posted
Hello all. I took a vacation from the board for a few months, but I am back to give encouragement to all who despair that they will never get better.
After almost 2 years of antibiotic treatment, I am finally turning a corner for the better. My fatigue is GONE.
Cardiac issues (arrhythmia, tachycardia) GONE. Near syncope and seizure-like episodes GONE. Chronic constipation GONE.
Severe itching episodes GONE. Cramping and twitching of muscles, incl. facial tic, are GONE. Cognitive symptoms mostly GONE. Burning neuropathy in my feet, not gone completely, but MUCH IMPROVED. Stiffness of hands and clenching of fingers into a fist not gone completely, but MUCH IMPROVED.
My strength has returned and I am going to the gym 3 times a week for vigorous workouts (strength training, not cardio).
Vision has IMPROVED, but not 100 % yet.
Balance has IMPROVED, but not 100% yet.
In summary, I feel better and stronger than I have felt in YEARS.
I am not "cured" yet, and will likely continue treatment until I'm 100%, but my Lyme doc is very pleased with my progress, and so am I.
To everyone on this board, do not despair. There is HOPE.
A regular exercise program is IMPORTANT. My Lyme doc kept after me to get my fat butt off the recliner. I was too tired early in treatment to do much. When I started feeling a little stronger, that's when I started a rigorous workout program.
Planet Fitness gym only costs $10/mo, and they are open TWENTY-FOUR HOURS during the week. PERFECT for Lymies with insomnia.
My protocol during the last several months: penicillin, biaxin, fluconazole, plaquenil, LO-DOSE NALTREXONE (will bring your libido back), ENZYMES like Wobenzym-N and lumbrokinase to dissolve biofilm,
supplements like NAC, Co-Q10, resveratrol, DHEA, weekly B-12 injections, lots and lots of probiotics.
To get to sleep, I take generic benadrl and .5mg of clonazepam. I take the LDN as soon as I start feeling drowsy.
I never went on IV abx, too scared of the gallbladder thing. Just orals.
KEEP THE FAITH. This can be beaten. I am getting there, and wanted all to know. I know how much despair there is among Lymies. =Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Yeah for you!!!! That's so wonderful!! Thanks so much for sharing!!
What changes, specifically, did you see when you added the low-dose Naltrexone (besides libido)?
thanks!
Posts: 1155 | From Southeast | Registered: Oct 2005
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
What kind of resveratrol were you on?
Just curious
Congrats btw
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Yay Paulie! wishing you continued improvement!
Posts: 3975 | From usa | Registered: Aug 2007
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
congrats- love to read the success stories..wish more would post
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Thank you, thank you, thank you for sharing. It is what I needed today. I will add you to my board of printed out success stories.
Hugs, Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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When I first started Lo-dose naltrexone, I started with 3 mg. at night. Frankly, it made me a little more depressed initially, with some sleep issues. A I ramped up to 4.5 mg. and within a few weeks, it "kicked-in". I also noticed ALOT of dreaming.
Canefan17: I used various brands of resveratrol, and I didn't take it every day.
To my mind, the most important factors were: EXERCISE. I did strength training rather than cardio. I believe cardio may be too draining for Lymies. Also ENZYMES, especially Wobenzym-N. I would pulse it, gradually increasing dose to 6 or 8 tablets a day. It would make me herx bad, because I believe it does dissolve biofilm allowing the abx to penetrate the colonies of borrelia deep in your tissues.
A little baby aspirin to further thin the blood helps too. I would stop the enzymes after a few weeks when the herx became unbearable. I would restart again maybe after a month.
Diet is important too. I started eating alot of brown rice, whole grains, veggies, alot of Healthy Choice this and Lean Cuisine that. But, I was NOT FANATICAL about it. I did switch to xylitol as a sweetener for coffee,
had 2 or 3 cups a day instead of the 10 - 12 I used to drink. I have a real sweet tooth, so I would occasionally BINGE on my favorite sweets, but would try to make up for it with exercise fewer calories for a few days following the binge.
I was about 20 - 30 lbs overweight, but have now lost weight and have turned alot of flab into muscle. Actually going to the gym right now, cuz I had pizza and cake and ice cream yesterday!!!!!
Today back to brown rice and Lean Cuisine, which I actually like now.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Good for you!!!
Welcome to the club
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Hope you continue on the upswing...
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Congratulations!
Good to hear a positive outcome every so often.
It is easy to underestimate the effect of LDN, but a strong immune system probably helps as much as any other thing we can do.
I hope you are well far into the future.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Awesome to hear! How long had you had LD before being diagnosed? I feel that exercise is key as well
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Great NEWS .. So awesome. So glad to hear. Its always so great to hear a WONDERFUL STORY!!
I am so glad for you!!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
IckyTicky: I went undiagnosed for at least 15 years, possibly much longer. Standard Lyme tests were always negative. I basically diagnosed myself after doing research on the internet. Needless to say, I am very ANGRY at all the "mainstream" docs I saw who assured me I did not have Lyme. Finally went to a LLMD and got a positive result on IGENEX Lyme test.
Mainstream medicine's response to this epidemic is a public health disaster. But the truth will come out, and you will be hearing about it every night on the evening news like in the early days of the AIDS epidemic.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
LOVE THIS!!! So happy for you and so appreciate people like you posting this kind of stuff. PS--on libido, I wondered where mine went. Low dose naltrexone you say?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
PaulieinCT Thanks so much for the positive. So are you saying oral ABX is what got you well? About how long were you on them in what combos? I am still struggling with what I believe is relapsing Lyme symptoms and hope to find a doctor to treat me with oral abx. I was on IV once for 4 weeks and won't do that again unless I am deathly ill, as the IV interferes with my living my life actively just as much as the other health problems I seem to experience when off abx. I was hoping to hear that orals worked for someone. My thinking is that I just was not on the orals either long enough or the correct ones in the correct combination (actually I never took a combination, only doxy and z-max on seperate occasions).
Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010
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I've been on oral antibiotics for almost two years now, Always in combination. Now I'm on penicillin and biaxin. Others I've taken in combo are azithromycin, omnicef, ceftin, doxy, and maybe others. Also on plaquenil 3 days/wk and fluconazole 4 days/week. And low-dose naltrexone at night. Plus supplements and lots of probiotics and enzymes to dissolve biofilm.
I had planned to do a course of IV Rocephin, but I heard too many horror stories about gallbladder issues and infections so I chickened out.
I am not 100% yet, but so much improved that I can do heavy workouts at the gym 3 days/week.
I just this morning noticed another secondary Lyme rash on my arm. I've had them periodically during treatment. It means I still have an active infection, but also means the organism is on the run. I will continue to treat until all symptoms are gone.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Low-dose naltrexone is being used now in a number of conditions like MS, Lyme, etc. Supposed to stimulate the immune system. The libido part was a happy side effect!
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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I've been on IV rocephin for 8 mos, no gall bladder issues, and no infections.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Congratulations to you!!
So glad to hear you are soooo much better!!!!
-------------------- 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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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Wonderful. Happy to hear you are on the road to recovery.
I've heard others report also that exercise is a very critical component to healing (anyone remember One-Speed-Greg?)
Have you lost weight?
I'm curious from a "fat-burning" respect.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Paulie were you treated for bartonella too?
Posts: 3528 | From US | Registered: Apr 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
What dosage of LDN do you have? I just got 4.5 mg from my Doc and used Gideon's in NYC as the pharmacy as they compound it and it is better. Haven't tried it yet.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Marnie: I have lost a few lbs., but mostly I've turned some flab into muscle working out.
CD57: I never tested positive for bartonella, only Lyme, ehrlichia, and babesia. Curious, what are the symptoms of bart?
bcb1200: I also get my LDN from Gideon's, 4.5 mg.
-Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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