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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Tue Dec 11th, 2007 09:43 |
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We understand your desire to get a grip on cutaneous candidiasis due to your previous history of extensive fungal infection. Please review The use of antifungals.
See I need to have a diagnostic procedure/surgery/dental work. What should I know?
Good luck........
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davbrkr
Member in Phase 3
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Posted: Wed Dec 19th, 2007 04:28 |
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[15 days] · Ben Only] || [4 mo, 26 days] · PhzI· Ben: 40 mg Q6H~Mino: 100 mg/2 days
Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg)
Worst Symptoms: Scores >=3 only to save space.
- 4 | Bowel Problems [CONSTIPATION, diarrhea]
- 3 | FATIGUE
- 4 | FUNGAL INFECTION
- 3 | INSOMNIA
- 3 | Numbness [Arms, HANDS]
- 3 | Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM]
- 3 | Sensitivity [LIGHT, sound, floaters, blurred vision]
- 3 | TINNITUS)
After 7-10 days of relatively stable IP, 4 days ago, I increased my Minocycline to 100 mg. So far so good! I had a rhizotomy (spinal nerve block) on Dec 12 in Oklahoma City (OKC) where my back-Doctor and fellow Th1-er’ practices chronic pain medicine, so I’m ambulatory again without a walker. While there, Dr. E had blood drawn for a 25-D test so I should have results to post soon. Although Dr. E is not my primary Th1 doctor, he has had more experience doing D-metabolite tests. Actually, because he works in a hospital, lab techs with experience handling samples correctly did the blood draw. Dr. E and Dr. K, my local LLD, know one another well, exchange medical services, and share information.
Overall, this is the best week since starting the Marshall Protocol, and that despite a day of travel to OKC from Phoenix with much more-than-usual sun exposure. Similarly, yesterday was the single best day in more than 5 months, while today has reverted to the usual “tolerable funk”. By now I know I have a long way to go to be well, but every lull in the storm is welcome. Even a temporary ray of sunshine in the perpetual blizzard that has defined my life for decades is welcome. I think I am getting better, VERY SLOWLY.
By coincidence - OR NOT - my chronic fungal infection was at its absolute minimum in months on the same “best” overall day. Makes be wonder about the “fungal” component of my overall disease state?? Do I have a fungal infection piggybacking on a TH1 disease-compromised immune system, or is the “fungi” really just a CWD bacterium resident in the skin?
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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VEZ R.N.
Health Professional
| Joined: | Fri May 19th, 2006 |
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Posted: Wed Dec 19th, 2007 15:00 |
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Thank you for the update Dave.
Good to hear you came through it all and have had some positive relief from pain. Nice you are able to get up and around again for sure. The progress we see along the way is so helpful in propelling us forward, glad to hear it.
You have now seen evidence that the fungal symptoms are tied to the CWD organisms causing your Th1 inflammatory disease. Dr. Marshall wrote: "Maybe what was diagnosed as a 'yeast problem' is actually a problem caused by "those tiny, tiny bacteria, smaller even than yeast spores, called Cell Wall Deficient or L-forms.
This link may help clarify, SEE: the section on Candida: Will the Marshall Protocol treat co-infections?
CWD organisms have the capability to change to preserve life as their environment changes.
Keep up the good work and hang in there.
Best Regards, VEZ
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davbrkr
Member in Phase 3
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Posted: Fri Dec 21st, 2007 08:38 |
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As of today, I have been on Phase I (Benirar Only / Benicar+Minocycline) for 5 months and 13 days. I took my 4th, 100 mg dose of Minocycline (Phase I) yesterday, and so far have noticed no IP differences between 75 mg and 100 mg dosing.
I started the MP as a therapeutic probe without the benefit of initial D-metabolite tests. My physician talked to me by phone this evening, and said my LabCorp D-25 test came back at 20. Unfortunately, he has a contract for all testing with LabCorp. Perhaps there is a stealth Vitamin-D source in my diet, or my sunlight exposure is still too high (hard to imagine)! At any rate I’ve got lots of ground to cover to get to 12.
Many of my most serious IP symptoms are neurological: seizures, panic attacks, RSD burning, brain fog, fatigue. I’ve had temporary “brownouts” episodes in the past so severe that I could not read or dial a telephone. I remember reading somewhere that the phase II antibiotic is more helpful than Minocycline for neurological symptoms.
SHOULD I:
- Stay with Phase I waiting 3 days between doses looking for increased IP?
- Stay with Phase I until my 25-D drops to something closer to 12?
- Go on to Phase II after requesting and completing the P2 questionnaire in hopes that neurological symptoms may be better addressed?
- Am I correct in assuming that with 25-D levels still this high, that I’ve got lots of IP pain ahead before I see any significant, sustained relief?
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Fri Dec 21st, 2007 09:09 |
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Before you move to phase 2, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms.
You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology.
You will have several antibiotic options as you move forward. The antibiotic that targets the brain and nerves may not be your best option because the immunopathology could be fierce.
I think you can afford to stay in phase one a couple more weeks to do some valuable experimenting.
Any lab can do a 25-D correctly, it's only 1,25-D that needs special handling. Stores of D will gradually drop and you don't need to wait for that to proceed.
The second and third phase guidelines are available to study participants upon request at completion of phase one. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Let us know how it goes...........
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davbrkr
Member in Phase 3
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Posted: Sun Dec 30th, 2007 04:04 |
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[15 days] · Ben Only] || [5 mo, 7 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days
Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg)
Worst Symptoms: Scores >=3 only to save space.
- 4 | BACK PAIN
- 3 | Bowel Problems [CONSTIPATION, diarrhea]
- 4 | Cognitive: [MEMORY, Fuzzy thinking, Confusion]
- 3 | FATIGUE
- 4 | FUNGAL INFECTION
- 3 | Neurological (0ther): [Mood swings, ANGER, Irritability, Depression]
- 4 | PANIC ATTACKS
- 4 | Paresthesia: [BURNING, ITCHING, Electrical]
- 3 | Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM]
- 3 | Sensitivity [LIGHT, sound, floaters, blurred vision]
- 3 | TINNITUS)
I went through three, 3-days Minocycline cycles looking for more IP, and noticed neither an increase in IP, nor any particular pattern as compared to dosing every-other-day. 4 days ago was the lowest single IP day I have had since starting the MP. I was unable to find enough IP in this test period to try more frequent Minocycline dosing as a palliative measure, so still no noticeable difference between 75 & 100 mg of Minocycline. I have used extra Benicar several times during high IP episodes in the past, and it has usually helped.
Yesterday, I went back to the 2-day Minocycline, 100 mg cycle. The Last 18 hours makes this the WORST day in 2 months or more with (1) mild panic attacks and (2) RSD burning. Neither has been intolerable - just persistent, and uncomfortable. I’ve had either one or the other off-and-on for most of the last 18 hours except during 5 hours of sleep. Waiting a little longer before going on to Phase II was probably good advice. I’m about an hour away from my regular Benicar dosing. Even thought my symptoms have not reached intolerable, if they persist, I’ll try Minocycline every 12 hrs later in the evening to see if it gives palliative relief.
Noted
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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davbrkr
Member in Phase 3
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Posted: Sun Jan 6th, 2008 05:24 |
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[15 days] · Ben Only] || [5 mo, 14 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days
Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg)
Worst Symptoms: Scores >=3 only to save space.
- 3 | BACK PAIN
- 5 | Cognitive: [MEMORY, Fuzzy thinking, Confusion]
- 5 | FATIGUE
- 3 | FUNGAL INFECTION
- 4 | INSOMNIA
- 3 | Myalgia/Muscle Pain: [SHOULDERS, hips, legs]
- 4 | Neurological (0ther): [Mood swings, ANGER, Irritability, Depression]
- 8 | PANIC ATTACKS
- 8 | Paresthesia: [BURNING, ITCHING, Electrical]
- 4 | Sensitivity [LIGHT, sound, floaters, blurred vision]
- 3 | TINNITUS)
Discussion: To summarize current event I will use an itemized format.
- There was no noticeable IP change when going from 75 mg Mino to 100 mg. Each prior dosing step-up increased IP.
2. Since starting the MP, Dec 26, 2007 was the date of my lowest IP. Yesterday, just 10 days later, was the highest/worst!
- In the last 2+ weeks I have tried 3-day, 100 mg-Minocycline dosing (9 days total) to induce more IP after several weeks with minimal problems on a 2-day Mino cycle. There was NO INCREASED IP, and NO DISCERNABLE PATTERN!
- After returning to the 2-day Mino cycle for 2 days, I had a completely unexpected, moderately serious IP episode - burning and panic attacks primarily. With enough IP to experiment, I tried 50 mg of Minocycline every 12 hrs for 48 hrs to suppress my immune system, and subsequently the IP response. NO NOTICABLE HELP, and IP has remained elevated to the present.
- At this point I have struck out on 3-day dosing to increase IP, and lower-dose, higher frequency dosing to suppress IP. Neither seemed to have a noticeable affect.
- Extra Benicar has been consistently helpful in suppressing IP.
- For the last 10 days IP levels have steadily increased - moderate but unrelenting RSD type burning on the face, neck, arms, and hands. The burning pattern has changed from intermittent - 1-4 hours at a time - to non-stop day and night. Panic attacks until last night have been mild, but much more frequent than usual.
- Because I’ve been generally sicker that usual (flu-like symptoms, fatigue, brain-fog, etc.), I have spent 16-18 hrs per day in bed recently. Our bedroom is the darkest room in the house, and by staying covered with at least a sheet, for the last 10 days I have had the lowest light exposure since starting the MP.
- Bed rest helps. Without a caregiver, times like this would be daunting.
- With tolerable, mild to moderate burning, I have still been able to sleep 4-5 hours per night with the help of 1-350 mg of Soma, 1 mg of Alprazoloam, AND a glass of Sake or wine late at night when the meds alone don’t work.
- When I don’t sleep well, my back pain elevates quickly. Studies show that sleep deprivation can exacerbate chronic back pain as much as trauma.
- Last night the wheels came off! Shortly after taking my Soma and Alprazoloam, I had (a) one of the 3-4 most severe panic attacks in my life coincident with (b) the second worst RSD burning attack accompanied ever (c) along by uncontrollable shaking. The shaking is a NEW symptom!
- Alprazoloam usually rescues me from panic attacks, and as the panic attack abated over a period of 30 minutes, so did the shaking. The RSD pain diminished, but did not stop completely.
- I have been walking ½ to ¾ miles per day after sunset for the past week.
- I still swim every day after dinner.
- I wear my sunglasses even after dark, both indoors and out.
- Other symptoms new or re-emergent. Pain in 4, upper and lower, front teeth as in Charcot-Marie syndrome (6 on a scale of 10), and paresthesia, electrical pain in the left foot (new symptom) when walking (8 on a scale of 10) at a 20-year old Morton’s Neuroma surgery site.
- MY 25-D level was 20 approximately 3 weeks ago. This may be pertinent!?
- I have not tried reducing my Minocycline dosage yet.
Summary and questions:
- The Marshall Protocol is the only treatment plan that makes complete sense in every respect. I find it utterly remarkable that most other protocols, although acknowledging the existence of CWD bacteria forms, ignore them completely.
- I have been sick longer than most MP’er so I had no expectations of a "quick fix". Few have spent 10 years bedridden. I anticipate progressing slower than most.
- I expect the process to be long and difficult.
- Since starting the MP, my symptoms have improved consistently in a non-linear, step-wise fashion exactly as anticipated.
- Everything that has happened with the MP to date has been well explained, and as expected. There have been no surprises.
- Neither stretching out my Minocycline dosing or taking smaller doses more frequently had the desired IP-effect. Because my IP symptoms have risen sharply in the last 10 days while my diet, sun-exposure, Benicar, and Minocycline dose remained relatively the same; I do understand this recent IP flare up.
- I am probably far too early in the protocol to have fibrotic tissue dissolution releasing pockets of CWDB.
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- CAN 25-D LEVELS DROP QUICKLY IN AS LITTLE AS 10-14 DAYS? Keep in mind that my sunlight exposure has been the lowest over the past two weeks of any comparable time interval since starting the MP.
- IS IT POSSIBLE THAT MY D-25 LEVELS HAVE DROPPED BELOW “20” RATHER QUICKLY ENABLING AN INVIGORATED IMMUNE SYSTEM TO ATTACK MORE AND/OR DIFFERENT CWD BACTERIA THAN PREVIOUSLY??
Any ideas would be appreciated.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Sun Jan 6th, 2008 12:24 |
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One reason for your recent symptom flare could be a reduction in 25-D allowing your immne system to function better.
The recommended first step when symptoms are intolerable is to take an extra oral 40mg Benicar immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster
If intolerable symptom/s persist, increase oral Benicar to every three or fours hours around the clock (set an alarm if needed). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose.
It's good to know that adjusting mino is not effective to reduce immunopathology. Don't hesitate to increase Benicar as needed.
Keep up the good work...........
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davbrkr
Member in Phase 3
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Posted: Mon Jan 14th, 2008 03:48 |
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[15 days] · Ben Only] || [5 mo, 22 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days
Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg)
Worst Symptoms: Scores >=3 only to save space.
- 3 | BACK PAIN
- 3 | Cognitive: [MEMORY, Fuzzy thinking, Confusion]
- 3 | Neurological (0ther): [Mood swings, ANGER, Irritability, Depression]
- 3 | Paresthesia: [BURNING, ITCHING, Electrical]
- 3 | TINNITUS)
Discussion:
As difficult as the pervious IP-posting period was, the past week was comparatively easy. I’ve retained the recent practice of staying in bed until 1-2 pm in a very dark bedroom reading and watching TV, and that seems to help. This week I blocked the master bathroom, and home-office windows with cardboard so one end of our home is very dark. I live like a bat at one end of the house in the dark, while my wife “lives in the light” at the other end. I’ve increased my after-sunset walking to 1 ½ miles per day for the past 2 days, and have started taking detox saunas after my swim each evening.
I will see my local doctor (Doctor “K”) next week, and would like to have him order the meds for Phase II even though you may want me to wait a while longer before starting. It’s a long drive to his office in the Arizona sunshine, and after my next office visit, I don’t plan to see him again for 5-6 weeks. If I’m ready to start Phase II in the interim, I’ll have the meds, and can avoid another long trip to the doctor.
I don’t know which of the MP-Phase II prescription meds to ask my doctor for. The Modified Phase II antibiotics with shorter dosing cycles are appealing since backing out is easier IF THINGS DON’T GO WELL. Since my most serious symptoms are neurological (seizure, panic attacks, RSD burning, irritability, depression, etc), that’s a consideration in choosing the right antibiotic, so here are some questions:
- Which PII antibiotic should I have my doctor prescribe?
- Because I’ve been sick for so long, and my worst symptoms are neurological, should I start Phase II meds at even lower than recommended doses?
- Should I get capsules or tablets? I’ve checked with my pharmacist. He has both.
- How does one cut a 250 mg tablet in 1/8’s, or for that matter, divide capsule contents into such small fractions?
Thanks as always for your help.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Mon Jan 14th, 2008 15:30 |
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Thanks for letting us know you are doing well on 75mg mino...... It isn't necessary to live like a "bat". 30 Lux is more like romantic mood lighting. 
I'm not sure if you mentioned a sauna before.....be sure it isn't infrared. BTW, Dr. Marshall has stated there is no need for any sort of detox.
Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
We like to see folks go from phase one to phase two if at all possible.
Keep up the good work.................
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davbrkr
Member in Phase 3
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Posted: Mon Jan 14th, 2008 22:26 |
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I have been on 100 mg of Mino since Dec 14. Sorry for the confusion. I use a template with my meds and symptoms to start regular posts, and had not updated the Mino dosage to 100 mg. 100 mg produced little change in overall IP from 75 mg. 72 hr. dosing to increase IP DID NOT increase IP. 12 hr dosing with 50 mg DID NOT decrease IP. I have requested the MP questionnaire, and will see my Doctor next Thursday. Sounds like the questionnaire will let me know if I'm ready for phase II, and tell me what Phase II antiobiotic he should prescrible.
Noted
Moderator Note: Your phase 2 posts are in your progress report in the phase 2/3 forum for continuity. Please continue to post in phase 2/3 forum as the appropriate forum. Thank you.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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davbrkr
Member in Phase 3
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Posted: Thu Feb 26th, 2009 03:51 |
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Alumni Update:
[19 months, 18 days], ~ Phase 3, (Benicar Q6H + 20mg sublingual as needed)
Worst Symptoms: Scores >=3 only to save space. 4 | FUNGAL INFECTION
4 | Paresthesia: [BURNING, ITCHING, Electrical]
3 | Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM]
3 | TINNITUS) Discussion:
I’ve increased Minocycline to 75 mg so I’m at ¾ of the full dose of both “M” and “C”. Because my IP is nominal, I will ramp “M” to the recommended 100 mgs within the next two weeks as suggested. My severely neurologically impaired daughter has done very well for the first 8 days on the MP. All is well.
After hundreds of hours reading the threads of other MP-cohort members, I would like to report an unexpected positive change that I’ve experience that I haven’t seen on other progress reports.
Phoenix, AZ has the largest municipal park in the US - 17,000 acres with miles of hiking trails. Before starting the MP, on rare occasions when I could walk, I would go to South Mt. Park, and walk one of the shortest, easiest trails. Because of my poor health, I was never unable to walk often enough to get into shape. The first small hill on my trail of choice was no more than 50-60 vertical feet over a 150-yard ascent. Not much of a hill! To forego complete cardio-respiratory failure, gasping for breath, I would typically stop 3-4 times before reaching the “summit”. My head knew my effort was pathetic, but it was the best my body could manage. Others routinely walked past me some with that: “I wonder if he is OK" look? My first 8 months on the MP were difficult. 11-12 months after starting, on a day when I felt better than usual, I drove to the park, and took my usual micro walk, but this time, though totally out of condition, I walked easily to the top of my nemesis hill without stopping. Looking back down the hill from the top, I mused: “where did that come from?”
In the same vein, I have an old “total gym” at home which I use whenever I feel well enough. Because every joint and muscle protested, I was never able to raise the incline above the half-way, “for ladies-only” mark. Because it’s so hot in Arizona in the summer, and because the exercise machine is outdoors in a “screened” room, I hadn’t used it for 8 months or more. A week ago, on a better than usual day, I dusted off the total gym. Starting at my old half-an-incline, I went through my usual series of exercises finding them unexplainably easy. I ended up at the highest incline - a place I had never been before. I’m almost 69 years old, and in terrible physical condition after years of illness. The only thing I’ve done consistently in the past 19+ months is the Marshall Protocol, yet for reasons I could never have anticipated, my heart, lungs, circulatory system, and muscle strength are all much improved without the benefit of a regular exercise program.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Dr Trevor Marshall
Research Team
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Posted: Thu Feb 26th, 2009 04:34 |
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davbrkr
Member in Phase 3
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Posted: Fri Mar 13th, 2009 01:19 |
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[20 mo, 5 dys], ~ P3, (Q6H + 20mg sublingual as needed)
Worst Symptoms: Scores >=3 only to save space.4 | BACK PAIN
3 | FATIGUE
3 | FUNGAL INFECTION
3 | Numbness [Arms, HANDS]
6 | Paresthesia: [BURNING, ITCHING, Electrical]
3 | Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM]
3 | TINNITUS) Discussion:
The return of Back Pain in my symptom summary is the direct result of carelessness on my part. Because I’ve experienced so little back pain for the past 2 months or more, after 54 years of torture, I did something, without thinking, I shouldn’t have. Now I’m paying the price. However, compared to past transgressions, this time the consequences, though uncomfortable, are slowly abating - spontaneously - something that didn’t happen in the past. Before the MP, once “down” I couldn’t recover without medical intervention, and then relief was fleeting.
To some extent, I’m living with the same problem of PERSPECTIVE that other recovering TH1-sufferers have. Since I wasn’t well at 20, 30, 40, 50, 60, 68, I have no “wellness frame of reference” - not even a remote concept of how a well person my age should feel. When I look into my past for a glimpse back to a time when I was well, the debris field stretches so far, I cannot see the other side. I think I shall never sort this out, so I will have to settle for knowing the difference between “better” and “not”, and I am getting “better”.
When I was 24, and had my first teaching job, there was a mountain to the east of the campus. Every day I drove into the parking lot, I looked at the top and vowed that one day, when I got well, I would run to the top. I never did either! But maybe I will walk there yet, and although that may not be a home run over the center field fence, it’s at least a triple, with a chance to steal home plate back from a disease “I never had”. Thanks to all who have helped me come so far.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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