On a recent two week meditation retreat, which is the 8th one I have been on since sick over the last four years, I think I got to a new level of recovery.
After three days of silence and meditation, my pain level went from @ 8 (1-10 scale) to a 2-3. I titrated off morphine with no withdrawl, and was able to hike and do yoga for the first time in four years.
For those of you who don't know me, at this time last year I was bedridden, using wheelchairs to get around if it was more than a block, was very neurocognitive (could not read a sentence and make sense out of it), neuropsychiatric (having weird panic attacks and atypical depressions), and shaking like a person with advanced parkinson's.
This is the fourth "phase" I have noticed in 20 months tx.
The first was worsening due to ketek and ceftin. The next was improvement after 1 year abx orals and mepron (which just about killed my GI tract). The third was IV rocephin -- cleared the neuro cog and neuropsych stuff away almost completely. And the fourth has been ozone therapy, bee sting therapy, and the cumulative effect of mindfulness meditation and lovingkindness meditation.
I am able to work part time, take each day slowly, and can see that I might get up to 80% of my functioning back.
So if anyone is interested, my protocol looks a lot like Dr. Klinghardt's, much of which is posted on Better Health Guy, Scott's site.
A summary is: Antibiotics - orals Getting mercury out of fillings Change of diet -- see Burrascano, plus significantly less meat and sugar Chlorella (for binding biotoxins for elimination from system) Mepron (treating babesia) Colonics (for detox from biotoxins) IV Rocephin with biaxin Ozone therapy (ozone mixed with blood and reinjected) Bee sting therapy (currently up to 9 stings 3 times a week) Mindfulness, meditation retreats Ardent wish to get well Support of family and friends No Work for two years
So, again, I had / have a severe case. Not as bad as some of our ALS, neuro mimicking lyme friends, but still really bad.
The next step I think is to continue the tx noted above, and to add more easy yoga, walking, and seeing what my doctors think.
It looks like I have hypothyroidism. Apparently it is common in lyme. All I know is my temperature is 3 degrees too low, in the 95's, in the am and pm, and normal in middle of day. I thought my morning and night time fatigue were due still to brain swelling, but now I think it might be due to thyroid problems. We will see.
My daughter is not doing so well, but she is really only into @ 5 months of regular abx treatment, and does not regularly do the other self care things, particularly the simple one -- chlorella. We pray for her.
Just sharing a very dramatic and positive turn. Ifigure I have another couple of years to go. I wonder what I am going to do about cyst busters -- flagyl and tindi have been almost impossible to tolerate. I want to seriously try grapefruit seed extract.
Hooray. Maybe better health is possible!
Posted by Lymetoo (Member # 743) on :
Wow, Jeff! You really have come a long way! Congratulations!
Your list of things you're doing sound very good and very reasonable. I've done quite a few of those too. NOT the bee stings or ozone though!
You have a lot to be thankful for! Posted by char (Member # 8315) on :
Hi Jeff,
Thank you for the update and I am so happy for you! The specifics on what you have done are clear and helpful.
My adolescent daughter was resistant to supplements, changing eating habits, etc. for quite awhile after starting treatment.
This has steadily improved as she has gotten her germ load down. We had to choose our battles bigtime and like you, getting abx in the most important at first. We left it at that. (especially since like you; I am sick also)
Happily, she is now doing very well taking supplements and beginning to make better eating and sleeping choices on her own; and pushing herself to move and exercise. She was just wasn't up to pushing self. Hopes and prayers for your daughter. She is lucky to have you and good medical care.
Again, yah for you and your hard-won progress!
Best Wishes,
Char
Posted by Jill E. (Member # 9121) on :
Hi Jeff,
I was just thinking about you, knowing you were on your retreat at some point in January, but not sure of the dates.
I am THRILLED to read this wonderful, positive, encouraging update. I am very happy for you, and thank you for providing inspiration to us.
I'm in the process of ramping up very slowly on Rifampin. The side effects are challenging, especially with trying to think clearly while working! But I'm doing a lot of prayer and positive thinking and appreciate the success you are having by combining mind/body approaches.
Hopefully we will have a chance to talk soon.
I hope your daughter will seek your expertise and embrace some of the supportive measures. I would think at her age she wants to fit in with her friends and not have to go through such a different life.
But I even had problems getting my dad to comply with some of his Lyme treatment last year after he was bitten, so we can run into resistance at any age!
By the way, I developed hypothyroidism many years ago but medication was miraculous and kept me stable until Lyme. Now I have to adjust my thyroid medication frequently because of Lyme. So I think you will feel better on thyroid supplementation but don't be discouraged if you have to go through a little trial and error with the dosage.
Take care and welcome back! Jill
Posted by Parisa (Member # 10526) on :
Mary Shomon has a great book about hypothyrodism. For many people, it's very important to make sure you get a thyroid prep that has T3 in addition to the T4. The meds without it will raise your thyroid hormone levels but you'll still feel horrible. Armours thyroid has it.
Many "traditional" doctors will not prescribe it initially. But if another doctor prescribes it for you and you do well on it, then the "traditional" doctors will prescribe it.
The key is to get started on it from the beginning. Hope this is one more thing that will help you get on the right track.
Posted by JeffM (Member # 8919) on :
Thanks everyone. I will look into Parisa when I have my appt. next week. My temperature is 3 degrees lower in the a.m. and at nite. Weird. Answers questions about why I am tired then.
I truly don't know what to do about my daughter. She is difficult. Currently angry and depressed and pushes all my buttons. Her two doctors -- GOOD doctors, compassionate -- want to drop her because she misses appointments, is non compliant, a pain in the a**.
I can't worry about her, and have to keep my psychological (and sometimes physical) distance because it makes my stress go up. I am practicing acceptance.
She wants help and support, and then she rejects it.
I wish there was a teenage forum on here. She would respond to that.
Posted by lou (Member # 81) on :
I think there are at least two teenage forums. Details have been posted here before. Think one of them is run by a lyme group in PA.
Posted by trails (Member # 1620) on :
congrats to YOU!
and thank you for posting and letting us know in detail. fabulous news!
would you pm me about where you take your retreats? I am interested in meditation retreats, but have found many of them too rigid for me and my daily medical needs.
Posted by Melanie Reber (Member # 3707) on :
Good morning Jeff,
I am so pleased that you are doing well, and have come back to share your progress with us!
Good, no, GREAT news is always so welcome here!
Would you mind copying your story to the "Success Stories" post above so that we can keep it for all to read and gain through your hard fought wisdom?
This is such wonderful news since I remember how sick you were.
Back to work part time. One day it might be full time.
Posted by JeffM (Member # 8919) on :
Thanks for the info Melanie. Now I will see if I can even get her to go on it.
I added my partial success story to the list. I think I did it right.
Man, I am a little scared of a relapse.
And no, hopeful, i will never go back to work full time. It would ruin my pension (permanent disability) LOL
And also my doc says: no running around, no working full time, take it easy or you will relapse. For a little family practice doctor in San Diego, do you know how many lyme patients he has? 18 and counting. Half of them are neurological and in wheelchairs. He freaked out last year when I sat in his office with my dad and brother, shaking all over as though i had advanced parkinsons, and with a temperature of 92. Of course, the neurologist said "It isn't neurological". Well, what is it then? "Psychological." NOPE. I am a psychologist, and this is not psychological.
But now he's happy. For the time being. I really feel for doctors. They put a smile on their face, encourage us, treat us . . . and some get better and some don't.
I can't rave enough about the bee sting therapy. Although it hurts (the stings stay in 15 minutes while they are still squirming around, ouch) I think they are doing something amazing to my immune system and maybe even to the spirochetes.
Well, I am carrying on, glad I can function a bit better, cooking GREAT vegetarian meals for my family (kids hate it, so what else is new), and still looking at another couple years of treatment.
When I get the PICC out, I'm gonna start a rehab exercise program, and I hope with thyroid medicine I'll lose some of this 20-30 lbs I've gained in the last few years. Fingers crossed.
And tomorrow morning . . . yoga!
Posted by hopeful123 (Member # 3244) on :
jeffm,
that's cool about the part-time. i'm just happy to see you improve!
if you could p.m. me with the name of the doctor in san diego, i'd appreciate it. my daughter, who lives in l.a. needs a new llmd since she can't get answers with her old llmd. she's very interested in getting info about pregnancy and lyme. if he has eighteen patients, maybe he can give her some answers. she is no longer sick, but it hasn't been that long that she's been non-symptomatic.
i know that the doctor in northern ca. is no longer taking new patients.
thanks in advance.
Posted by sizzled (Member # 1357) on :
Wow! What a wonderful post!
You are truly an inspiration to those who need to push on!
Thank-you. It gives me energy to read positive thoughts.
Meditation. Helps me 'balance'.
Healing thoughts!
Posted by Aniek (Member # 5374) on :
Jeff,
Have you ever had your iodine levels tested? Low iodine can add to hypothyroidism and adrenal fatigue.
I don't remember the lab my doctor had me used, but it included an iodine challenge, where you collect urine, take iodine, then catch your urine for 24 hours.
Mine was low and I've had a huge increase in energy since supplementing with Iodoral.
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