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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 762 |
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Posted: Mon Jun 2nd, 2008 14:48 |
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Progress Report #10 - What I noticed going back on the MP from break: It seems to me that symptoms can disappear and you don't realize they've disappeared until someone else mentions having them or you get them back.
Well after going back on the MP and re-experiencing the exhaustion IPR that I get with just Benicar alone, I realized that I was once again experiencing the feeling that I was oxygen deprived (like I was not getting enough oxygen in my lungs). I had not noticed that I was not experiencing this symptom while on break. Yipee! More progress!
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Deb Grabetz
Member in Phase 3
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Posted: Tue Jun 3rd, 2008 16:22 |
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...and you deserve to see progress! Nothing makes me happier than to hear a great progress report through this journey of yours....
Hugs my friend, Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Fri Nov 21st, 2008 18:05 |
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Progress Report # 11: It's been a while since I've reported progress. What is said about the differences in abx is true. For me, Mino proved too much to handle during the first 14 months and instead of being palliative at higher doses, kicked my butt all the more. I made the switch to a different abx going back into mod phase 2 and took up another combo to help with my kidneys before facing Phase 2.
At any rate, I began Phase 2 on October 29 (22 months into the MP). Yes, slow and steady wins the race and for some of us, slow is very slow.
Here are a few "small" improvements that I've noticed.
I have had to walk around my home with proper shoe insert supports (Superfeet, as the doctor supplied ones did not do the trick) since the spring of 2004. I am now able to walk around my home on hardwood floors in my socks witout experiencing additional foot pain! Yea!!!
The incidences of shortness of breath are decreasing.
When I started phase 2 (at half the dose of most given my past experience), thus far many of my old sxs came back (my second combo on mod ph 2 was quite nearly a break); however, thus far, my overall pain is reduced.
My hair seems to be growing more quickly. Year before last I got by with just one haircut (cut short in the winter when I'm wearing a scarf to cover my neck and let to grow long to help provide coverage in the summer). Well, this year I had to cut my hair in August and will be cutting it again in the next week or so because it got too long and annoying. (Also, the hair on my forearms seems to be returning.)
I can get by around the house without my NOIRs now with 25watt bulbs directly next to me and 40watt at a distance. Also, if my computer screen is turned down and at a distance I can watch a movie while I knit, which I need to do without NOIRS. If I use the computer up close, I have to put on the NOIRs and turn up the background light. Bright days are still uncomfortable with 2% NOIRs, but I no longer suffer neurological sxs as a result of having to go out during those times (though the discomfort can be enough to send me home if it is bright enough). (I try to stay out of the light unless absolutely necessary.)
I can now go into any store with florescent lights and survive (hope this keeps up). I can even go into Walmart with 40% NOIRs...unbelievable.
I know I'll have to go back on Mino eventually, as it really kicks CWD butt for me, but in the meantime, I was able to start Phase 2 and let the primary drug in that combo start working its wonders and reducing my CWD even more before the day when I start the mino back up.
Well, that is it for now. Hang in there everyone. One moment at a time.
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
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Posted: Mon Nov 24th, 2008 04:52 |
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Claire,
I am so happy for you! It is good that you are adjusting well to phase II. Your improvements with light sensitivity are wonderful and bring tears to my eyes!
Keep on keeping on!
Michele
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RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
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eClaire
Member in Phase 2
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Posted: Sat Mar 28th, 2009 05:39 |
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Today I am despondent, which is not my norm (and not IP). I have been on the MP 2 1/3 years and have yet to turn the energy corner. In fact, my post exertional fatigue (how long it take me to recover) has gotten dramatically worse since last fall.
My energy, which has been worse since being on the MP (entirely bedridden first 4 or 5 months), leaving me just slightly better (and I do mean slightly) than being bedridden since month six. Even as I have gotten over being bedridden, last fall when I started Z (only tried it once) and my kidney labs increased again (for the second time) my energy took a turn for the worse. (Because of sxs and kidney labs, I am back to M alone and just dropped back to 50mg after my creatinine rose from 1.57 to 2.14 when I ramped to 75mg. It had fallen from 1.66 to 1.57 while starting back up on M and the 25 and 50mg levels.)
I went from being able to expend 30 to 45minutes of energy one to three times a week to being at point where if I do that I have difficulty fixing a simple meal for days or weeks on end. Severe post exertional fatigue. I haven't seen anything like this since one year before starting the MP.
I wonder if there are others like me who got not only worse when it came to fatigue when they started the MP, but much worse two years in. Did you eventually begin to turn around.
I mean, I can tolerate indoor light in my eyes now. Florescent included. So I can see improvement. Yet, the excruciating nature of this fatigue has me feeling like I am just prolonging my death. Sorry, but I am bummed, losing hope.
Claire
P.S. Note that I have read the MP site regarding kidneys and high labs are also a sign of needing to cut back on the abx. I am not off the abx; just cutting back because symptoms were escalating to near intolerable and creatinine was already at 2.14. Cutting back to 50mg Mino is not going to reduce the labs to normal any time soon. I am still killing plenty of CWD. I understand that I have to keep going with the high labs. I just choose to try to keep them below 2.0 if possible for wiggle room purposes. Right now the kidney labs seem to at least be a clue that CWD killing is going on.
Last edited on Sat Mar 28th, 2009 06:02 by eClaire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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BARNEY
Moderator
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Posted: Sat Mar 28th, 2009 07:43 |
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Claire,
Do you feel that some of your depression is the fact that you are spending more time at home and while being on MP needing to rest and not get to be involved in something 'fun' to do.....in other words 'same ole, same ole'. It really bothered me that I could not do or get done things that I wanted to do. I also felt depressed enough due to the fact that I felt that I was not seeing a light at the end of the tunnel, so to speak. Did I hit it or miss it?
If you have not read PeterHK's posts in Phase 2/3, please read them.
I have a link I would like you to read while I keep searching for what I think is the right answer for you. Give me a little time and I think I can come up with a good answer. I don't want to give you bad suggestions. And remember I only have one kidney and my December 08 creatinne was high, but this month was back down.
http://AutoimmunityResearch.org/transcripts/WCH_2008_
seminar_transcript.pdf
Hang in, I will be back with more answers.
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,
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Karon
Member in Phase 3
| Joined: | Thu Nov 15th, 2007 |
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Posted: Sat Mar 28th, 2009 16:20 |
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Dearest Claire,
I have not written to you in months......So very much going on.
I read everything you post ,and look forward to it. You are a light for me.
I want to reach out and hold you today, and let you have a good old fashion cry. Most times I want you to hold me and let me cry (in safety).
You are not one to whine and complain...always helping others, so I know when you are down, YOU ARE DOWN..
All of my reading and reading tells me that you are half way there! Being so tired is the most common IP. It does feel like slow death sometimes, like we are wasting days and months sleeping and unable to do the day to day life chores. We both know that this is NOT TRUE! We are healing one minute, one day at a time. I am almost 12 months old now in MP time, so you are more than twice my age....I envy you!
I feel that this is your storm before your calm. All is as it should be...Your body is working hard....But remember, it is working now.
A beautiful poem about this exhausting, and spirit testing IP would be an amazing gift from you. You are an amazing writer!
YOU ARE NOT ALONE!
I know I am only one of hundreds, that have so much love for you even though we have never met in person.
Today my dear, I cry for you.
I am sending angels to give you strength of mind and spirit, and it wouldn't hurt to have a few "feel great days" too.
Love, pure and unconditional to you,
Your MP Sister, always listening.......
Karon in Ca.
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LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
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eClaire
Member in Phase 2
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| Location: | Virginia USA |
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Posted: Sun Mar 29th, 2009 12:26 |
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Well, Barney, I really do not think this is IP. I think I am just experiencing a perfect storm of sorts, as having "fun" has never been big on my agenda since I experience a lot of joy just being alive, though I do admit to missing gardening more than perhaps anything (Claire's idea of great fun). The unrelenting fatigue IP is wearing me down psychologically/spiritually, and I am in the middle of the one-year anniversary of the break up process with my ex-partner...having nightmares and the whole nine yards. Friday I also experienced the earthquake PTSD type feeling of "I can't believe she left me the way she did," which I hadn't had in a while, as I was beginning to feel as if I was turning the corner on the grief. But grief has its own plan and can knock the wind out of you at any time. Friday was a baseball bat sort of day (meaning, I was getting the wind knocked out of me).
I am feeling better this morning--that is, I am not so despondant. I sort of gave myself over to it, rolled around in it a bit, felt the grief fully (the grief of the betrayal, the break up, and also the unrelenting nature of the MP), had my little pity party, let the mud settle, and found myself face to face with the sublime, and now I'm feeling better emotionally, more in touch with myself. Still supremely tired of being tired though.
Thank you for your concern and the tip to read PeterHK's PR. I'll search that out.
Karon, thanks so much for your dear note. It meant so much.
However, I admit to jealousy when it comes to sleep, as I am not sleeping well (at least I could escape the fatigue if I were sleeping). My insomnia has gotten better in that I am now getting more sleep on a weekly basis, but boy am I tired of not falling asleep until 4:30am, 6:30am, or even later. (Funny, I seem to be more exhausted now that I am sleeping a bit more.) Right now, I've been awake since 2:30 pm yesterday. (And yes, for anyone reading this and wondering, I spent between 1:30am and 6:30 am this morning in the dark resting, waiting for sleep to come, but resting in case not...I'm betting on 8:30am this morning, as I am finally feeling sleepy now that I'm looking at a computer screen.)
I have not posted much on lifestyles.com or written many emails in months as I have felt the need to keep to myself and I usually honor what my soul seems to want. (Having roommates seems to use up my interactive energy.) Despite that and the relationship grieving, I've experienced a good deal of joy.
Thanks so much for your angels and all the unconditional love sent my way. I'm looking forward to a few of those feeling physically great days.
Namaste, Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Freddie Ash
Member in Phase 3
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Posted: Sun Mar 29th, 2009 15:19 |
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HI CLAIRE
This is Fred in WV. Here is my 2 cents worth on your low energy and the creatinine levels. I remember you saying on one of the sites here that you were going to use a hot tub. If you did and it was hot enought it may have brought on the IPs.
What happened to me a few weeks ago was after I took my evening show I would spray my whole body with hot water and this brought on a very strong IP of rashes itching & burning in my ankles, shins back & elbows. I stopped this and the IPs stopped. My legs even swelled up and that is mostly gone too.
On the creatinine, when I first started the MP mine got as high as 3.6 and my doctor called wanting me to stop the Benicar but I never did stop it. On March 2 blood tests showed my creatinine at 1.5. It has been slowly going down for some time now. So as Barney says, "HANG IN THERE, WE WILL MAKE".
I hope this helps in some way.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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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
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BARNEY
Moderator
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Posted: Sun Mar 29th, 2009 18:29 |
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Claire,
First, let me say I can understand your feeling such a loss for losing your partner, I lost my husband almost 11 yrs ago and then when I started dating again ended up with one that broke my heart after 4yrs, next one was a bad choice, so I prayed about it and just decided to make my children and others my life, then a door opened and here came a wonderful partner.
I was well down the road getting well on my MP and I feel now (with hindsight) it was good that I was alone during the first 3 yrs....it gave me more time to concentrate on me getting well. Yes....it's lonely and I shed a whole lot of tears in those first years. Then, I would pull me up by the bootstraps (so to speak) and put on some favorite music or tv show or go visit Granny who helped me keep my sanity. Now Granny, is not my Granny, she is my 86 yr old friend that helps me think clearly since I lost my mom 31 yrs ago.
I am not wanting you to feel sorry for me, it is all well now.......but, what I am trying to say....when one door closes, a better one will open. Hang in there, work thru MP with all the energy you have left, and things will get better.
This is how I survived MP............everything including depression is an IP (and it is) and I dealt with it with MP meds. The only nonMP meds I used were pain pills and Zyrtec when the pollen was high, just because it dried the mucus up so I could breathe thru my nose.
I hope my silly little story helps you to get to a better level spirtually and emotionally.
Suggestions that I think help...........sleep when your body tells you to....do not try to force it...it is okay to sleep in the daytime even tho we were taught differently and be up at night....until that part settles around, drink plenty of water (I find when I do not....the IPs intensify). I am on no abx at all and all that I have to lower IPs is Benicar. You could try no abx for a while and let the immune system do their job w/Benicar and see how you do. Remember the IPs including depression were there before the MP (some you did not realize were there), so it is the disease, not the Benicar.
Fatigue....it is one of the worst IPs...but....it too lessens as you farther along on MP. When it hits...I have learned that I just sit or lie down and take a little xtra Benicar. Fighting the IPs only seem to make them worse for me.
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,
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eClaire
Member in Phase 2
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| Location: | Virginia USA |
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Posted: Sun Mar 29th, 2009 21:44 |
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Thank you Barney. I am sorry for your loss and glad you had another opportunity at love.
I am glad I am on the MP and not tempted to palliate my grief with a bad relationship. (I have no desire to be in relationship right now.) I'm in a good spot for grieving and focusing on for me getting well physically and I appreciate that. Also, I am not prone to feelings of loneliness. Though I have been affected by the isolation brought on by disability, that isolation has been virtually eradicated now that my good friend and his son are living here and helping to care for me. I have teens coming to the house, friends of Eric's coming to the house, his betrothed, a good friend of mine, coming to the house more often and so I am good in that department.
I really do not think all my not so fun emotions are IP related. It is relatively clear to me when they are, as they are free floating and feel "extra" or heightened (that is, they have a sense of not belonging to me not being of me). Mostly, but not always, my "feels like an emotion" IP is limited to irritability, which was the primary affect of the illness pre-MP. However, I do a very good job of containing that, as I realize the source (that is, I am able to separate the source from the people around me).
I also drink about 1/2 gallon of water a day. And althoughevery so often I am tempted to try to get my body to sleep through the night, I always come back to the conclusion that I have to sleep when I am sleepy or risk not sleeping at all.
Freddie, I think you may be on to something about the baths, but I'm not sure.
I have read the MP warnings and because of that have continued the baths from day 1 so that they remain a constant factor (so that their influence does not cause a spike in sxs) in an experimental sense. I do this because baths are meditative for me and I've been doing them my whole life. Being in water seems essential to my life, my very being, to my psychological wellness. Also, sometimes that is the only way I can get warm. I will say that there have been times where I am so exhausted that I do not bathe for a week and I don't notice feeling any better for not doing it.
Baths will also help me sleep more than just about anything, as the rise and then the drop in body temperature when I get out of the tub seems to help bring on sleep.
Benicar on the other hand seems to hype me up and make sleep more difficult. I am beginning to think I ought to take benicar about two hours before I think I will feel sleepy.
Thanks for your suggestions. I will try taking benicar two hours before when I might feel sleepy (based on when I last was sleeping...in general I feel sleepy about 6 to 14 hours later, depending on whether I had one or two bouts of sleep closely together). I'll see how that goes, and then I'll give up the baths to see whether that has any added affect.
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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eClaire
Member in Phase 2
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| Location: | Virginia USA |
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Posted: Tue Mar 31st, 2009 00:13 |
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Barney,
I'm laughing at myself right now because in addition to irritability IP, I frequently have anxiety IP. (The main way anxiety was showing up pre-MP was in paying my bills, which had never been a problem before...just the sicker I got.) The MP has really brought that out, but since it is not connected to anything in my life, I find it pretty easy to ignore except when it comes time to fall asleep. Then, it interferes. Funny how you can get so used to something it doesn't even register any more. The good news is that I can do my bills now without much anxiety at all, and so while I have lots of free floating anxiety IP, where it counts I have less.
Thanks for reminding me to look more closely at the emotional side of IP. I've been giving it more thought and think that I may have been hit harder Friday--my real feelings may have been supersized somewhat (and even a little bit, given what I was grappling with, would have been enough to significant)--because Benicar really exhausts me, and if it really exhausts me, it may also have contributed to the intensity of my depression.
You see, I increased Benicar to 40mg q4h on Monday evening in response to my kidney labs. However, increased Benicar only palliates neuro symptoms for me and nothing else. Instead, increased amounts of Benicar (and increased frequency of dosing Mino) only serves to increase my immune response without palliation, which is why I usually try to stay at the q6h dosing schedule.
This morning I was lying in bed after waking up from sleep and so tired, as if I were oxyen deprived (even the sides of my neck was hurting, which is a sign that I've really over done it...I over did it sleeping). It was like I had been climbing a mountain and had pushed myself to near passing out.
That was it for me! I'm backing Benicar down to q5h today and back to q6h by Wednesday because this fatigue makes me want to invite the grim reaper into my life.
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Deb Grabetz
Member in Phase 3
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Posted: Tue Mar 31st, 2009 23:22 |
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Oh Claire, the mention of the  , had me rolling on the floor with laughter, not at you but with you, that even in the midst of unbearable IP...your humor still shines!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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eClaire
Member in Phase 2
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Posted: Tue Mar 31st, 2009 23:54 |
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Well, I'd never take matters into my own hands, but hey, if s/he (the reaper) is standing outside the door wondering whether to enter, my illness has certainly made me call out at times, "Hey you! What are you waiting for?!"
Speaking of gallows humor, when I was most down last Friday, I thought to myself, "All I'm doing is prolonging my life... ... ... ...dragging out my death," which was promptly followed by, "Of course, after the age of 30 we're all doing that." I think I need some lessons on how to seriously wallow without levity.
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Karon
Member in Phase 3
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Posted: Wed Apr 1st, 2009 15:44 |
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So Happy to read your Feeling Better Claire......
You have made my morning.... LOL....THANK YOU!
Mr. Grim taunts me too! BRING IT ON!
XOXO
Karon
____________________
LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
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Aunt Diana
Moderator
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Posted: Thu Apr 2nd, 2009 05:13 |
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"From the moment we are born, we begin to die..." wish I could remember who said that. Thomas Moore? I am not sure. but I do believe there's truth in them thar words.
That is, until the MP came along. I think we need a new catchphrase for those of us who actually are experiencing a youthening bunch of symptoms, as our bacteria slowly exit our bodies.
I'm excited to see what surprises may be in store for us.
____________________
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
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Sallie Q
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Posted: Sat Apr 4th, 2009 04:40 |
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hello Claire
I do think the experience sometimes called Depression is a natural protective mechanism for someone who is suffering trauma from accident or infection INCLUDING cwd infections; also protects brand new babies from their Mums bouncing up and getting back into what they used to do and forgetting all about needs of the baby.
[n.b. I am taking the evolutionary or long view on this last obviously]
So, in my perspective you are right not to think of your low moods as just IP 
If ‘twere me I would think oh poor me it was so sad [true of some things in my history]
THEN would think
ah, have low mood , so when I wonder why, I remember time(s) when sad things happened, but I believe depressed shows I need more rest  maybe I have or am about to get significant IP or maybe for some other reason need rest [e.g. not slept well recently need to catch up]
hope you can follow my logic
anyway I’m pretty sure there have been a few who reported bouts of worst case well into even phase 3 for some. And my doctor has told me I am not to attempt anything out of the daily grind until I have been on phase 3 for six months  (heaven only knows when that will be, I’m still on ph 2)
last night I slept well on Zith level 3, cycle 2 with 75 mino, slept badly for a couple weeks b4 that on 50 mino. Was worried about not enuf sleep so on 8 hourly beni because not getting back to sleep after morning pill. Next time I will try and remember your tip on taking the benecar an hour + before bed and do a warm, not hot bath before lying down. Thx for that
just read yr more recent posts, “laughter, the best medicine” just as well my partner is paying the bills or I would be in jail for debt for sure  have to remember the anxiety which stops me from anything to do with money is just IP after all, thx again
p.s. hope springs eternal and don’t you forget it
____________________
20yrHotFlushSjogrensCFSb.cancer1990stress57-83 60%dysreg.vD 13.2 Sep08ph1 NoIRlowLux JanModPh2 May09Ph3 25DMay19ng/ml,Aug11.2
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eClaire
Member in Phase 2
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Posted: Sat Apr 4th, 2009 04:53 |
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Thanks Sallie, I won't forget it. AND I noticed that you are already in Phase 2. 2 1/3 years and I'm revisiting phase 1 only ever trying Zith once. It's all a matter of perspective. Me? I've been sick my whole life and totally disabled since 2003 (hanging on by my fingertips most of the other time). I'm having plenty of IP thank you very much just where I am and I have the kidney labs to prove it. And so my revisit to phase 1, though disappointing, isn't phasing me. Ha, ha, ha, ha. Oh my. Can't wait until a doctor has to order me to take it easy, as my body orders me around enough. My doctor is celebrating that I have new roommates because as he tells me, "You can't get better unless you get rest." I get the rest of most 105 year olds.
Thanks for your note! Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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BARNEY
Moderator
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Posted: Sat Apr 4th, 2009 13:44 |
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eClaire and Sallie Q,
I woud like for both of you to watch and read the following links and if you have already read and watched them please do it again as it is a learning tool:
The video of the seminar is at:
http://www.vimeo.com/2599416
Transcript: http://autoimmunityresearch.org/transcripts/WCH_2008_seminar_transcript.pdf
ALSO, Dr M has revised the Phase 1 which you will also want to read and print out. It no longer advises 8hr Benicar dosing....it is now minimum dosing of 6hrs.
I hope this will help you in your MP journey.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 762 |
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Posted: Sat Apr 4th, 2009 16:47 |
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Thank you Barney I had watched the presentation, but had not read the transcript.
One of the things that has been affirmed for me is that I have fall into the group of the sickest patients. Indeed, I had out of control IP for the first 4.5 months and barely controlled for the first year and 1/4. I had to take a break to reduce shoulder pain IP (and kidney IP) that was so bad that it made any movement difficult. My kidney issues rather than lasting 1 - 6 (as is mentioned for most) have lasted for over a year. When on Mino and Clindy (for 8 months), I could only take the abx twice a week and had one day a week where had a good 4 hours and the rest of the time I could not distinguish any waxing or waning in the sxs between doses and my symptoms were near to intolerable. Indeed, while I ramped Clindy, I was unabe to ramp Mino due to intolerable IP every time I tried to ramp.
Also, my kidney labs (creatinine 2.14 and GFR, which is now 23 or 24) track that of the patient mentioned in the transcript except that taking Benicar q4h makes my fatigue so bad as to be intolerable. For example, I would wake up from being asleep for four hours or more and feel as if I had seriously overdone it with intolerable IP. That is, while still lying in bed--having not moved--I could not get my breath and the sides of my neck hurt--death felt around the corner. This has always been a sign pre-MP of me pushing myself to the point of intolerable symptoms, and yet I had been sleeping. (That had never happened before.) Also, my fingers were swollen all day instead of just in the morning. This, I don't think, could be a very good sign for the kidneys.
I've now tried q5h and q6h and I immediately got relief from both the absolutely crushing fatigue and swollen fingers by switching to q5h. Q6h seems to be too little at the moment and so today I am trying q5.5hours, splitting the difference. I'll go back to q5h if that is what is needed.
I am taking it slow and easy because I have to, and yet look forward to getting through Mino again and then to Mino + Bactrim and then Mino + Clindy. I hope when I take Mino + Clindy this time that I will be able to take it q48h and ramp Mino as well as Clindy while keeping the IP tolerable. Doing Mino alone this time around is easier (except for the kidney labs), and so I can see much improvement in that regard.
I am looking forward to the day when elevated kidney labs will be a thing of the past.
Then, once I get through Mino + Clindy, I will be ready to try Zith again.
Right now, though, I am just beginning to see a reduction in some sxs and a waxing and waning of sxs in the 48hour cycle. This is a first and it took over two years to get here.
Slow and steady.
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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