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carol
Member Advocate
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Posted: Sat Sep 4th, 2004 22:47 |
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Dear Friends:
Things have been progressing rather smoothly. (See my previous posts under Preliminary Test Results and Full Protocol). After 2 weeks on Benicar+Quercetin every 6 hours, I started Minocin every other day. I took three doses of 25mg and will take my third dose of 50mg later this evening.
I have come to see a pattern in my response. About two hours after the Minocin, I feel flu type symptoms which last for about two hours. This happens again about 16-18 hours after the dose. During both of these times, my pulse increases from about 75 bpm to 100 bpm. Sometimes I get a stinging feeling in my throat, ears and eyes and other times I will feel like I have ice water in my veins.
I find it interesting that the arthritis symptoms don’t increase notably during these herx times. Overall, I believe the RA is modestly better. My joints are definitely cooler and there is less obvious inflammation, but the pain is just as bad—a mixed bag.
My most severe herxs accompanied the first 25mg dose and the most recent 50mg dose. I took special note of the postings today (under Urgent Problems) regarding Arlene’s “out of the blue” herx event that popped up for her after having smooth sailing for many weeks. I will not get too cavalier with the MP!
I have not seen any indication that I might be getting hyperthyroid, but will stay watchful as I continue to take 60mg Armour thyroid daily. I was reassured by my discussion with Meg and Reenie that my 15mg/day Cortef is probably a justified replacement dose at this time (based on limited lab data).
I have been limiting my sun exposure, but my NoIR glasses have not yet arrived. I can not say that I have seen an impact from sun exposure. This does not surprise me. There are obviously significant competing factors at work: Benicar taking 1,25-D down, the Minocin-induced bug killing and sun exposure both causing it to increase, the variability in 1,25-D rate of change further complicating things. I am fully convinced that the Vitamin D effect is real. Dr. Marshall puts forth a compelling and well researched case for this in his writings. Also, there is no doubt in my mind that during the two year period that I was heavily supplemented with vitamin D, I got steadily worse.
Your comments and suggestions would be appreciated.
Best wishes to all. Stay the course.
____________________
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
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Sun Sep 5th, 2004 00:16 |
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"I took three doses of 25mg and will take my third dose of 50mg later this evening."
"About two hours after the Minocin, I feel flu type symptoms which last for about two hours. This happens again about 16-18 hours after the dose. During both of these times, my pulse increases from about 75 bpm to 100 bpm. Sometimes I get a stinging feeling in my throat, ears and eyes and other times I will feel like I have ice water in my veins."
Carol,
Are you sure you want to increase your dose if you're still herxing on 25mg? 
IMO, and what others have said, I would reconsider ramping your dose until you stop herxing on 25mg. It sounds like you're doing so well at this level. I think I would stay here. Remember, there's NO rush. 
I'm sure you've been reading the postings and have heard how some ppl respond with a more severe herx even after taking several doses, even without ramping up! (you mentioned reading arlene's post)
I was told by one pt of an MP Dr, that they advise staying at two full weeks without any herx before ramping up, and then only increasing by half the amt as previously taken.
Good luck, with whatever you decide to do.
Last edited on Sun Sep 5th, 2004 00:19 by Reenie
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carol
Member Advocate
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Posted: Sun Sep 5th, 2004 16:39 |
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ps:
I will be seeing my doctor later this month. He has already agreed to re-running D metabolites and ACE at that time. Are there other tests that would make sense to run?
____________________
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
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Sun Sep 5th, 2004 20:35 |
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Carol,
I was wondering if you decided to keep your mino at the 25mg, since you made no more mention in your last posting or in sig line. I was just curious... wanted to know how you're doing.
Oh, since you're in the posting for Q, what is your Q dosing? I'm wanting to try it, but apprehensive to add, since I had one rather unpleasant experience with it, from one 500mg cap. I prob added it at a bad time, (after sun exposure) and Dr M said I should try a lower dose, so plan to, next time.
How does the Q affect you? When did you start it? When do you take it? For herx only, or prophylactically? What dose?
Last edited on Sun Sep 5th, 2004 20:42 by Reenie
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carol
Member Advocate
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Posted: Sun Sep 5th, 2004 21:42 |
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Reenie:
I decided to forge ahead and take 50mg of minocin last night. The herx was less than with the previous dose. So at this point I have taken three doses of 25mg and three doses of 50mg. I plan to continue like this, assuming no set backs, until I get to the target for phase 1 of 100mg every other day.
I am taking 400mg Q with each dose of benicar. I frankly don't know what it is doing for me. I was influenced by what I read about others benficial experiences. I know I shouldn't be too anxious to get from where I am to where where I want to be--but I am!
I think my previous expereince with metronidazole this spring (violent herx!) may have helped me with this phase of the MP. I also know that phase 2 may be the real challenge.
Thanks for reminding me that I need to change my postscript.
____________________
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
Member Advocate
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Posted: Fri Sep 10th, 2004 16:49 |
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Dear Friends:
I took my first dose of 75mg minocin on Wednesday, 9/8. My herx symptoms have remained about the same in overall intensity, but are evolving in character. This dose was no exception. I had less numbness/tingling in face, hands and feet and less stomach upset, no stinging pain in throat and eyes, compared to previous doses. However, I experienced some new symptoms. The tendons in my forearms became very sore and I experienced dizziness, both of which were new for me. Perhaps most unusual, I had a vision disturbance, like looking through clear, moving water in the peripheral vision on one eye.
These herx symptoms come on quickly and also fade quickly. I experience “Herx Wave 1” about 1 to 2 hours after I take the mino, then “Herx Wave 2” about 16-18 hours after the dose.
The herx symptoms happen against the backdrop of my regular RA joint pain, which is slowing getting better.
My husband has helped me judge my progress. He is VERY excited about the MP. He thinks there is no question that I’ve improved significantly over these last few weeks: mood, energy level, mobility. One could argue that he is a much more objective observer than I am.
Would appreciate any comments or suggestions.
____________________
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
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Sep 11th, 2004 00:42 |
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Hi Carol 
interesting and encouraging observations.. 
and it is also helpful to have your interested observer to give feedback
thanks Carol, Best wishes, Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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carol
Member Advocate
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Posted: Wed Sep 22nd, 2004 19:49 |
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Dear Friends:
I have now been on the MP for two months. I started Benicar, 40mg every 6 hours on August 11, 2004. I added Minocin exactly two weeks later, on August 25. I blithely forged ahead, taking Minocin every other day. I took three doses of 25mg, four doses of 50mg, four doses of 75mg and one dose of 100mg. This first 100mg dose, taken on Thursday September 16, coupled with an increase in physical activity over the weekend, produced a notable increase in my RA symptoms. However, I felt well enough to take the second dose of 100mg on Monday September 20.
In addition to the “odd ball” herx symptoms (itchy skin, tinnitus, waves of depression, extreme fatigue, etc) that come upon me suddenly and then recede almost as quickly, at the higher dose of Minocin I am now getting more joint pain, which is not as transient in nature. Actually, the odd ball symptoms that come and go help remind me that this is different from what I’ve experienced in the past. The joint symptoms alone could be confusing.
Today I decided to restart celebrex, a COX-2 inhibitor that I had taken for about two years before I started the MP. I think this will help get through this adjustment to the 100mg Minocin. It was either that or drop back on the Minocin to 75mg every other day. I guess I’m just too stubborn to want to do that!
I saw my doctor on Monday, September 20. He had the results of my recent blood tests (blood draw 10 days before my visit). Here’s how they compare to my initial numbers:
July 11, 2004 September 10, 2004
1,25-D 65 31
25-D 32 35
ACE 34 30
I was pleased to see the dramatic drop in the 1,25-D. This clearly made an impression on my doctor.
I am perplexed by my 25-D numbers, not just these two, but my data over the last two years. I have posted about this separately. (See “My 25-D is STUCK”).
I left my doctor’s office with a lab requisition for lots of blood work: hormones, markers of inflammation, D metabolites, etc. We agreed that I would get these tests done after I had completed a few more cycles of 100mg Minocin and felt like things had settled down a bit. We looked at the protocol for Phase 2 together. He wrote me a prescription for Zithromax and asked me to call him before I started on that. He hugged me twice. I think I love this man.
As always, your comments and suggestions are greatly appreciated.
____________________
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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John McDonald
Member Advocate
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Posted: Wed Sep 22nd, 2004 23:10 |
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Carol, your posts are so complete and cogent. Nice to read these.
Question for staff:
Is Carol's ACE in the normal range? Should it not have changed with the 1,25 D?
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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Dr Trevor Marshall
Research Team
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Posted: Wed Sep 22nd, 2004 23:16 |
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ACE is such a bad indicator... Carol's ACE does not show any inflammation in the first place. So it stayed stable. I would expect higher values to rise even higher when benicar was started. But if the patient is not showing a high ACE in the first place it doesn't seem to change very much.
See the thread
http://sarcinfo.com/phorum/topic-1-35-35.html
for more info
The immediate plunge in 1,25-D is exactly the same as the Sarcies see... Benicar immediately protects the skeleton and the kidneys from further damage...
..Trevor..
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John McDonald
Member Advocate
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Posted: Thu Sep 23rd, 2004 02:35 |
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| Very good thread. Makes me wonder though if ACE is worth testing whatever the cost.
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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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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 23rd, 2004 02:37 |
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I removed it from the FAQ some time ago
http://www.sarcinfo.com/d-ratio.htm
(OK, OK, it is still in the document title )
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John McDonald
Member Advocate
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Posted: Fri Sep 24th, 2004 00:24 |
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True, your Sarc page is clean. My interest in measuring ACE came from this domain (marshallprotocol.com) in these two locations. You may want to launder these too.
Reference to measuring ACE in items 3 and 4 of "starting marshall protocol" here: http://www.marshallprotocol.com/forum2/3.html
and also in "basic blood tests for the marshall protocol" here: http://www.marshallprotocol.com/forum2/366.html
Heard from my doc yet?
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
Member Advocate
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Posted: Tue Sep 28th, 2004 13:34 |
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Dear Friends,
After ramping up rather aggressively, I took my first dose of 100mg Minocin on 9/20. At this time I decided to take the Minocin every three days instead of every two days for a few cycles. This enabled me to see that the RA-type joint pain and inflammation definitely are reduced on day three, which was reassuring. The way I interpret this is that the Minocin stirs things up for the two days that it’s in my system, bugs dying, etc, then things quiet down.
I also continue to experience other herx symptoms that are unique and evolving. These symptoms have sudden onset and resolution, consistent with moving through different parts of the Minocin time-concentration curve. They are lessening in intensity.
When I was starting the MP, Meg warned me about the possibility that I might develop symptoms of hyperthyroidism. About two weeks ago, I cut my Armour thyroid dose in half (to 30mg) to see if the excess sweating I was experiencing would stop. It did, after just a few days. Then on Sunday afternoon, I found myself feeling extremely anxious and jittery and my pulse rate was up. Pretty intense. I realized this had been coming on for a few days. I have taken NO thyroid for the last two days and these symptoms are GONE.
I also decided at the same time to further reduce the dose of Cortef I was taking. I had dropped back from 15mg/day (three divided doses) to 10mg/day (two divided doses) about two weeks ago. Now I’m on 5 mg in the morning. My rational for making the decision to do this is “if my thyroid is working so much better, my adrenals must be too”. Frankly, the only benefit I ever noticed from taking the Cortef was weight gain, so I would just as soon get off of it entirely.
I am still using a topical cream w/ estrogen, progesterone and testosterone, originally prescribed for menopause symptoms. That may need to be adjusted eventually as well, but it seems unwise to diddle with anything else at this point.
As I mentioned in my last update, my doctor has already given me a requisition for a complete set of blood work, to be done when things settle down. I figure in a few weeks I’ll check my basal temp, get the blood work and talk to my doctor about all this. Thanks to my MP friends who have helped me understand the Wonderful World of Adrenals. (You know who you are.)
I continue to be amazed by my experiences, and how consistent they are with the science behind the MP. I am very thankful to be on this journey.
____________________
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
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Tue Sep 28th, 2004 16:42 |
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carol,
Wow... ALL good news!
That was smart of you to take the mino every 3 days, to sort things out.
I haven't been on a very high dose of mino yet, so I'm thinking, I may begin to experience more sx from all of the hormones I'm taking, in time. I have been feeling as though some of my hormonal issues are improving by sx, such as IR sx, having trouble w/sleep at times, etc.
Since my hormonal sx are ALOT milder than yours, I've just had a FULL and very complete panel of labs drawn yesterday, before changing anything. My endo said, of course IF my sx get too severe, I can immediately decrease ANY of the hormones I'm taking.
Please keep us posted. I'm anxsious to see what your new labs reveal.
BTW, Cortef should NOT cause weight gain, however, if it's bumping your natural adrenal function out of the normal range, (it doesn't suppress the adrenals like prednisone) it may cause excess adrenaline/cortisol which contributes to more insulin production. This WOULD affect weight gain.
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DaveW
inactive member
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Posted: Wed Sep 29th, 2004 14:00 |
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(((Carol))),
I am so happy to see you progressing so well.
You are a pioneer who is breaking ground for other RA patients!
I am also happy to see that the MP seems to be addressing your brain chemical and hormone (HPA axis) dysregulation. This provides hope for all of us, as HPA dysregulation can be responsible for so many (physical and mental) symptoms.
All the best!
- 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
Member Advocate
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Posted: Mon Oct 11th, 2004 23:05 |
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Dear Friends:
I posted the following in response to a question on another thread about symptoms. I decided to repost it here, just to keep my records complete and in one place.
BTW, I just realized that the TMJ-type pain that I reported below is really not joint pain at all. It is soreness in my parotid glands--a mumps-type pain.
What a wild ride this is.
"I have RA and have been amazed at how different my herx symptoms are from my usual arthritis symptoms. My joints affected by RA are limited to wrists/hands and ankles/feet. These joints are tender all the time: it’s painful to walk, to lift heavy objects, open jars, etc. During times of herx, I’ll get a burning/stinging sensation in these same joints, along with a generalized burning/stinging pain in many of my muscles. Of late, this "herx package" has included a really excruciating tendonitis-type pain in my forearms and ham strings and a “TMJ-type" discomfort in my jaw. While the RA symptoms are there all the time, these arthritic herx symptoms are very much transient. They come on really quickly and are totally gone within a few hours.
I also have experienced very dramatic and unusual herx symptoms (itching, a feeling of ice water in my veins, stinging in throat and eyes, tingling of face and extremities to name the major ones) which are not like RA at all. These also come on and leave quickly. I know Trevor says all herx systems represent exacerbations of current, past or “occult” disease symptoms. It’s hard for me to classify these strange sensations as any kind of RA symptoms, but I’m sure they are related to this disease and the impact that Benicar+Minocin is having on the cell dwelling pathogens, so I guess that puts them in the last category. (Actually, I don’t think Trevor used the word “occult”, but some other descriptor that meant hidden or somehow obscured.)
Many of my symptoms have been so bizarre and dramatic that they have been impossible to miss, and if this wasn’t happening to me, I’m not sure I would believe it! In my case, this has been very reassuring to me that something major is happening."
____________________
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: Tue Oct 12th, 2004 03:52 |
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Hi Carol,
I would like to address several of your symptoms. I am not an expert and speak only from my experience, like you I suffer from soreness in my jaw muscles, I also have many tendon and muscle pains. I have noticed with me that many of the "hex" pain is located where my tendons and muscles join the bones. I brought this up with one of the Dr's and with reactive arthritis this is pretty normal. I also notice that cartilage is affected. I have read several posts where people have sturnum pain, pain on the ends of the ribs, etc. With me that is cartillage inflamation. I might suggest that maybe some of peoples pain maybe reactive arthritis too. My experience so far has shown me that reactive arthritis is caused by bugs that enjoy vacationing in cartilage. The reason I say this is I bever had arthritis until I had a infection and it came on too quickly to be anything else. I am sure there are experts that will comment further, but thought I would add my experience.
Keep smiling!
John
Last edited on Tue Oct 12th, 2004 04:24 by Big John
____________________
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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carol
Member Advocate
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Posted: Tue Oct 12th, 2004 17:30 |
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Hi Big John:
Thanks for the info. My muscle and tendon pain sounds like what you are describing. If we accept that all these diseases are caused by bacteria, then maybe there's not so much of a difference between rheumatoid and reactice arthritis.
____________________
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
Member Advocate
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Posted: Tue Oct 26th, 2004 15:41 |
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Dear Friends:
Here's how it goes with me...
Hormones:
I am still off Armour thyroid and low dose Cortef and have no negative effects from this as far as I can tell.
Minocin Dosage and Interval:
I am still taking 100mg Minocin and varying the interval between doses to insure, as best I can, the resolution of herx symptoms (and sometimes to accommodate my personal schedule). The interval has ranged from 2 to 5 days.
Sunlight/Bright Light:
I have been more diligent about avoiding sunlight and bright lights for the last several days. For two days I did not leave my house at all and wore the light NoIRs virtually all of the time. Either I’m getting used to the low light environment or my eyes really are getting more sensitive. Today when I went out for a quick necessary errand, I couldn’t believe how bright things seemed even with those dark NoIRs on. Other than that, I can’t say that I’ve had a significant event that reinforced that this is a major factor for me at this time. But I am definitely going to stick with this part of the program.
Herx Symptoms:
I took 100mg of Minocin yesterday afternoon and within an hour my old friends the odd ball herx symptoms were back in full force (“ice water in the veins”, sore parotid glands, stinging mucosa, sleepiness and others). About three hours later, these symptoms were gone. So far, the “day after” herx symptoms, mainly increased RA-type joint pain and fatigue as not as severe as in recent previous cycles.
Neurological Symptoms:
I have only reluctantly come to acknowledge how much my mood has been affected by all of this. A valued friend whom I only know through email correspondence mentioned that the tenor of my messages had become less energetic and confident. This really got my attention. I am mulling over how much of this is biochemical and how much might be situational. For sure, part of it is that the initial euphoria has worn off. I was so thrilled to find my body doing everything Trevor said it would do that the fact that I felt like crap was just a detail. It reminds me of how, many years ago, a dear friend early in her first pregnancy called me and announced with great enthusiasm, “I’m vomiting!” That feeling only lasts for so long.
Plus, recently the herx symptoms have definitely increased in intensity. I can think of several reasons why this might be the case. My initially high 25-D has probably starting to come down. I’m possibly getting more sensitive to the sun and I might have gotten more exposure to the sun. But, whatever is causing it, hurting more sure is enough to get a person down.
Then again, perhaps all this pales in the face of the havoc produced by “bugs dying in the brain”.
My Bizarre Massage Experience:
I have been seeing a massage therapist, for energy work. I’ll spare you the details, but she employs a very light touch, not really like massage at all. At my last visit the therapist, as a kind of bonus, did a little traditional massage on my most troublesome area, my forearms, wrists and hands. She used an extremely light touch, but worked on my arms for about 30 minutes total. Several hours later, I developed excruciating pain in my forearms. I could hardly use my hands for two days. (There’s something that will make a person depressed!) I have had traditional deep tissue massages over the years since I developed RA (but prior to starting the MP) and never experienced anything remotely like this! All I can figure is that this gentle action facilitated release of the toxins from the tissues. Aussie Barb and Steve have already shared that they have had similar experiences with massage.
At the risk of sounding like a whiner, let me just say that I’m ready to turn the corner, and I hope it happens soon.
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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