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madwolf
Health Professional
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Posted: Tue Aug 10th, 2004 00:05 |
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I took my 4th dose of mino last night. I am still on the 1/8th cap or 6.5mg. I want to go slow because I must continue to work.
The first dose I had a mild herx, nothing to speak of. The second dose, I had a much worse herx, and my left (non-injured) knee started to ache, something that continues today. I took a cycle off, because I had to move some stuff and didn't want to be feeling ill. After the third dose I herxed for 96 hours. I didn't take another dose until last night, after about 12 hours herx free. I woke up this morning without a herx, only to have it develop about 2 hours later. No I feel achy, icky, nauseated and I am sweating like a sailor on payday! I can work through this, so it is not too bad.
I like the idea of using applesauce to take the mino with until I get to 50mg.
If I feel better tomorrow (don't expect it, but if...), I will take the next dose of mino. Will keep you posted.
madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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madwolf
Health Professional
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Posted: Thu Aug 12th, 2004 01:08 |
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well, except for mild herx about 12 hours after taking the mino, I have felt fairly good. My knee still hurts, something I attribute to herxing, or inflammation uncovered by MP. I'll try the next highest dose tonight, 1/4 of 50mg or about 12.5mg.
SteveF
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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madwolf
Health Professional
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Posted: Fri Aug 13th, 2004 21:49 |
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I took the 1/4th of a 50mg cap of mino 2 nights ago. Felt like I had been shot at and missed, sh*t at an hit for most of yesterday. Today, I feel a bit slow, cold and sweaty, so the herx continues. I seem to herx the most about 12 hrs after taking the mino, and then have a mini herx at 36-48 hrs.
Just found out from Sujay that she and Trevor both suggest that I be stable for 2 weeks before increasing the dose!!! I was stable for 48 hrs.
My lovely bride is pushing hard, too. She felt horrible the first day at 1/4 of a 50mg (12.5mg). I will stay at this dose until stable for 2 weeks, then increase it again. Question-what do I increase it to when the time comes?
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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madwolf
Health Professional
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Posted: Sat Aug 21st, 2004 07:29 |
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Stepped up the mino to 12.5mg about 48 hrs ago. The last 10 hours have been absolutely horrible. Achey from neck to toe, chills and cold sweats, pain level of 7. Not nice. Even running my trains didn't help my mood, and that has always been refuge when I get sick. (Some people say that is sickness by itself, but there is another web page for that. )
Went to bed, listening to my lovely bride vaccuuming the house (where does she get the energy) and slept the sleep of the dead for 4 hours.
Had the wierdest dream. Not scary, just wierd. Diana and I played the part of the neighbors in an English cottage movie set in post WW I England. The central characters were the usual strange English WW I vet and his equally strange mother. Think of the play, "The Enchanted Cottage." They shared a small cottage surrounded by a lovely garden, in which there was an O-Scale model railroad running through the garden. I told you this was strange. Stay with me, it gets even stranger. (For the uninitiated, an O-Scale railroad is about the size of the Lionel trains we played with as kids. 1:48. A 6' man is about 1.5 inches tall.)
As the movie(dream) unfolded (did I mention that I dreamed this in sepia tone?) the man and his mother became disenchanted with the garden railroad, and arranged with the mad government scientests to mount an O-Scale nuclear strike on their garden and it's railroad. This strike was successful, wiping out the grarden and the railroad, but nothing else. Shortly after the strike, I was called to attend his mother who had appendicitis and the government hospital was full and could not accept her as a patient.
This is really not supposed to be a political diatribe, but just a record of my very strange dream.
Of course, the patient lived.  There was another scene where mutant tape worms were trying to find hosts in people, dogs and cats. Not sure of the outcome there, but suspect that they became either "Stepford" like people and pets, or the worms developed into "Aliens" dripping mucous from their teeth.
The rest of the movie was how the garden and railroad were rebuilt, and about our astonishment at the accuracy of the government O-Scale missiles and warheads.
All of this was set in the beautiful English country-side, where every cottage has a garden and every garden is well tended.
I am curious to find out what happens next.
madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Aug 21st, 2004 09:28 |
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Steve,
Have you read our paper from 2001 " Valsartan Dosing Regime Modulates Psychotic Events in Two Sarcoidosis Patients"? 
http://clinmed.netprints.org/cgi/content/full/2002080006
..Trevor...
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barbski
Member in Phase 3
| Joined: | Tue Jul 20th, 2004 |
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| Posts: | 487 |
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Posted: Sat Aug 21st, 2004 11:25 |
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Madwolf,
You're dreaming historical inaccuracies - post WWII, as all UK'ers know, Great Britain was not in sepia, but black and white . And our National Health Service wasn't founded till 1948, didn't properly get going till the 1950's and didn't start turning people away due to cutbacks till the early 1990's.
I can't wait to hear what effect the Marshall Protocol has on your future dreams!
Best wishes,
Barb
Last edited on Sat Aug 21st, 2004 11:25 by barbski
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05)
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jarjar
Member in Phase 3
| Joined: | Thu Aug 5th, 2004 |
| Location: | Texas USA |
| Posts: | 35 |
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Posted: Sat Aug 21st, 2004 12:49 |
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Anyone that has studied dreams very much knows that things in your dreams often represent something in real life. Perhaps the train and track represented your disease and you were able to wipe it out. Just putting a positive twist on your dream.
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Lyme/CFS for 18 years. Feet Neuropathy, tinninitus,cognitive difficulties.
10/04 vita D 47 vita d 1.25 36
02/05 vita D 31 vita d 1.25 39
08/06 vita D 20 vita d 1.25 49
11/06 vita D 13
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madwolf
Health Professional
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Posted: Sun Aug 22nd, 2004 16:31 |
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So, Trevor, I guess this means that all doubt is removed, then? Fully certified as psychotic.
There are some who say there has been no doubt for a long time.
Had another strange, entertaining dream last night. Unfortunately, I don't remember any of the details, except thtat it was entertaining.
Wierd.
madwolfLast edited on Sun Aug 22nd, 2004 16:31 by madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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madwolf
Health Professional
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Posted: Mon Oct 11th, 2004 20:23 |
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Been a while since I've reported on how it goes.
I'm still verticle!
Still having entertaining dreams. Curiously, nothing about the Navy. I guess I am really retired from the Naval Service.
My herx's seem to be mostly pain oriented. I have an odd, non-anatomic "neuropathy" in my legs. I say non-anatomic because it does not follow the expected dermatomal patterns. When I walk for more than a half mile, I get this odd sensation that the anterior part of my feet is a lump of clay, with no sensation, that the lateral portion of the upper legs are numb and tingling, and that all of my lower legs have this cold tingling sensation. Additionally, my legs do not answer the helm, they do not do what I want them to do, which makes me stagger as if I have been on Fleet Liberty in Hong Kong!
I don't get any, well, not much in the way of nausea, just that odd neural herx.
I find that I have to wait for 96 hrs between doses for the herx to stop, which has slowed my progress. Been taking the Mino/Benicar/Quercitin since the 1st of August, and I am all the way up to 25mg of the mino. I just keep pluggin away.
madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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carol
Moderator
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Posted: Mon Oct 11th, 2004 22:33 |
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madwolf wrote: I find that I have to wait for 96 hrs between doses for the herx to stop, which has slowed my progress. Been taking the Mino/Benicar/Quercitin since the 1st of August, and I am all the way up to 25mg of the mino. I just keep pluggin away.
Madwolf:
I am struggling with this myself. My herx symptoms come and go during the 48 hours after I take the Minocin, but I'm at the point where I'm not sure I can say they are completely gone before I take my next dose. I've been averaging 60 hours between doses. I guess I'm enough of a data-driven person that if the time-concentration curve for Minocin indicates that it's gone after 48 hours, I want to believe that it's OK to forge ahead.
I would be interested in any additional thoughts you have on this.
Thanks,
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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kemsoup
Banned
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Posted: Tue Oct 12th, 2004 09:41 |
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carol wrote: I'm enough of a data-driven person that if the time-concentration curve for Minocin indicates that it's gone after 48 hours, I want to believe that it's OK to forge ahead.
Carol & Steve,
For thought, I found some other numbers re the decay of minocycline in vivo. This is not to negate the usual time-concentration curve showing 48 hour dissipation of drug--in most folk. One source (Appleton & Lange's) lists half-life for minocycline at 11-26 hours. For measurement purposes in the lab, we usually consider seven half-lives before a drug is assumed to be "gone." So, starting with "usual" therapeutic plasma levels (and we already know MP levels are going to be very low anyway), using the range above we could see some detectable levels of drug, in some people, potentially out to 77-182 hours (3.2-7.6 days). Since we are very sensitive to low levels of minocycline, we might still be experiencing some extended herxing beyond the usual expected 48 hours. Might be possible explanation.
Best Wishes,
Steve
Last edited on Tue Oct 12th, 2004 09:44 by kemsoup
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sujay
Health Professional
| Joined: | Sun Jul 18th, 2004 |
| Location: | Washington USA |
| Posts: | 68 |
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Offline
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Posted: Tue Oct 12th, 2004 17:28 |
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I agree with both Steves. In any event, it's important to remember: DON'T TAKE YOUR NEXT DOSE (of antiboitic) UNTIL YOUR HERX IS GONE. This type of herxing does occur from time to time, and may also be related to uncovering a pocket of bacteria that allows the immune system to go on a killing spree.
Happy hunting!
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madwolf
Health Professional
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Posted: Thu Oct 14th, 2004 21:02 |
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Oocchhhh, I'm not worried about the time. Whatever it takes to kill the little beasties.
I tell all of my patients to make sure they wait untill all of the herx is done, and to not worry about how much time it takes. We've, most of us anyway, been sick for a long time, and it will take a long time to get well. Just relax and enjoy the ride.
I've had 3 back to back good days! Minimal pain, pretty good energy. Real good sleep. Interesting dreams. Actually dreamed about the Navy, last night. I was the hero, this time, and they wanted me for a secret mission. Then I woke up.
Still at 35-40mg. (3/4 of a cap) Still have the odd neural herx, but now it is mostly in the left leg only.
madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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carol
Moderator
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Posted: Fri Oct 15th, 2004 02:17 |
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Madwolf, Steve, Sujay:
This approach to dose timing makes a lot of sense. Thanks.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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madwolf
Health Professional
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Posted: Mon Oct 18th, 2004 22:23 |
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Oops, i made a boo-boo.
Last night, while getting my meds ready, I set a minocycline cap aside to split. Got distracted, scooped them all together, and took a full 50mg cap. Mu usual dose so far has been 25mg, and Herxing well enough on that, thankyou very much.
This morning, I woke hurting badly, all muscle pain, no joint pain, fatigue and nausea. That was after only 12 hrs. I've been able to work, today, but with a bad case of GERD that doesn't respond to Nexium, nor to antacids. I wonder what this will be like at the 48 hr mark. Not looking forward to that. I am taking 500mg of Quercitin with each Benicar, and I've got the "lemonaide" standing by if needed.
Sigh.
Can I have some cheeze with my whine?
madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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madwolf
Health Professional
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Posted: Tue Oct 19th, 2004 21:16 |
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I seem to have survived. Have more pain in the hips, which is new. THe knee pain is gone. Had some nausea yesterday, but the Q-pill took care of that.
Think I will go back down a notch for the next dose.
madwolf
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Dx: Psoriatic Arthritis, FMS/CFIDS, Raynaud's Restarted Phase 1 in Noremember 2007 Current 25-D is 35, Non-MP meds: Armour thyroid, 60mg qd. Cymbalta, 60mg qd. CoReg CR 40mg hs. (BP still stable) Januvia 100mg qd, Byetta 10 mcg sub-q bid.
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