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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Sun Nov 11th, 2007 05:06 |
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Heartfelt thanks for the MP website! You have given me HOPE, which is priceless! Most all the questions that came to mind have already been answered via the SEARCH. My own doctor is reading voraciously too, and is willing to monitor me on the MP. I'm almost (?) thinking of this as an ADVENTURE now!
I just wrote my Signature Line, so it HAS the up-to-date pertinent info. I'll gladly provide further info if required.
I am mostly recovered from a "flare" that began 1 week after I started the Benicar. I read online that this is common. I AM wondering, though, about the list of SIDE-EFFECTS of Benicar being almost identical to my sarc symptoms?!? So WAS was it a huge herx or side-effects?
Have now had 3 "Mino 25 every-other-days", and so far am NOT feeling any "worse". I do get about 20 seconds of center chest pain within 15 minutes of those littles doses. Am I likely to develop Candidia from the Mino? I battled MASSIVE Candida 20 years ago (also when the HBP started. . .) and ever since get a vaginal infection within one or two doses of antibiotics.
I'm a bit confused that "taking antibiotics like they were candy" was said to be a major cause of the previous Candida, yet now I am going to TAKE them to get rid of the root cause of ALL my historical miseries!??!
However, my most terrifying problem is my HIGH BLOOD PRESSURE. In 20 years of progressively higher BP, I have never found a drug (OR any "natural alternative" either) than has made a dent in it. (Atacand-HCT seemed to help for a while, but eventually quit working too.) We have scoured the world seeking an answer to this, and have had ALL typical medical/cardiac tests come back FINE. Today my BP readings were 181/118 AM, and 195/111 PM. Benicar does not phase it. BTW, the highest reading ever recorded on me was 268/168. I have NO symptoms with is, like headaches, dizziness, etc.
Well, this ought to get us started. I was not sure whether to post HERE or on the Th 1 site, and maybe I've bent your ears too much already. THANKS for listening!
recording:
RepeatedPneumonia/massiveCandida=1987/9-07biop=pulmsarc/lungPAIN ProdWHITEcough HOARSE SinusDRAIN/BP190/120-115pul;2-08 BP124/85-93pul/guaif-NiteContact-BenedrylCREAM/11-07
1,25D=83pg/ml25D=27ng/ml/LOlite,noD/NoIRs/Sunscreen/BeniQ6H+Mino
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Meg Mangin R.N.
Former Team Member
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Posted: Sun Nov 11th, 2007 20:42 |
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Hi Cowgirl,
Welcome to our study site for the Marshall Protocol (MP). Thanks for the kind words. You've posted at the right site. This is your progress report for phase one.
Your diagnoses, D-metabolites test results and symptoms indicate Th1 inflammation. It's clear you understand that you will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP.
Please continue reading the information here to help you understand the cause of Th1 inflammation and how to treat it safely and successfully. For background information, see What is the Marshall Protocol? The science is detailed here and simple explanations provides less technical descriptions.
Our members provide personal testimonials to the efficacy of the Marshall Protocol in Marshall Protocol Success Stories. You may follow the progress of a few of our members in their phase 1 progress reports or the Alumni Forum.
You must read and thoroughly understand the Phase One Guideline and review the items on this checklist. The second and third phase guidelines are available to study participants upon request at completion of phase one.Your physician has access to all guidelines in the Private Section for Health Professionals.
Our study site is the only source that is certain to have reliable information about the MP. Do not assume that your doctor knows all about the MP because s/he has other patients on it or is willing to study it. You must educate yourself, using the study site, to ensure the MP is followed correctly. Please note that:
-It is the patient's responsibility to see that the prescribing doctor is following the MP correctly.
-It is the patient's responsibility to see that the prescribing doctor understands the effectiveness of the MP and the dangers inherent in deviation from the guidelines.
-Combining other protocols with the MP will not work and can lead to dangerous immunopathology. Components of other protocols or alternative treatments such as (but not limited to) supplements, vitamins, glyconutrients, rife machine, infrared sauna, SAD light, chelation, etc are all contraindicated.
Many medications must be avoided on the MP. Be sure to inform study site Staff of all medications and supplements (both Rx and OTC) you are taking. Most vitamin supplements are contraindicated. See Should I take vitamins?
Because vitamin D is immunosuppressive, it's important to avoid vitamin D supplements (multivitamins, any kind of fish oil, Omega-3 capsules) and all foods naturally high in vitamin D to bring 25-D down to a therapeutic level of 12ng/ml or less.
I see you have ordered the required sunglasses (NoIR, Bolle100, Oakley or Zeiss). You should not have begun Benicar without them and this might have contributed to your increased symptoms. See I just started Benicar. Why do I feel worse?
The Benicar side effects you referred to are due to immunopathology. See Immunopathology Tutorial.
Your symptoms indicate you need to read When should I be concerned about cardiac symptoms?
The MP is designed to allow your immune systme to combat yeast infections. See Candidiasis (yeast infection)
Avoiding sunlight exposure is usually necessary to some degree.
Your health care provider can communicate with other medical professionals using the MP by posting in the Private Section for Health Professionals. S/he will be interested in the Papers for Physicians, the Letter of introduction for your MP supportive doctor and the science DVDs. You may encourage him/her to call or email Dr. Marshall if needed (contact information is on all his professional papers).
Presentations by experts, tutorials about the MP and testimonials by recovering members were videotaped at our 2005 and 2006 International Conferences. Click here to obtain these informative DVDs.
Everything you need to know about the Marshall Protocol is in these two forums: Essential Info About the MP and Marshall Protocol FAQs. Please refer to them often.
Folks who chose not to become an active participant on the study site are not officially on the Marshall Protocol because it is still in the clinical study stage and there are no physicians yet certified in the practice of the MP.
MarshallProtocol.com is a huge study site, containing over 130,000 items. New visitors can only view a small fraction of the site because over 2/3 of our membership report in the Phases Two and Three Forum which is hidden from public view. Anyone in phase 2 or 3 who has not requested access to this forum by completing the MP questionnaire, is missing a wealth of information and support.
The Marshall Protocol is a serious and lengthy commitment which should not attempted without fully understanding it. Should you decide to pursue treatment with the MP and wish our assistance, let us know if you agree with the Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol which are required for participation in our study and counseling on this study site.
Your supervising doctor is responsible for your welfare. This study site acts in an advisory capacity only. All guidance given on this study site is based on the understanding your doctor supports participation in our clinical study and has given permission to follow our recommendations. Please keep your doctor informed of your progress with regular reports and do not hesitate to contact him/her with any concerns.
The MP has an excellent safety record but it is still an experimental treatment plan. Many folks who are very symptomatic or who have been ill for a long time are doing well on the MP. But you should know that if symptoms are extremely debilitating or vital organs are severely compromised, it may be very difficult or even impossible to tolerate the immunopathology involved in the healing process. Patients should be aware there is a rare possibility that immunopathology will provoke a serious adverse event, especially if the disease process is well advanced.
To ensure your safety and provide study data, we expect members (even those who think they are doing well independantly), to post a brief progress report weekly (more often only if not doing well) so Staff can catch any problems early and have details of past responses to provide effective assistance. It is important that you report all pertinent details, even those that might seem embarrassing. Be sure to notify staff before you take any action that is unfamiliar to you. Staff usually respond within a few hours but we ask members to give us more than a day to answer time sensitive questions.
In phase one, you will be expected to learn to recognize immunopathology and how to manage your immune system response with medication management techniques. Knowing how to manage the MP independently on a day-to-day basis will serve you well should an urgent situation occur.
As long as you are on the protocol, it is essential that you continue reading the study site regularly because important new information is frequently posted.
Because the increasing volume of requests for assistance is threatening to overwhelm our small staff of volunteers, before you post a question, we ask that you type key words into the search feature of this site or an Internet search engine. This is an important skill to learn so that you can continue to help yourself as you progress on the protocol.
Be sure to click on all the links in our responses to you.
We look forward to following your progress on the MP. 
Best, Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Gary
Member in Phase 3
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Posted: Sun Nov 11th, 2007 21:35 |
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Hi Cowgirl
The quick answer is that the reaction to the Benicar is herx.
My speculation is that if it is listed as a side effect, the test subjects were probably TH1 infected (unknown to them or the test designers) and were also herxing... not knowing better, they called the reaction a side effect.
You may not be reacting much to the 25mg of mino, but your 25D is high enough to be inhibiting your immune response. As the 25D levels come down, your immune system will be able to respond, and your reaction to a particular MP antibiotic or antibiotic combo will increase. It may take many months to over a year to get your D levels down, even while avoidig ingesting more. Since that is too long to wait to increase your anitbiotic doses, the strategy is to go slow on the increases. You don't want to think 25mg was a breeze, go to 50mg after just a week at 25, and then in a couple weeks be suffering from substantial herx. Your 1,25D is quite high, suggesting you have lots of bugs to kill - you're just not killing them in big numbers yet... that will come, but you need to work up to it slowly so it doesn't get beyond what you can handle. Personally I'd give it at least 2 weeks at 25mg qod with very low herx before I go to 50mg.... and if herx got worse in week 2, I'd hold off on going up in abx until that settled down. Of course that's just what I would do....
As far as blood pressure goes, you are worrying too much about it. BP will come down with time as the underlying infection is eliminated. You may get spikes of very LOW BP once you start killing lots of bugs. Again, if you are being careful with your rate of abx increase, don't panic over this either.... but also take it as a sign not to increase abx for a while. My BP was 139/95 prior to starting the MP. I had low spikes down to 75/45 early in the protocol, and now (at 3.5 years) it is stable at 90/55 whether I am on Benicar and abx or on no drugs at all. Yours will come down.. just follow the protocol to the letter and have some patience.
Be sure to understand everything Meg told you to read.
Best wishes
Gary
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Sarcoidosis/neuro, lymph, eyes, fatigue, liver, kidney Ph1May04 Ph2Aug04 Ph3Dec04. Stage 5 - no abx for now. 25D<4 Mar05 Cover & NOIR in sun ~45 min/day No nonMP meds
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Tue Nov 20th, 2007 02:00 |
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Howdy! THANKS for your responses to my tentative first post. I had to GET a computer and LEARN how to use the thing to be able to get going on the MP. So it's been quite a big deal in several ways! I am ever grateful to MP member LeAnne who saw a nationwide email list requesting prayer for ME (newly diagnosed with Sarcoidosis), and cared enough to email me with news of the MP. TALK ABOUT AN ANSWER TO PRAYER!
I have reread all the sites you recommended, and printed out several for easy referral and reminders. Posted several lists inside a kitchen cupboard door! I intend to do this right, with your expert supervision.
Progress Report: Meds: BeniQ6H/Mino25Phase 1 -- I do not seem to be reacting much at all so far. Unless you advise me otherwise, though, I plan to remain at this lowest level of mino until the new year begins. I have several batches of out-of-state family coming, etc. etc. and need to be in good shape for all the goings-ons. I have been SICK nearly every time I've seen them in recent years! I've only been ON mino for 8 every-other-day doses, and could possibly have a higher HRX soon anyway, right?
Non-med use this week: CUT OUT Multi w/o D, C, and EyeNutrients too; yesterday took anti-inflammatory once for back pain (saw chiropractor today, all relieved) Still need Night Time Cough Syrup IF coughing begins when I lie down to sleep, which it does pretty often. Better sleep is of great benefit already, as I was used to being up 3-4 hours in the middle of the night for years, for "no reason". . . I will update my signature line this week.
Light exposure: NoIRs arrived, and SUCH a feeling of RELIEF when worn! I had THOUGHT my eyes weren't very sensitive, but I was WRONG. I am only outdoors for a 2-mile drive to work with NoIRs and coverups. Wear NOirs as much as possible in the office, keep blinds closed, and accessory lamps off. I use a moisturizer with zinc oxide as sunscreen every day, and added the hand lotion with the same too, to use daily and more when going to drive.
Symptoms this week: few and pretty minor; keeping daily charts; worked a full week's schedule without unwarranted fatigue;two hours of lung symptoms after attending church not knowing the basement had been painted 2 days before (!) and even though I could not detect a smell.
Blood Pressure continues to be WAY HIGH, but my MP-supportive-doctor decided not to add any other drugs since none of them have ever helped anyway. He also gave me permission to NOT take it twice a day as he formerly required, to cut down the fear factor, and to "trust the MP." OK! Thanks for YOUR comfort on that subject, too. I do NOT seem to have any of the other "cardiac emergency" symptoms.
I am most THANKFUL indeed this Thanksgiving Day (USA) for all of you at the Autoimmunity Research Foundation!
Wishing us all WELL,
CowgirlLast edited on Tue Nov 20th, 2007 02:03 by Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Meg Mangin R.N.
Former Team Member
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Posted: Wed Nov 21st, 2007 02:21 |
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Thanks for a clear and concise report. There are a few things you can do to make it an even better 'snapshot' of your current situation.
List routine measures to prevent sun exposure (NoIRs, covered up, sunscreen) in your signature line only.
In your next report, just describe your sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday) for the week. This provides a clue to the cause of any symptom increase.
Rating your symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how you are doing since symptoms should be tolerable at all times.
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. You will gain experience adjusting MP meds and using your personal tool kit to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs. Carry on.....
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Mon Nov 26th, 2007 08:53 |
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Greetings, my dear cheerleaders!
Began MP with 40mg Benicar q8h on 10-18-07; now Benicar 40mg q4h; began Mino 25 ev.48 hrs as of 11-07-07; indoors all week but for 15 minutes
Just as you all predicted, I DID get some herx THIS week: minor pulm-sarc symptoms, PLUS I have developed five 1/4" weepy leisons on my right leg. I first thought they were spider bites, but they don't look anything like bites now. I'd rate them "5". They are raised and purple-red.
Also, the sole of my right foot feels like a bee won't quit stinging it! Piercing, burning, BAD. Give this one an "8". Cannot stand to touch it, and bearly limp around the house only when absolutely necessary. Heating pad and soaking it seemed to help a little.
BP was 189/118 with a 90 pulse today. Kept waking up every hour or so all night with '"loud" heart-pounding in my ears. Got up to swollen neck, throat and jaw lymph nodes. Guess those are all good signs, eh?! Hubby frustrated with my brain fog. Me, too.
I upped the Benicar to every 4 hours last night and all through today, without mediation in symptoms. Did put Benedryl cream on the sores. Didn't try any Tylenol yet (though I WILL tonight!) because I wanted to give myself a chance to SEE if the Benicar increase alone helped. The foot pain is like nothing I have experienced before, but I've heard "plantar fascia" described a lot like this. I WAS on my FEET in the kitchen a LOT over the Thanksgiving holiday, with a houseful of guests and grandchildren. I guess one could have more than one problem going on at the same time, or are ALL symptoms ALWAYS herxing?
I am the breadwinner for our family, so I need to learn to manage a "tolerable herx". We are praying I won't have to quit work, but I will if there's no other way, of course. It would have been very difficult to have had to work today. Thank the Lord for weekends!
Took my scheduled 25 MG Mino tonight. Please advise if you think I should slow down the frequency of Mino, OR take it more often OR . . . I spent a lot of time studying on the website trying to decide what to do. It helped keep my mind off my pain, BUT I am still unsure which way to go. Do I understand that taking it LESS often would INCREASE the herx? So then I should try doing it nightly until the pain/lesions mellow out? Thanks for your patience with me.
Had a big "aha!" moment this week when I FINALLY realized WHY I return home with "croup" and Higher-than-ever blood pressure from nearly every trip we take. It is NOT the "airplane air", it is NOT the runny-nose of a grandchild, it is not stress, it is SUN EXPOSURE! Long car trips, cruises, conventions in CA, taking kids to apple orchards and pumpkins and daylight hayrides! NO WONDER I had so many "relapses". I'd be so symptomatic I could hardly make it home. THANK YOU, MP friends, for teaching me WHY. Talk to you next week.
Cowgirl (alias Hop-Along Cassidy)
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Meg Mangin R.N.
Former Team Member
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Posted: Mon Nov 26th, 2007 10:12 |
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Thanks for checking in. Please use our new reporting format. This provides a convenient 'snapshot' of your current situation so we can provide an accurate response.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Questions:
It's good to know your B/P has been lower since you are avoiding light.
Lengthening the interval between mino doses may decrease symptoms. It is only one of your options. See How to adjust MP meds.
An increase in any symptom that correlates with MP therapy is probably due to immunopathology. See How To Identify Immunopathology (Herx). Taking an extra dose of Benicar or increasing Benicar to every fours hours can help assess if symptoms are due to immunopathology. Chewing or sublingual dosing may give faster absorptiona and relief. See When and why should I vary my Benicar schedule? and BenicarQuiklink.
Tolerable is a subjective measurement. See How to assess symptoms. Charting may be helpful to assess your immune system reactions.
Don't let your symptoms get beyond what you can tolerate. It can be difficult to get things back to tolerable once they get out of control. Many folks report that rest is the most effective thing they can do to keep symptoms tolerable. See How will the MP affect my life? Can I continue to work?
We recommend extra caution and special attention to detail if you have any level of brain fog or memory impairment. It's important to use a medication dosette and reliable alarm system. If necessary ask for support from a reliable family member when dividing, setting out and or taking meds.
Let us know how it goes.......
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Mon Dec 3rd, 2007 06:43 |
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Dear MP Peoples -- Had a good week, hrx noticeable but tolerable. Went back to the Beni q6h and Mino q48h routine after experimenting with dosages in response to the foot pain and six leisions on one leg. I am learning. Whew!
Used Tylenol for four days, Benedryl cream on the sores, and Nightime cough syrup to help me sleep. Off all those now.
Very little outdoor time; in office under flourescents mostly with NoIRs for four days this week. Mixed up words noticeably. Exhausted for the weekend. Today had three short spells of the "woozie" may-be-going-to-black-out feeling. No more of them since my nap. BP today was 180/112 with 94 pulse.
Even after rereading the sites on nutritional supplements, I have still had a hard time letting go of them. I fnially DID let them go, but it was like taking a "blanky" away from a toddler! I have taken natural "heart" alternatives for 20 years to support my heart and circulatory system during the POUNDING they've been taking from the HBP. I felt I "should" have had damage and cardiac symptoms, but for those products. It is not that they were CURATIVE, though I had high hopes each time I tried something ELSE! (We won't mention that VITAMIN D was the last item I added!!!!!)  It will be interesting to see if herxing will become more evident now. . . I sure don't want to take any chances on messing up the MP.
One question on the nasty sores: is it possible they are herx from having had Shingles? They LOOK very like Shingles sores, except that they did not seem to "follow a nerve pathway" or have nearly the PAIN level.
Just got the DVD's and am really looking forward to watching them. SEE you soon!
Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Tue Dec 11th, 2007 01:38 |
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Hello, y'all. MEDS: Benicar Q6H and Mino Q48H. Had considerably more hrx this whole week, though not intolerable enough to worry. The most noticeable was throat lymph glands that looked like hard-boiled eggs for about 2 hours after waking. I massaged them with soapy hands and then with moisture lotion. This is the most swollen ever, and I presume it is all to the GOOD?!
Have not required PALLIATIVE MEDS this week.
Am off my roster of supplements and doing well on natural, low carbs diet.
Hardly any outdoor light exposure. Managed to work a full week, wearing NOirS most of the time under fluorescent lights. We had our annual office holiday party, and EVERYONE wore sunglasses so I wouldn't feel alone! I truly appreciated the TLC.
Have three new lower lip lesions, look like blisters except they are purple. I had these earlier with my two episodes of "supposedly pneumonia" in July and October. It IS bitterly cold here now, and it's usually WINDY, and I AM trying to keep my nose and mouth covered when out. I am still wondering if these strange sores (the six on my right leg are slowly healing and shrinking) are possibly a "retracing" of TERRIBLE Shingles --? They LOOK that way, anyhow.
Noticed that I could SING(!) Christmas Carols yesterday WITHOUT coughing and clearing my throat. Also could actually DO soprano again instead of gagging along an octave lower! This is a wonderful encouragement, because I'd given up on the joy of singing, though it USED to be a big part of my life.
Have a question about Th-1 and SUSCEPTIBILITY while on the MP. I am continually seeing clients, some of whom obviously have colds, etc. Do I NEED to ask them to reschedule for MY sake? That would put quite a kink in the action, but I don't want to be foolish, either!
Thanks for YOUR TLC, again. . .
Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Belinda
Former Team Member
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Posted: Tue Dec 11th, 2007 03:20 |
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Cowgirl,
Glad to hear you are regaining your voice. Does your Benicar dose stretch beyond 6 hours while you sleep? Because I was thinking that might explain why your glands in your neck are enlarged when you awaken.
Lesions on the face that occur or exacerbate when it's cold or windy can be what is called lupus pernio. Lupus Pernio is a skin manifestation of sarcoidosis. Lupus Pernio is not another disease (and is not related to lupus), it's simply a name for the red-to purplish lesions that can appear on the nose, face, ears or hands of sarcoidosis patients. These lesions can occur when the nose, face or hands are exposed to cold or wind, so it's a good idea for sarcies to keep these areas protected from wind and cold. Avoiding exposure to bright lights is also an important preventative measure.
Sometimes lupus pernio lesions will have an appearance of small "beads" along their edge, especially if the sore is on the rim of the nose. If left untreated, lupus pernio lesions can be disfiguring and cause a patient to feel embarrassed, particularly since they may be noticeable on facial areas so visible to the public.
Cutaneous sarcoidosis lesions can appear at sites of old scars or trauma. So that could explain why you are experiencing skin lesions at the site of your shingles outbreak.
Belinda
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Sun Dec 16th, 2007 01:50 |
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Hello again!
Meds have not changed this week. Palliative meds limited to a couple Benedryl to let me sleep without sinus congestion and coughing. Quit several supplements, but did NOT notice any increased herxing since/yet.
No added light exposure, but did decide to bring lamps with incandescent bulbs to the office and get those flourescents OFF. Also decided NOT to remove my NOirS anymore when WITH a client. How DUMB to set back my recovery just for that!
Brain Fog has been noticeable this week. Having to proof and reproof all my attempts at work, especially on the computer. Dizzy spells resulted in one fall, much to my surprise! Fifteen minutes after a Mino 25 my kidneys ached for about three hours. Had a day of both big toes hurting. Noticed several episodes of heavy sweating (even though it was 8* outside!). A couple of evenings I was super-extra tired.
My best news is that I couldn't WAIT any longer (I've tried not to dwell on it)to check my high blood pressure, and it was down so much I took it six times in one day!!!! I'm almost afraid to believe my eyes. It is still in the 150's over 90's, but WHAT an improvement! REJOICING!
The purple lip blisters are gone again, and the leg lesions are just about gone, too. Made a "Sarc-Scarf" by adding elastic to a nice thick soft muffler to make it STAY up across my nose and mouth. It worked slick, left my hands free, and didn't mess up my hair much. Everything else I tried, like medical face masks, just steamed up my NOirS!
Couple Questions: Would you consider "Me on the MP" to be sittiing duck for every cold/flu virus that comes my way? Am I especially suseptable, in other words?
Would adding humidifiers at home and at work be a plus for someone with pulmonary sarc?
Guess this is it for now. THANKS, dear helpers!
Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Sat Dec 22nd, 2007 18:49 |
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Season's Greetings! MEDS: Beni Q6H and Mino 25mg Q48H
PALLIATIVES: NiQuil Cough Syrup to enable sleep.
SUPPLEMENTS: Off
LIGHT EXP: Very little outdoors, switched to incandescent only at home & office; WEARING NoirS through appointments too now!
SYMPTOMS: All tolerable and mostly short-lived. The usual pulm-sarcs (1-3s), plus eight sharp jabs of pain (6s) in the liver area all on one day, two more a couple days later, none since. These were NOT like the gallbladder pain I've had in the past. If this pain HAD continued, it would have been intolerable!
Throat lymph glands swollen every morning, goes down with massage. Throat sore only for several hours per week. Lymph at base of neck on left noticeably swollen, does NOT go away with massage. Armpits achey at times.
Eyes watering often, and burning sometimes. Eye check-up due. Will be interesting to see what ophthalmologist says about Sarc. 4 years ago = retinal detachment repaired with laser. BET THAT WAS SARC TOO?!
Have been more weary than usual at end of work days. Had to be careful a few times not to keel over due to dizziness. BP is still high, though considerably mellowed from when I began the MP. HR almost always below 100 now, too.
Noticed shortness of breath on very little extra exertion. Loading Christmas gifts into the car was exhausting!
Tomorrow we are flying to "the Sunshine State" to spend the holidays with our son and family. Every time we go there, I come home SICK. I never DREAMED it was the SUN bringing it on!!!! So this time will avoid the sun AND the seafood, and be glad I DON'T have to avoid those sweet grandkiddos!
Here's to a HEALTHY NEW YEAR! Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Meg Mangin R.N.
Former Team Member
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Posted: Sun Dec 23rd, 2007 06:48 |
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Congrats on lowering your B/P a bit....
Don't worry about catching every virus that comes around. Some folks do and many do not. A humidier could help. A recent report indicates the flu virus is transmitted more easily in dry air......hence, winter is the flu season.
Be sure to read What precautions do I need to take when I am going out or when traveling away?
Have a safe trip...................
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Sun Dec 23rd, 2007 09:39 |
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Yikes! THANKS, Meg. I caught your reply in time to revamp my meds for the trip. I was truly headed for yet another disastrous "vacation" (in spite of all I've learned about the MP since my "Vacation Pneumonia" following our trip last October). It surely PAYS to read the posts on EVERY subject, even though you may THINK you understand "everything".
We were just bemoaning the fact that our first day is "wasted", having found no flights until 4 PM. Now we are thinking it was a stroke of luck after all.
Will give you a full report when I get home. Appreciatively, Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Belinda
Former Team Member
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Posted: Sun Dec 23rd, 2007 10:44 |
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I'm glad you found a way to adapt your muffler to a "sarc-scarf." I think this will be one of your best tools this winter.
No doubt you've made a good guess about the cause of your previous detached retina. You may want to share these reports with your doctor, if s/he's interested:
Systemic disorders associated with detachment of the neurosensory retina and retinal pigment epithelium.
Retinal pigment epithelial detachment in sarcoidosis.
Sarcoidosis and central serous retinopathy: a dangerous combination.
We hope you do well on your trip and enjoy!
Belinda
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
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| Posts: | 68 |
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Posted: Mon Dec 31st, 2007 04:59 |
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Hi! There's NO place like HOME, especially when you're on the MP, methinks.
COMMENTS: I did well on the trip, lots better than before in my ignorance of the light and seafood issues(!). I did raise the Benicar to Q4H for the duration, and felt pretty well for the first five days. HOWEVER, I really crashed enroute home. A three hour flight ended up taking 13 hours. I know we were actually LUCKY, as many other flights were totally cancelled that day. First signs of trouble were sore throat, swollen neck lymph, a "dry" feeling in my chest, and swollen ankles.
Too much STRESS and light, not enough good food or any rest. Extremes of temperatures, too. Like SWEATING on the runway "waiting for a gate" for 45 minutes, only to get out in ZERO temperature weather and lug all the luggage four blocks in deep snow. Emotions shot when I got to the car.
Looking at the MP list of "WHY symptoms have developed", I think the major underlying cause was probably lack of REST. MY naps should have had the same priority as the grandbaby's naps! I was already way over-extended BEFORE the trip back even began, so was in NO shape to cope with one unexpected snag after another.
We had a PRECIOUS time, but I'm not looking to travel anywhere for a long time.
MEDS: I had tried Benicar under the tongue, Benicar @ Q4H, and allowing an extra day between Mino (25) doses, without relief that I could tell. So decided to try the Mino 25 mg every 12 hours. That maybe (?)does seem to have slowed "the croup" down some. Think I will continue that for one more day.
PALLIATIVES: I have taken several doses of Natural D-Hist, which has helped the sinus flood noticeably. It works without making me sleepy or loopy. Using a saline nasal spray,too. Need night time cough formula for sleep, as cough is wracking. Also using Guiafenison syrup throughout day. Had a couple Bufferin for headaches brought on by cough.
LT EXPOSURE: Very little since I got home. I'm hibernating. NoirS always.
SYMPTOMS: Classic Pulm-sarc, at about a level 6-7. NOT as horrible as the "pneumonia" before, but bad enough! Had 6 "liver jabs" today, and a couple on the left that might have been spleen, too. Will get some Milk Thistle tomorrow as suggested on the site.
Right hand and fingers felt like a "sparkler" of pain for about 15 minutes last night. That did not reappear yet today, but neck and shoulders feel heavy, as do arms and legs. I think my body is begging me to lie down some more! Have had a few sessions of chills, including two "scalp chills".
I have been on 25 Mino Q48H for about 2.5 months. Unless you advise otherwise, I will soon try 50 MG q48H. Perhaps that will calm things down again? I do hope to be "tolerable" enough to go back to work again in a few days. . .
THANKS again for helping me keep up with myself. New Year Blessings on y'all!
Cow Pie (that's a pooped Cowgirl!)
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
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Posted: Mon Dec 31st, 2007 06:48 |
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Thank you for the update CG.
I am sure you are glad to be home and recuperating from your long flight ordeal, that can really induce some severe symptoms as you have found out. Based upon your dosing schedule it is time to increase your mino but agree you should wait until your symptoms from your travel are under control and you are more rested.
Continue all supportive measures.
Best Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Mon Jan 7th, 2008 09:15 |
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Howdy! MEDS: Benicar q6h, JUST went to Mino 50mg q48h (after recent "flare" mostly subsided with 6 days of Mino 25 mg q12h; had gone on Beni q4h during those days as well). Within 45 minutes of the two 50 mg doses I've had at that level, I had chest pain and both armpits hurt! Yippee?
PALLIATIVES: Several doses of Natural D-Hist for sinus flood; Bufferin two or three times for burning toes. Used a warming rub on right hand pain several times.
LIGHT: Read more online re the 30 lux target for lighting. So I'm taking it up a notch. Got large cardboard sheets to tape over windows of the rooms I frequent, and will do the same this week at work. Have discovered that my BP goes up and down directly related to the amount of light I'm getting! Surprise, surprise! Will be wearing my NoIRs while driving at night, too.
SYMPTOMS: The five or six "little purple beads" on the inside of my lower lip are back. My HIGH BP skyrocketed (228/128) after our SUNNY, exhausting holiday trip, and erased any lingering doubt that my BP IS directly related to light exposure. I'm still dumbfounded at that!
NEW SYMPTOMS: left side at the base of my neck is NOTICEABLY swollen. Think it is lymph, hopefully just doing its thing.
Also, two times today had kind of a "puff of air" in left ear, followed by a couple minutes of a high pitched whine. I've never HAD tinnitus before, though see it listed on the symptom charts, so I guess it's par for the course too.
Have been to dentist due to a toothache, though he could not find anything to account for the pain. It seems very logical that CWD would congregate in the gums and teeth. . .
I feel almost silly relating all these little "complaints" to you. GUESS THAT MEANS THEY ARE ALL TOLERABLE!
Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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Meg Mangin R.N.
Former Team Member
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Posted: Mon Jan 7th, 2008 09:22 |
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Thanks for checking in....it looks like you are working to keep symptoms tolerable with your active lifestyle by independently managing immunopathology, adjusting MP meds and using your personal tool kit to manage immune system reactions.
Please read When should I be concerned about cardiac symptoms?
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.
Review all options in My immune response/symptoms are too strong. What should I do? Try the options one at a time. Do not hesitate to use any of the med adjustments suitable to you.
As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed.
Keep up the good work.....
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Cowgirl
Member in Phase 2
| Joined: | Sat Nov 3rd, 2007 |
| Location: | Wyoming USA |
| Posts: | 68 |
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Posted: Mon Jan 14th, 2008 03:33 |
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Hello again! MEDS: BeniQ6H with occasional extra 20mg chewed for hrx control; up to Mino50mgQ48H for last 10 days with NOTICEABLE increase in pulm-sarc hrx, from 2-3 levels to 4-6 levels, with a few 8s thrown in. Will bide a while, eh? DO want to work up to the 100 mg as soon as I CAN, due to what I understand from the "contagion" post. That spooked me.
PALLIATIVES: NiQuil for sleep w/o coughing; Natural D-Hist for sinus control.
SUPPLEMENTS: Probiotics for yeast tendencies; Milk Thistle for LV & SP pain (like little shocks).
LIGHT: Finally covered all windows with cardboard; almost no sun.
SYMPTOMS: BP went down the best in 20 years! 139/93! It has maintained for three days now. Is it possible it is "just" THAT reactive to light??!!
QUESTIONS: I read the Cardiac Symptoms info, but am not clear on it quite yet. Is HBP due to 1,25D causing excess Angiotensin II to constrict blood vessels--OR--the HBP being NECESSARY to force the blood through "hardened" sarcoid lungs to BE oxygenated? IS light avoidance the most important factor in lowering HBP in Th-1 cases? Face it, ANY WAY it's doing it is A-OK with me. Seems like a miracle, in fact. I'd just like to understand WHY better if possible.
Have received the Chicago '05 and the LA '06 DVDs and am learning a LOT. I'm overwhelmed at having the chance to RECOVER because of you PIONEERS! THANK YOU for making it accessible to everyday people NOW, and NOT just waiting for "the brass monkies" to get around to it.
Gratefully & Hopefully, Cowgirl
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Sarcoidosis/lungs, HTN, sinusitis, candida, hx repeat pneumonia, 125D83, 25D27, MP 11/07, Walsom for sleep; NoIRs, low lux home&office; 9/08 25D19.
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