 |
| Author | Post |
|---|
judithann
Member in Phase 2/3
|
Posted: Sat Aug 12th, 2006 14:55 |
|
Hello Barb and all;
I have recovered from that horrible pain in the side. that is good news!
I had a pretty good day yesterday too, but today (a Mino day 25mg) I am very wheezy, my breathing laboured. I have read all the hints on breathing better and I am putting it to use.
It is funny, when I stared this MP, I had expected this reaction (lungs) right away. This has been my sickest body part. Yet it was my nervous system that threw me for the first loop. Then it moved into muscle and some joint(second sickest part). Then today WHAM...the old lung are having a spat with Mr Mino!
I also discovered three large (size of silver dollars) complete bald spots on my head, I have long hair past my waist, which I wear in a large braid down my back. it was easy not to notice these patches. A good head rub revealed the spots!!! This is Part ,of the disease, of sarcoidosis. I have had this reaction before, during some really sick episodes with the Sarcs.
Of course that is true with the lungs too. I have been through some nasty hospitalization because of respirtory distress. I can feel that I am using some secondary muscles to breath....I am , as always, resting, and remaining calm. That is so important when the body is in distress. It frees up energy so it can do its job!
At least I know what it is and am assured that I DO NOT have an infection. It is just reactive airways fighting.
My attending nurse, who arrived for my bi monthly check up yesterday ask me to inquire about my rapid pulse. It often stay at about 115, at rest. I often can feel it myself racing away. I would think that could very much be the Benicar. Your opinion please Barb.
Personally I was thrilled that she wanted me to check with the MP forum. It shows that they are feel some confidence it this process. She will advice the Doctor of her concern in the matter, after I check out what this might be.
I have had this pulse rate for a few weeks now. BP is 100/70something.
I am off to have a steamy bath cause that can ease the laboured breathing some too. I am feeling a bit worn, but be advised that I am NOT discouraged.
My Mom is going through Chemo for Ovarian Cancer, and she doesn't throw in the towel just because she has a bad day of reactions! Besides what good would that do her, the disease would only get her. The same here....stopping the MP would not suffice anything cause the disease would only strike me down. Remember MP-ers the only way to beat this illness is to fight fire with fire!!
I will keep you posted on my breathing reactions soon. Thank you Barb and Meg for helping through the last crises and concerns!
As Ever, Judithann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sat Aug 12th, 2006 21:12 |
|
Hi Judithann,
Your resting heart rate is mildly elevated but is not a cause for worry. It is another symptom of your inflammation and it will come down as your inflammation resolves. That has been my personal experience. Please see Tachydardia
What is a cardiac Herx? When should I be concerned?
It's tempting to blame the Benicar but it is really the disease that's responsible and you are on the way to defeating it.
Best,
Meg
P.S. I love you attitude! I'm sure your Mom had something to do with that. Please give her my best regards.
|
judithann
Member in Phase 2/3
|
Posted: Mon Aug 14th, 2006 22:55 |
|
Hello Everyone:
I am having a pretty good day. My breathing has calmed down, my sharp pain in the side has not returned and  I made a fresh blueberry pie. (I made it with sugar and white flour so none for me )
AND the best part is that this is a Mino day!!! My body is really changing, I have gone from sweats today, to chills within minutes,. This is managed by undressing and redressing. This is very managable indeed.
Maybe things will level out a bit now. THAT WOULD BE NiCE!
As Ever Judithann
Last edited on Mon Aug 14th, 2006 22:55 by judithann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
judithann
Member in Phase 2/3
|
Posted: Sat Aug 19th, 2006 09:53 |
|
Hello Everyone
My reactions have remained very miled and calm over the past few days. This is rather nice. I am very tired and still cannot engage in anything much.
My BP remain low 85/53 and my pulse a bit high. but I am very comfortable with both. Just can't run that marathon, nor up and down stairs nor bend and reach....you get the picture.
The muscle in my mid-back , right side under the shoulder blade. charlie-horses and has it own priviate seizers. It hurts so friggin bad. Happens if I engage my arms too long in an activity such as baking, dishwashing. sweeping ect.( bet my husban is getting supious as I keep claiming I can;t do this and can;t do that with the house work!) I think I will engage in some "at home massage therapy".Is massage safe while on the MP? I really do not want to take any pain medication because my stomace will not handle that with out stomace pain. The Benicar never seems to upset my stomace but the Mino will ,so I try to take it with food...helps a bit!
The pain in my mid-back is something that was happening before the MP, it is magnified more these past few weeks. it is not an alarming pain, never ever heard of anyone dying from a muscle spasim in the back!
If I can keep my breathing and heart and other vital organs balanced I have no doubt that the rest will IN TIME take care of thier self.
My Mother who has Oviarian Cancer has taken a turn for the worst. We live a few hundred miles apart, so no doubt soon I will have to travel and say good bye to her. I really want to be with her when she dies, so when that time comes I will have to adjust my MP for a wee bit. I have been so faithful in staying out of all light! It will be a big shift! I want to shift carefully because if I become sick then I will be no good to anyone especially Mother.
On the other side of the great circle of life my eldest Daughter found out that she is expecting her second child, her son is 7years old, Well spaced indeed! I am thrilled.
That about wraps up me update for now. Always pleased to recieve any advice or words of wisdom! Pressing onward.
As Ever Judithann
PS Meg is my Sig. line better now???
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sat Aug 19th, 2006 20:55 |
|
Judithann
Thank you for your detailed report.. posting an Index of your meds schedule and dosing at the top of your post is helpful to Staff for replying and for other Members for reading and understanding .. thank you..
so sorry about your Mother.. see this Information to help you to prepare: What precautions do I need to take when I am going out or when traveling away?
and also: Tools to check:
re muscle spasms:
re massage: some find it helpful and some find that it may release toxins given the painful after effects.
see non meds tips in PAIN CONTROL
also says in part: -Some folks have reported that taking Valium (diazepam) not only reduces their anxiety or their pain but also reduces other herx symptoms. Valium is a useful adjunct for the relief of skeletal muscle spasm due to reflex spasm to local pathology (such as inflammation of the muscles or joints, or secondary to trauma)
Please check with your Dr. For further details re Valium please see Dr Marshall in This FAQ.
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
judithann
Member in Phase 2/3
|
Posted: Sun Aug 27th, 2006 17:20 |
|
Well Hello All
I can't believe that I have not written since the 19th. I have increased my Mino to 50mg. I can not say that things are any harder, about the same.
I have tried the zinc oxide and will report my finding in that study, but I will say I have lots to learn!
I am Herxing with more joint pain, sometimes it feels like the legs are going to fall off at the upper sockets. I have not seen such a thing reported....so I imagine that they really will stay intacted
I have had more chest pain this past week but I am solely convinced it is from my stomace. I cheated for the first time on the MP and had a piece of Cake,(it was our 30th wedding anniversery) You know what; that 1 piece of cake did to me...it started me craving for sugar!!! For days I felt hungry and unsatisfied when I ate. MAN OH MAN how I craved for sweets,
I have also found that when drinking de-caf coffee I suffer from sweats, my body goes from feeling chills to overheated,,,unless I just think it is the coffee and it is simply Herxing...which is NEVER simple at all. I do not use sugar but I do use cow cream.
I am planing a small three to four day trip to Visit my Mother, but I do have a nice dark house to reside in while I am in Fredericton. However It will be well lite in the Pallitive Care Unit. When I am at the hospital visiting, I know I must wear my NoiR, but must I keep covered up on my arms and legs when indoor there?
I can for the three day increase my Beni to four times a day. What so YOU think?
I am kind of afraid Barb to take the Valium for the back spasim, I often have terrible reaction to this type of medication...so I am trying some things like warm bath, massages, supported with pillows, light vibrators ect... those charle-horse like pain sure can make you yell out!! Whew reminds me of when I was expecting a child and I would get them in my calfs of my legs
All in all I am very pleased with my progress. When I started on this Mp I was so cripple that I was in two arm braces and two knee braces. I could not get in or out of the tub, nor lift anything heavier then pound or so. At night when I layed in bed my bones hurt like a throbbing toothace, and my breathing was so laboured. I would lay there feeling how terrible sick I was. I knew that for 47 years old there was no way a body could continue on like that. I could feel the Sarcoidosis sucking the life right out of me. Most of all I was very sad because there was no help I am no longer in braces and can get in and out of the tub. My lungs are not the best but they have improved. Most of this began to turn around when I completely stayed in the dark!! I have some dilly days when the Hex is rocking my boat...but HOW COMFORTING to know that I am healing during those times,,,germs are being killed off and my body is responding.
Be of good courage folks, these days, weeks , months and years of the MP have a great promise of a better tomorrow. Besides where would we be without it. I will tell you sick, sick, sick and then some!
Keep in touch, always welcome words of wisdom
As Ever Judithann
Last edited on Sun Aug 27th, 2006 17:24 by judithann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
prugg21
Health Professional
| Joined: | Wed Mar 15th, 2006 |
| Location: | USA |
| Posts: | 303 |
| Status: |
Offline
|
|
Posted: Sun Aug 27th, 2006 20:03 |
|
Hi Judithann,
About valium, I am unbelievably drug sensitive and do fine with small doses of valium (or the generic diazepam, which I do best with, I know valium works better for most with Th1 inflammation).
What I did with the diazepam was to get 5mg tabs and divide it into quarters, so I started off with a very small amount, 1.25mg. I've found I can handle 2.5mg quite easily and even 5mg if the pain is more severe. It has been an absolute life saver for me at times since starting the protocol and has the added benefit of helping with my sleep. I have side effects that are hardly worth it from every other sleep or pain med I've tried, but not really with the diazepam.
I always try extra benicar first before I use it though, as I don't want to over use it.
I hope this is helpful for you.
Pam
____________________
MCS/CFS/FM,22+yrs,Gerd,migraines,insomnia,avoiding light & D,NoIRS,benicar 3/30/06 40mg Q4-6H,mino,4/18/06,mod/ph2-
10/17/06,probx,estriol, 3/06-25D=27,9/06-25D=26,11/06-25D=21,4/07-25D=22,7/07-25D=19
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sun Aug 27th, 2006 21:49 |
|
Thank You Pam.. I hope this is helpful to you J..
Judithann,
re light:
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
Beware of Natural Light thru skylights and blinds which may appear to be closed, but are letting in natural light. Wear the % NoIRs which will still allow you to see safely but protect you from glare. recommend if you can, take spares in case of breakage.
Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal..
What precautions do I need to take when I am going out or when traveling away?
re your legs while driving: suggest either wear long pants (safest), or have a throw to cover your legs if you are not actually driving.
all best, Barb ....
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
judithann
Member in Phase 2/3
|
Posted: Fri Sep 8th, 2006 09:12 |
|
Hello All My friends
I am back from my journey. I have spent the past few days visiting my Mother in pallitive care. It was a remarkable time. My sisters (3 of them) and I had a hoot with my mom. I think most of it attributed to the fact that we were visiting her between 9pm and 11pm. Just seems that when we are a little tired...we are a little more silly. Mother enjoyed our silly laughable moods so incredibly much!. My sisters treated me like a blind person, always grabbing on my arms to lead me here and there! I told them over and over that I could see through my dark glasses, but then after the third day I gave up and was lead around!!
My Mother went to her church last Sunday and sang a song she wrote. I could not miss that! I did the Zinc thing plus covered every part of my body I could(with layers too!) and ventured out to hear her. I was exposed to natural daylight like I have never been since the beginning of my MP! I took the extra Beni, covered up everything, plastered my face...and I still had a reactions to the light!!!! awww don;t feel bad, it was worth it..She sang from the soul and I was so blessed...ain;t that nice.
I am going to stay at my 50mg of Mino for a nother week or so and then I want to go up to 75. My blood work which I have done evey second week has stayed the same over the course of treatrment..so all is well. My BP is on the low side staying at about 80 over 55, that is fine especially when one is resting and repairing!
I am going to report my finding with the Zinc in more detail on that thread.
I am not back to myself yet, as I am still recovering from my trip, both with the light and with going harder then my body is use too. I have time to recoup as Mother is feeling somewhat better and will now go home again until her next downward slide. I guess we all did her a world of good. I wish I could share with you all, a picture of a beautiful hug that she gave to my sister(I love taking real life moment pictures.) it is the most beautiful good-bye hug from mother to daughter ever!! My sister had to travell from afar and may not be able to return until Mother's funeral.
Anyway to all of you following this sight, remember that being well is so worth the cost of the Protocol. Life with abundance of health is then a life worth living, When raising my five small children, on days that were really hairy, I had this wonderful little saying..."This too shall pass" It is also a great saying on really hairy HERXING days..."This too shall pass"!
Hey Barb...did ya miss me?
As Ever Judith Ann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
judithann
Member in Phase 2/3
|
Posted: Sat Sep 9th, 2006 13:54 |
|
Hello All
I am having a really hard time. My upper leg sockets...joints are so inflamed and the pain so terrible. It is preventing me from sleeping very long. I will wake up every 15 to 30 minutes with such aching. Sometimes I feel like I have slept much longer but a look at the clock will reveal that I had only been under for a few minutes!!!Weird!
I have taken 600mg of Ibuprofen and it did not even daunt it. I also increased a extra Beni but it changed nothing. I have done a hot bath (several) and a rub down, but the tooth-like throbbing pain resist all remedies. It hurts to sit,(I tell my family my bum-bones hurt) that cracks us all up , it hurts to lay and it hurts to wallk...I am beat right out!!
On the upbeat...maybe germs are in a fierce battle and the germs are losing...hope..hope..hope!
I have to be careful taking meds as my stomach bleeds easy, soooo, I am going to increase the I Ibuprofen to 800mg taken with lots of food and hope to calm it dawn...a wee bit!
Open to any help at all....in fact folk...HEEELP!!!!!HELP!!!!!!
As Ever...a very tired Judithann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sat Sep 9th, 2006 15:53 |
|
Judithann,
Severe, intolerable pain needs serious medicine. Since the Ibuprofen didn't touch your pain before, and it increase your risk of gastrointestinal bleeding, you may want to ask your doctor for something stronger. Please see PAIN CONTROL
Best,
Meg
|
judithann
Member in Phase 2/3
|
Posted: Mon Sep 18th, 2006 04:13 |
|
Hello All
My the time is sure passing me by . I have been very under the weather and thus my slacking off in my postings.
I seemed to have hit some kind of Plato where I am feeling very wore out. I can not engage more then 10 to 15 minutes in anything without being so tired that I need to lay down! It kind of reminds me when I had my first episode with the sarcoidosis. I was so tired that I would go to bed at 12 noon and sleep till early morning get up and be ready for bed again at noon again.
I have noticed some changes in my body, breaking into sweats, always worst at the night and then I chill down and I start all over again. My joint pain is also on the increase and I can no longer time it, to my medication,,,as in "today is a mino day"
I must admit that the severity of pain, as from my last entry has calmed down to a more bearable level. I kind of feel like I am losing some ground, because when I began the MP, as soon as I decreased my light exposure, I had results right away, in my joints and even my breathing. Now I have some joint pain, wheezy and I am so so so tired. My stomach had a constant ach too....that could be my chest.
You know even when I think of coming on line to post I will say...aww I'm just to tired. I do not seem interested in TV, I can not read because I can not focus and it hurts my eyes too. I dare say that I am doing just about as nothing as someone can do nothing!!!
SOOO I am not all sure what this is all about. Having expressed this let me also say that I am as determined as ever to carry onward through this protocol.
I must make a better effort to keep on post! For I understand the importance of this journal of progress!
Miserable in the Miramichi
As Ever Judithann
PS Is it okay to recieve the flu shot??? Thanks
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Mon Sep 18th, 2006 05:53 |
|
Judthann
Thankyou for your post..
Each time you post, please list your MP meds in an index format at the
beginning of your message. Posting an Index of your meds schedule and dosing at the top of your post is imperative for Staff replying to assist you, and for other Members for reading and understanding .. We look forward to your Information..
see FAQ Should I get the flu shot?
Thank you, all best, Barb ..
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
judithann
Member in Phase 2/3
|
Posted: Mon Sep 18th, 2006 18:50 |
|
Mino 50mg x 48 hours
Benicr 40mg x 6 hours
losec 20mg x 24hours
Is that what you want me to do at the beginning of each post Barb?
Today I am very tired, right to the bone. I did seem to sleep pretty well. I woke a lot but fell back to sleep,
I am going to sleep extra through out the day today too.
As Ever Judith Ann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Mon Sep 18th, 2006 21:17 |
|
Judithann
Thank you. posting the Index is helpful to those reading and replying....
Good that you are resting.. Rest is a very important part of managing and healing..
By being pushed to the limit of tolerable herxing our body is working to capacity.
Your trip and light exposure experience may also be having an effect.
take care, all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
judithann
Member in Phase 2/3
|
Posted: Tue Sep 19th, 2006 15:35 |
|
Benicar 40gm X 6hours
Mino 50mg X48hours
Losec20mg X 24hours
Hello Barb
Just a quick note to express my thanks. I also want you to know that I am off to see my dying Mother again. I will travel by night and stay out of the daylight!
My nurse was just here and found my pulse increased incredible from the lying position to sitting, and feels the heart needs some further investigative medical attention. So she is to be in touch with my doctor, and she seemed very concerned.. .. .. maybe this is why I am feel so completely tired out!
I shared with her that these things are brought on by the Sarcoidosis disease and not by my medications. Anyway things will have to be furthured monitored and they will have to draw a conclusion as to "What the old ticker" (heart) is up too. She also told me that the shorness of breath could have to do more with the heart and less with the lungs!
Anyway I am off to Fredericton tonight unless I get hulled in by the doctor before I leave town. Kind of feel like a teenager trying to sneak away before dad gets home! hahaha
I will be in touch
As Ever Judithann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Tue Sep 19th, 2006 21:38 |
|
Judithann,
I believe your nurse has unnecessarily frightened you. It's unlikely she knows much, if anything, about sarcoidosis and its proper treatment. With your extensive pulmonary inflammation, it's likely that you also have cardiac involvement. Even if your heart is untouched by inflammation, the poor oxygen perfusion of your lungs forces your heart to beat faster, not the other way around. Tell her that you are already on the only treatment plan known to resolve cardiac inflammation and fatigue is to be expected as you recover.
Please refer to our website info on SARCOIDOSIS, Pulmonary Involvement (PFTs), Tachydardia and the section there on cardiac involvment.
You will have to educate her so that her misplaced concern doesn't cause you further anxiety.
I hope you have a lovely visit with your mother. Please give her our regards.
Best, Meg
|
judithann
Member in Phase 2/3
|
Posted: Sat Sep 30th, 2006 05:47 |
|
Ben 40mgx6 hours Mino 75mgx48hours
Hello Meg..and my dear Barb:
I have again returned from the city where I have been with my dying Mother. I was such a good girl while away. I stayed in the darken house and continued on all my meds and rest. I am still at an all time exhausted low!!
Meg, I was so pleased to receive your e mail before I left for Fredericton, cause as I said I was feeling like a teenager sneaking off before my doctor was alarmed by my nurse. I did smile Meg when you stated that she had caused me undue concern....I was thinking...well now Meg, if I was that concerned about my heart I would not be slipping away to see Mother...I would be on my way to the hospital. I must tell you, that you did make me smile with more confidence.
I think the heart is Herxing, and I am sure it was affect by the sarcoidosis. I am not being foolish or glib about how serious this needs to be taken, but I am already doing treatment with this MP, and I am so very careful to follow the full extent of this MP. If I rest anymore then I now do...well I would be in bed 24--7!!! There are indeed days, when I have been in bed all day too. I am sick, very sick and that is why I found you folks and it is why I am careful and caring!!
Now I must tell ya Meg....there was a message waiting for me from my favorite doctor(he is my only doctor hahah)too. My White cell count was way down again and I am to call him..that will be done on Monday. I am sure I will hear about the heart report. So I have decided that I will go see him, in person, the up coming week. I also need a new prescription for 75mg of Mino...and in the following month 100. I believe that I will be ready for my forms by the end of October. I will once again encourage him to go on the forum, and get the Stage 2 plan! If he does not then I shall continue to simply ask for the medications and go fourth! I am sure that when he and I have a face to face and he see that I am still very determined, he will relax a bit more. I sure wish we had doctors to chose from...such a shortage in my city....thousands have no family doctor at all!!! They must be treat at clinics and at the ER. TERRIBLE!!
I am looking very pale, is that because I get no sun...or is that because my white cells are low, or is it because of the disease...just wondering!
Having lots of herxing in the muscles, joints, chest, sores in my mouth and my bottom is raw, sore and hurts to pee. I am not discouraged...honest! I do my thing...rest and repair! I am resting when needed, eating moderately, and have began a new project...making my new granddaughter-to-be a puffy baby quilt and valences...pink checker with the :My Little Pony" theme...I can not wait to see her!!!! I MUST GET WELL
Barb I will be more faithful in my journals as I am home again. I did three posters for my Mother...One of her children Then and Now (8 of us)...one of all 21 of her grand-babies when they were little...and one of her great-grandchildren which she has seven and one on the way! Anyway she was moved to tears to see the "Fruit of her Womb" as the Bible would say. It made her feel very fulfilled...I am so glad I journeyed to take it to her. God Love Her !
Thank you all for all the love, support, advice and especially your time. You make the difference between failure and success.
Loving, As Ever, Judithann
Last edited on Sat Sep 30th, 2006 05:48 by judithann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sat Sep 30th, 2006 06:32 |
|
Thank you Judithann
Good to see you are determined and managing well..
To help you prepare to see Dr: Before Phase Two: I dont see any D tests in your signature line.. It is recommended that you test 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?
This FAQ for when it is time: How do I know if I'm ready for phase two?
see this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information, after which, we encourage Members to begin a new progress report in the Phase 2 forum to discuss recommendations re their new meds and dosing in preparation for your Dr visit. Thank you.
see info: My white blood cell count is low. What should I do?
What do my lab tests mean?
As you said, you are sick.. so pallor is not a surprise.. good that you are resting and taking care..
When you go to see your Dr: If you need temporary relief of your symptoms ask your doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL are okay to take to relieve intolerable symptoms.
Have you tried extending the mino dose out toward 72H to see if it gives you less herx/ a breather? Some find the 3 day dosing gives more herx.. dont let it go to intolerable, take your dose at a shorter time if necessary to hold your herx at tolerable.
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
judithann
Member in Phase 2/3
|
Posted: Sun Oct 1st, 2006 00:23 |
|
Mino 75mgx48h Beni40mgX6hour
Thanks Barb.
I did have my D tested and I only received the 25-D not the 125-D...it was lost so I was told. Dr Marshall said I had already had a confirmed diagnosis of Sarcs therefore did not really need the D's anyway. My 25-D was low around 14...I can recheck this by going back on my first forum sight, which I will do and give you all the EXACTS later.
I do not find my herxing intolerable. I would, if I had any other responsibility, other then getting well. The truth is Barb this is really no worse then what the disease was causing. I think I will simply leave everything as is in the med department, although I did increase my Mino to 75 this week!
I started this program in late June and my first blood work was in early July. at that time I was on the 25mg Mino every 48 so that low dose could not have dropped my WBC. I do not think backing off my Meds will help. I read the WBC thread which says if your Doc is concerned, one could lower the dose of Mino...since this problem was there when, all I had. was 25mgx48h, how could that make any difference?
I really believe I need to just go forward with the MP. I will inform my Doctor that I am applying soon for the second phase. I am going to be firm and determined with him!!! I have no other hope or option here for wellness!! If my low WBC puts me in danger of infections....well I will take the precautions that Chemo patient would!! WHY NOT!!! They do not take them off Chemo because the WBC count goes down. Because it is the only treatment and hope they have. SAME HERE.
Should I wait until I hit 100 Mino before I do the Questioniar...or read through it now. I await your direction! If I understand right, I e Mail to receive it?
As Ever, Judithann
ps 25-D was 14,8ng/ml.
Last edited on Sun Oct 1st, 2006 00:30 by judithann
____________________
MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
|
Current time is 09:07 | Page:   1 2 3 4 5 6   |
|
|
|
|
