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Reenie
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Posted: Tue Oct 26th, 2004 15:55 |
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carol says, "I am still off Armour thyroid and low dose Cortef and have no negative effects from this as far as I can tell."
Although you don't feel any negative affects, it's imperative you try to wean off of Cortef, especially before beginning Phase 2. The new Phase 1 instructions reflect this.
You will also need to watch for increase in herx, in doing so, since cortisones will slow down the immune system. Once I began to wean off Cortef, I had a stronger herx. You may even need to lower your dosing, depending on how this affects you, Carol.
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carol
Advocate
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Posted: Tue Oct 26th, 2004 16:29 |
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Reenie:
When I said "I am still off low dose Cortef" I mean I am no longer taking low dose Cortef. I am not taking ANY Cortef (unlike previously). I guess I did not word that in the most straightforward manner.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Reenie
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Posted: Tue Oct 26th, 2004 16:36 |
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Thanks for clearing that up. 
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jdc
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Posted: Tue Oct 26th, 2004 17:39 |
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Dear Carol,
In looking at your two recent posts: your progress report and your comments yesterday in one of the threads, I am much impressed by your progress. It seems to be born out by your lowered vit D ratio as well as your lowered 1,25 D. It will be interesting to see how your ACE changes.
I gather that your main worries are the problems in your wrist, the herx symptoms, the mood swings and the fatigue. Regarding the mood swings: I have the same problem and have noticed that cortisol levels play a huge role. I wouldn't be at all surprised if your reduction in Cortef so rapidly from 20 mg. to 5-10 has had something to do with this. When I play around with my Cortef dosage I literally add subtract grains from my individual 5 mg. tabs. Prior to the Marshall protocol I was also using licorice and Siberian ginseng to substitute for Cortef (as mood elevator and potentiator). Of course these would appear to be violations of the protocol.
I realize that herx can have a major effect on fatigue but my own personal experience, as a person who doesn't herx much, is that Cortef/cortisol also is a big-league player.
In reviewing the whole set of changes you have made in the last two months, it looks to me that the arrows are definitely up and up dramatically. I'll bet the corner you are talking about is rounded pretty soon as your body adjusts to all the changes, including the lowered Cortef. My own strategy is to move as soon as I am able back into athletic mode so that I can rely on metabolism to rid myself of toxins and rely upon natural mood elevation that comes from a good workout. This was what always sustained me before getting sick. The great advantage of vigorous exercise is that it also normalizes your sleep cycle. I have learned over time that the number of hours of sleep isn't the critical factor, not even the seeming restfulness but the hours of your sleep. Sleep before midnight is almost always more valuable than sleep later.
Your experience with massage doesn't surprise me a bit. My friend MZ is a massage therapists and reports similar stories.
Ji
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PA 6/2000; started protocol 8/2004 Vit D 40/22; ACE 70;Minocin, 100 Mg.; hiatus for surgery from 3/17--4/17/06; 5/1/2006 restarted phase one, retesting of vit D 25: D
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Reenie
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Posted: Tue Oct 26th, 2004 21:34 |
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jdc,
You say you're on Cortef, but don't have it included in your sig lines. Please include ALL meds prescribed by you physician in your sig lines. This really helps the researchers and has become part of the info to be included in your sig line.
You may also want to note, that the MP instructions have been revised and a weaning off of ALL cortisones is now recommended, including Cortef.
TIA
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carol
Advocate
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Posted: Wed Oct 27th, 2004 00:21 |
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jdc:
Thanks for taking the time to post your detailed and thoughtful reply. I think you are right to point out that my agressive reduction in Cortef is likely playing a role in increasing my fatigue and mental funk.
It's nice to have someone who's slogged around in these trenches offer up a hopeful opinion regarding the status of things. I guess it's that problem of being able to see the forest for the trees.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Aussie Barb
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Posted: Thu Oct 28th, 2004 04:58 |
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Carol,
I have been thinking about your going off your hormones and the effect that may have had on your body trying to keep in that time of exertion..
some observations & thoughts to throw around..
we seem to be observing that dropping the hormone doses increases herxing...? & you had had the more dramatic type herxes.. is that right...
& My body needs more hormone for doing more work. like it is the fuel that I am running on...
& throw into that mix, the 1,25D fluctuations.. 
that is all for now, thanks always for posting  Barb.....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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carol
Advocate
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Posted: Mon Nov 22nd, 2004 00:35 |
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Dear Friends:
I have been on 100mg minocin every other day for over two months now, since September 16th. My herx symptoms, which were quite significant, are 90% gone. The RA symptoms are somewhat better overall. My feet/ankles are definitely better, but I’m still waiting for my wrists to improve. Someone else will have to peel the potatoes and lift the turkey out of the oven this Thanksgiving.
I’m wearing the noirs diligently and cave dwelling. I am particularly aware that the fluorescent lights in big stores make my eyes hurt these days. I have been struck by how often I am asked if I need any help when I walk into an establishment with those damn things on. Nothing makes a person look quite so pathetic as a pair of Spectra Shields!
We’ve had lots of rain in recent weeks. I’ve noticed that on really gray, rainy days, I can “cheat” and go out before dark without ill effects (w/ eyes protected, of course). This is not true if it is bright overcast.
I had my blood drawn on Friday for a whole slew of tests. I am very curious to see the results. My doctor’s appt is December 6th.
I feel ready to start Phase 2. In fact, I already have my zithromax and I just sent Meg a request for the revised Phase 2 protocol.
Well, I wouldn't call these last few weeks a dramatic "turning of the corner". It's been more like a long, slow march toward wellness. But I know I'm moving in the right direction!
Best to all,
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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carol
Advocate
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Posted: Mon Dec 13th, 2004 23:27 |
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Dear Friends:
This will be my last “official” post for Phase 1. I started phase 2 on 12/6/04. I have just posted my latest D metabolite results in the General Questions forum and expect there to be some discussion of them there. Suffice to say, my 25-D is won’t budge, and I now know why Trevor says not to get hung up on following the 1,25-D during the first 6 months of the MP.
July 11, 2004 Sept 10, 2004 Nov 20, 2004
1,25-D 65 31 64
25-D 32 35 34
The July numbers are my pre-MP values. I took high dose vit D supplementation for two years prior to this. I’m starting to think that I may have gotten so loaded up with D that my fat cells just don’t know how to start letting go of it!
I stopped vit D supplement and eliminated D from diet end of June. I started Benicar Aug 11 and Mino 2 weeks later on Aug 25. I have been at 100mg mino since Sept 16. I have been wearing 2% NoIR outside, on those rare occasions when I go outside, and 10% NoIR inside since early Sept.
Here’s how some other lab data from Nov 20th compare to data at the start of the MP:
June, 2004 Nov, 2004
Alkaline phosphatase: 104u/l 129u/L
Triglycerides: 206mg/dL 159mg/dL
CRP: 1.5mg/dL 1.1mg/dL
WBC: 11.2 8.9
ANA: positive at 1:160 n/a
I think this means everything except alkaline phosphatase is moving in the right direction, albeit modestly.
My thyroid and adrenal function test results were normal, which is great since I have been off supplementation for both for awhile now.
The herx from Mino has subsided significantly. The RA symptoms are definitely moving in the right direction.
Let the serious bug killing begin!
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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DaveW
inactive member
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Posted: Tue Dec 14th, 2004 01:12 |
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Knock em dead Carol! We're all back here cheering for you!
I hope to follow you into stage II soon.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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carol
Advocate
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Posted: Thu Dec 16th, 2004 11:54 |
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Dear Friends:
I have completed cycle 1 of phase 2. Ever since I started the MP, I have struggled to wake up for the 6am dose of B+Q. I have shuffled into the kitchen with considerable early morning RA stiffness and pain. I have taken a Vicodin in addition to the B+Q and gone back to bed for a few hours.
For the last few days I have noticed a significant change in my early morning routine. It's easier to rouse from sleep at 6am, I have much less pain/stiffness at that hour. I don't take any pain medication until later in the day. I go back to bed, but not for as long.
I am noticing bony prominences on my wrists and ankles that I didn't know were there.
Best Wishes to all,
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Reenie
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Posted: Thu Dec 16th, 2004 22:12 |
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Hi Carol,
Have you considered leaving your 6am dose of B on the nightstand? I doubt I'd be able to get out of bed for mine like you do.
I have had an occasion or two, well maybe three, where I've shut the alarm off, in my sleep, only to find I hadn't taken my dose until 9 or 10 am.
It hasn't killed me yet though... 
PS Do you think you've decreased some swelling and that's why you have more prominent bone?
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carol
Advocate
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Posted: Fri Dec 17th, 2004 00:04 |
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Dear Reenie:
Yes, indeed, the bony prominences are absolutely due to less swelling. (After I wrote that, I thought it might not be obvious what I meant.) After years of RA (diagnosed in '96), you forget what those wrists and ankles are supposed to look like. I have damage that I know is irreverable, but I have high hopes for considerable improvement once the active inflammation abates.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Big John
Member
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Posted: Fri Dec 17th, 2004 01:24 |
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All right Carol!
I had metioned a while back that I actually saw my knee cap and ankle bone! Its great! Imagine those people who just kinda wander onto this sight and see grown people excited about seeing their bones. What a life! Glad you are progressing well!
John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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John McDonald
Advocate
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Posted: Fri Dec 17th, 2004 12:34 |
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I am a fence sitter with RA, avidly following Carol's progress as a model for my own future treatment. Now that she is on phase II, will she continue to post here?
John McDonald
RA, Dr. Brown's AP for 10 months
haven't persuaded doc to measure D yet.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Meg Mangin R.N.
Research Team
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Posted: Fri Dec 17th, 2004 13:26 |
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John,
Anyone on phase two or three may post in the general discussion forum or in progress forum but their messages cannot be specific about the antibiotics they are taking. I hope that will meet your need for information.
If Carol wishes to discuss the details of either phase two or three meds, she will need to post in the phase 2/3 forum.
Best,
Meg
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Aussie Barb
Research Team
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Posted: Fri Dec 17th, 2004 15:20 |
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| Thank you for your interest John. Carol posts in both the phase 2 & this forum.. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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John McDonald
Advocate
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Posted: Sat Dec 18th, 2004 18:35 |
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I'm interested in her progress more than the details of the meds.
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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carol
Advocate
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Posted: Wed Feb 2nd, 2005 21:01 |
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Dear Friends:
I am nearing the end of my third Phase 2 cycle. The herx has been manageable but noticeable, starting about day 3 and persisting through the rest of the cycle. Symptoms have included fatigue, dull headache (just enough pain to be annoying), back pain, muscle pain (an odd burning “vibrating” feeling) and gastrointestinal discomfort. All of these symptoms are intermittent, coming on rather quickly and then not lasting too long, which reinforces in my mind that they are, indeed, herx symptoms. Last night I had a period of a few hours in which my taste was “off”. This is something that I experienced early in Phase 1 and had forgotten about until it happened again.
Hand/wrist and feet/ankle pain is consistently better. These joints have been the focus of my RA symptoms. It is great to be able to walk without shuffling and to pick up things with more ease. I experience this as an interesting and welcomed combination of less pain and more strength. I’m still taking both Celebrex and Vicodin. I’m a long way from being able to give up these meds, but now when I take them they control my pain quite well.
Overall, my mental/emotional symptoms are improved—although I have periods where this free roaming anxiety comes over me. Since I have young adult children, this gives me a convenient target on which to focus my worrying!
I continue to notice greater light tolerance, but I can still “push the envelope” and feel the effects later.
In recent weeks I have lost the desire to drink alcohol, just because it did not seem to agree with me. A few nights ago I was out with friends and had a Bloody Mary followed by a glass of wine. I felt terrible within a couple of hours and it lasted into the next day. Ugh! In the old days, this would not have affected me at all.
I’m really looking forward to attending the March conference.
Best to you all,
Carol
____________________
rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Reenie
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Posted: Thu Feb 3rd, 2005 01:02 |
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Carol,
It will be great to put faces to some of the names from the site at the conference and have real time chat, er.. I mean... conversation! (I think I spend too much time online)
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