The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Chris' progress (alumni)
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Chris' progress (alumni) |
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Chris Moderator 
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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 |
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Reenie inactive member
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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 20:30 by Reenie |
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Aussie Barb Research Team 
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"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 |
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Chris Moderator
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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. |
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Reenie inactive member
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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
Last edited on Wed Sep 15th, 2004 02:36 by Reenie |
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Aussie Barb Research Team
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"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 08:36 by Aussie Barb |
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Chris Moderator
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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. |
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Reenie inactive member
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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. |
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Aussie Barb Research Team
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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.... |
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Chris Moderator
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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 |
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Reenie inactive member
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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. |
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Chris Moderator
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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 |
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Reenie inactive member
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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. |
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Chris Moderator
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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 |
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Foundation Staff . 
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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 |
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Chris Moderator
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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 |
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Aussie Barb Research Team
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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 ... |
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Aussie Barb Research Team
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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 |
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Chris Moderator
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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. |
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Chris Moderator
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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. |
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Aussie Barb Research Team
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Wow Chris, it is good you can see an immediate difference from cutting out the commuting / light exposure.. Congratulations on taking good care of You. best wishes, Barb ... |
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Chris Moderator
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Day 9 : 3 Dec 04(restarted) Benicar 40mgQ6h; mino ~25mg Q48h. Self flagellation was never something I'd considered before. This comes close. Wed night I took the about 30mg mino. Thurs morning was uncomfortable. Thursday from 10-4 I was feeling good and was up and working at the keyboard, and making good progress. Last benicar was 11:30PM. I woke, feeling ill at 3:30, again at 5:30AM feeling miserable. My sense of time gets real sharp when I feel a need for benicar. I was miserable with aches, pains, brain fog, and touchy stomach until it started to clear about 2PM Friday. In 6 hours or so I get to start the cycle again. whoopee. I think I'll take a little more care to take 25mg mino or less this time. |
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Chris Moderator
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Wed Dec 1 - ~30 mg mino Thu Dec 2 - feel good, productive day Fri Dec 3 - misery, clears up 2PM, try ~20 mg mino Sat Dec 4 - achy day, not that good Sun Dec 5 - achier day, not that bad - try 50mg Mon Dec 6 - feel good, productive day Tue Dec 7 - aches in the earlier part of the day, but peak starts at 2PM - will take 50 mg again n.b. I take the mino about 10pm. That seems to work best to make the next day usable. The effect of higher mino seems to be: 1. The more mino the better I feel on the day after taking it. 2. The more mino I take, the later on the second day following will the herx peak and the longer it continues into the evening. Dec 3 spooked me a bit, it's been a while since the sarcoid has made me feel that miserable. However, this seems to be a 'no pain, no gain' game. Since the following lower dose gave a markedly milder reaction that it had previously, it seemed reasonable to see if the Dec 3 reaction had actually improved things and so I tried 50mg. It seems to have been a good call, since today was somewhere between the 3rd and the 5th in herx. |
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Chris Moderator
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Day 15, dec 9 Wed started good, but I had to drive to work (1hr each way) so might have set things back a bit. Things stopped feeling so good about 1PM. The herx today was an irritating level of aches & pains & loader than usual tinnitus, but I still got some work done on the keyboard. However it's been 48 hours, and the herx, though low, is still around. I'm tempted to step up to 75mg mino, but will do one more round at 50mg. |
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Chris Moderator
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Day 22(?) Dec 15 two steps done at 75. I find that at 48 hrs after a does, the herx is not yet gone. I went to 60 hours to see when it actually stops, and found that getting a few hours off before the next round is an emotional boost. I tried 100mg this AM, and that gave me back the shakes & chills I'd missed for a while. But it's still not as bad as that caused by the first 50 mg dose. I seem to get a slight case of herx on the way up the mino curve and then a worse one as it tapers off. Is this common or am I imagining things? |
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Foundation Staff .
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Chris, The timing of your Herx reactions has been reported by others too. It probably has to do with differences in bacterial susceptibility and tissue perfusion but I can't say for sure. You are adjusting your mino schedule appropriately. Good job! Best, Meg |
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Chris Moderator
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Day 23 - Yesterday was good. My head was clear and I was able to get things done at the keyboard. There was a big of mental fog but not bad. This morning, I was thinking of going into work to clear up some end-of-year things. But at 1pm I got hit with strong shakes, chills, aches, pins-and-needles, and I had to crawl into bed for a couple of hours. The first 50mg dose gave me about 10 hours of feeling really miserable, all of the above plus a very touchy stomach. This episode caused by the first 100mg mino was short and sharp. My stomach wasn't affected, but that might be because I've had to give up coffee altogether, and limit the tea to 2 cups a day. Even then, there is usually a half-full cup of tea on the desk the next morning. If the need for caffeine hadn't gone away with the ability to tolerate coffee, I'd be in really sad shape. |
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Chris Moderator
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The second dose of 100 mino had minor herx. After shaking so bad I didn't feel safe standing up for the first 100mg, I was a bit apprehensive, but as with the 2nd dose at 50mg, the 2nd dose at 100mg gave much milder herx than the first. |
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Aussie Barb Research Team
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Dear Chris to read your report, it looks to me that you may have been on Benicar and mino for 5+ months? can you let me know if that is right please? you may like to be looking at How do I know if I'm ready for phase two? all the best, Barb ... |
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Foundation Staff .
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Chris, It's important not to stay in phase one too long. The bacteria that are resistant to minocycline may find the newly vacated inflammatory tissues a welcome place to multiply. That's why we want you to add a second antibiotic after 3 months or so on the MP. If you are worried about too much Herx, you can start phase two with a reduced minocycline dosage to make sure you don't get sacked by the Herx and then ramp the mino back up to 100mg every other day. I'll email you the phase two questionnaire and then the phase two guideline so you can talk it over with your doctor. Best, Meg |
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Chris Moderator
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Yes, it's been 5 months. But for the first 4, I tried to work. That didn't work out so well, as the brain fog seem to show up just when I needed the brain to work. I had not seen the warning about being on phase 1 too long. It wasn't until recently that I could take time off work to let the herx roll. Since I got to the 100mg level, and the severe herx stopped after the first dose, I was just about to ask for phase 2. Chris |
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Chris Moderator
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Phase 2 started Dec 24. 'Daunting' is my wife's review of phase 2. Other than poor sleep patterns, I've nothing to complain about for the last few days. I'd skipped a day in the 100 mino cycle to get a couple of good days for the 24th and 25th. |
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Aussie Barb Research Team
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Dear Chris, a link for you >.IMPORTANT MESSAGE FOR MEMBERS IN OR READY FOR PHASES 2 AND 3 best wishes, Barb ... |
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Chris Moderator
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I was feeling fine until about 1:30, when a very uncomfortable pins & needles herx enveloped me for about 2 hours before it started fading away. |
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Chris Moderator
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I spoke too soon, it still hasn't fully faded away. |
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Reenie inactive member
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Chris, I'm not sure I'm understanding your dosing. You say you started Phase 2 on 12/24 but stopped taking mino? That would mean you took Z alone? Remember, the Z and mino must be taken together, on the same day. They work synergistically. If you are having a strong herx on the Z alone, I strongly encourage you NOT to add a full dose of 100mg of mino with it, but try only adding 50mg q48h, for the remainder of the 10 day cycle. Then, repeat that same Z + M cycle again, taking 50mg mino q48h, before ramping up to 100mg of mino. Last edited on Tue Dec 28th, 2004 23:16 by Reenie |
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Chris Moderator
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Meg, I did not stop the mino. I'm trying to follow the protocol exactly. On Dec 24, I took '100mino/48h+2ndAbx', at the dose specified for the first step in the phase2.pdf. I took 100mino again on the 26th and 28th. To be clearer about the herx starting on the 27th, it was 2 hours of pins&eedles (quite uncomfortable, not close to self-flagellation (see previous note)), spent under a quilt or two. Since then, it has come & gone, but is mostly an irritation. The herx on dec 27 wasn't pleasant. I wouldn't care for it to hit if I'd been driving, but it wasn't as bad as the two hours of shakes on the first 50mino-only step. I will let you know how tomorrow goes. The sarcoid started for me in 1983 with a fever of unknown origin that peaked at 105, and kept peaking above 104 for a week, and 102 for a month. Every day had hours of shakes while the fever went up and hours of cold sweats when it went down. I didn't see a full day under 99 for 6 months. I lost 40 pounds. This cycle hit again in 91, when the diagnosis finally showed up. The third hospitalization was due to granulomas in muscle tissue, the pain got too great to walk before they put me in the hospital for a biopsy. Both my wife and I find the idea of recycling these symptoms daunting. But we have been here before. Dec 3 was way too familiar, but it only lasted two hours at the peak, and no fever and no cold sweats. My reading here suggest I should expect worse in the next day or two. I am taking this seriously. I am not a medical person, so maybe I'm not being as accurate as I should be for your use. For that I apologize. Last edited on Wed Dec 29th, 2004 13:10 by Chris |
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Reenie inactive member
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Chris, Let me repeat, if your herx is stronger than you can tolerate, lower your mino to 50mg q48h, along with not increasing the amount of the initial Z dose. Once you feel your sxs become tolerable, you can raise the mino to 100mg before ramping up the Z. |
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Chris Moderator
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if your herx is stronger than you can tolerate, lower your mino to 50mg q48h, What should I be willing to tolerate? I'm willing to tolerate a lot at this point, if it means things are getting better faster. Page 3 of the phase 2 protocol talks about 'troublesome' and 'intolerable' herx, which I was using as the guideline. Since I'm on vacation time at the moment, it doesn't get in the way of anything else. However, on re-reading the phase 2 protocol, page two says one goal is to 'avoid uncomfortable or dangerous reactions', which sounds like both a much lower mark and a higher mark than 'intolerable' levels, and which is confusing to me. I had thought that as long as the herx troubles were less than the previous sarcoid symptoms, I was on reasonably safe grounds. Since mental fog is usual with any level of herx I get, and is the most troublesome in that it interferes with work, maybe I'm not thinking of 'troublesome' in the same way as used in the protocol. Other than the cardiac symptoms noted in the protocol, what should I be looking for to avoid dangerous herx? --- The 6th-day herx didn't show up until 2AM this morning, on the 7th day. It was uncomfortable, but not as bad as earlier episodes, while it was enough to wake me up, it wasn't intolerable. The time between days 3 and 6 had short periods of discomfort. |
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Foundation Staff .
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Chris, Besides cardiac Herx, you should be concerned about any Herxheimer reaction that might send you to the emergency room. That has included severe abdominal pain, chest pain, arrhythmias, severe body rash, increased shortness of breath and throat tightening. Tolerance to non-emergency Herxheimer symptoms will vary with each individual. Best, Meg |
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Chris Moderator
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Meg, Re: Besides cardiac Herx, you should be concerned about any erxheimer reaction that might send you to the emergency oom. That has included severe abdominal pain, chest pain, rrhythmias, severe body rash, increased shortness of breath nd throat tightening. I've seen none of these. My doctor's been worried about the rising BUN levels. I haven't found any description of what symptoms I could use to monitor kidney function, other than the blood tests. <tongue in cheek>It would be nice if there was some clear guideline, like 'don't let the herx get worse than a 12-pack hangover'. I supposed that'd be a 6-pack in Australia, Canada and most other places. </tongue in cheek> I will cut back the mino for the next cycle. I've got to go back to work to start off the new year, see the Dr and so on. So, the level of herx has to be low enough to let me drive around a bit. Chris |
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Chris Moderator
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At 50mino + tiny Z, the herx was just noticable, and I got in a full week of work. Went to 100mino+Z on Thursday, and herx started about 4 this am. It's aches & pains, and lethargy after a hot shower. Not too bad. |
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Chris Moderator
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Sunday wasn't bad, Monday was ok, Tuesday was worse, but I went to work anyway, so it wasn't that bad. I didn't sleep that well last night, and the aches where there this morning, but have subsided, so I'm going back to work again. Things felt better by Tuesday night, so I went bowling for the first time in months. I don't know what to attribute it to, but this is the first time in a couple of years that I got through 3 games without a sore back. |
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Reenie inactive member
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Chris, Would you please send for the Phase 2 questionnaire and access to the P2 forum? HERE's the info on how to do that. |
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Chris Moderator
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I have already sent in the replies to the phase 2 questionaire. Do you need it again? Are you asking me to start posting only in the phase2 forum? |
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Reenie inactive member
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Chris says, "Are you asking me to start posting only in the phase2 forum?" By all means, NO... You are more than welcomed to stay here and post, but please, if you have specific med dosing questions, only ask those in Phase 2 forum. So far, I've only been posting on my thread in this forum, but some post in both places so they can put more detailed med dosing info in the Phase 2 forum thread. OTOH, some people stop posting here and only post in the Phase 2 forum. It's up to you. |
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Chris Moderator
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Ok, then, without specifics. The good days are getting better. Either that, or I'm getting too much sun on the drive to work. However, I didn't have the urge or energy to go to work for December and the first weeks of Jan, so I'm sticking with the story about getting better. Blood was drawn last week, so we'll know for sure in a bit. I'm still getting herx, but it's generally mild; much milder than with the initial mino. I get aches & chills and feel a need for benicar on a 4-hour cycle. On the good days, I get involved in things & tend to slip to an 8-hour cycle for the benicar. now gone to > click > Slow initial progress, part 2 |
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Chris Moderator
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20 months later ... and 20 months better. More endurance, less fatigue; but it still comes and goes with the abx & herx. I'm taking the stairs a lot just to stay away from the skylight by the elevator at work. Intestinal problems are just about gone; downright normal without the abx-caused herx. No more blood sugar troubles; Joint pains and stiffness just about gone (and I've dropped doing the exercise to keep them loose ... they just don't stiffen up any more.) Triglycerides are cut in half. The lab forgot to do the HDL check last time, but that'll get checked before the next dr appt. Incipient thyroid problems (Wilson's temperature syndrome(?)) are gone. I can now wake up, get up and move with purpose within a few minutes, rather than taking 30 minutes to an hour before I so much as pour a cup of coffee without spilling. The depression & mental fatigue and fog are gone; or mostly gone. Certainly better than I've felt in years. I feel that things are still going to get better for a while, so it's a bit hard to tell where cure ends and hope begins, but I've had so little practice with hope over the years that I'm sure it is 95% cure. I'm also sure I've forgotten some of the things I've listed as symptoms along the way. Tinnitus still bothers, but the dry eye and dry mouth are on the way out ... I'm still not good (and never was, likely never will be) at keeping lists. Last edited on Mon Aug 14th, 2006 22:13 by Chris |
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Chris Moderator
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Latest great news, my PSA levels are back to normal (1.7). I know that PSA isn't terribly reliable, but I'm happy with this news. Coffee is starting to keep me awake at night. I've no idea what has started working, but I need less caffeine now to keep me working. The thing that will really change my life is that I'm becoming much less light sensitive. The immediate tradeoff is very sore eyes during herxing, but I'll take the tradeoff. |
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Chris Moderator
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I ran across a description of phase III as 'when you don't get noticeable herx from the major combos.' I'm definitely not there yet, as the current combo hits hard. However, there is a marked qualitative difference in the time between herxes. I'm up, active, and somewhat optimistic ('cynical old farts' seems to be the family motto, so I only ever get to somewhat optimistic). Folks who don't see me often have commented on the dramatic difference in appearance. |
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Chris Moderator
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I think I'm sleeping through much of the current herx. While I've noted some eye irritation as herx, I've missed some. Last night, I had to work late and about 2am my eyes started hurting and feeling sandy to the point that I could not read. It also was too bothersome to let me sleep, but in about 45 minutes it calmed down, so I figure it was a eye herx, just much stronger than I'd noticed during the day time. |
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Chris Moderator
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Cloudy day today. Went to church, with zinc oxide, 10% glasses and wide brim hat. I could not find the 2% glasses and went without a face shield. So far, no ill effects. Doesn't seem like something to brag about, but it is quite the change. |
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jrfoutin Research Team 
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Chris, I actually try to sleep through immunopathology peaks. For the most part, this has worked. I have also noticed for me as a general rule, whatever borderline to regular strength Sx is available will be more pronounced the next day by not getting a regular block of sleep. (So by the same token, naps/rest seem to help.) As for light, that is something to be impressed about! When light sensitivity lifts after being a challenge for quite some time, that is wonderful! Congratulations!!!!--Janet |
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Chris Moderator
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Went to NYC for the last dinner with my son and his wife before they become parents and we become grandparents. I chose not to wear any dark glasses for the evening; they get between me and who ever I'm talking to. And it was a nasty rainy night for driving, not suitable for dark glasses. Between extra light and a small bit of alcohol, I fell asleep early and stayed asleep for about 10 or 11 hours. The herxy buzz is just now wearing off. Something from yesterday had an impact, though much less than in previous years. |
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Chris Moderator
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Or maybe it wasn't something on Sunday; maybe it was just end-of-cycle herx. I was herxy all day long Monday. Looking back at my notes, I see that the end-of-cycle herx is becoming prominent. |
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Chris Moderator
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Another 6 months gone. Still on the same abx combo as a year ago, but finally at full dose. I tried to take an abx holiday, dropping down to just benicar, and then to nothing. But, a mild herx stayed with me. A bit of exercise and the immune system would kick in. A cool night and good sleep and the immune system would kick in. Taking the abx does calm things, but not as well or for as long as it used to. Everything continues to get better, but slowly. I've started to have a cup of coffee in the morning again. It's the one thing that seems to be consistent in shutting down herx to get on the way to the rest of the day. |
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Chris Moderator
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3.5 years on the MP. Light sensitivity is reduced, but I'm still seem paranoid about in the eyes of most folks I know. I don't use NOIRs when reading the computer screen, (but do use reading glasses which should block the UV). I suppose I should invest in a pair of the combination reading and sunglass units. The 90% NOIRs are just too dark for me to read the computer screen with now. A couple of years ago, just letting the NOIRs slip in front of the computer screen for 30 minutes would cause trouble. I still get easily fatigued ... but it's comparatively mild and short events these days. I walk away from a night of bowling with little pain, though the carpal tunnel area does tighten up for a few days. 2 years ago, I would be walking painfully back to the car, and it would take 3 weeks for the arm and back to stop hurting. Progress has slowed, but then I'm working full time and have no more scary symptoms so going slow is just fine. I also have to pick up slack now that my wife is on the MP. (Of course, my approach to that is to try to convince her that some things just don't need to be done that often, which doesn't always go over well.) |
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Chris Moderator
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4 years on the MP. And finally, the light sensitivity is going down noticeably. But not gone yet, Blue Lizard is still going to make money from me for a while. The IBS symptoms were triggered rather dramatically in the low to mid dose levels of the current combination, but have tapered off to almost nothing. New herx still shows up. Only recently have I started coughing stuff up from my lungs as a herx. I've never been told that I had sarc trouble in my lungs or any other trouble there, so this was unexpected. My GP suggested this might be an allergy, but I haven't had allergies in the past, and allergies don't usually have a fixed 14 day cycle that matches my 14-day abx cycle. |
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Chris Moderator
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I'm getting back to the beginning now. The current herx is a low grade fever (about 99.5F). My serious problems started with a high fever (105F) back in 1983, which tapered down to a low grade fever, and didn't go away for 6 months. The low grade fever kept coming back every few months for years, and too often building to 102-103F. One thing I noted is how much coffee acts like prednisone in regard to the fever. Shortly after I finished my morning cup of coffee this morning, I was covered in sweat as the fever broke. And the morning is when the fever is at it's low point. It's not the bed-soaking sweat that prednisone caused, but it's still quite uncomfortable. I know there are reasons to avoid coffee, but I do need breaks from the fever, and the effects of the coffee don't last all day. Even after 4 years of the MP, I do find that getting a new herx is spooky. I get a real strong feeling of dread as the fever comes on, as the arrival of a low grade fever often used to mean that I'd shortly be in bed with a strong fever (102-103F). And, it's spooky even though I chose this current combo as I thought it might invoke just this herx. Last edited on Mon Aug 25th, 2008 17:35 by Chris |
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Lee Member in Phase 3 
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Chris ...I too am almost 4 years into the MP and still discover new herx' ....according to my "life style" and "MP meds". I sure can relate to the feelings of dread as I get the sweats ....knowing I am too sick to carry on with whatever I am doing at the time. I have had to curtail my coffee and also teas for now. My foods are so limited it is scary. I also have to watch my blood sugar like a hawk. Splenda will cause a spike in my blood sugar that makes me ill enough to have to lay down. I never know for sure what will cause this feverish shakey syndrome. Even plain tylenol has done it. Splenda has not always done this either ..... Makes me wonder if my liver is weak ....so I use milk thistle regularly. I have never had this syndome after using milk thistle. Is it possible we are in Phase 5?! Good Luck!! Lee |
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Chris Moderator
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Lee, I don't know if it's the storied phase 5 I've hit. But I do know that my response to sun has changed. Instead of a general feeling of misery, it's quite specific. It starts with a sharp back ache, alleviated by heat & fluids, and then builds to an uncomfortable fever, up to 102, with a nasty ice-pick in the eye migraine. The interesting thing is that it scales back overnight, almost like the daily herx cycle that mino gave back in phase 1. Pre-MP, the misery after too much light was weeks long. I suppose it could be that the 1,25-D is working as it should, turning on the immune system, killing a lot, and creating lots of cytokines, which flood the kidneys and cause backaches. But, that kind of science is above my paygrade. I'll just stay in the dark, until such time as I no longer need to.  One interesting note about coffee, is that as I get better I just drink less and less of it. It really appears to be a self-medication thing for me. I guess Starbucks is another on the list of things to short if the MP takes off. -- Chris |
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expate Member in Phase 3 
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I hope you don't mind me butting in here, but this week I've been thinking about giving up coffee. The uncomfortable jitters that I used to get after drinking too much coffee are coming upon me after just 3/4 cup. But then this morning, it was OK again and I was able to drink a large mug, no effect.dette |
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Lee Member in Phase 3
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Hi! I think it may depend on your IP level at the time? Not sure ....I just know I am in a very tough combo right now and cannot tolerate my beloved coffee or teas. I do decaff only so it is not the caffine. I have found a tiny piece of apple with a little sea salt helps me through a strong IP .... Lee |
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Chris Moderator
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Coffee drinking does seem to be dependent on the bugs, and the current abx/herx. At one point, I was able to completely stop coffee without any withdrawal pangs. The need for it just stopped. Then, a change in abx, and a longer herx cycle meant I needed it in the morning to get moving. Now, after a couple of months, I'm finding a half-empty cup at the end of the day - it just stops tasting good after a half-cup and I don't finish it. My wife has different problems, she has always gotten jittery (or at least for the last 25 years) from the full strength stuff. I don't think that has changed, and it might not. I'm finding that I can no longer tolerate the extreme levels of caffeine that used to be needed to get through the day. I'm pretty convinced that a lot of 'bad habits' we get nagged about are really self-medication attempts. -- Chris |
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Lee Member in Phase 3
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I agree Chris! But I also will take an apple slice over a lortab anyday .... Lee |
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expate Member in Phase 3
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Chris wrote:
*nods in agreement* dette |
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Chris Moderator
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I'm taking an MP holiday during the holidays. It's been 10 days since the last antibiotics and 2 since the last benicar. Other than reduced peaks, I'm not noticing much difference. But then, the antibiotics had stopped showing much of a two day cycle in herx either. There are still symptoms I'd like cleared, and osteoporosis is still a provable diagnosis, so do expect to restart in the new yeear. |
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Chris Moderator
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Hmph. I misjudged things, and the immune system is working too well, and I still need the benicar. |
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Chris Moderator
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We got through the holidays OK, though the grandkids gave me a nasty head cold that lasted 3 weeks. We both found out that we are now highly sensitive to sugar, a piece of birthday cake makes us miserable. Wish me well, folks. I have to spend the next week in Tustin CA, taking training, much of which will be outdoors. While my light sensitivity is slowing reducing, I haven't found that magic abx combo that directly affects the light sensitivity. So, I've stocked up on benicar, k-cream, zinc oxide creams, wide brimmed hats, hats with drapes, black polypropylene gloves, leather gloves, etc. With luck, it'll rain all week. (Sorry about that thought for you in CA, unless you want the rain). -- Chris |
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expate Member in Phase 3
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Chris, I hope the weather cooperates. I don't envy you. I've totally been enjoying the winter weather. I can cover up and not be miserable. I've been thinking ahead to warmer weather as the result of one day in the 70's here. Uggg! We need to have MP clinics/resorts/spas in northern and southern hemispheres so that we can get relief in off seasons. When the weather is 100 plus here I could take off for the southern bit of Chile or New Zealand. Oh yeah, um airfare anyone?dette Last edited on Sun Jan 25th, 2009 23:50 by expate |
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BARNEY Moderator 
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Chris, Let's hope for rain...but....sounds like you got the rest of it under control. I will add my 2 cents worth for what I now do when I have to be outside for the biggest part of the day........Before I go outside....instead of taking my 20mg Benicar (@3hrs), I take 40mg Benicar.....then if I feel bad when I get home...my next 20mg Benicar becomes 40mg instead. GOOD LUCK!!!! HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
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Chris Moderator
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It was a very bright, cool day out. So I could wear my rain coat & hood most of the time we were outside. Except actually doing the climbing. I guess old dogs can learn some tricks. I got up & down the 25' poles without harm, and the aches from the sun flare went away pretty quickly, but brain fog is replacing them. Last edited on Tue Jan 27th, 2009 01:53 by Chris |
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Chris Moderator
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I switched 3 weeks back to ZB, to get away from the neuro herx of clindy - mino - deme. Boy, what a change. I'm not setting the world on fire, but I can see happy from here. You know, I thought I was complaining a lot, and unnecessarily, when I gave out herx numbers of 7 or 8 or more. I wasn't. I'd just lost sight of how good healthy people feel. The other side of the problem is that healthy folks have absolutely no idea of how bad TH1 folks feel. My wife is just now seeing those days of absolutely no energy that used to be my usual state. She was patient with me, but there's no substitute for personal experience to engender empathy. |
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Chris Moderator
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5 years and counting. Still having herx, still react to the sun. I'm pretty much in phase 5, doing a bit of abx, but primarily to moderate the herx, not provoke it. Spent a couple of days in Sunny Atlanta, in a classroom with 1 glass wall. After two days of that, including a bit of outdoor time at lunch, I got a mild fever (99F) for a day or so, along with a bit of IBS. Not bad considering my history. |
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BARNEY Moderator
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Chris, I am glad to see that someone else who has been on MP as long as you and I, still has to fight the sun. Not that I think that is good, it is not, but that we share the same problem. Here's to our getting past that problem. Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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