minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
For those of you about to give up, I thought I'd post my update.
I've had LD/Co for over 20 years. I contracted it, as far as I know, in my early 20s. I had a lot of physical pain and dysfunction from it, and intermittent cognitive problems. I was able to work in pretty demanding jobs for many of those years, with occaisional time outs on STD and heavy reliance on IV and oral antibiotics and herbs. I had no life outside of work.
Pretty much the same for the hubby, although he got quite a bit sicker than I did, and may have originally contracted LD/Co when he was a kid in N. CA. We're pretty sure the definitive bite that laid him out came from a tick in N. CA in an area known for it's high rate of babesia, though.
6 years ago I had to quit work completely -- before I got fired. I was exhausted, my brain no longer worked (I could barely drive), and I was in unremitting pain.
I was completely laid up for a year, and pretty much disabled for several years. However, I'm now back at work -- very part time, but I'm covering my expenses and making a small profit. I'm self employed, and the work is physical but not very stressful. (I don't do stress anymore).
My husband also had to quit work and, not so long ago, was nigh death. He's now doing OK. He'll never be back at work, but he's up and off the couch and active for several hours a day; his brain is mostly pretty clear and he has his sense of humor and his joy in life back. He's in hugely much less pain.
The key for us was 1) treating coinfections as well as Bb. They shouldn't be called "co-infections" because this minimizes their impact. Babesia is more intractable than LD for the hubby, and more damaging. Bartonella was a bugger for me, and very hard to get rid of.
2) getting the gut repaired. That involved treating c. difficile and h. pylori, and yeast, and we also found great help with the biofilm tx (nattokinase or lumbrokinase; other enzymes; Now brand apple fiber; chlorella; myoplex; cryptolepsis and Blt)
3) treating viruses (Lauricidin and a couple of different pharmaceutical antivirals)
I also use the JWLab Rife machine intermittently. I think it helps; can't swear to it.
I'm pretty sure we're both still dealing with Bb, but if we're careful with our diet and exertion level our bodies seem to be at a point where our own immune system keeps it suppressed.
I pulse abx every 3-4 months, and take Cryptolepsis and Blt; the hubby is on a more aggressive schedule.
Best of luck to all of you. It's a hard road. If you'd seen the hubby at his worst you'd never have imagined he could live through it -- convulsions, blackouts, excruciating pain, major cognitive dysfunction, black depression and rage. But he did. So hang in there.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Thank you, Minoucat, for sharing your story.
I wish you and your hubby continued success in your recovery!
Posts: 648 | From northeast | Registered: Feb 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Minoucat, thank you for sharing. I am so happy for the two of you. Regaining the 'joy' for living is what I hope for the most!
Thanks for the lift, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Thank you for sharing your success and giving us hope.
I'm curious how long you treated and how long you were sick before treatment.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
I was treated about 15 years for Bb alone. I was diagnosed and began treatment about a year after showing first symptoms. Hubby may have had sx since childhood (30 years before beginning tx) but had definite sx about 3 years before dx and tx.
Started treatment for coinfections 2002. With the Bb only tx I limped along -- got somewhat well, relapsed badly, had lots of sx at all times. Coinfection tx had a huge impact and sx specifically linked to each coinfection became very prominent.
A lot of what I thought was Bb was babesia and bart.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thanks, and my best wishes to you and your husband for continued better and better health.
I have also found that babesia was the cause of major symptoms and needed treating.
Just wanted to ask, what is Blt?
Posts: 2557 | From home | Registered: Aug 2006
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Blt is an herbal antimicrobial and detoxifier combo of herbs. Actually, they call it a "microbial balancer" but it has herbs in it that I know of as antimicrobials. May be antiviral, too
Made by Clinical Response Formulas
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
When you pulse every 3-4 months... do you find yourself herxing?
I've always been curious of people who do maintenance
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
minoucat,
I am so happy that you both have been able to recover enough to find the joy in life.
It does sound like a miracle that you both have made it this far!
Congratulations and thank you for posting your story and progress!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
canefan -- this is the first time I've pulsed for bart. 2.5 years ago I went through a long bart tx. About 6 months after that, while on the Cowden protocol, I relapsed very badly (couldn't drive). I went back on bart tx for a year, then was off for 5 months. I started having headaches again and some skin pain, so I'm in the middle of a 6 week pulse.
No, I'm not herxing. In fact, my sx cleared almost completely within 3 days of starting abx. That's the only the second time that's happened -- I think it's because I caught the relapse early. Also because I'm doing better detox these days.
The first time I improved immediately on abx without a herx was when I did a similar early retreatment pulse for babesia. I haven't had to re-treat the babs for at least 2 years, so maybe I fixed it's little red wagon.
My most serious continuing problem now is fatigue. I'm hoping that will ease off after I finish my pulse.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
outstanding another success story in the making; please post it in support on the success stories there for those who don't make it here to read it 1st hand. big thanks.
wow, you 2 have come so far, and thanks for sharing what you both have been doing to get you this far and providing INSPRIRATION to all those going thru this.
glad to read you are working parttime again and doing what you want to do avoiding the stress. hugs for continued success to you both.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Very good to hear. Hugs of joy to you and your husband... Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Glad to hear this, it brought tears to my eyes.
For me, babs and bart have been the real demons. I spent years chasing Bb and never felt much better. This year, with aggressive babs and bart treatment, I've gotten much, much better.
But, I'm not out of the woods. A recent bout of the flu brought back symptoms to the point where my husband was afraid I'd lost all my progress.
I'm going to discuss even more aggressive treatment against babs during my next appt. with my LLMD.
God bless, thanks for giving us hope! Love, the Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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I printed it out for hubby to read. He said maybe I need to try the cryptolepis again with bacon, lettuce and tomato sandwiches.
I said huh? He said it says right here your husband was taking the cryptolepis with blt -- bacon, lettuce and tomato sandwiches. We both had a good laugh over that.
The bart or BLO or mycoplasma or whatever this mystery pathogen is seems to be the big stumbling block for hubby.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Bea -- I love it. Take two BLTs and a rootbeer, and call me in the morning...
When I first started reading on LymeNet that people were so sick they were getting STD, I thought...huh? If you're so sick, where are you finding the energy to get a sexually transmitted disease?
Best of luck to you and your hubby. I do so hope they find the mystery organism AND a treatment for it soon soon soon.
LymeLady -- yep, babs is a beeyatch, but it's amazing how much you can recover once you've gotten rid of the bug.
Kam, I know you're still feeling rotten. Best wishes for you; you're a real role model in the way that you keep fighting on. Hugs and good thoughts.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
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