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Aunt Diana
Moderator
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Posted: Wed Feb 15th, 2006 13:43 |
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Well, I'm back at 50mg mino Q48hrs. Took first dose last night and am now keeping a diary to see if I can determine a pattern.
If I can find one then I'll try to take the mino so I'll herx while sleeping....it's a theory anyway. JRFoutin suggested it and it makes sense to me.
Otherwise nothing extraordinary today, minor aches and pains but that's par for the course.
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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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Aunt Diana
Moderator
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Posted: Fri Feb 17th, 2006 07:29 |
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JRFoutin was kind enough to send me a form that helps to identify responses and herxes in a chart. I started to use it today in hopes that I will eventually be able to make out a pattern so I can work my plan.
Have been extremely exhausted now for days....I don't think I've ever slept so much in my life...very achy also...sometimes wake up dreaming about the achiness. Advil helps.....last night I woke up around 4a.m. in a good deal of pain...forced myself to take Advil and I could actually feel it when it started to work. Read for a while....or tried to read...and fell back into bed. Slept off and on til 2.p.m....felt like I slept all day yesterday....all this sleeping is unbelievable to a person who used to have to take a sleeping pill to sleep at all, at any time of day.
It's not fun, and I wouldn't wish it on anyone but I believe my body is "healing itself" with all this sleep and rest.
Ir's "catching up" to all that lost sleep in the past and all the non-healing and frenetic behavior.....I used to be totally compulsive about getting things done at certain times....a real driver of a person....no more....I'm hoping that this enforced resting is what the doctor ordered.
So I've adjusted my thinking to stretch out my mino doses to 3 days. I will take my next 50 mg. dose of mino tomorrow, after I've accomplished some tasks I need to do, that I have been unable to do during the last two days.
I can see that no matter how hard one would want to "rush" this program...it is not possible..one's body dictates.
Thanks for listening, once again..
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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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Aunt Diana
Moderator
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Posted: Tue Feb 21st, 2006 08:26 |
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I'm finally over my "runaway herx" and have been dosing at 50 mg mino every three day, then every two day day, then every three day, and so on. I'm trying to decide what is best....maybe keeping this 2day/3day schedule will allow me to herx but not to build up to much steam.
I'm feeling pretty good right now, the second day of the third mino dose, very little herxing but some. Should I continue like this for a while or do you think it's time to move on to 75....but treating it 2day/3day for a while. Is mild herxing as good as "tolerable" herxing?
My next dose will be my 4th at this particular pattern.
Any comments?
I fell asleep in my chair today and when I got up to bed fell right back...no need for sleepin pill.....however I woke up at 1a.m. and fear I will need ambien to fall back to sleep.
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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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Aussie Barb
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Posted: Tue Feb 21st, 2006 08:57 |
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Diana
For information to help you, see the precautions / instructions in the Phase One Guideline see NEW Addendum. some have it printed to check with regularly.
and I'm eager to get well. How can I speed up my progress on the MP? mild herxing is fine. It is good to gain the experience.
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aunt Diana
Moderator
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Posted: Tue Feb 21st, 2006 18:26 |
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Thanks again for the feedback, Aussie Barb. I re-read the information and am now convinced that slow and steady is the way I want to go. I'll keep up the Q3day mino dosing at 50mg until I find I have no herxing.
I much prefer the mild herxing and it's probably easier on the system. The bugs are still dying....that's all I want.
It's unbelievable how many times you have to tell me the same thing before I "get it" but this is a pretty complicated situation. I'll forgive myself.
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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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Aunt Diana
Moderator
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Posted: Fri Feb 24th, 2006 09:17 |
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Hello again everyone,
I have just awakened from the "dead". I took my 50 mg mino on the Wed. around 4:30 (3 day dosing)....went to bed that evening around 8:00. Slept through (except for benicar awakening) until 9 or so in a.m. Started to make coffee...decided to go upstairs and fell asleep until 5.p.m... came downstairs for two hours and went back to sleep til 11pm.
That's a total of 21 hours of sleep in the last day....is this normal?
I keep telling myself that it's allowing my body to heal but I want to be sure.
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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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Aussie Barb
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Posted: Fri Feb 24th, 2006 10:20 |
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Diana
Rest is indeed a very important part of managing and healing.. It is important for All to make sure of having adequate rest.
By being pushed to the limit of tolerable herxing our body is working to capacity
The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines and combined with the Essential aspects of diligently avoiding Light and vitamin D.
You must determine what you consider tolerable for you.
There is no harm in waiting it out if it suits you..
or in adjusting your meds if you wish to experiment with a change.
it is all good experience gained toward Phase 2 and on..
If and when you wish, do not hesitate to use meds adjustments.
Tools to check:..
Check these options one at a time to assess and adjust your own situation.
check the precautions / instructions in the Phase One Doc.. and
I'm eager to get well. How can I speed up my progress on the MP?
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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jrfoutin
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Posted: Fri Feb 24th, 2006 21:11 |
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| I've done sleep like this. Usually, I feel pretty good the next day so I figure I needed it. Sounds like you are are just doing what is needed at the time. If it goes on for longer than a couple of days, then that might mean some concern, but one day here and there lost in slumber has been helpful when I needed it.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Alayne
Member in Phase 3
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Posted: Sat Feb 25th, 2006 02:50 |
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Aunt Diana, I second Janet. Through my years of illness, I've had bouts of sleeping a day or two away. Sometimes three. I always felt better afterwards and felt in my gut that my body had done what it needed to to get some healing taken care of. When you think about it, doctors will induce comas in some patients to aid the healing process. Our bodies know (at least sometimes  ) when to shut down and get to work. We heal faster and better in the deep stages of sleep. That's why they're called the restorative or rejuvenative stages - for both body and brain.
Of course, if you turn into Rip Van Winkle... Take care...Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds: MThistle/Calc&Mag/Lysine
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Aunt Diana
Moderator
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Posted: Sat Feb 25th, 2006 04:01 |
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Thanks you guys....JR and Aylene.
That's sort of what I felt but my "driven" personality has a real problem with the concept I may be turning into a "layabout".
The other thing that occurs to me.....I haven't really slept a "natural sleep" (without some kind of sleeping med. for so long I can't remember) These sleeps I'm having now, when I just fall asleep, have a different quality to them.
Again thank you for your support.
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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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Aunt Diana
Moderator
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Posted: Wed Mar 1st, 2006 17:47 |
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I haven't posted in a while so I thought it was time for a progress report.
Am still at 50mg mino, 40 benicar Q6 (after tryin 75mg a few weeks ago, I don't think I'm ready for that since I'm still herxing at 50 and had a runaway herx at 75)
I've been experimenting with 3 and 4 day dosing of mino....I think the 3 day is good because I am still herxing lightly the 3rd day...even sometimes into the 4th.
Yesterday was a really good day....I was up early and moving around much more easily. I finally finished some sewing projects that I must have started a month ago and have been in a pile in my bedroom driving me crazy. My husband and I went shopping last night and actually went out to dinner.
I felt like people thought I was either a famous person or "on the lam" because of the dark glasses....I caught a few stares, now and then. It was funny. Another advantage was I think we got extra good service....when I asked if they could turn the music a bit lower they did...and the manager came over to the table to apologize with great flourish.
Sometimes it pays to look mysterious.
I'm planning on staying on the 50 mg until I get through my move and until I stop herxing on it. Is that about right?
Once again, I would like to thank everyone for their support....this protocol would be almost impossible if it weren't for the website. My husband and I often discuss how "brilliant" it was to create this....and that this is the best possible use of the internet. "Hats off' to Trevor Marshall and his fabulous team.
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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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Aussie Barb
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Posted: Wed Mar 1st, 2006 19:11 |
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Thanks Diana
re "I'm planning on staying on the 50 mg until I get through my move and until I stop herxing on it. Is that about right?"
You are doing well, getting a feel for the meds, gaining experience. as long as the herx stays tolerable or milder at that level is fine.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aunt Diana
Moderator
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Posted: Wed Mar 15th, 2006 03:29 |
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Well, I know I've been remiss in posting but things have been difficult around here lately. We are trying to sell a house so we moved all my furniture over there to "cozy it " for the spring market. It also made sense that I should stay there during the heart of the winter...it's a bit easier in the cold...attached garage, better heating system et. and was a lot easier to live in as a "cave". But this past weekend we moved out and back into my house which is great on one level because I love my house, and am anticipating enjoying my beautiful garden as it gets warmer....I'm fantasizing of sitting out at night just to be out there....but it has been physically depleting on both of us. And now we are sitting here in a house with no furniture...just beds for us and a good comfy chair for each and the kithchen table and chairs. We're sort of camping for a while. When our other house sells we will of course move everything back over here....but it's actaully been sort of peaceful....no TV , no radio, no bright lights....we've been camping.
I stretched my 50mg mino doses to 3 days...sometimes 4 during this time. I still find the third day can be pretty tough herx wise....I don't know why...but the fourth day is usually easy.
My herxes are not intolerble...but they are definitely there. Today I slept til 12...made it to an appointment...came home and crashed again til it got dark.
went for blood tests today and will report them as I get them. It's hard to know If I'm feeling improvement...small things seem to be improving...sleeping and falling back to sleep are a huge improvement. I feel like I'm finally doing the convalescing I should have been doing since I got sick...I alwasy fought to overcome it...it should have rested more. And now I am. It feels good. My mood lately has not been great but I blame tht on family pressures and all this physical stuff my husband and I have had to take care of;
I am so loooking forward to the warmer weathr...best to all
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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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Aunt Diana
Moderator
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Posted: Fri Mar 17th, 2006 01:21 |
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We are finally moved and fairly settled. I have been sleeping a lot and have been having some pretty strong emotional herxing. Very teary and feeling very sorry for myself kind of thing. Yesterday was a bad neuro day for me...the worst I've had in months, and it made me realize that one of the symptoms I used to have on a fairly regular basis has seemed to disappear...my face would droop...I would lose muscle tone and it seemed to go flat at least once a week. Before when I would have a neuro problem that would always be there (the facial droop)....yesterday it didn't happen and today my neuro problem has cleared up. I noticed there was a full moon yesterday and am wondering if that has an effect on the neuro herxing?
Physically I am still somewhat achy and itchy, but not bad, have some minor digestive problems, I'm sleeping well and feeling good when I lie there in bed....I had totally forgotten about feeling actually nice sensations...they seem to be returning. Just feeling good for moments here and there.
Last night I actually listened to some music and really enjoyed it and sang along with my stereo....haven't done that in a long time.
We haven't hooked the TV up yet, and that's been a nice vacation. I'm starting to wonder if it's good to watch all that TV just to get through the days. Sometimes there's good stuff on, like history channel, but a lot of it is just depressing, particularly the news.
My question for today is: I'm contemplating upping my mino dosage to 75 every 3 days. Any opinions on this? Since I am still mildly herxing I am somewhat confused....of course I want to kill as many bugs as I can....do you think I'm ready? I know of course, that no one really knows, but if anyone has and suggestions I'd love to hear them. (Currently I'm taking 50 mg every 3 days.
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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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Dr Trevor Marshall
Research Team
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Posted: Fri Mar 17th, 2006 01:54 |
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Hey, Aunt Diana, lets not have any talk about faces changing during a full moon
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DianeC
Member in Phase 3
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Posted: Fri Mar 17th, 2006 02:57 |
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Hello Diana,
That is wonderful that you will be finally settled back in your home with all of the conveninces (I can't spell anymore ) Camping can be quite unsettling especially at a time when you are trying to get well
Yes it sounds like your garden will be a source of great peace for you; it won't be long now as spring is just about here Enjoy that time
As far as increasing your dose, I am no pro but have just recently upped my dose to 50mg q72h You had mentioned that you had a runaway herx when you started 75mg before. How many doses of 75mg did you take before that happened? What kind of herx was it?
The reason I ask is that I have only taken 2 doses of 50mg so far and have not really noticed increased intensity of herxing but different types of herxing symptoms; for instance I am now herxing through the pores of the skin.
I think that the increased dosage can creep up on you; that you will feel okay but then all of a sudden the cumulation of a few doses can really hit you...bam!
You sound like you really have a handle on your dosing If you feel that you have a day where there will not be too many demands on you; that may be the day to try it once more and you can always go back again to 50mg. That is the beauty of this protocol
Best wishes always
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Aunt Diana
Moderator
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Posted: Fri Mar 17th, 2006 03:05 |
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Thank you Diane, for your intelligent input....don't you just love this support group on this website.
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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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Aunt Diana
Moderator
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Posted: Sat Mar 18th, 2006 22:27 |
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Greetings to all.
Unfortunatley, my husband had to go into the hospital yesterday for what looks like congestive heart failure. I was planning to ramp up to 75 mg. yesterday but of course with this turn of events I have to wait. One of us has to be well.
I skipped my mino dose altogether so now it has been 5 days since last dose...I am still herxing, mildly but definitely so I guess this is not that bad.
I think they will send him home tomorrow...they're running lots of tests but he's feeling 100% better since they got that fluid out of his lungs.
Is it a problem that I am still at 50 mg. mino halfway into my fourth month on the MP?
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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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Aunt Diana
Moderator
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Posted: Wed Mar 22nd, 2006 06:02 |
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Hello everyone,
I finally know what will be next after 5 days of my husband, Bill's hospital stay. Tomorrow he will undergo triple bypass surgery. I am actually relieved because I knew something was wrong and I am confident that he will be better after he heals. And everything I've heard about this operation has been positive.
It poses problems for me as far as my continuing the MP right now....at this point I've been off mino for a week or so. I will start it up again the minute things start to resolve. From what I understand this shouldn't be too awful. If I am to believe what they tell me, Bill will need a week or so in the hospital and I don't want to be herxing during that time.....is this okay? Or should I tough it out and start the mino again. I'm afraid of a bad herx which I've had several of. Woe is me.
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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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Aussie Barb
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Posted: Wed Mar 22nd, 2006 06:12 |
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Diana
The key is to be tolerable at all times, and that is regarding during and coping with all of Lifes circumstances, so if you cannot manage to do the mino now, that is fine.. whatever you can manage most easily.
all best wishes for the op and after - for both of you. take care, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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