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JGP
Member in Phase 3
| Joined: | Sat Oct 21st, 2006 |
| Location: | Arizona USA |
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Posted: Sat Mar 17th, 2007 20:09 |
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Progress report for JGP - Phase 1 - First 3 Months.
- Benicar (40mg - 6qh for 78 days)
- Minocycline (100mg - 48qod for 3.5 weeks)
- Probiotic (Daily)
- No other meds or supplements
(Gradually increased the minocycline dosage from 25mg every 48 hours to 100mg every 48 hours as outlined in the MP Phase 1 documentation.)
I did not start to feel the affect of the protocol until the minocycline was increased to 50mg 48qh and have experienced no unusual photosensitivity but do try to wear my NoIR’s as much as possible.
The major symptoms that I have experienced at this point, have been low blood pressure (68/40 on average), general fatigue, muscle tiredness in the neck, jaw and shoulders, which appears to be more noticeable about 24 hours into the minocycline dose, mild ill feeling that comes and goes and a sore right leg and foot. I have to be very careful when getting up out of bed as I tend to black out. Once I get up and move around for a few minutes I can go about my day with little problem. If I have to do any physical activity for any length of time I wear out quickly. Some days it is difficult to concentrate on technical information at work but is manageable
Approximately 1/2 week into the 100mg minocycline dosage, I began to experience (and still experience) pain in my lower right leg and foot. When I go to bed the foot feels like it is going to sleep and I usually wake up in pain and with numb foot.  The only way to relieve the pain is to get out of bed and walk around for a while. Once I get back in bed the symptoms return within a few minutes. During the day while I am up and around I have little to no pain in the leg or foot although the foot and ankle feel somewhat stiff most of the time. It feels like a circulation problem.
I am concerned about the leg condition since it has now been persistent for about 3 weeks. It has had a negative effect on my quality of sleep, which has never been all that good.
Q: Has anybody experienced a similar leg and foot symptom?
Q: Do you have any suggestions to lesson the symptoms?
Aspirin and Tylenol don’t seem to work.
Q: Should the leg/foot numbness and pain be cause for concern?
The MP is not easy but I do feel that it is working for me at this point.
On the upside  , it has lessoned the symptoms of the lung sarcoid; primarily coughing and sensitivity to perfumes and colognes. This is a big plus since I work in close proximity with people who can’t live without the stuff.
On the downside  , as expected, a number of other unpleasant symptoms like low blood pressure, increased fatigue, leg pain, muscle pain and general malaise have developed.
My pulmonary specialist has been supportive of the Marshall Protocol from the onset. For that I am grateful. It was one less battle that did not need to be fought. My out of pocket cost for the medication is about $250 a month. As expected, Medco will not pay for the full Benicar prescription.
I believe that I will be ready to progress to Phase 2 within a few weeks and will be requesting the Phase 2 questionnaire shortly.
JGP 
Last edited on Sat Mar 17th, 2007 20:29 by JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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Aussie Barb
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Posted: Sun Mar 18th, 2007 22:38 |
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JGP
Thank you for posting..
Many Members report numbness as a symptom due to Immunopathology. Good to see you are taking care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself.
The aim or the key is for you to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of your meds dosing and schedule as suited individually to you within the guidelines.
If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
: Quercetin: may be helpful now you are established on MP.
Noting Nov-06, 25-D = 16ng/ml. It is recommended that you retest your 25D to make sure it is near or below the therapeutic level of 12ng/ml. There is no need to retest the more expensive 1,25-D.. How often should I test D levels? What are the target numbers?
Suggest sending for questionnaire to fill. see this FAQ Where can I find phase two and three? for information re sending an email for the Questionnaire to fill and return so that you have plenty of time to read and discuss the Information with Staff before going to your Dr.
When you are given feedback and access to the Information in the Phase 2/3 Forum -
We then encourage you to begin a new progress report there in that forum to discuss the Staff recommendations as to which meds and dosing are most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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JGP
Member in Phase 3
| Joined: | Sat Oct 21st, 2006 |
| Location: | Arizona USA |
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Posted: Sat May 12th, 2007 17:56 |
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Phase 1 Continued
Total Days on Phase 1: 118 days
Benicar: 40MG E6H - 1am, 7am, 1pm, 7pm
Myrac: 100mg E48H – 3pm
NoIR’s:
The night time pain in the right foot and lower leg which started around day 50 (coinciding with the increase to 100mg of Minocycline) ended by day 90. I now am able to sleep through the night. I found little or no relief from the Quercetin, Tylenol, Aspirin, etc. for the foot\leg pain. One extra 20 MG dose of Benicar was taken coinciding with day 90 and the resolution of the foot\leg pain.
Continue to experience numbness and loss of some upward movement and strength in the right foot which has caused me to limp.
Continue to experience muscle fatigue in shoulders, neck and jaw, irritability and mild light sensitivity which occurs approximately 24 hours into each 48 hour cycle. Physical activity is limited due to reduced stamina. Symptoms generally last about 24 hours. Still have to be careful when rising to prevent fainting. Blood pressure average is around 78/46.
Continue to experience irritation in both lungs but coughing and irritation to perfumes is substantially reduced. Lung irritation level varies from day to day. No change in the lung CT scan done prior to beginning of Phase 1 and that taken around Day 80 of Phase 1.
Time to progress to Phase 2.
JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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JGP
Member in Phase 3
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Posted: Sun Sep 9th, 2007 00:00 |
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Progress Report for Phase 2
Total Days in Phase 1: 118
Total Days in Phase 2: 117
Total Days on MP: 235
Total out of pocket cost to date for medication and NOIRs: $2515
Total out of pocket cost to date for doctor visit co-pay: $210
Right leg pain described in phase 1 summary is all but gone other than a slight limp caused by a weak foot.
Left foot and lower leg developed similar pain and weakness as was experienced in the right leg during phase one. The pain in the left leg has very slowly been resolving but still is persistent. Nothing other than getting up and walking around to increase circulation will lessen the pain in the foot. I now have a persistent limp in both legs due to weak foot muscles.
General overall fatigue continues 24-7. I pretty much feel like it is a battle to get through each day. My day starts around 6am and I am spent by about 1pm.
Heavy fatigue and general feeling of being ill occurs routinely about 3 days into the Z dose.
I usually have to nap on this day. Fatigue from the minocycline is less than that of the Z dose and tends to occur within 12 hours and gradually lessens over time. Basically every other day is a fatigued day.
No stamina to do normal routines, like yard work or house work. The yard looks great this summer. 
Irritation in the lungs remains about the same with no improvement beyond that achieved by using benicar only during phase 1. (i.e. less sensitivity to perfumes etc).
My lung function test is normal.
Sensitivity to light varies but does not seem to be too much of a problem.
Blood pressure remains on average around 7040.
I suspended antibiotics for 10 days about 2 weeks ago and felt somewhat better. The pain in the feet lifted and energy level improved but physical stamina was less than what I had hoped. I attribute this to the Benicar and the low blood pressure of 7040.
I have lost about 10 pounds and some muscle mass.
I have had unsolicited comments about my physical appearance from coworkers who are unaware of what I am dealing with and by family members. Comments like, you look gaunt, skeletal, worn out looking, pale, and the shine has gone from your eyes.
Mental focus has diminished and both energy and drive to accomplish tasks at work are down. I guess I am basically getting worn out. It would be great to be able to take a few months off work and get through this a bit more.
Overall impression with the conclusion of phase 2 is one of cautious optimism. I am sure the treatment is doing something as I get ill from the medications as described on the MP site. The question is, is it really doing any good? I still am waiting for that break through moment when I realize that I feel much better and that my lungs no longer are irritated. I look forward to, and hope for, the day when I get my health and life back.
I have the Phase 3 medications in hand and will be starting them shortly.
JGP
Last edited on Sun Sep 9th, 2007 00:04 by JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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JGP
Member in Phase 3
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Posted: Sun Sep 9th, 2007 00:21 |
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Progress Report for Phase 2
Total Days in Phase 1: 118
Total Days in Phase 2: 117
Total Days on MP: 235
Total out of pocket cost to date for medication and NOIRs: $2515
Total out of pocket cost to date for doctor visit co-pay: $210
Right leg pain described in phase 1 summary is all but gone other than a slight limp caused by a weak foot.
Left foot and lower leg developed similar pain and weakness as was experienced in the right leg during phase one. The pain in the left leg has very slowly been resolving but still is persistent. Nothing other than getting up and walking around to increase circulation will lessen the pain in the foot. I now have a persistent limp in both legs due to weak foot muscles.
General overall fatigue continues 24-7. I pretty much feel like it is a battle to get through each day. My day starts around 6am and I am spent by about 1pm.
Heavy fatigue and general feeling of being ill occurs routinely about 3 days into the Z dose.
I usually have to nap on this day. Fatigue from the minocycline is less than that of the Z dose and tends to occur within 12 hours and gradually lessens over time. Basically every other day is a fatigued day.
No stamina to do normal routines, like yard work or house work. The yard looks great this summer.
Irritation in the lungs remains about the same with no improvement beyond that achieved by using benicar only during phase 1. (i.e. less sensitivity to perfumes etc).
My lung function test is normal.
Sensitivity to light varies but does not seem to be too much of a problem.
Blood pressure remains on average around 70/40.
I suspended antibiotics for 10 days about 2 weeks ago and felt somewhat better. The pain in the feet lifted and energy level improved but physical stamina was less than what I had hoped. I attribute this to the Benicar and the low blood pressure of 7040.
I have lost about 10 pounds and some muscle mass.
I have had unsolicited comments about my physical appearance from coworkers who are unaware of what I am dealing with and by family members. Comments like, you look gaunt, skeletal, worn out looking, pale, and the shine has gone from your eyes.
Mental focus has diminished and both energy and drive to accomplish tasks at work are down. I guess I am basically getting worn out. It would be great to be able to take a few months off work and get through this a bit more.
Overall impression with the conclusion of phase 2 is one of cautious optimism. I am sure the treatment is doing something as I get ill from the medications as described on the MP site. The question is, is it really doing any good? I still am waiting for that break through moment when I realize that I feel much better and that my lungs no longer are irritated. I look forward to, and hope for, the day when I get my health and life back.
I have the Phase 3 medications in hand and will be starting them shortly.
JGP
Last edited on Sun Sep 9th, 2007 00:23 by JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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JGP
Member in Phase 3
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Posted: Wed May 14th, 2008 23:01 |
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Phase 3 Progress Report
Days in Phase 3: 249
Total days on MP: 485
At Maximum level of Phase 3 Medication
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Break from antibiotics during phase 3: 14 days (May 1 – May 14)
Break from antibiotics during phase 3: 28 days (Nov 11 - Dec 11)
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Total Days in Phase 1: 118 (Jan 6 – May 12)
Total Days in Phase 2: 117 (May 13 – Sept 8)
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25-D Tests Results
Mar-07: (11.1ng/ml)
Feb 08: (11 ng/ml)
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Total out of pocket cost:
Medication and NOIRs: $4447.74
Doctor visit co-pay: $300
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Lungs:
Irritation in the lungs remains about the same with no improvement beyond that achieved by using Benicar only during phase 1. (i.e. less sensitivity to perfumes etc).
Pulmonary Function Test taken on January 9, 2008 was remains normal.
Cough persists.
Dizziness:
Dizziness has significantly been reduced. I no longer black out if I stand up too quick. I still am very carful about it though, I never know when it might strike.
Feet and Legs:
Pain in both feet and lower legs resolved by (Phase 3 - Day 108) (Total days MP 344)
Mild numbness persists on the top of both feet around the big toe area.
Limp has resolved.
Eyesight
No sarcoid in the eyes.
Floaters, blurry vision varies from day to day – I guess that is normal for my age. (44)
Photosensitivity:
Minimal – Rarely need to use the NOIRS.
I do become extremely photosensitive if I have a lot of physical exertion. My eyesight tends to “white out”. Everything becomes very washed. I suspect that is from the low blood pressure caused by the Benicar. Blood pressure average 7040.
Energy:
Improving very slowly.
Mental attitude:
Slightly depressed most of the time.
Reaction to medication:
Although not as strong as in the beginning, I still get a reaction to the Phase 3 antibiotics, especially around day 3-6 into the Z dose. I find that periodically, I have to suspend the antibiotics for a period of time to feel better. From (Nov 11, 2008 - Dec 11, 2008) I had to take a break from all antibiotics, while continuing the Benicar, because I felt like I was getting saturated. I felt sick 100% of the time. The normal cycle of taking the medications, feeling ill for a day and then recovering prior to the next dosage, no longer seemed to occur. I began to wonder if I was going to have to stop the program MP all together. It took me about 18 days during this break before I started to feel better. After the extended break, I continued the antibiotics and the sickness produced was much more tolerable. Recently, during May 2008, I took another14 day break off of the antibiotics for similar reasons.
Overall appraisal:
I have been carefully following the MP instructions.
By (Phase 3 - Day 187) (Total days MP 423) my stamina and energy seemed to make a noticeable improvement. During this time, for a period of about 15 days, I felt like I was starting to kick this illness. I was able to take care of a lot of deferred maintenance items around the house and yard, without becoming dizzy or fatigued. Lung irritation and cough were very minimal. The mental cloud seemed to be lifting. After about the 15th day, the lung irritation and cough returned. Energy and mental sharpness have regressed from this high point, but still are improved.
I have mixed feelings about my progress at this point. This is a long and arduous treatment. I had hoped by this point the lungs irritation, especially the cough, would have started to show some signs of resolution. Some days I feel like things are improving, and then back down I go. I am glad the pain in the legs has resolved along with the associated limp. I go to bed feeling unwell and I wake up and go through each day feeling unwell. Some days are better than others, but I am always reminded that I am sick.I still am hopeful that one day I will suddenly realize that I no longer feel sick and that my lungs no longer bother me. I look forward to no longer having to take the Benicar. I realize it is critical to the MP, but I feel like it is sucking the life out of me. It is kind of a catch 22 situation.
I plan to continue with the MP. I currently have in hand, prescriptions for the other suggested phase 3 antibiotics and plan to start to rotate them into the medication schedule shortly.
Thanks to Dr. Marshall and staff for your dedication and support. Other than the MP there was no other viable option offered to help attempt recovery from this disease.
JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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JGP
Member in Phase 3
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Posted: Wed Jul 2nd, 2008 20:50 |
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Phase 3, Day 297
Total days on MP: 533
At Maximum level of Phase 3 Medication
Lungs:
Cough persists.
Cough seems to be worsening at times.
Right Lung irritation is felt most of the time.
Dizziness:
Dizziness has increased when rising or bending down to pick something up.
Feet and Legs:
No change since last post.
Arms and Hands
Numbness on pinky and ring finger on both hands regularly occurs during sleep at night.
Eyesight
No change since last post.
Photosensitivity:
Mild to moderate.
Energy:
Less energy.
Many more days requiring an afternoon nap.
Mental attitude:
Slightly depressed most of the time.
Increased mental fog.
Reaction to medication:
I have been carefully following the MP instructions.
From June 14 to June 19, I experienced what seemed to be a marked improvement in symptoms. Lungs irritation dropped way off, energy was up. In general I felt good and thought things might finally be improving. At this point I was about ready to begin the rotation of the B+D into the medication schedule, but decided to hold off as I was beginning to notice and increased level of sickness after taking the M+C+Z combo. I am now experiencing a relapse of symptoms similar that when began the MP. Increased fatigue, sore shoulder muscles, increased right lung irritation, and overall generally run down.
Overall appraisal:
The protocol is an expensive, grueling and lonely journey with an uncertain outcome.
It would be encouraging to see more statistics or at least entries by individuals who have completed the protocol and no longer need to take the MP medications. If the MP is truly a cure for Sarcoidosis, I would expect that many (at least a few) would be reporting at this point, that they are cured and are done with the medications. Hopefully, one day very soon, I will be one of those people.
I am now in my 18th month of diligently following the MP instructions, with little to no lasting resolution of lung symptoms as well as experiencing new symptoms that the treatment has brought on. I plan to keep up the fight for at least another 18 months or longer depending on progress.
I do appreciate the work and efforts of Dr. Marshall and staff as well as the full cooperation of my Pulmonologist. This is a cruel illness and the medical establishment apparently has nothing to offer in the way of a cure, except steroids or waiting it out.
The Marshall Protocol does offer hope where the medical establishment offers none.
JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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jrfoutin
Research Team
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Posted: Wed Jul 2nd, 2008 23:52 |
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JGP,
Time is relative to a point of perspective. At my perspective of 3 years on the MP in August, 18mos on the MP is just scratching the surface of future potential.
I also found angst has a tendency to lift only as one passes certain goal posts (by the very nature of immunopathology, individualized) that as a general rule, things take time. From my limited and anecdotal perspective, the level of disease prior to MP, and to some degree MP management, seems to vary the goal post distance more than anything else.
Put up in a place where it's easy to see
The cryptic admonishment "TTT."
When you feel how depressingly slowly you climb,
It's well to remember that Things Take Time.
-- Piet Hein
Artificially imposed time expectations are a source of restless strife that can actually hinder the process of getting well. On the MP, patience is more than a virtue, it serves as a progress and survival tactic, and describes the better half of endurance.
Meg Mangin's excellent links on your similar post are worthy of frequent review. I hope all take an opportunity to read more than the title of each link so they can internalize the important details when time seems long or difficult:
There is no doubt the MP is a long and rough road for many folks. Please see:
How long does the MP take?
Why does the MP take so long?
What degree of healing is possible with the MP?
Improvement in pulmonary function tests
Best to you JGP--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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JGP
Member in Phase 3
| Joined: | Sat Oct 21st, 2006 |
| Location: | Arizona USA |
| Posts: | 22 |
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Posted: Sat Aug 16th, 2008 16:54 |
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Alumni Update
Phase 3, Day 341
Total days on MP: 577
Current Medication Level
At Maximum level of Phase 3 Medication for many months
Lungs:
Cough persists. Some days it seems like it is improving but always returns.
Dizziness:
Dizziness has increased when rising or bending down to pick something up.
Feet and Legs:
Numb over the big toes
Arms and Hands
Intermittent tingling in the hands.
Eyesight
Floaters
Photosensitivity
Mild to moderate.
Energy:
Low energy.
Many more days requiring an afternoon nap.
Mental attitude:
Tired of being sick 24/7.
After many months of tolerable immunopathology at the maximum dose of MP medications, my immunopathology has greatly intesifed over the past month or so. I am thinking I might have to cut back on all levels of antibiotics to find the right tolerance level. What a journey.
Dead Man Walking
JGP
Last edited on Sat Aug 16th, 2008 17:16 by JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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JGP
Member in Phase 3
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Posted: Fri Oct 2nd, 2009 16:57 |
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Phase 3, Day 760
Total days on MP: 1001
Current Medication Level
Benicar: 40 mg every 6 hours
Clindamyacin: 0mg
Myrac: 25 mg every other day
Phase 3 meds: lowest dose
Out of pocket cost incurred thus far to implement MP - $9200 +
The following brief recap of my history and experience using the Marshal Protocol:
2003 – Began to feel tired all the time.
2005 – Started to cough a lot when I was at work when the air handlers kicked on. Cough would stop after I was home for a few hours – thought it was and allergy to something at my place of work.
2006 – Cough persistent, health rapidly deteriorating – Diagnosed with Sarcoidosis via bronchoscopy and CT.
Jan 2007 – Started Marshall Protocol
Sept 2007 – Started Phase 3 medications.
May 2008 – Max dose of Phase 3 medications reached – I was very unwell but was tolerating the full dose.
Nov 2008 – IP really kicked in. Had to stop all medications, Except Benicar – The IP was way too strong.
Jan 2009 – Re-Started Protocol at the lowest Phase 1 dose – IP very strong at lower levels of medication
Jan 2009 to Present –
I have not been able to progress past 25mg of mino and lowest dose of phase 3 meds.
After about 3 - 10 day cycles of the lowest dose of phase 3 meds + the 25mg of mino every other day, the IP really kicks in and I have to stop the lowest dose of phase 3 meds for about 20 – 30 days.
I have had periods of thinking I am improving as my lung irritation and coughing would drop away. Unfortunately, this is always short lived and the cough returns.
I have had several occurrences of very swollen glands in the neck, throat and arm pit area. Each time this last approximately a week before the swelling drops off. The swollen glands never quite go away.
Lungs:
Last CT on 1-29-09 – Compared to CT done in 2006, showed that the right upper lobe has improved. Other areas of right and left lung remain stable.
Cough persists - although not as bad as in the beginning 
Dizziness:
Dizziness increases with the lowest dosage of phase 3 meds.
Feet and Legs:
None to very mild over the big toes
Arms and Hands
Tingling in the hands increase with the lowest dosage of phase 3 meds.
Eyesight:
Floaters
Photosensitivity:
Mild to moderate. Eyesight tends to white out with little physical activity.
Energy:
Low energy. Zero stamina.
Mental attitude:
Depressed most of the time. Especially as the phase 3 meds kick in around days 3-10.
Summary:
I am approaching the 3 year mark on the MP and thought I would have been over the worst of it by now.
Based on the medication level I am able to tolerate and still be able to function well enough to hold a job, and how incredibly lousy I feel 24-7, I am losing hope that I will ever completely heal from this disease.
Looks like life is on indefinite hold.
Although it has not turned out to be the cure I had hoped for, I am grateful for the MP. No other option was, or appears to be available for treatment.
I often wonder how sick I would be now if I had never started the MP. If nothing else, I feel it has slowed the progression of this cruel and hideous disease.
I plan to press on with the MP a while longer.
JGP
Last edited on Fri Oct 2nd, 2009 17:14 by JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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marion villa
Member in Phase 3
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Posted: Fri Oct 2nd, 2009 22:44 |
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JGP escribió: .
Based on the medication level I am able to tolerate and still be able to function well enough to hold a job, and how incredibly lousy I feel 24-7, I am losing hope that I will ever completely heal from this disease.
Looks like life is on indefinite hold.
Although it has not turned out to be the cure I had hoped for, I am grateful for the MP. No other option was, or appears to be available for treatment.
I often wonder how sick I would be now if I had never started the MP. If nothing else, I feel it has slowed the progression of this cruel and hideous disease.
JGP
I really undrestand what you mean!!
It looks it will take forever to get rid of this fatigue, and start living again.
I havent lost my faith in the Mp because I have seen progress indeed, but it is challenging to feel sick and to be uncappable to make plans
I wish you get better soon( and so myself).
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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Dr Trevor Marshall
Research Team
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Posted: Fri Oct 2nd, 2009 22:55 |
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I would drop back the antibiotics to the level at which you are as comfortable as possible (zero antibiotics, if necessary). Even though recovery might take a little longer that way, the journey will be more enjoyable
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