 |
| Author | Post |
|---|
DNStog
Moderator
|
Posted: Sat Dec 31st, 2005 09:17 |
|
Excerpts from my Phase III post:
Wrote an update on Dec 26th, but erased it accidentally...most likely brain fog!
After mildly herxing through Christmas holidays (exhausted Christmas Day night after family left) changed to new abx last night. Some mild herxing, almost unnoticeable so far... had the usual deep and continuous sleep which seems to always follow after abx dose AND had more noticeable Hyperthermia after abx change.
Thought - or should say - hoped my sinus allergies had gone away, but a quick spritz of a wonderful smelling perfume, received for Christmas from daughter's beau caused a two hour sneezing attack. She's been sworn to secrecy not to tell him. Will try it again in a few weeks by different method of application.
I just passed my one year anniversary on the MP and physically feel so much better this year than last. Mental outlook is much improved. Eyes are so much better...no more fear of going blind. Can look forward to helping daughter plan her wedding in two years.
Before MP, my energy and strength levels were so low. Walking had become very difficult because of stiff feet with granulomas in soles, sciatic-type nerve pain in left leg, Paraesthesia in feet and legs, and the beginnings of atrophy in feet. Those symptoms are all gone now. Raynaud's Phenomena in my right arm hasn't bothered me for at least a month. Brain fog no longer prevalent daily... comes and goes for brief periods. Ability to get words out better, but still have brief periods my tongue gets twisted or the words disappear. I just realized that dizziness and lightheadedness have not bothered me for a couple of weeks.  Still frequent, but short lived stuffy nose. Mild Tinnitus still here, carb cravings come and go, nails still brittle and dry. Light sensativity almost gone, ocular pain and pressure gone, eye dryness mild and infrequent. All granulomas, bruising and pain in underside of upper arms have been gone for over a year after ten years of twice annually cycles. Sarc lesions on legs much improved, most have gone, seldom have any itching. Sleep patterns are fairly normal and I feel very rested during the day...first time in over ten years! Periodontal disease is gone after eight years. Neck range and flexibility much improved and aches are less prevalent after 20 plus years. No more morning hoarseness after thirty years. Digestive system in better shape, less bloating. No more catching or stabbing type pain in left side of chest (lung).
Today I changed the bed linens in a few minutes and felt fine during and after. Last year, it would take me over an hour to change them, having to rest in between sheet applications, cramping legs, sweating profusely, and leaving me exhausted the rest of the day. 
Yes, life will be much better in 2006 and my family and I are already planning a summer vacation. May be calling one or two of you MPers when we visit your country, just to wish you well. 
Wishing all MPers gentle herxing and more healing in 2006!
Donna, still cruising ~~~~~~~on Phase III 
Last edited on Sat Dec 31st, 2005 09:30 by DNStog
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
BARNEY
Moderator
|
Posted: Sat Dec 31st, 2005 15:08 |
|
Donna,
Isn't it wonderful what MP has done for us this year alone? I can hardly wait until 1/1/07 to see what 2 yrs has done for me.
Happy New Year!!!!!!!!!!!!! and lots of goooood cruizing!!
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
|
ShrnHml
Member in Phase 2/3
|
Posted: Sun Jan 1st, 2006 21:48 |
|
Donna.....thanks for the inspiration.
Now I know that the hoarseness I have experienced for years is most likely from Th1 and that it, too, will go away.
Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
|
Ebeth
Member in Phase 3
|
Posted: Sat Apr 8th, 2006 19:40 |
|
Donna,
Thank you for mentioning your improvements, particulary in changing the bed linens. I have only just started the MP (2 months). I have had such problems changing the sheets on my bed, and I think my husband thinks I am crazy. It makes my heart pound furiously and just wears me out. It's these little things that are so validating when I read about how other people have had similar problems. And even better to read that the problem has now been resolved for you! That is encouraging as well. ~Elizabeth
Last edited on Sun Apr 9th, 2006 00:07 by Ebeth
____________________
Sarcoidosis/liver hypothyroid 125D49 Ph1Feb06 Ph2Jun06 Ph3Jan07 break Jul-Oct07 surg Mino only Feb-Jun08 2nd surg Ph2Aug08 Ph3 Jan09 Armour thyroid 25D7(5/09)
|
DNStog
Moderator
|
Posted: Sat Jul 1st, 2006 01:25 |
|
Just an update from a Phase IIIer to encourage all of you MP newbies and wannabees. All of the below noticable herx symptoms are VERY MILD, particularly compared to the early stages of MP and disease. After feeling pretty good, not quite perfect, during the trip to LAX, it is now time to finish out the killing of the beasties. Hmmm, should that be referred to as the "Silence of the Bugs"?
Well two days ago it was back to the best of the Phase III trio to see what I can further squeeze out of it . I am already feeling the effects of revisiting this trio. Sad stories made me cry (briefly) yesterday and today. Tinnitus is a little louder; short span of dizziness when getting up; insomnia (Benedryl worked), slight nasal drainage to back of throat, mild lightheadedness, puffy feet, strange feeling in right arm at bedtime (Raynaud's Phen arm), moments of stuffy nose, crackling in neck, chest burn, mouth slightly drools when eating (how nice ), minutes of feeling generally yucky. Guess that last listed herx is symptomatic of me having feel good days more often. 
I realized this week that stiff knees have been with me for a long time...not sure when it started and I only notice it when descending steps. Brand new herx, inside of left big toe feels like a bug stinging it for a minute or two, pulsing. Some mild bad carb cravings last night, managed to steer myself away.
My daughter and I will be leaving this weekend for another week at the beach. She is in her college roommate and friend from childhood's wedding. I dread the drive, but look forward to the festivities while visiting friends. Of course, I will be MP covered and appropriately Noired for travel.
Wishing you well quickly and gently!
Donna still cruising ____/]__________
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
DNStog
Moderator
|
Posted: Wed Oct 4th, 2006 20:46 |
|
Time for an update addressed to all MP newbies...the MP is GREAT...it works...it works, slow, but it definitely works! You are headed in the right direction for getting well.
Currently I am nearing the end of Phase III, started Phase I December 7, 2004, so will be having a two year anniversary in two months. Here's an out take of my current Phase III report:
Today was my yearly physical with my PCP who is not my MP doctor. He told me that I am doing really well...EKG great, BP normal, reflexes are normal - left leg flatlined in 2004 - retinas look great, unable to find granulomas in arm. He was quite happy to see all the signs of my progress/wellness.
I told him I still had some neuro herx sxs which he asked me to list. He was intrigued with them and all of my improvements and initiated a discussion of the MP.
The medical community's push towards Vitamin D has him quite alarmed and he specifically expressed his deep concern over Osteoporosis Specialists pushing therapeutic Vitamin D. I told him that I am planning to purchase and donate several copies of the book that contain the study of Vitamin D, done by ARF researchers, to Emory University Medical Center in Atlanta, University of Alabama at Birmingham Medical School and possible others. In the meantime, I will be sending him a copy of the study and told him that our MP support group members, researchers and staff have been emailing, writing, calling and meeting with various groups trying to correct the thinking of Vitamin D pushers.
Because I have a history of high Choleterol and Triglycerides and quit taking Lipitor several months before starting the MP due to crippling pain in my legs, we also had a discussion of statin products. If the MP doesn't normalize the readings of my HDL, LDL, etc, he wants me to start another type, non statin, of Cholesterol drug when I have stopped all MP drugs. (edit: see Mod reply below) We talked about a recent story on statin products potentially inducing Lupus and Pneumonia in some patients. I told him about my 90 year old dad's recent bout of Giant Cell Vasculitis, diagnosis of Lupus, Spinal Stenosis and changes in Thyroid function tests after 12 months of using Lipitor, Tricor and Cumaden (per recent Atril Fibulation symptoms & high choles. test results). The relationship between inflammatory diseases and the side effects of statin products seemed to become clear to him. All in all a great appointment.
Herx update: Recent LOUD Tinnitus was a low murmur this morning leading me to believe it WILL go away while I'm taking the MP meds. (Since I didn't notice it before the MP, I believed it would not resolve until after the meds were stopped...silly me!)
Wishing all of you well, gently...Donna, still cruising~~~~~/]~~~~~
December 2006:
my skin has improved dramatically on the MP, but it still has a ways to go...the tiny pimples/blocked pores on upper arms seem to have vacated the area without a forwarding address, so far. Still two out of an original six white looking bumps on face remain.
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Thu Oct 5th, 2006 03:31 |
|
Thanks for that wonderfully positive report. Good work educating your doctor!
You wrote, "If the MP doesn't normalize the readings of my HDL, LDL, etc, he wants me to start another type, non statin, of Cholesterol drug when I have stopped all MP drugs."
Since abnormal lipids are a sign of continued inflammation, you will not want to stop the MP until this is resolved. See
Should I take medication to improve my cholesterol levels?
|
DNStog
Moderator
|
Posted: Thu Oct 5th, 2006 19:12 |
|
Gotcha, Meg!
My Cholesterol readings have been bad for over 30 years when a previous doctor first started testing them. But I can document Sarc related symptoms prior to that...just less pervasive and etchy...so doctor had no idea what caused them.
Thanks for the alert...Donna
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
Freddie Ash
Member in Phase 3
|
Posted: Thu Oct 5th, 2006 19:52 |
|
HI DONNA
This is Fred in WV. Thanks for all the fine info about your doctor's visit. I hope mine goes as well tomorrow. I will be in a battle to get back on the MP again. I have some things to show my doctor. I have made a list of things that has gotten worse since I have been off the Marshall Protocol.
This great to see so many being cured with the Marshall Protocol.
Remember, we are all in this together and I am pulling for us.
Your friend in sarcoidosis
Freddie
____________________
Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
|
DNStog
Moderator
|
Posted: Wed Dec 27th, 2006 04:42 |
|
Tomorrow is my second anniversary on the MP. Yea!!!! Never thought I would be lucky enough to find a compassionate and learned doctor who was willing to prescribe this miracle cure. I am truly thankful for the progress that I've made. Still some to go...but I'm so much closer to good health than I was in Dec. of 2004!
Thank you Trevor, Meg, Aussie Barb, Belinda, P Bear, Lottie, Joyce, Greg, Janet, Carole and all other researchers and staff members for developing this path to restored health and assisting me along the way.
Wishing all of you and MP club members and your families a joyous and healthy 2007, following the MP path, gently, of course.
{{HUGS}} to all...Donna
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
DNStog
Moderator
|
Posted: Sat Aug 4th, 2007 22:51 |
|
While I usually wait until an anniversary to give my yearly progress report, I've noticed so many improvements lately that I've decided to post earlier.
Sun exposure: Thursday I met my dad for lunch and took him to a new state of the art skateboard/inline skating park near our home. While he sat in the car and watched, I stood next to him in the sun, wearing short sleeves and zinced sunscreen, for about 15 minutes. It was HOT and the sky was cloudless. What a surprise! I had no reaction to the sun at all. Prior to MPing, I would become overheated quickly, sweat profusely, feel dizzy, lose much of my strength and energy and have to sit down. This would occur within minutes of exposure. Indirect sun exposure would take me longer to react but produced the same reactions.
Weight: In the past year I have been able to lose 35 pounds of 75 ugly ones put on before starting the MP. Because I never took Prednisone for Sarc, I have been very surprised and grateful for this improvement. It will be such a pleasure to see my PCP at this year's physical. He looked at me in disbelief when I told him I believed my Hypathalmus was compromised by Sarc causing my metabolism and hunger center to be out of order.
Mental/Emotional: Irritability/Anger: Much better, even while dosing with the "C" monster. Panic and anxiety are not as bothersome and I no longer feel overwhelmed to the point of being frozen when I need to tend to the house - repairs, etc.
Sleep and Insomnia: For many, many, many years, I could never get enough sleep...never felt refreshed after 8, 10 or even 12 hours of continuous sleep. Now I feel refreshed after six to eight hours. A few months prior to the MP, I began to have insomnia and could not sleep for more than two hours straight. The insomnia continued to be problematic until April of 2006 during Phase III. At least I was able to communicate via this forum with lots of other insomniacs in the late evening/early morning hours.
Skin: My complexion is the clearest and smoothest it has ever been... no acne or cysts, no swelling around my eyes, and facial edema gone. In recent months, I have had several friends and one complete stranger tell me what a beautiful complexion I have...and that's without any make-up. The first time or two I figured my aging friends needed to have their eyeglass prescriptions updated; however, a stranger telling me the same convinced me that I must be looking a lot better. Sadly, the MP has not ridded me of the deeper wrinkles around the mouth and nose, but those on my forehead and around my eyes are much less noticeable. I still have a number of Sarc lesions on my legs, but many are gone. Two large lesions on the trunk of my body were gently peeled off a few weeks ago.
Eyes: As a Uveitis patient with lots of pre MP eye symptoms - pulsing occular pressure, burning, dryness, and pain, they continue to improve. When I dropped one of the antibiotics as I rotated through the combos, my eyes started to misbehave again. Now that I've added it back, it is starting to clean up the hanger-on eye buggies.
Arthritis: Arthritic pain in ankles, wrists, fingers, and knees gone.
Neuropathy: Handwriting appears to be normal, even under duress. Sciatic nerve pain is still gone (left during Benicar only phase), parathesia still gone, Raynaud's Phenomenom seldom acts up. Reflexes in ankles and knees back to a healthy person's normal. Pre-MP my left leg and ankle wouldn't move when tapped.
Lymph nodes and granulomas: I can still feel a few "rocks" in my right upper arm (probably due to effect of radiation), but even they have shrunk. The large granuloma (granny) is gone. Those in my feet disappeared during the Benicar only phase and have since stayed away.
Teeth and Gums: Last year my dentist told me they both look great and they still do.
Fingernails: Currently they are starting to grow without peeling and splitting as much. Not totally well, but definitely getting there.
Hair: While I sometimes have itchy and crusty lesions on my scalp, for the most part, all is quiet. My hair fell out daily for about six months - per shower drain - but now appears to be firmly attached.
Renal System: While I've never been diagnosed with kidney or bladder impairment and tests have always been normal, I had to get up several times a night to relieve myself. Not a problem now...looks like it was also Sarc related and NOT from aging.
Energy Improvements: 2006 vs 2007: When we recently prepared to go on another beach vacation, I was able to plan, prepare, and pack (with time off for other obligations) over a period of a few days. Last year, it took well over a week to do the same, because of brain fog, low levels of energy and having to work a little, rest a lot.
In Spring of '06, a 15 minute shopping spree was all that I could muster at a covered mall. Since her recent engagement, my daughter and I have been shopping for her trusseau (sp?) and visiting various wedding vendors - shopping for hours at a time for several days in a row going in and out of the sun. After the sprees, I did not have to go home to rest and nap. I can pretty much go all day long without any side effects. I feel GREAT!!!
Lungs: Last year's chest x-ray was totally clear...no sign of the one lung granuloma I've had for several years. Shortness of breath is seldom experienced, almost never.
Neck Pain: Forty four years ago, a fender bender left me with a whiplash. It frequently reminded me of it's existence with pain and stiffness. Benicar only alleviated these symptoms, until a few months ago. After an antibiotic combo change, all pain and stiffness has since disappeared. IMO, the neck bugs are now resting in peace...hopefully, rotting in Hades.
Hoarseness: For forty years, I woke up to hoarseness every morning. It would go away after a couple of hours and my throat never hurt. During the Benicar only phase, the Hoarseness left for good...no sign of it for almost three years.
Allergies: This past spring, for the first time in my life, I didn't have any sneezing, sniffling, coughing, sore throats, headaches or chest tightening during the highest pollen count in Atlanta's history. (It made the national news.) AND this was without taking any medicine...no antihistimines, no OTC or steroid nasal sprays, and no aspirins.
Lower Back Pain: For years, my lower back would hurt while washing dishes, loading the dishwasher and vaccuming. The pain was not excruciating, but definitely uncomfortable, frequently warranting Ibuprofen, etc. When it was time to retire my old upright vaccum cleaner, I purchased one that was self-propelled. This helped the lower back discomfort, but didn't totally alleviate it.
I was always under the impression that the pain was related to muscles rather than the spine, but never went to a doctor to have it checked. The pain would go away whenever I discontinued what I was doing.
For about six months now, I've been able to do all activities without any grumblings from my back.
I still have almost constant Tinnitus, which sounded off after starting the MP. Fever blisters still showing up, but not as frequently. High Cholesterol and Triglycerides have been with me for 40+ years; however, I have high hopes that this year's testing will reveal the numbers are lower. Since this has been my longest symptom, next to energy and sleep problems, should the numbers still test too high, I won't be disappointed. If the medical profession keeps lowering the numbers for a normal reading (a big Pharma plot, IMHO), I may not ever reach this goal. 
I will be forever grateful and indebted to Dr. Marshall and the original guina pig staff for their brillance and perserverence in developing this amazing cure. The road is long, difficult, but correct. I'm so glad I took this fork in the road to wellness.
Wishing all of you well, gently, of course! Donna, still cruising ~~~/]*~~~~
Last edited on Sun Aug 5th, 2007 01:23 by DNStog
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
Ebeth
Member in Phase 3
|
Posted: Mon Aug 6th, 2007 05:37 |
|
Excellent news, Donna! Thank you so much for sharing. I am glad for you and happy to read such an inspiring report. You deserve to feel good <smile> .
~Elizabeth
____________________
Sarcoidosis/liver hypothyroid 125D49 Ph1Feb06 Ph2Jun06 Ph3Jan07 break Jul-Oct07 surg Mino only Feb-Jun08 2nd surg Ph2Aug08 Ph3 Jan09 Armour thyroid 25D7(5/09)
|
Aunt Diana
Moderator
|
Posted: Mon Aug 6th, 2007 15:55 |
|
Thank you Donna for such an ispirational report.....it's wonderful.
My husband is now seriously considering starting the MP....I am ecstatic...once I'm well enough to handle the shopping he starts the Benicar. He's already wearing Noirs.
Thank God of this protocol and for the wonderful people on it and, of course, for the team that put this all together. I sure hope a Nobel prize is in the cards for Dr. Marshall.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
|
kmg
Member
|
Posted: Sun Aug 26th, 2007 23:09 |
|
| Thanks for your progress report... it helps to encourage the rest of us... which is much needed. Best wishes for a full recovery for you!
____________________
Sarc lungs/skin. Started Phase I and then lost my nerve. Working on modifying my lifestyle so can successfully restart the MP. Don't know when, but when I begin, I want to make sure I'm ready 100% and that I don't back out.
|
DNStog
Moderator
|
Posted: Tue Jan 8th, 2008 01:16 |
|
After trying all of the recommended ways of dividing capsules, it was only recently that I devised an effective way for myself... perhaps it can help other MPers. Brain fog, hand tremors, and out of focus eyesight turned out to be partly responsible for my inability to divide capsules effectively. After three years on the MP, these symptoms still come around, but are no longer constant or as intense and generally do not occur at exactly the same time any more. The following method is what I use:
First I open the empty capsule and set it aside and then I pull the Mino, etc. capsule apart over a tiny cardboard box, for example an earrings gift box. Then as I start to partially pour the Mino/etc. capusule into the empty one, I hold them both halves above the box.
The result is that any escaping powder/micro beads fall into the tiny box. This makes it very easy to gently shake the powder into one corner of the box which can then be used as a funnel for emptying the powder reminants into the apppropriate capsule. I tap down both 1/2's of the capsules on the box or another flat surface which helps me to visually estimate how much is in each capsule. This method has worked better for me than any other I've tried.
Wishing all of you well, gently, of course.. Donna still cruising ~~~~/]~~~
Last edited on Tue Jan 8th, 2008 01:17 by DNStog
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
DNStog
Moderator
|
Posted: Sun May 18th, 2008 01:38 |
|
PH3: 3Yr and 138 days: Beni 40mg q5h/5/6/8 plus abx trio: No extra Beni or Mino needed in several weeks
75mcg Syn 24h - Hypothyroidism, 150mg Wellbutrin 24h - Depression non MP related; 5mg Lexapro Q1D, Milk Thistle 175mg Q2D, Quercetin 500mg Q1D; Claritin Q1D; 2.5 Zinc 5mg Q1D, 1000 L-Lysine Q1D, Vita C + Bioflavanoids 500mg Q3D fever blisters Sun exposure - 30 minutes several times in the past week no precautions taken
Tinnitus (0-2), Fever Blisters (3-0) see "Surgery with --"; weight lost five lbs prior to surgery, gained 10 lbs day after surgery, lost 12 pounds week after surgery, up 4 pounds now (Weight fluctuations started after commencing new abx.) Granulomas in upper right arm still dissolving and almost gone.
Plan of action: At the end of June, I will be starting the very last possible antibiotic combo. Unless some old or new IPs show up, I will return to Benicar and Mino or maybe Benicar and ___ (see weight) only for the next 3+ years adding other antibiotics full strength every few months or so. Hopefully my 33 yr hx of high cholesterol will start to come within a normal range...next test Nov. 08 and will submit report at that time.
Recent Improvements noted:
EXERCISE: Three weeks ago I started doing floor exercises. Amazed to find that a) I was able to do them after four years of taking it easy, three years of limited walking (to/from doctor and store); b) body was limber; c) joint/tendon flexibility is best it's been in 20 plus years; d) didn't tire out or become weak. Nails and eyebrows: growing
Complexion: great and beautiful per doctor during surgical assessment. (Note: I am 60 years old with a 40 yr hx of acne plus 60 years of skin allergies.)
Surgery with ---: Eleven days ago, I underwent elective surgery (been waiting for immune system to be healthy to have this done) and am currently healing quite nicely. During the week of surgery I was put on 300mg of Clindamycin Q3D - two days before and three days after. I stopped my Benicar blockade 24 hours before surgery and started it back the day after surgery. During the three days without using Benicar as a blockade, I took 40mg Beni twice daily, for it's other known benefits. The only IP that showed up was an outbreak of fever blisters which hasn't happened since the last time I had surgery and was given 900mg Clindamycin via IV in January of 2007. Previous outbreaks were every six months.
Thanks to Dr. Marshall and staff , I have a case of the "NO MORES"as in no more: insomnia, solemnance, Uveitius, Iritis, Raynaud's Phenomenon, tiredness, lack of energy, paraesthesia, claw hands, atrophied feet, sciatic pain, brain fog, problems making decisions, dysphonea, shortness of breath, acne or cysts, skin barnacles, dizziness, balance problems, erratic heart beats, gum disease, headaches, neckaches, hoarseness, hair thinning, sore throats, wheezing, seasonal rhinosinuitis flares, restless leg syndrome, restricted joint movement, bouncing arthritic joints, skin allergies, unexplained skin infections, lower back aches, getting up several times a night to urinate, inability to lose weight, bloating, full body edema, GERD, hyperthermia marathons, mid abdomen discomfort, digestion problems, tripping, falling, choking, sleep apnea and so far, no more cancer.
My health is great and the future is bright - with amber sunglasses (graduated from Noirs last year) and sunscreen with zinc, of course!!!
Wishing all of you well, gently! Donna still cruising ~~~~/]~~~*~~~
November 08:
Since granulomas are usually small, my dermatologist was alarmed when I showed up with one in each arm that measured at least 2 1/2 x 1 1/2 inches wide and were very deep.
After a biopsy the youngest granuloma (appeared two years after the first one) went away and never returned. The original granuloma continued to show up every six months coordinated with allergy season in Atlanta. During the MP it gradually lessened in size with each reappearance and has now been gone for about ten months.
Granulomas were also on the bottoms of my feet and ceased to be during the Benicar only phase. --Donna -
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
DNStog
Moderator
|
Posted: Sun Sep 27th, 2009 23:41 |
|
From June, 2009 Update:
IP: Tinnitus 1-4; Fatigue 1-3 and annoying; brain fog 0-2; dry left eye 0-2, occasional quick and mild zaps of the following: Sciatica, Raynauds Phen, buzzing little finger, stiffness and ache in neck, itchy skin; weight gain 20 pounds GRRRR
Sun Exposure: No longer MP dressed…bare arms when I go out, sometimes without zinc oxide for protection, blinds are now partially opened in house, bedroom still very dark but spending less time there, Sunglasses most of the time when out.
Much has occurred since my last update: daughter got married in June and moved to Florida; my mother continued to go downhill from MDS and passed away Christmas Eve; I elected to have a mastectomy with an immediate reconstruction in September; my DH retired in December; my dad turned 93 last month and is with a full time caregiver; I am now handling matters of estate for both him and my mom; both of my furbabies had to have minor surgeries and one of them is now being medicated and monitored for Cushings Disease (may be doing the MP soon) and my DH and I have had a couple of medical snafus that we are stilling working to correct. Lots of downer stuff going on, but I have been able to drop Wellbutrin, but may have to increase Lexapro.
Recent Symptom Resolution: ANEMIA In fall of 2006 and 2007 my doctor advised that blood tests indicated I was anemic which was probably due to Sarcoidosis and no action was taken. Then in September of 2008, I had an elective skin-sparing mastectomy with immediate reconstruction with a TRANS abdominal flap. The recovery from reconstruction was rough, but the method was well worth the days laying flat on my back which probably led to my weight gain. 
In November, my PCP said my anemia had gotten worse and to come back for more tests. Last month (longer than advised) I went in for more testing and results now indicate I have no sign of anemia…thanks to the MP.
Because my fatigue has not lifted completely since surgery, I had several blood tests performed last week including both D tests just to make sure I wasn’t getting too much sun or ingesting too much food with D. Below are the results:
Vitamin D 25 Hydroxy Level 5: Vitamin D 1 25 Dihydroxy Level 11:
Vitamin B12 Level 276/pg/ml borderline low still (ideal >300)
Thyroxine Free Thryroid Stimulating Hormone 0.9 ng/dl Normal
A November physical also indicated that my Cholesterol total has decreased from 253 to 232 (from high to borderline high) Triglycerides went up??? from 127 to 198; HDL from 52 to 57; and LDL from 175 to 135 (high to borderline high). First improvements in these readings since long before starting MP.
Changes in physical findings (November yearly physical): Hearing Test/audiogram shows moderate middle and high frequency loss in both ears equally. Motor functions normal except for absent ankle jerk reflexes.
Explanation of “elective” mastectomy: In 2006 I had a lumpdectomy for DCIS stage 1, follow up radiology tests required either a very painful mammogram or painful needle biopsies. There was some residual DCIS leftover from surgery in 2006 (I still believe it was microcalcifications and surgeon believes that was quite possible) but a recent MRI indicated some changes in the area had occurred. After 11 biopsies – three excisional and seven needle - more frequent testing was going to be required and I was weary of it all…especially arguing with radiologists. So after much research on my own, I decided to go for a mastectomy the way I wanted it done and found a surgeon to do it. Pathology reports showed some tiny tumors in the removed tissue – too small to show up on MRI – and my Oncologist believes they were left over from 2006 and had stopped growing. The one node tested was benign. Per my oncologist false positive for DCIS occasionally happens; however, there is no data on false positive DCIS for Sarcoidosis patients. MRI will continue on remaining breast – no more mammograms – so no more pesky microcalcification scares.
Plan of Action to rid fatigue: My MP prescribing doc and I came up with a plan if thyroid and B-12 tests were normal. 1) Increase Lexapro which has been shown to help relieve fatigue and if that doesn’t work then will assume I am in Stage 5 and increase Benicar as MP guided. I will start increased Lexapro next week and have ordered some oral B-12 which I plan to take weekly. If this doesn’t help rid me of fatgue then I will commence increasing Benicar from every six hours to every four.
Wishing all of you well, gently, of course! Donna…still cruising /]~~~~~~
PS I WAS ABLE TO DANCE AT MY DAUGHTER'S WEDDING.
Update, September 27, 2009
Thyroid result was normal and B-12 was borderline high. Taking Benicar every 4 hours failed to alleviate fatigue as did B-12. Increased Lexapro may have helped or changing my triple abx combo around did. Either way, fatigue was 0-1 this past week, energy and strength good, solemnance much better. New symptom: left foot has an occasional drag to it, so know that bugs are still being killed there.
All in all, I'm feeling very good, even with a mild case of the flu, and starting to get some things done around the house.
Wishing all of you well, gently, of course! Donna ~/]~~~
____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
|
BARNEY
Moderator
|
Posted: Mon Sep 28th, 2009 00:31 |
|
Great news Donna.
I believe that covering your arms/skin would help w/ your fatigue a great deal, but only my thought.
Glad your anemia is okay now.
Sometimes we just need reminding that it's not about winning the race, it's about just crossing that finish line. (Karna’s thoughts)
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
|
Deedee
Member in Phase 2
|
Posted: Mon Sep 28th, 2009 02:39 |
|
Donna,
Thank you for the detailed report. It is always instructive and informative to read the progress of those who have been on the MP for a number of years. I hope your mastecomy/reconstruction brings you improved peace of mind.
My mother died Dec 13th, 18 months ago, and my father died in March after suffering from dementia for a number of years. You have my sympathy and empathy. On the other hand, congratulations on dancing at your daughter's wedding! Isn't life strange with the sadness and the joy, all mixed together?
____________________
Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
|
Aunt Diana
Moderator
|
Posted: Tue Sep 29th, 2009 03:15 |
|
Great to hear you are doing so well, Donna. Thanks for the informative report.
I'm considering changing my abx combo and am curious what you are now taking.
Thank you.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
|
Current time is 11:30 | Page: 1 2   |
|
|
|
|
