 |
| Author | Post |
|---|
Chris
Member Advocate
|
Posted: Tue Sep 14th, 2004 14:17 |
|
On 4x40 of benicar, but after three months,
I still can't take 50mg/day of minocin.
After about 3 doses at 50mg, I'm back into
brain fog and general aches & pains enough
to keep me home from work.
Does the time between diagnosis & start of
the protocol determine how long it takes?
I was diagnosed in 91, but the sarcoid probably
started in 83.
Prior to finding sarcinfo, a doctor suggested
lots of vitamin C (3g/day) and quercitin (4g/day),
as well as other supplements.
Even though Trevor strongly suggested dropping
all supplements, I found that these two helped
get me through the day, even prior to getting
the Benicar. I did drop the rest of the supplements.
-- Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Tue Sep 14th, 2004 17:29 |
|
Chris says, "On 4x40 of benicar, but after three months, I still can't take 50mg/day of minocin."
From where you are posting, I'm assuming you are taking some mino. What are you able to take and how do you dose? It seems you're taking alot of Q. Is that a typo or are you actually taking 4000 mg?
Have you had any bloodwork done? If so, what and when?
Last edited on Tue Sep 14th, 2004 17:30 by Reenie
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Tue Sep 14th, 2004 17:29 |
|
"On 4x40 of benicar, but after three months,
I still can't take 50mg/day of minocin."
Chris 
where did you start with the minocin? what dose? and how often? and where are you up to now?
please tell us more info someone will be able to help you once we know some more information
and if you let us know how you are going re cutting D from sun / lights / diet.... do you wear the NoIR glasses? that will all help us too 
thanks Chris, best wishes, Barb
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Chris
Member Advocate
|
Posted: Tue Sep 14th, 2004 22:54 |
|
I started on the minocin about 3 months ago.
I dump out part of the 50mg capsule, so I guess
somewhere around 30mg every other day. Every other
week or so I try to up the dose a bit.
No, I don't take the huge amounts of Q a day
as the previous Dr suggested. I tried to follow
Trevor's previous advice to cut out all
supplements; but the quercitin+C seemed to
help in feeling better. Until I saw the
note on sarcinfo yesterday, I was trying
to not take it, so the levels were about 1000mg
a day at most. I also take a
probiotic as suggested.
The vit-d was 17-D, 70-1,25D at the first
check. With one snafu and another, I have not
seen recent test results. I'll be seeing
the Dr tomorrow.
I've got the NOIR glasses, and wear gloves while
driving. One problem is that my commute is
1 hour each way. I don't use dark glasses inside
to work, it makes print too fuzzy to read. My
vision was damaged by prednisone-induced
retinopathy this spring and I've not yet
been back to get a new prescription.
We got a lawn service this summer, so I haven't
spent much time outside at all, except for
the commute to work and back.
Diet ... it was psuedo-Atkins, I suppose now
you might call it not-too-close-to-Atkins.
No eggs, no fish, no milk, no soda, ....
boring is what it really is. I find that I
don't eat much at all, and feel lousy when
I do. Intestinal aches, pains and malfunctions
were common when the sarcoid started, and some
of that has returned.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Tue Sep 14th, 2004 23:33 |
|
Chris,
Hopefully your new lab tests will reveal more for you. You may want to post them when you get them under preliminary tests for Dr M to review and let him know what you're taking as far as meds and the MP meds.
In light of your mino dosing as well as high D levels, you may be herxing more than you want to, in order to work, and you may need to get your D down more before being able to take mino. The commute to work may be affecting you too, since herxing and the sun will raise the D hormone and both make you feel bad. 
I posted this for someone else, but IMO, it may apply to you as well, and how you're feeling. To answer your question about how long it takes, my understanding is the higher the D values, the more of a problem you have with the pathogens. This would have more to do with your recovery than when you first get dx'd.
A Review - Dosing issues when using Minocin/Minocycline to treat Sarcoidosis
Trevor G Marshall, PhD, 25 Feb 2003
Dr Marshall says, "Unless the measured serum 1,25-D of a patient is in Merck's normal range (less than 45 pg/ml) extreme care should be taken with the initial antibiotic dosing. In fact, it is not a good idea for any of these antibiotics to be administered until after the patient's 1,25-D has been assessed. It may be safer to give the patient time to lower their serum 25-hydroxyvitamin D (and therefore their 1,25-D) by first eliminating all supplements containing Vitamin D, and all foods containing Vitamin D, and spending as much time as possible indoors. When their 1,25-D has been reduced to Merck's "normal" zone there is less likelihood of acute Herxheimer."
Last edited on Tue Sep 14th, 2004 23:36 by Reenie
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Wed Sep 15th, 2004 04:08 |
|
"On 4x40 of benicar, but after three months,
I still can't take 50mg/day of minocin."C
Chris, are you taking mino each day? as you say above ^?
and have you been taking this same amount each time? for 3 months?
'Intestinal aches, pains and malfunctions
were common when the sarcoid started, and some
of that has returned.'C
Chris, have you tried Probiotics for this ^ (above) ? maybe good..
Barb
Last edited on Wed Sep 15th, 2004 05:36 by Aussie Barb
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Chris
Member Advocate
|
Posted: Sun Sep 19th, 2004 01:20 |
|
The only odd things noted in the last blood tests were some gamma globulin deficiencies. The VitaD is down from 17/70 to 12/53.
value range
glucose 102 65-125
IGG 490 694-1618 **
IGA 121 81-463
IGM 77 48-271
IGG-1 161 455-982 **
IGG-2 278 199-526
IGG-3 29.2 16.8-99.8
IGG-4 14.2 13.5-73.9
D25/D1,25 12/53
This was about Aug 1. The best part is that the glucose levels had dropped from the 125-130 levels to 102.
I'm taking 40x4 Benicar, and Quercitin and probiotics and NOIR and gloves when outdoors, but have stopped the minocycline a few days back to get a breather from the herx.
Other: tinnitus, irregularity, joint aches & pains.
Almost back to normal for somebody 20 years older than I am.
A cousin of mine suggested finding a free-thinking thyroid doc, as I've low body temp in the morning, and constipation and a couple of the other circumstantial evidentiary points for thyroids. But the blood tests are normal, and none of the docs I know look any further.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Sun Sep 19th, 2004 09:54 |
|
Chris,
You may want to hold off on looking into thyroid supplementation, especially since you say you test normal. The MP has reportedly caused several on thyroid supplementation to discontinue its use due to the hormone balancing effects of the MP.
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Wed Oct 27th, 2004 22:49 |
|
Hi Chris,
How are you?
You may have seen but I am just letting you know that there is a new, updated version of *How to Start the MP* with much more information.
You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr.
from http://www.sarcinfo.com/phase1.pdf ....
There are other Important new documents as well.
Letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports regularly, so that we may help you to do MP with the utmost efficacy...
Thank You, Barb....
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Chris
Member Advocate
|
Posted: Mon Nov 1st, 2004 20:05 |
|
Barb,
Thanks for the notice on the protocol update.
I was having lots of trouble with herx even at the 25mg level. If I took mino on Mon/Wed/Fri eve, I'd be thoroughly miserable on Sunday and have to not take the mino for a couple of cycles. It helps to know I'm not in unexplored territory.
I've seen suggestions about either reducing the mino to ~12mg or alternatively dropping the benicar. Which is the current preferred approach when the full protocol is too painful?
- Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Mon Nov 1st, 2004 20:48 |
|
Hi Chris,
Would you please add you meds, dosing and dates to you sig lines for ease in answering your questions? TIA
As for dropping mino doses, that would be the way to go. I'm not quite sure why you would want to lower your Benicar dosing, but I'm not sure how much you're taking.
To keep your full Benicar blockade in effect, you need to take it at least q8h. There are many ppl, including myself, taking it q6h and raising it temporarily to q4h if too much sun exposure or for herx.
There are a few ppl that are having sxs which appear to be herx, on Benicar alone, so sometimes they lower the Benicar from q6h to q8h, to see if they're taking more Benicar than needed.
|
Chris
Member Advocate
|
Posted: Tue Nov 2nd, 2004 03:01 |
|
Reenie,
I'll have to look at previous postings for the D-ratios, but my last D-ratio was something like 13/50 down from 17/70 sometime earlier. The last test was at LabCorp, so I'm not sure how accurate it was. The next test will be next week.
I've been on 40mg/q8h + Q for at least 3 months. I've been trying to get on-board with the MP at 25mg, but the 25mg level is too much. I've had my head down trying to stay employed, reduce light exposure, watch my diet, and do 25mg mino q48h.
I've noticed the technical data at the end of
the post, but haven't fully deciphered what
it was for or what the format should be.
And what does TIA mean? And what is 'sxs'? As in There are a few ppl that are having sxs (The software jargon I work with is just not this suggestive.) Is there a note somewhere on the format & codes for the data/tag line?
I haven't a clue why I would want to lower the Benicar, except that I thought I read that as a suggestion somewhere on this site. There was a comment about dropping the Benicar and going to mino alone to reduce the bacteria load. That didn't make sense in the light of what I understand about the Marshall Protocol, but since I'm not a medical type, I had to ask.
Chris
-----
Sarcoid since 1983.
7.28.04 - 40m benicar q6h +Q, 25mg mino q48h, NOIR
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Wed Nov 3rd, 2004 00:44 |
|
Hi Chris,
Let me try to answer all of your questions.
The D nos you give are more like the actual blood levels rather than the ratio, but that's FINE, if you have those to add to your sig line. If you wanted to figure out the ratio, (13/50) you would divide 13 into 50 and your ratio would be 3.8.
For info to put in your sig line and how to do that, look HERE.
TIA = Thanks in Advance
SXS= Symptoms
Chris says, "I haven't a clue why I would want to lower the Benicar, except that I thought I read that as a suggestion somewhere on this site. There was a comment about dropping the Benicar and going to mino alone to reduce the bacteria load."
You say you've been on Benicar since July, so I would assume you are doing OK on it? There would be no reason for you to drop the Benicar, but to lower your mino dose so you can tolerate the herx. There has been discussion for those that either have an awful time on Benicar or that haven't been able to get a Dr to write an Rx yet for the Benicar that are first pulsing mino.
You may want to try 12.5mg or even lower than that to begin with. You can start by dividing the mino capsules down to 3mg and putting the powder in applesauce, then ramp up as tolerated.
|
Chris
Member Advocate
|
Posted: Thu Nov 18th, 2004 22:36 |
|
My D ration is coming down, from ~4.2 to 2.9, but the D,25 level is 8, which is quite low and worries my Dr. Depression has been a constant companion, and the pits just got deeper. Is there something I can do to up the D,25 without upsetting the D,1,125 or do I just ride it out?
Also, the Dr noticed my creatinine level has risen from 1.4 to 1.7 in the last 2 months. Is this a common side-effect?
I work in software, and my quality level has plummeted over the last year. I cannot keep track of anywhere near the number of details I need to to avoid bad judgement calls. Would it be reasonable to expect that if I took 3 months to concentrate on the MP that maybe I'd be thinking clearer?
The herx I get (or what I assume is herx) is either general upper body ache, or full body shakes (or infrequently both). How do I know when the herx is too little or too much? As it is, I have to change my work schedule so I'm not herx'ing while driving.
---
On another subject all together (or rather another patient) , my Dr has a second patient for which he is using the MP. That patient had side-effects of a serious skin rash, and shakes so bad even the tongue was shaking. Cortisone was used for the skin rash. The questions the Dr has are: 1) is a skin rash a common side-effect for the MP. 2) Are extreme shakes common. 3) Any suggestions?
Note, I have tried to get the Dr to sign up here, but he's leary as he mentioned the MP at a meeting on Sarcoid and it wasn't well received, and he does have a local reputation to protect. I'm just happy he's willing to use it quietly.
- Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Meg Mangin R.N.
Research Team (on leave)
|
Posted: Fri Nov 19th, 2004 13:32 |
|
Chris,
I'm impressed with your doctor's willingness to help you with the Marshall Protocol despite opposition from his colleagues. You can assure him that the medical professionals forum is a safe place for physicians to get answers to their questions.
Your 25-D has come down and that's just where it should be. Point out to your doctor that this is just a precursor to the active metabolite and that you have plenty of the active metabolite. By keeping this down, you are depriving your inflammation of 'fuel'. This helps the antbiotics kill the bacteria which is what is going to eliminate your disease eventually.
It's quite common for creatinine to rise. This indicates subclinical kidney inflammation that is being resolved as the bacteria there are being killed. It will go down again.
Your signature line indicates you've had sarcoidosis over 20 years and have been on the MP for only a few months. It will take time to resolve your symptoms but if you persist, it will happen. Your brain fog and depression will clear. I'm not sure what you mean by "if I took 3 months to concentrate on the MP that maybe I'd be thinking clearer?" That suggests to me that you may not be following the MP exactly. Don't forget that staying indoors as much as possible, covering up completely when you must go out and wearing NoIR sunglasses inside and outside is an ESSENTIAL part of the MP. If you are not complying with this, it may be the reason for your intolerable symptoms because sun exposure causes a flare in 1,25-D that makes symptoms worse. Try to be more dligent (please tell me that you are wearing NoIRs) and see if you feel better. You should be feeling some exacerbation of symptoms so you know that bacteria are being killed but you don't have to tolerate more than you'd like.
If decreasing sun exposure doesn't help and your Herxheimer reaction becomes intolerable, increase Benicar to every four hours and alter your minocycline schedule as follows.
Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero. When Herxheimer symptoms are intolerable the patient should take minocycline 12.5 every 12 hours or 25mg every 24hrs. This dosing schedule seems to ameliorate the Herxheimer reaction because the dose of mino is maintained at the less effective level. (In the patient is already taking a higher dose, reduce the dose to 25mg every 12 hrs or 50mg every 24 hrs)
Using this dosing schedule until Herxheimer symptoms are again tolerable, the patient can then begin spacing out the doses so that the concentration is allowed to decay to maximum therapeutic levels. The immune system will begin to kill bacteria again.
You can tell your doctor that his other patient with the skin rash and shakes was probably having a Herxheimer reaction. The same advice about sun avoidance and minocycline dosing to control intolerable Herxs applies.
Best,
Meg
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
|
Chris
Member Advocate
|
Posted: Fri Nov 19th, 2004 21:56 |
|
Your brain fog and depression will clear. I'm not sure what you mean by "if I took 3 months to concentrate on the MP that maybe I'd be thinking clearer?" That suggests to me that you may not be following the MP exactly.
The biggest problem I have is that if I herx much at all, I don't think clear enough to do my work. If I took a medical leave for three months, I could stay in my cave and let the herx roll. I'm trying to follow the MP as close as possible, but it's been difficult as I do have a long commute and can't let the herx make me too foggy to drive. I have to take 4-day breaks on the mino sometimes, as it can build to the point where I can get up & around but can't face the commute and am too foggy to work from home.
The question is, how do I know if more herx is better? If more is better, then I can arrange the time off.
and your Herxheimer reaction becomes intolerable,
What do most patients consider 'intolerable'? When does the herx actually start to cause more damage than cure? (as if reading that beer might have VitD wasn't damage enough.)
-- Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Fri Nov 19th, 2004 22:06 |
|
Chris,
Meg Mangin R.N. says:
"People who can't completely avoid sun exposure like those who must work or who have small children to look after may have a difficult time with the Marshall Protocol.
How much you can cheat on the sun avoidance is an individual matter. If someone is Herxing, then they are responding and progessing. If those Herx reactions are intolerable and uncontrollable because of sun exposure, then the MP may have to be discontinued until a future time when they can be diligent about avoiding sun exposure." <<
& your Q is >The question is, how do I know if more herx is better? If more is better, then I can arrange the time off.
What do most patients consider 'intolerable'? When does the herx actually start to cause more damage than cure? <<
reply: intolerable is individual to each person. Dr Marshall describes the goal in the phase 1 doc as herxing comfortably. see > HOW TO START THE MARSHALL PROTOCOL - The First Three Months Includes links to papers for patients at end << Chris there is a paper on herxing there too..
FAQ >How will the MP affect my life? Can I continue to work?
from >MARSHALL PROTOCOL FAQ Answers to Frequently Asked Questions about the Marshall Protocol
also I will add here too, that if you are suffering more sun exposure symptoms, then an extra Benicar Tablet per day can be beneficial. Dr Marshall says > making sure that when you are exposed that you are not more than 4 hours away from your last Benicar tablet.
if you need more help, do not hesitate to ask, thanks, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Fri Nov 19th, 2004 22:27 |
|
paper on herxing is.. >>
Mangin M Observations of Jarisch-Herxheimer Reaction in Sarcoidosis Patients JOIMR 2004;2(1)
1 Available from http://www.joimr.org/phorum/read.php?f=2&i=51&t=51
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Chris
Member Advocate
|
Posted: Fri Nov 26th, 2004 21:43 |
|
I've informally worked things out at work so I can be home and in my cave for the next month or two. I skipped the mino the last 4 days so as to be of some help through the holiday. Today I start again at about 15 (or ~1/3 of a 50mg capsule).
I've ordered a couple of pairs of "OPTX 20/20 Stick On Reading Lenses" (from Aircraft Spruce) to make continual wearing of the NOIR glasses a little easier. The NOIR do not fit well over my reading glasses.
I got through the Thanksgiving meal will only minor inconvience (blood pressure dropped so I had to lay down before I fell down). There's something about Thanksgiving turkey dinner that doesn't like me. About 15 years ago, pre-diagnosis, I tried to get up from the Thanksgiving dinner table, and I could not stand up. There was a lump on my calf that was almost the size of a golf ball, and I could not straighten my leg without severe pain. It was a non-caseating granumola, but the local experts would not diagnosis sarcoidosis on this basis.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Chris
Member Advocate
|
Posted: Wed Dec 1st, 2004 22:45 |
|
Day 7 : 1 Dec 04(restarted)
I'm home for the next two months, no commuting.
Benicar 40mgQ6h; mino ~25mg Q48h.
The 2-day cycle is much more predictable without the commute effort. About 20 hours after I take the mino, the chills and aches start, about 44 hours after taking the mino it starts to feel better. In the middle the brain fog creeps in and out. I figure I get about 8-10 hours of clear thinking in the two days.
I don't have a way to measure exactly how much of the mino I'm taking, but it was probably somewhat under 25 for the previous 3 doses, and maybe somewhat over for todays dose.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Current time is 17:02 | Page: 1 2 3 4   |
|
|
|
|
