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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Sep 25th, 2005 07:14 |
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WEEK 24 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg QOD - five weeks
Today I had (and am still having) the longest yet period of feeling relatively good........from about 3P this afternoon to now - 145A. That's over 10 hours folks!
I had lots of errands to do and find that Saturday evening is the very best time to go shopping. Dusk currently arrives here around 700P, so on a feel-good day, I'm dressed, fed, hatted, masked, Noired, and out the door by 630P. On Saturday there is little traffic, and I can get from store to store quite easily.
I would like to be sure that I do have this one "special" time every Saturday evening. Question: 1) to just take mino MWF, so that Saturday is always a Day One and Sunday is Day Three, or 2) take mino every Friday, regardless of QOD scheduling, so that Saturday is always Day One.
My main symptoms are still: overwhelming fatigue and mental slowness. I also have various short-lived pains, a few twitches, and an "almost" headache.
It's amazing that I no longer need Premarin....hot flashes nearly gone!!!
My schedule is weird, but it's based on being up and about during times I feel good. Mornings are always a total fog.....no motivation, no energy, no nothin'. I get up for 9A Benicar, read newspaper, eat granola, check computer; back to bed around 11A; up at 1P for B. and lunch; back to bed from about 3P to 5P.
Then (generally on a Day One) I start getting a little energy, and the fog partially clears. This state lasts until about 300A-400A, during which time I fix dinner, read the MP posts, deal with mail and other desk work, possibly clean, possibly cook something for later in the week, watch some TV, read books, and generally have a good old time. Last night I went to a play with a friend......a real social event for hermitess me.
Since I divide the mino with water, I can easily have a little "half-step" between 25mg and 50mg. Before doing that, I'd like to get some work done in the garden. That would mean working every possible evening in the 15 minute period between dusk and dark. My headlamp is useful for certain procedures, but not for all.
It's exciting to be in on the ground floor of this medical breakthrough.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sun Sep 25th, 2005 07:26 |
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Sharon
Thank you for posting your progress..
re Q 1. you may do entirely whatever is most comfortable for you.. going for 3 days, - the herx may become too uncomfortable. The herx schedule may change at any time as well.. The aim is to achieve tolerable herxing by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
re half steps: we do not recommend half steps.. see FAQ Why have you changed the starting dose of minocycline? says in part: Anecdotal reports of beginning at and in increasing the MP antibiotics in increments of 25 mg have been positive.
But anecdotal reports of beginning at and in increasing these antibiotics in smaller increments than 25mg have not been positive.
It appears that the antibiotic dose needs to be changed a significant amount to alter the immune system response. Dr Marshall has said, "The body/immune system can *get used to* a dose level and can stop responding."<<<
see Increasing Tip for another method if it is required..
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Sep 25th, 2005 07:36 |
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Barb..............VERY GOOD INFO. THANKS!
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Oct 2nd, 2005 10:39 |
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WEEK 25 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg QOD - six weeks
Friday night I prepared myself mentally to make a run at 50mg. My herxes, while debilitating, were getting slightly better. I was having a little more productive time during the day.
At the last moment I decided against it because there are so many projects that will need my unfogged attention in the next few days. For instance, my dishwasher and range are both expiring at the same time. This means comparison shopping, arranging delivery times, etc. Then there's all that asparagus in the fridge from which I planned to make soup. And there's the big bowl of granola ingredients that I mixed five days ago but can't get enough oomph to mix and bake.
So, I decided I needed just a little more time at 25mg. But Saturday I had my worst herx yet......a first day herx. Where did that come from? Sun protection levels have remained relatively constant. On Thursday I met a friend for lunch, and we sat outside on a shady terrace, but I was covered and Noired. Is it possible that a potential over exposure to IR on THURSDAY could provoke a herx on SATURDAY?
Instead of ramping I have decided to try some of the herx reduction strategies given on this board. In the past I have tried mino Q24H. It helped somewhat. I think I give Q72H a try to se what that is like.
If I can't have some control over the herx, then I'm a virtual prisoner by never being able to make any plans.
I want to do what Dogster suggested: just knock me out, feed and medicate me by a tube, and wake me up 18 months later. That's the best scenario I can think of.
Cursory reading of this site gives me the idea that CFS patients are having a harder time. Any comments on this?
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Frans
Member in Phase 2
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Posted: Wed Oct 5th, 2005 16:24 |
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ShrnHml wrote: Friday night I prepared myself mentally to make a run at 50mg. My herxes, while debilitating, were getting slightly better. I was having a little more productive time during the day.
Sharon, remember that the phase I doc states in paragraph 10 that you shouldn't try to speed up recovery and stay at each level of mino until the herx is minimal.
Glad to see you are on the move !!
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Oct 10th, 2005 07:18 |
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WEEK 26 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg QOD - seven weeks
This week was a lot like last week. I did 25mg mino MWF. So Saturday should have been a Day 1, or feel-better day. Not so......very BAD day. I missed the memorial service for the son of a dear friend. I wanted to be there, needed to be there, but could not get out of bed for anything but food and water. Quite a disappointment.
I wonder why Day 1 is often the hardest for me. Does it mean I'm not reacting right?
Barb.......please comment if you can.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Mon Oct 10th, 2005 07:29 |
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Sharon
The aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
To achieve this you may have to adjust your dose or schedule at any time.. eg when you cannot get out of bed and you need to, you could try the Benicar @ Q4H or you may need to take your mino 25mg more frequently to slow the herx.. see the precautions and options in this FAQ and the links within it.. My Herxheimer reaction is too strong. What should I do? you may wish to see if you need to increase your mino to 50mg QOD.. Should the herx move towards being more than you wish to tolerate, taking a mino 25mg should slow it down..
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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Dogster
Member in Phase 3
| Joined: | Mon Jan 24th, 2005 |
| Location: | Kansas USA |
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Posted: Mon Oct 10th, 2005 15:50 |
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Sharon,
impressive about your hot flashes quelling so quickly!!!!!!!!!!
I had times when had worst herx on first day rather than second day. Dont think is anything to be concerned about-- now it seems to vary.
I think everything is cumulative, so worsening of symptoms/herxes/light exposure effect can happen later (at least do for me).
Light requirements will vary, at least they do for me.
I also often cant get through cooking/baking. Get muscle spasms in shoulder back, followed by fatigue and cognitive ditheries and have to go lay down. Which is annoying because I like to eat, especially good food.
You mean you are up at 3 am? Eventually the Mp will straigten your sleep shifts out; you can look forward to that.
I cant seem to control my herxes as well as some (and especially still need a lot of pain meds) so it is unpredictable (cant' plan); but then I havent been able to plan for 20 years anyway . . ....
Cheers, Dog
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Oct 17th, 2005 05:03 |
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WEEK 27 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg QOD - eight weeks
BIG NEWS: I went to 50mg this week!
Strangely, I felt better (relatively) this week than any week since starting the MP. I did take the advice to do a 50, then a 25, then back to 50.
So it looks like I may not flunk the course afterall. ..........Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Dogster
Member in Phase 3
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Posted: Mon Oct 17th, 2005 14:07 |
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Sharon,
looks to me like you are doing pretty well. It seems to be an up and down ride, though. So you are another cfser with 25 years in, huh. I look back and really had it even as a kid and teen. You too????? Dogster
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Oct 23rd, 2005 07:31 |
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Hi, Dog.............. I have spent a LOT of time wondering when this came on.
Just a couple of years before I KNEW something was wrong, I was being my usual over-achieving self......physically, intellectually, socially, etc.
Now that I understand the MP, I can look back and see that there were clues. Being from a family where there was very little sickness, and the only thing in the medicine cabinet was a bottle of Campho-Phenique (sp?); I tended to ignore little things.
In my twenties there was a toenail fungus which my dermatologist cultured and could not identify. My chest pains began in college. My lower abdomen became permanently bloated where I had had surgery to repair damage from childbirth.
Years later, I could still play tennis several times a week but had to give up running because my legs gave out at half a block......the repetitive motion thing. I had very low blood pressure and very low temperature years before getting sick. Other stuff, too.
So great was my expectation of having unlimited energy to do all the things I wanted to do, that my sickness only became apparent when my tennis game went downhill. I must have been running on my battery several years before realizing I was out of gas.
Was it a tick bite on one of many childhood camping trips? Was it an infection from the post-birth operation? Was it years of living a high energy life that finally took its toll? I will never know. All that matters is that there is a cure and there are people like you and other MPers to share with.
Take care..............Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Oct 23rd, 2005 07:41 |
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WEEK 28 OF INTERRUPTED PROTOCOL - Weekly report
Mino 25mg QOD - seven weeks; 50mg QOD - two weeks
I am still amazed that I feel better on 50mg than I did on 25mg. The main symptom is still profound fatigue, but I can tolerate well the various aches and pains. This week they are in my neck. I guess every part of my body will be revisited eventually.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Wed Oct 26th, 2005 02:41 |
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I was dreading going from 25mg t0 50mg because I had felt pretty bad at 25mg. However I had been there for six months and decided it was time to go for 50mg.
Now I feel a lot better. Shouldn't I feel worse?
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
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Posted: Wed Oct 26th, 2005 07:31 |
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Sharon
If you have come to a time where you feel the herx has settled and you can comfortably tolerate more herx, you may wish to increase your dose to 75mg..
The First and Constant Guide to the Marshall Protocol is the Phase One Doc.. Please check all precautions / instructions.. some have it printed to check with regularly. and it is important to follow it exactly as written for Safety and Efficacy of the treatment..
see If antibiotics are effective at very low doses, why do we ramp up the dose?
You may wish to be preparing for Phase 2. see How do I know if I'm ready for phase two?
Where can I find phase two and three?
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Thu Oct 27th, 2005 05:39 |
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Thanks, Barb.....it's always good to be reminded to re-read the Phase 1 doc. Even after reading it 10 or 20 times, one forgets.
On another subject:
I went to my PCP yesterday to make one last try at getting him on board with the MP. After he took my blood pressure, which was 78/?, he said "no way". He said he could lose his license for prescribing Benicar for someone whose blood pressure is so low.
He also said that blood pressure this low can bring on "ischemic optic neuritis" and that I should go to an opthalmologist to have my eyes checked.
I used the search box with no results. I am not worried about this, but I would like to know if this has ever been discussed. (Or was my PCP just trying to scare me?)
Any comments would be appreciated.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
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Posted: Thu Oct 27th, 2005 06:13 |
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Sharon
The ARB (Benicar) and the antibiotics do not cause the symptoms or the disease; they make the symptoms evident. The cause is your inflammatory disease. Even if your symptoms become subclinical without the ARBs and antibiotics, they will remain (and get worse) until the Th1 inflammation is resolved.
see HERXHEIMER REACTION
HERX .... What is it?
There are many helpful tips here. see SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP
PRIVATE SECTION FOR MEDICAL PROFESSIONALS for your Drs interest.
BENICAR SAFETY STUDIES and studies supporting the benefits of Benicar
If you do have any concerns re your eyes, by all means do have them checked.. see Will Herxing cause increased eye inflammation?
AVOIDING SUNLIGHT and BRIGHT LIGHTS
How and why to protect skin and eyes while on the MP
EYE INFLAMMATION and Th1 diseases
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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Posted: Thu Oct 27th, 2005 13:13 |
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Sharon,
Surely your doctor knows by now that you research the Internet regarding medical conditions? Ischemic Optic neuritis is caused by hypertension (high blood pressure) and inflammation.
Using their education and good judgement, doctors prescribe medications off-label and at higher than usual doses all the time without losing their license. I check my blood pressure monthly when I run a local B/P clinic for the elderly. Yesterday it was 70/52 with a pulse of 84. I felt fine and have not suffered any ill effects from taking Benicar for two years.
Best,
Meg
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Nov 7th, 2005 04:45 |
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Meg...........
That's reasssuring to know that you are functioning well with a BP of 70/52. Both my MP doc and PCP are amazed that I seem to be doing okay with such a low BP. At least the MP doc will listen to me and be reassured that this is not a problem. She wants to know more about the MP, so I sent her all I could find relating to BP.
One of these days she will be an expert and will allow her name to be published on the doctor list.
Thanks for your comments...................Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Mon Nov 7th, 2005 04:54 |
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WEEK 30 OF INTERRUPTED PROTOCOL
Mino 25mg QOD - seven weeks; 50mg QOD - four weeks
I did not post last week because things were basically the same. I am just waiting to ramp to 75mg....waiting for a time when I have nothing on my schedule that I might have to miss.
I feel everything is going well with fatigue still being my main herx reaction. The other aches and pains do not really bother me.
I find myself looking forward to a new life.....including playing tennis again.
The MP is a miracle!
Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Tue Nov 29th, 2005 05:44 |
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WEEK 33 OF INTERRUPTED PROTOCOL - Three weeks since last post
Mino 25mg QOD - 7 weeks; 50mg QOD - 4 weeks; 75mg QOD - 3 weeks
My plan was to move up to 100mg mino this week, but I have caught some kind of a "bug" which started as swollen glands on left side, moving to painful ear, throat, jaw, and face. I have been in-bed sick. Is this a herx, maybe?
Sleep - great variation in times. Up 'til very late mostly and sleeping a lot during the day.
Pain - various places but mostly in hip joints and especially when I wake up. (I sleep on my side.) I have had this pain occasionally for years and learned to predict how bad I would feel that day based on the hip pain.
Muscles - sometimes feel like lead.....like trying to walk through water. Hard to work with my hair, as arms get too tired. Tongue and jaws get weak when eating.
Blood pressure - I only remember the top number. Two weeks ago was 69/? one week ago it was 72/? I do not feel dizzy, but I do have to move up from a sitting or crouching possition slowly.
Nasal - nose drips when I eat. I know it's food allergies which I have had from the beginning.
Confusion - opening the cabinet door when I meant to open the fridge door. Can't seem to organize papers: taxes, insurance, bills, projects, MP print-outs, newspaper clippings, computer tips, etc. Every now and then I get an hour or so of clarity when I can look at an item and know immediately and exactly where it should be filed. Boy, is that fun. I know those periods will get longer and more frequent as I move along the protocol.
Weight - gained six lbs.This a lot on my small 5'2" frame. Clothes are uncomfortable. Anyone else reporting gaining weight?
Activity - about 15% of pre-MP. It's very hard to make advance plans when I don't know if I'll be able to keep them. It's hard going out at all, even to the grocery store. Just maintenance of self and home takes up all energy. I have thought about signing up for Meals on Wheels.
Mental state - stable.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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