria energy production.
Adrenal support: See adrenalfatigue.org
Vit C B Complex B12 Pantothenic Acid Calcium Magnesium Fish oil Siberian Eleuthero Drenamin - dessicated bovine adrenal
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Detox:
I used
Manual lymph and spleen drainage therapy from a massage therapist Lmph Formula No. 2 from Herbal and Homeopathic Greats Spleen PMG from Standard Process Pekana apo-hepat homeopathic for liver Red Root tincture for liver Liver detox herbs milk thistle an burdock Bowel Cleanse Formula from Renew Life Vit C and magnesium to keep bowels moving Hot tub sweats at 106 Loads of water with lemon juice Detox foot pads (used a few times) EB-305 detox footbath (I loved it but only used it once due to cost vs. outcome) Oh yes, ad the occasional coffee probiotic enema
Edited with a few more things I had forgotten to post.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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SForsgren
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Member # 7686
posted
Impressive protocol. I am glad to see this integrative approach using both conventional and alternative treatment options. Personally, I believe it is our only chance of attaining wellness. For people with chronic Lyme, in most cases, neither conventional or alternative alone are enough in my opinion.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
This is so wonderful to read. Congratulations, bejoy, may your good health continue and I wish your daughter a speedy recovery. How frightening.
I've been talking to a lot of people about kinesiology lately and would like to find a good kinesiologist.
Can anyone recommend one in the NJ/NY area?
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bejoy, thank you for continuing to post about your protocol.
Wow, on that ski accident! I'm glad she's doing better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sparkle7
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posted
re: Testosterone allows me to change lanes on the highway, reduces pain, and increases libido.
Are you a woman, Bejoy? I assume you are. I am taking bio-identical hormones, too. I didn't know to ask about testosterone testing... Is it helpful for women?
Thanks for all your info. I know how it is to go broke & lose alot of friends & connections due to ill health. It's very hard for many of us who can't work & can't get disability. We need a better system to deal with this! Please pardon the pun but it's really an "accident waiting to happen".
The healthcare system is a real problem. I worked for over 25 years & paid into the system (health insurance, social security, taxes, etc.)... I got no help from the gov't or anyone in regards to medical care when I was too ill to work. It makes me mad just to think about this...
I always tried to play by the rules, work hard, pay my bills on time but it got me nowhere in the long run. It seems that illegal immigrants get better healthcare than hardworking citizens. I don't have any problem with people coming into the country & wanting to be citizens but we got huge problems with the healthcare system that really need to be solved. Avoiding the issue & making people who are sick with Lyme seem like crazy people (malingerers - I think they call us) is really bad! What more can I say...
Sorry to vent here. It just make me so mad!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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bejoy
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Member # 11129
posted
Sparkle, yes I'm a woman. We all need a little testosterone. Too much and you grow whiskers. Not enough, and you have no "drive."
Scott, yes, I beleive our best options are to use an integration of the best of everything we can come up with. You have been an inspiration to me and helpful to me in compiling this protocol!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
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Member # 11129
posted
Emotional Healing:
Emotions and relational issues don't cause lyme. Tick bites do.
Having said that, emotional and relational issues can cause stress that takes it's toll on the adrenals, and depresses the immune system.
John Gottmann wrote some research on the impact of being the recipient of degrading remarks. He noted that people get ill to the degree that they get put down.
During my course of lyme and treatment, I had to deal with feelings and beliefs about being put down, isolated, rejected from community, not good enough, incapable, unworthy of financial resources, unworthy of being well, etc. Ick.
I kept a determination to meet these issues head on, and it paid off. I cleared lots of baggage out of my life, with the help of friends, therapists, NLP, kinesiology, and homeopthic remedies.
It paid off. I got toxic people out of my life, and insisted on being treated well by those who are capable of it.
I'm more available now than I ever could have been to have a great relationship with my husband, have some good community support, keep some good friends, and to be well and stay well.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Fin24
Unregistered
posted
I am SO glad to hear of success for anyone with this. But I have a question...you say you went "lower on abx" but the dose for penicillin at 3 per week when many of us do 1 per week combined with that dose of flagyll isnt what Id call "lower doses"
I like your systematic approach, very practical and again glad it worked for you
do you have info On your IGG and/or HLA types?? Im wondering if this would work for those of us with additionl challenges...its harder for us to get past
and do you have comorbidants?? other illnesses or weaknesses?? some of us have pre existing other stuff or genetic wekanesses
i.e. I have EDS and dysautonomias, my son has a few of his own problems like a poor HLA profile and low IGG maybe since birth.
any more info you can give us may help!!!
and again I hope this lasts for you a lot longer than my remission did ( which was about 4 years)
posted
Congratulations! I hope to be able to say the same thing one day! Thanks for giving me hope. Some days it seems like the challenges will never end.
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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quote:Originally posted by bejoy: Emotional Healing:
Emotions and relational issues don't cause lyme. Tick bites do.
Having said that, emotional and relational issues can cause stress that takes it's toll on the adrenals, and depresses the immune system.
John Gottmann wrote some research on the impact of being the recipient of degrading remarks. He noted that people who get ill to the degree that they get put down.
VERY well put!
That is an interesting note by John Gottmenn. I was continually verbally degraded growing up and eventually had to cut off several family relationships to avoid the abuse, this was two years ago I finally cut ties. I had considered it part of my healing, but could not explain why.
No wonder I was so sick I couldn't get out of bed
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bejoy
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posted
Fin, good point. I think my abx dosage may have been higher, but possibly shorter term than many people experience.
Other than lyme, I have been blessed with good robust health. I have always relied on my physical strength to help me get me through the pain and fatigue.
Only problems are teeth that didn't calcify properly as a child, and a functional heart murmur. My genetically strong constitution may make it easier for me to heal than for some people who may have genetic or congenital challenges.
Lyme brought on it's host of troubles, though, with a cascade of system failure. I am still rebooting. I still swallow fistfulls of capsules daily, and follow a health rebuilding protocol.
I have now posted all areas of regimen and protocol that come to mind. Notice the entries that have been edited. I have corrected some typos or filled in some missing items I had not thought of the first time around.
Viktor Frankl, a holocaust survivor, wrote a book called Man's Search for Meaning. In his book he concludes that we make meaning out of horrifying crises by making a difference in the world.
This topic is my attempt to make a difference for somebody in the length and depth of suffering they have to endure.
If my experience as a part-time lyme scholar and part-time lyme guinea pig can help somebody else get their life back, then my time in misery limbo doesn't feel quite so pointless.
I think I'll come back sometime soon, and post my top ten treatment favorites, and then let the topic float back down the board.
I'm not on lymenet so much any more, but if you send a PM it will come up on my email, and I'll try to answer.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
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posted
Bejoy's top ten lyme busters and health supporters:
I wouldn't leave anything out of my posted protocol, but if I had to choose ten, these would be them:
1. Venex bee venom ointment 2. Penicillin G injections (like Bicillin) 3. Metronidazole (Flagyl) 4. Artemicin (Wormwood) 5. Deseret Biologicals Borrelia, Bartonella and Lym Remedies (ok, this is really three items) 6. Sota Instruments silver pulser blood purifier 7. Proteolytic enzymes 8. Vitamin C 9. Magnesium 10. B Complex
Throw in lots of fresh garlic swallowed by the clove, and plenty of lemon water, but they don't make the list since they are just grocery store items.
I also wouldn't want to leave out my Cortef, and natural hormone replacements, but that is adrenal therapy and not lyme specific.
Well, there you have it. Best of luck to you in your bug busting and healing process!
BEJOY!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
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posted
Just an update here. I got some symptoms again after about 8 months of being symptom free, so I'm doing more treatment.
I think on some level I was pushing life as hard as I could, just to see what would happen, and get the inevitable over with, if it was going to happen.
So I renovated my apartment, landscaped the yard, went mountain climbing, took a couple of all-night drives while fighting off a case of strep that my daughter brought home, and got bitten by a black widow spider while cleaning up the woodpile.
Well, that did it, especially the sleep deprivation from the neighbors dog going off every morning at 5am for a week. (They were kind enough to take care of the problem, once I got the nerve to walk over and ask.)
So I got some neuro symptoms - dropping things, stubbing my toes, difficulty finishing sentences, difficulty swallowing.
I didn't want to face it, but after three days of spewing my lemonaid across the kitchen, I went back on treatment.
I'm taking bee venom ointment, SpiroNil teasel root, and LYM homeopathic from DB. I've also done a round of auto-nosode, and and keeping up with a pile of nutritional supplements.
I wanted to go back on my Bicillin stuff, but just one shot of it for strep turned me into a cottage cheese factory, with a bad fungal sinus infection. And that's on an almost carb free diet.
Don't get me wrong, I think antibiotics are great for people who can use them, but my body just won't keep the fungus at bay for now, so I'm after other options.
The neuro symptoms subsided in three days. I'm still low energy, and getting some lymph indication that there is die-off and clean up going on.
So far so good. Just wanted to share the update, for those who might benefit from my experience. Keep gettin' well you all!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi there Bejoy,
Sorry to hear that you're experiencing some symptoms again. Sounds like you're getting them under control.
Was really impressed by your protocol and thanks so much for posting it.
I was diagnosed with Lyme and co. and did 3 1/2 years of antibiotics.
Along with it though I did some alternatives too like the hot water baths, garlic, supplements, etc.
I'm not under a doctor's care and am wondering if your naturalpath prescribed your Cortef. I'm seeing a naturalpath only for my Lyme and other issues.
My naturalpath last month told me I wasn't recovering due to unresolved physical/emotional trauma from an MVA back in 2001.
Sure is a complicated disease we all have. I never would have thought that structural damage could effect our ability to recover from an infection.
Like you my hormones are all bottomed out. I'm under no treatment currently. I tried the topical bio-identical hormones for 6 months which didn't work for me. I wasn't prescribed Cortef so that's probably why.
I'm supposed to start HGH injections-per an endo sometime and hope it'll help with the fatigue.
Keep us posted as to how you're doing.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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It is wonderful that you went symptom free.. I am sorry about your recent relapse
If you did it before you will sure do it again.. I hope to get there oneday!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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NanaDubo
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Member # 14794
posted
I'm so very happy for you and hope that your daughter continues to heal.
Beautiful protocol and beautiful person.
Thank you for sharing.
Oh ya - testosterone - It's in my mix and I love it.
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