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Luxman's MP journey

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kermy
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Posted: Thu Apr 9th, 2009 05:02

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Hi Luxman! Good to meet you!

If I was to put myself in your shoes with your current set of symptoms, I would have to say that your immune system is trying anything and everything right now. Auto-antibodies can cause alot of problems too. Could be allergies/intolerances/hypersensitivities all rolled up into one big confusing mess.

The first year I was sick sounded alot like that. The specifics don't match, but you know it when there's something scary like that going on in your body. I can't tell you how many panic attacks, and how many times I swore up and down I wouldn't wake up in the morning!

You are on the best treatment possible for your illness. And if this doesn't cure you, at least you will learn enough to rule out a good handful of chronic diseases that most doctor's classify as ''all in the head.''

If you don't have a blood pressure monitor, I would highly recommend one. It provides important information for you when you feel super-bad. I have problems with low blood pressure, and low pulse rate. Always had a mild form of both before becoming ill 3 years ago (6 months into MP now), but the herxing brings it down a little too far for comfort, for me at least. I have a feeling my blood volume is low also, but not much ado about that in the meantime, since there's no easy way to measure that;-)

____________________
Acute symptomatic onset 01/2006, Dizziness for 2 weeks resolved during 01/2005, Palpitations materialize half way through 2005, food allergies/intolerance/hypersensitivity since onset, CFS, Neuro symptoms

Barney
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Posted: Fri Apr 10th, 2009 05:35

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Lux,

You can use mino daily to slow the IP's to tolerable, even 6 or 12 hrs daily.

HANG IN THERE, WE WILL MAKE IT!!!BARNEY

luxman
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Posted: Sun Apr 19th, 2009 15:40

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Hi everybody, I'm back from holidays. I've slept plenty, and at times, I felt better. There have been at least two days when my dizziness was gone or almost gone. At the same time, my neck weakness has been getting worse.

I drove a lot yesterday, and ended up feeling horrible. General malaise, slight nausea, some joint pain... It may be my imagination, but perhaps I'm also becoming a bit sensitive to sunlight. I noticed how it bothered me while driving.

When carrying heavy bags for a relatively long distance, my hands turned red again (without any heat sensation, just the discoloration) for a few minutes, with a spot on the back of my hand staying red for almost a full day. This is relatively new, though it also happened to me once or twice before starting the MP.

All in all, my symptoms come and go, wax and wane, but they follow no clear pattern, and don't seem to correlate at all with the schedule of taking my Mino. I've been taking it for three weeks, and while I will definitely continue the treatment, I'm getting more and more worried that it isn't working, and that my problems may be something completely different. (What, though??)

____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended

Barney
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Posted: Sun Apr 19th, 2009 15:51

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Lux,

Glad you had a good trip despite some IPs....it is always good to get out.

My neck has always been a problem too. I take xtra Benicar and 2 tylenol and I do get some relief. My neck, shoulders and hips have always been my worst to deal with.

Here is a link to the new updated Phase 1, which gives links to everything on MP.

http://AutoimmunityResearch.org/Phase1.pdf

Hope you will not only read this, but also print it out so that you have it readily available.

I just went thru a 36hr sleeping episode (something that happened to me in the 80's during a time when my disease was running rampad). There was a time when I wanted to give up on my treatment, but after 2 hrs on the phone with a fellow MP'r I was settled into doing what I needed to do...MP to the end for a cure.

HANG IN THERE, WE WILL MAKE IT!!!BARNEY

Last edited on Sun Apr 19th, 2009 15:54 by Barney

luxman
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Posted: Wed Apr 22nd, 2009 13:57

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Thanks, I'm reading and reading and reading.

I had some good days, even thinking that there's improvement... Only to be followed by really bad days. And there is no relation between the time I take the meds, and the way I feel. Everything seems to be random.

How do I know when I should ramp the Mino if I see no IP pattern?

Would it be possible maybe to have a health pro look at my thread, and offer some advice and/or encouragement?

It's not that I'm not infinitely grateful for all the support I get from all of you guys. But maybe someone who has been overseeing hundreds of patients might have some additional insights that could be useful...

Chris
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Posted: Wed Apr 22nd, 2009 14:36

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When my IP is random, the sources would be too much light or a diet change.

As your D level gets down, you might becoming more light sensitive. You might try going to ridiculous levels of dark for a weekend to see if it smooths things out, and then slowly work up in light levels.

Sugar is still a problem for abdominal pains for me, but only with Bactrim, and only at the peak of the Z+B cycle.. At the start of the MP, as you are, any bounce in carbs might be trouble.

Chris

____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story

luxman
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Posted: Wed Apr 22nd, 2009 14:40

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Thanks for the tip, Chris. I think I'll try the ridiculous dark levels this weekend. What should I expect as a result?

Chris
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Posted: Wed Apr 22nd, 2009 15:24

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Results - that's hard to say in detail. In my experience, going dark reduced the mental fog and anxiety, and helped regulate the other herx/IP, so that there would be good times and bad times on a regular 2-day schedule (or 10-day for zith).

This does all depend on your immune system. There was a time when my herx was close to non-stop, as the immune system had become fully active and tried to kill everything at once. I've wondered if some of the less-ill folks might not that encounter that earlier in the cycle, or if they'd encounter that at all. That's one reason why I try to be careful to say that "Your Mileage Will Vary." (My apologies if that is a USA only funny, as here it is a tag line for car commercials - but as 'your mileage may vary')

Chris

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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story

luxman
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Posted: Wed Apr 22nd, 2009 15:39

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The thing is, as I googled my symptoms, wondering what disease I have (as I'm still undiagnosed), the closest fit I could find were MP herx symptoms! That is, without even being on the MP.

Before December, all I had was dizziness and (loosely self-diagnosed) IBS. Then I developed a cough, and went on some short-term abx, and then some herbal stuff againts mycoplasma... and my symptoms started multiplying and worsening.

I'm speculating, but maybe my immune system has been attacking these things all along. Would that have shown up on my bloodwork?

Also, out of the 51 easily detectable hypervitaminosis D symptoms among those listed on these sites, I have had 19 at some point...

Anyway, sorry if I'm going round in circles, trying to convince myself that I have Th1 and am on the right track to recovery... and then having doubts again. I must sound like a broken record.

PS.: I do understand the expression "your mileage may vary." My English is a strange mixture, and comes from learning it at school, working with British and U.S. expats, watching Hollywood movies, and reading stuff on the web. I've never lived in a country where English was an official language, so I could never pick up a dialect, but I guess I've been interacting mostly with Americans, so my English must be a bit closer to the U.S. version than to any other...

Last edited on Wed Apr 22nd, 2009 15:43 by luxman

Chris
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Posted: Wed Apr 22nd, 2009 19:54

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Anyway, sorry if I'm going round in circles, trying to convince myself that I have Th1 and am on the right track to recovery... and then having doubts again. I must sound like a broken record.
I think we've all had those doubts. Most of us had at least one diagnosis to hold on to when deciding to do the MP. But we all did chase our tails trying to convince ourselves that all the symptoms not tied to the diagnosis were really herx.

If the MP is making things worse, then it's also making them better in the long run.

Oh, and as well as sugar hitting the IBS, look out for wine and beer, especially dark beer, to do the same thing.

____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story

luxman
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Posted: Thu Apr 23rd, 2009 12:32

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Any pointers on the "ridiculous levels of dark"?
Can I read a book by dim light?
Can I use a computer?
Can I watch TV?
Can I go out after dark, and be under street lights?

Thanks!

Knochen
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Posted: Thu Apr 23rd, 2009 13:38

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Any pointers on the "ridiculous levels of dark"? Can I read a book by dim light? Can I use a computer? Can I watch TV? Can I go out after dark, and be under street lights?

During daylight hours (any kind of sunlight) Stay indoors. No twilight walks.

TOTALLY block ALL sunlight from your indoor living areas. Use only artificial light (incandescent bulbs preferred) at 30 Lux or below - remember that the Lux depends on your distance from the light source. A few feet from a 40 watt bulb is generally fine, but it's better to measure it. Looknig directly at the bulbs is not a good idea, I'm talking about light over your shoulder for reading.

TV, computer, reading a book, out at night? Wear Noirs at ALL times. ALL. Not some times, ALL. 10% Noirs should be OK for this sort of use, unless you have a very bright screen.

Also, it may take more than a few days for things to settle from light exposure. A week under these conditions would be better for really determining if it's helping or not.

Keep up your benicar blockade. Keep your diet strictly controlled. You need to be comitted and willing to stick with hard choices on the MP. Second guessing yourself and expecting to get "better" after a few weeks is unrealistic and counterproductive. If you find yourself doubting, ask yourself, "where else would I go for a cure?".

____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.

luxman
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Posted: Sat Apr 25th, 2009 20:15

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Hi all... Here I am in my dark cave... All this low light (plus my usual fatigue, plus my lack of enough sleep all week) makes me want to sleep all the time.

I might feel a bit better, though. I was watching TV from a distance, in the 10% NoIRs, without any adverse effects. (I was actually watching Trevor's Prague and Chinese presentations). Sitting in front of my 20" iMac, however, is somewhat bothersome, even in the NoIRs, so I'm limiting it. I'll try to read a bit, and then venture outside when it's totally dark.

I should do this for an entire week or more before I could have any conclusions... But I really can't do that; I work.

Maybe I will bring up the light sensitivity at work. I work in a room with someone else, so it might be difficult.

Meanwhile, some things I've been thinking about.

Paul had a post somewhere on geographic location. That got me thinking about my situation.

I grew up in Hungary, and moved to Luxembourg three years ago. Hungary has an extreme continental climate, with hot, sunny summers. By contrast, in Luxembourg, it's apparently always November...

I've always loved the sun, and hated the rainy weather here. However, I also noticed that I'd had lots more energy since making the move. I'd been much more active physically here than back in Hungary.

But then, after several months last year with hardly any sun exposure and no sunny holidays (the weather being exceptionally bad), I fell ill.

I'm not trying to suggest that this might have been the single factor behind my illness. Maybe not even a significant factor. But I think it was a factor.

Something else, too... I took another look at the "foods to avoid" list. Why is it that I never liked any of those foods in the first place? I hate mushrooms and most of seafood (though fish is okay sometimes). I'm disgusted by animal fat. The only things I like from that list are liver (rarely), eggs and mayonnaise.

OK, I'm signing off... I'm experiencing some symptom flare-ups, and I'm wondering if they're due to IP (there might be a very slight, hardly noticeable trend of getting worse about 5 hours after the mino, and this fits the pattern), or due to sitting in front of my Mac. If it's the latter, it will have to stop...

Cynthia Schnitz
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Posted: Sat Apr 25th, 2009 23:02

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One of the ever present herxes I have had on the MP, and it is just now almost gone at 6 months into the MP, is lethargy. But, it was at its worst about 2 months into just Vitamin D and light reduction, about 2 months before starting the MP. So, with your light reduction after your move, and a normally low D diet, you may have had an improvement in your immune system that gave you a non-abx dependent herx. I am quite sure that my immune system started up at about my high lethargy time as I also had my toenail fungus start to go away, and I noticed that the last of my intestinal Candida stop being a problem, as I found I could eat all the yellow cheese I wanted with no symptoms. I think those of us that are not very seriously ill, unlike many on the MP, have marginally functional immune systems that can be stimulated with just a little extra help. Cynthia

____________________
Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory

luxman
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Posted: Wed Apr 29th, 2009 13:04

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Quick update. So I spent the two days in the dark... and while no clear herxing pattern emerged, it all made me feel better, and three days after coming out of the cave, I'm still feeling better.

Problem is, if this was an experiment, it wasn't a very successful one, as I should have only changed one aspect (i.e. light exposure) if I was going to measure its effect, but with low light came low activity (even though I did exercise a bit indoors on the second day) and lots of rest, so the improvement I feel may be due to a combination of several factors.

I track my symptoms daily on a scale of 0 to 5. My total has been around thirty now, while after my long drive, it had jumped up to around 50. I have graphs too, maybe I will upload them somewhere...

I don't know if I'm herxing at all... I think I am, but if I am, then it's subtle, so much so that minimal changes in daily activity and/or light exposure and/or foods may make bigger differences than the mino.

I think I will increase dosage to 75 mg of minocycline. In my two-day dark experiment, my symptoms did not exacerbate significantly on the mino, so I don't think 75 mg would do anything bad.

And besides, I've been on 50 mg for three weeks now.

Maybe I'll do another 50 mg dosage (due in two days) to see if I'm stable, and ramp if I am.

Thanks for everyone who follows my postings. I read people's updates all the time too, but remain quiet... After all, what wisdom could I offer, I'm really a newb here.

Take care, everyone!

Barney
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Posted: Wed Apr 29th, 2009 16:11

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Lux,

Here is some homework for you. It is showing how we are moving forward with the MP. As Trevor will tell you in the videos "It is not about the abx, IT IS ALL ABOUT THE BENICAR", here is the links, please be sure and watch the videos:

The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you, here is a link:

http://AutoimmunityResearch.org/phase1.pdf

Please print this out for future reference!!!

I will also, give you a link to the the Prague presentation that Trevor just got back from, lots of information to move on saying that the Benicar is more important than the abx.

During the recent Workshop on Clamydial Infection in Prague, Czech Republic, I gave an overview of the therapy which has become known as "The Marshall Protocol." An HD video of that presentation is available at:
http://vimeo.com/4293599

In Prague I also summarized the Science underlying that therapy. The HD video is at http://vimeo.com/4307469

ENJOY!!

HANG IN THERE, WE WILL MAKE IT!!!!BARNEY

Last edited on Wed Apr 29th, 2009 16:11 by Barney

luxman
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Posted: Sat May 2nd, 2009 13:43

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Barney wrote:
Here is some homework for you. It is showing how we are moving forward with the MP. As Trevor will tell you in the videos "It is not about the abx, IT IS ALL ABOUT THE BENICAR", here is the links, please be sure and watch the videos

Thanks, Barney! But I've been a good student, and already watched these videos... and then couldn't stop, and watched all that Dr. Marshall had on Vimeo. This is all quite fascinating. Part of me says, "But of course!", while part of me is still skeptical... I hate this second part, but it's part of me, and it has kept me from trouble in the past, so I can't just make it go away...

My symptoms are relatively mild for now, so my next dose of Mino will be 75mg, due tomorrow.

Also, while I was sometimes hypertensive before starting the MP, with readings between 130 and 160, even 170 systolic, I'm now constantly on the low side of normal, hardly ever going above 110. That, of course, may be exclusively due to the hypotensive qualities of olmesartan, but still, I thought I'd note that.

I'm reading about everyone's progress here (and on the MP forum as well), and I'm happy to see all the improvements!

bobsyouruncle
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Posted: Sat May 2nd, 2009 14:52

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Hi Luxman

I was also on the high side (130-138 systolic) prior to MP and rarely get above 110. But that kind of jump is more than the 12-15 drop expected from Benicar. Benicar does not have a proportional effect to it's dose ... so surely a drop from of 50, such as in your case, would be a good sign that the MP is working?

PS if you enjoy Trevor's videos, have a look at the old ones from 2006 on YouTube, they are very detailed. I enjoyed them. There are some goodies on Bactieriality by Amy Proal and others.

All the best.

____________________
Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.

Barney
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Posted: Sat May 2nd, 2009 18:43

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Hey guys,

So glad you are enjoying all of Trevor's videos and his vast improvements to the MP. I have always hoped that we would learn enough thru the years of doing MP to make it simplier for the newcomers and we are. We are all making history.

HANG IN THERE, WE WILL MAKE IT!!!BARNEY

luxman
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Posted: Wed May 6th, 2009 22:33

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So Barney, if I start Phase 2 in a month or two, perhaps I won't even need to be taking Zith? Is that what the new shift is about?

Anyway, don't need to know yet. Just wondering how I will cut pills to 1/10 size, that's something I'll have to figure out. Cutting Mino to half is difficult enough (though those tabs are tiny).

I'm tracking my symptoms in a spreadsheet. I score each symptom between 0 (not present) and 5 (intolerable), and I even draw a chart of the total. The highest-ever value I had was 50 on April 20th, and afterwards, it went down gradually to below 30. As it was pretty stable there, I upped Mino to 75 mg. Sure enough, my symptoms have jumped to a 37 today (even though I took the Mino yesterday).

The pattern is still pretty vague, so I'm still not 100% convinced that I'm reacting to the MP. But on my good days, I feel better than I did in a long time. Perhaps it's too early to tell what this means, but some symptoms (like a difficulty in holding my head up due to neck muscle tiredness) are in remission.

The main problem I've experienced since upping the dose was kidney pain. It's pretty scary, even though I know that it happens all the time on the MP. As I said, my creatinine has been highish for years, and now my eGFR already started decreasing on the very first days of the therapy... I just really don't want to end up like a family member who spent the last 25 or so years of her life on dialysis.

Thanks for stopping by and rooting for me, I really appreciate it.

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