bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I've been away for a long time, busy being well, but I know its helpful to hear from people who are past the business of Lyme.
I grew up near Lyme Connecticut, and probably had Lyme Disease and Co-Infections most of my life. I had symptoms since I was a child, but they took my health and strength when I was about 30.
I could barely get out of a chair because of the fatigue, the pain was so great I couldn't sleep at night, and my mind was so confused it became too dangerous to drive.
I got my life back after a Lyme diagnosis and treatment in my mid 40's.
Now I'm a single mom, I run two businesses, I just remodeled an old house (mostly with my own hands), and I run, ski, and play with my friends. (Next challenge and comittment - get enough sleep!)
I ran a 10K this spring, and am now training for a 17 mile Ragnar. After the race I had to walk on just bawling from the emotion of it.
There was a time when I had lost the will to live, and had no concept of being out of pain. I feel like I ran that race for all of us!
The friends I ran with had no clue, and there was no way to explain the victory I felt. I hope they will never be able to understand!
Just want to encourage each of you that you can absolutely get well, so don't give up!
I'll try to stop in from time to time with some thoughts on health and healing. I owe this board so much. You got me through the hard times and back to health. You believed in me when I had no where else to turn. I believe in you!!!
-------------------- 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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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thank you!!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Ohh, I just loved reading this!!! Thank you SO much for stoping by and sharing your wonderful story!!
Blessings to you and continued great health Posts: 486 | From USA | Registered: Jan 2012
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
So happy that you got well. An inspiration to all of us.
Do you have a link to your full story & what you did to get well?
Posts: 2087 | From NY | Registered: Oct 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Thanks for coming back and sharing!
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Good to hear. Thanks for stopping in.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Thank you Bejoy! I needed to hear that... I was just diagnosed this week and I am terrified about starting treatment. Good to hear that it will be worth it at the end of this crazy journey...
Posts: 80 | From New England | Registered: Jun 2012
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
i am so glad you recovered your life. It is really an inspiring story. Makes me want to stand up and cheer.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< bejoy >>>>>,
Thank You for sharing Your Victory!!!
I really needed this today!!!
Jus'Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
needed this tonight! thank u and God continue to bless you
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Good for you! I'm glad you came back to say "hi". I think people here could use support from people who have been dealing with this issue of Lyme & the co-infections. Especially, from people who regain their health!
Thanks for the inspiration.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
PRAISE GOD
NEEDED TO SEE THIS SO BADLY TONIGHT,
THANK YOU FOR CHECKING IN
Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Thank you so much for taking the time to stop by and give us hope! Is your story written anywhere on this site so we can see what helped you and what did not?
I know each case is different and we all respond to different treatments, but the success stories are far and few so any information would be so appreciated.
Posts: 2386 | From New England | Registered: Aug 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Bejoy -
Congratulations!!! And thanks SO MUCH for sharing your success story with us!
Would you mind sharing? What abx, if any, were included in your treatment, and how long did you treat before you were symptom free?
Thanks so much! And keep on truckin'!!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
God bless. Hope health continues all uphill, I have no feeling depersonalized, but I knw a good happy story when I read one. I'm in treatment for tularema and Lyme.One day. So happy for you.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Here's my story in a nutshell:
It took about three years to get mostly recovered so that I felt almost "normal", then another two to clean out co-infections, rehab, and get healthy and strong.
My story is mainly alternative treatment, but I encourage anyone who has access to an LLMD to go to the best expert they can find. Referrals are best. Talk to people who have gotten well, and go to their best professionals!
Diagnosed by my naturopath. Denied treatment by the University Hospital infectious disease specialist. Sent to the rheumatologist for immune suppressants. Refused.
No insurance coverage to see an LLMD. No local LLMD, no money for airfare, and unable to travel due to severe illness. No financial support from family available. Already completely tapped out, hardly able to work, and living on my home equity. Had to get creative.
Worked with several local alternative practitioners, and came up with a plan.
Got on low dose hydrocortisone supplement to reduce brain swelling so I could think, and to increase blood pressure so I could stand up and stay standing.
Started with IM penicillin injections every three days, added Flagyl 2 days a week. Got better fast, then tanked from major systemic Candida. Tried adding high dose Diflucan, and good Candida diet. It wasn't enough. Realized I wasn't going to be able to respond well to antibiotics at this time.
Started DesBio homeopathic series remedy for Bartonella. Tanked really hard, then recovered somewhat. Followed by DesBio Borrelia series remedy. Got much better.
Got lots of craniosacral therapy and learned deep mediation for pain relief.
Tried Buhner herbs, more improvement on Andrographis and Teasel Root.
Added Bee Venom Ointment, pea sized amount daily. Much more rapid improvement. About 2/3 recovery on this.
Added Peruvian herb Chuchuwasi, and Chinese herb Zao Xiu. Also seemed to be highly effective against Lyme and some of the co-infections.
Noticed rapid improvement from people going to Germany for biophotons and nosodes. Figured out how to do a similar therapy at home with the PE-1 light unit and nosode energy signatures. This was a highly effective treatment for me. Treated with this system extensively for about three years.
Discovered through muscle testing I had the encephalitis virus FSME, known also as TBEV as causing brain inflammation, migraines, neck pain, disrupting neurotransmitters causing speech problems. Treated with Chinese herbs and photons. Those symptoms were relieved.
Treated a long list of additional co-infections with photons.
Discovered I was living in a very moldy house, and that my chronic fatigue was related to the fusarium mold. Also learned about how badly mold affects the immune system. This probably explains my severe reaction to antibiotics, because I had no resistance to fungal overgrowth.
Remediated my house, and was soon able to get off hydrocortisone and stimulants. Did photons to get mold and the rest of my Lyme out of the brain. Very difficult recovery, at least as hard as Lyme die-off for me. Lost my joy.
Used BH4 biopterin and a list of detox supplements to deal with the intense suicidal feelings from neurotoxins in the brain from Lyme and Mold die-off. Got on Cymbalta and Wellbutrin for a year, and it helped. Got my joy back.
Got quite well on this process, but was still having intense fatigue every time it rained from living in a moldy house.
Decided to move, and husband wouldn't go. He asked for a divorce because he didn't want to be "married to a sick person," so I took the kids and left him behind.
Kids had negative Lyme tests but many symptoms. Treated them for Lyme and mold as well, mostly with photons and supplements.
No alimony, very little child support, some home equity left, I bought a trashed forclosure. After moving out I had so much energy that I was able to transform my new house and my life. Got into new relationship with a great guy.
Every day was one long prayer for me. I started and ended most days with the words "carry me because I can no longer go on by myself." I got carried. The right information were given to me at the right times, and I was able to get strong again. I am grateful.
-------------------- 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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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thank you.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Wow, you are a strong woman.
Congratulations! :-)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thank you SO much for sharing!! It's great for those of us still VERY deep in the trenches to hear successes from folks like you!!!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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If your treatment was in Utah, would you mind sending me a PM?
Posts: 312 | From Utah | Registered: Nov 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
bejoy, thanks so much for taking the time to share your story and treatment. You have been through so much to get well. So happy that you are doing better and your life has really turned around.
Posts: 2386 | From New England | Registered: Aug 2011
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Just want to remind everyone not to forget mold and candida as possible causes for many Lyme-type symptoms. Both Lyme and molds and fungals can cause neurological problems, fatigue, immune dysfunction, and chronic pain.
People who are vulnerable to Lyme are often those vulnerable to molds and yeasts as well. You can have your doctor test you for systemic molds. Everyone on antibiotics should be treating for candida.
Molds can be behind walls from roof or pipe leaks even if you can't see them. They can cause immune dysfunction that contributes to a serious Lyme infection, and can make it very difficult to recover from Lyme.
If Lyme treatment has stalled out, it may be time to look at fungus
Best wishes to you all! There is life after Lyme! Don't give up!
-------------------- 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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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It is so nice to hear from you! I am amazed at all you have been through and all the twists and turns your life has taken, and how incredibly you have perservered and risen above, and prevailed!
I have always admired you, and I am thrilled to hear how well you are doing! You are quite simply, amazing!
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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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
That you kept going and trying things for so long is just amazing. Congratulations. Some of us have been fighting even longer and are not well. Better and functional, but not well. Green with envy!
Posts: 2888 | From USA | Registered: Mar 2004
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Bejoy,
May God continue to give you good health and great joy every day of your life.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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posted
What tests does your doctor do to find systemic mold? How can you tell if your house has mold if you can't see it or smell it?
Posts: 538 | From kentucky | Registered: Nov 2011
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posted
Thank you for posting this. I am in my early 40s and live in CT too. I was diagnosed by a naturopath. I began "real" treatment in April. I am hopeful to be where you are shortly.
I believe I have had this for more than 20 years but all ....broke loose in 2008.
Its been a roller coaster every since. Thanks for taking the time to post.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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