| Author | Post |
|---|
JohnMcC
registered
|
Posted: Thu Mar 12th, 2009 14:01 |
|
Hi Knochen,
I did read the site info first but decided that I could rely on Megs last para -
"Melatonin appears to have some use against circadian rhythm sleep disorders and delayed sleep phase syndrome and may be a safer palliative then other sleep aids for intolerable insomnia.~Meg"
insomnia is making me edge towards a crisis and a balance has to be struck or I will be in one. If there are other/safer non prescription ideas I'm all ears.
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
carol
Support Team
|
Posted: Thu Mar 12th, 2009 17:14 |
|
John:
Have you considered a prescription sleep aid? I use generic ambien with good results when I need to make sure I have a regular sleep pattern. I used to use it frequently, now I only use it occasionally.
Lack of sleep makes everything harder, that's for sure.
Carol
____________________
rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
|
JohnMcC
registered
|
Posted: Thu Mar 12th, 2009 17:27 |
|
Hi Carol,
So far I have tried to avoid prescription level meds - like many I have taken so many meds in the past....apart from the MP ones of course.
If this doesn't ease up in a few days I will need to call my MP doc, I am really getting weak
Thanks
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
Knochen
Member
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 380 |
| Status: |
Offline
|
|
Posted: Fri Mar 13th, 2009 01:16 |
|
Generic dramamine (Dimenhydrinate) (NOT the non-drowsy stuff ) works pretty well for me. I get it at CVS as "Anti-Seasickness" medication - very cheap. It's certainly worth a try first before hitting the heavier stuff. Insomnia's no fun, I've had plenty of it from time to time. You may need to back off the meds a bit to help stabilize.
Good luck!
____________________
Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
|
JohnMcC
registered
|
Posted: Fri Mar 13th, 2009 02:39 |
|
Thanks Knochen
Much appreciated
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
JohnMcC
registered
|
Posted: Tue Mar 24th, 2009 19:50 |
|
Day 178 MP
Mod Phase II meds 2/3 through
Hello All,
I finally managed to get some sleep with a little help from low dose valium..
The modified phase II has been a real challenge and now that all is stable I am taking beni Q4hrs during work hours and Q6hrs outside of work, everything is almost clear again...
I will enjoy the respite for a week or three then plan a step up in my abx - there is no point in rushing....
A few benefits of the socially accepted dope is that I don't suffer restless legs & anxiety at night - even though I may be awake for a few hours, my mind is relatively quiet and I am quite relaxed........huge improvement. The next trick is to be like this without the safety net..
Palpitations have finally quietened down to background, arthritic pain is reduced and light sensitivity has reduced as well. I have made a stronger zinc cream (around 20-25%) and there are days I will border on Geisha, it really seems to help getting around in the very bright spring time sun.
I need to find some more suitable travel clothes (hoodies, hats etc) for summer travel as I will be on the road a lot...the search comntinues - prefereably from a reasonably local source. My current supply is great for fall & winter.
I was a bad boy and ate some peppered shrimp (I made for guests but instinctively hit the trough)......my wife stopped me at # 3 - knocked me flat for a while, felt quite flu like.
I was quite unhappy with my MP Doc for insisting on the modified phase, because I wanted to move through....I think it is a positive step that despite the reactions, I wont have to tackle these bugs again and while I'm certain there will be more neuro coming my way I have already killed many, many bugs.
What do you call one dead intraphagocytic metagenomic bacterium......a start!
How will I live with myself once I get me back......
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
expate
Member
|
Posted: Thu Mar 26th, 2009 05:30 |
|
Hmmm, on the restless leg issue... well, I had no clue what that was until I started the MP and experienced it as IP. A week or three ago (who's counting these days?) I had the arm equivalent of restless leg. My forearms had that "something's inside and wants to burst forth" sensation. Weird... and comforting. Good to know the MP is at work.
dette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
|
JohnMcC
registered
|
Posted: Thu Mar 26th, 2009 14:32 |
|
expate wrote: My forearms had that "something's inside and wants to burst forth" sensation. Weird... and comforting. Good to know the MP is at work.
dette
Hello Odette
'Tis an unusual sensation and one that I hope to be rid of in the coming months & years.
I didn't really understand what was happening (that it was not normal) until I started reading the MP site and finding so many with the same symptoms...
these bugs are weird...gladly no match for the MP
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
Barney
Support Team
|
Posted: Tue Mar 31st, 2009 02:45 |
|
John,
I love reading your posts.
I had the same thing only it was like a considerable sized 'beastie' was trying to get out where they removed my right kidney. (My scar goes from my spine to clear over and around my side almost to the front) I guess that 'beastie' could be a pretty good size with a scar that big. lol
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
|
JohnMcC
registered
|
Posted: Tue Mar 31st, 2009 13:55 |
|
Hi Barney,
Wouldn't it be wonderful if we could just extract the TH1 bugs in a lump......
Nah...why miss out on the journey...
It will be interesting to see what your healthy, robust immune system does to that scar over the next few years....
Regards
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
k
Member
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Tue Mar 31st, 2009 22:57 |
|
I wish there was a 'switch'... you know, "okay, I've got the time and energy to deal with 3 hours of herxing now" - flick the switch on and go for it. "Okay, have to go to a special event this evening, switch herxing off"....
regards, k
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil hydralazine Ph1Oct07 25D50Jul07 25D23Oct07 25D13Jan08 NoIRs cover-up low lux home lite exp r/t to work Ph2Feb08
|
Barney
Support Team
|
Posted: Tue Mar 31st, 2009 23:28 |
|
John,
I could love that lump removed, but then I would not know how to help on MP.
k,
When you get that switch made, I will buy one from you. LOL
HANG IN THERE, WE WILL MAKE IT!!!!!!!!BARNEY
|
JohnMcC
registered
|
Posted: Mon May 11th, 2009 01:49 |
|
Day 225 MP
107 Days Mod Phase II meds 3/4 through
Allowed myself about 10 weeks at the previous level, which allowed me to feel incredibly normal, very little IP, clear head, sense of humour - at the little things that had I had missed since starting the MP.
I started another level up in doseage and have a welcome return of cardiac IP, brain fog and heavy fatigue. I take beni Q4hrs during work hours so that I can maintain a level of competancy and the odd sublingual 20mg when things get a little bumpy.
Have found that low dose valium really has made a huge difference in my ability to get rest and sleep, better protective clothing for outside work & travel have prevented bad light reactions.
Grumpy Sloth would be a good way of describing where my head and mood are right now.....but as I have learned, once my bacterial load succumbs to this level - things will mellow out again and I can enjoy some clarity...another step on the journey
Kinda hoping that in the not too distant future, Grumpy Sloth will be a halloween costume choice...
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
JohnMcC
registered
|
Posted: Wed Jul 15th, 2009 20:46 |
|
292 Days on MP
117 Days Phase I
175 days Mod Phase II
Hi All,
I start full Phase II on Friday...woohoo!!
Mod phase II was a neccessary evil and I think that stepping right into full phase II would have been hard on me. My fog days have lessened, I have had a few interesting changes (arthritic fingers - all gone, varicose vein - gone, violent/angry thoughts - almost calmed)
6 months of Neuro IP is quite enough for now - hopefully, I will be able to "enjoy" some physical gains in the coming months instead (but I'm sure the crazy days will rear their ugly head too)
Another step on the Journey
Regards
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
Alayne
Member
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 579 |
| Status: |
Offline
|
|
Posted: Thu Jul 16th, 2009 09:09 |
|
Hey John,
Good luck with Ph 2! I did Mod Ph2 and it was really just too much fun. In fact, I wish I could go back. KIDDING! Yeah, the clindy makes for some "interesting" neuro IP. Wish you the best in the upcoming months on Z & M.
Have a question re: your signature line:
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/09
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
Are the bolded dates supposed to be 2008 instead of 2009? Because the first date will put you ahead of our time. On the other hand, I know it's cool to be ahead of your time.
Sorry, just had to ask!
Cheers,
Alayne
____________________
CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
|
JohnMcC
registered
|
Posted: Thu Jul 16th, 2009 12:19 |
|
Thanks Alayne.... Good eye!..
I will amend my time traveling habits..
Regards
John
Last edited on Thu Jul 16th, 2009 12:20 by JohnMcC
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 797 |
| Status: |
Offline
|
|
Posted: Fri Jul 17th, 2009 01:48 |
|
JohnMcC,
I am curious, is this your basic progress report-like thread? Or do you have another one?
I'm not curious enough to go digging around, but I wondered. (Probably a 'neatness herx' on my part. )
Last edited on Fri Jul 17th, 2009 02:21 by Joyful
____________________
Search the MP Knowledge Base __ Be Kind, We Are All Fragile
•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•
|
JohnMcC
registered
|
Posted: Fri Jul 17th, 2009 13:08 |
|
Hi Joyful
First post shows that I missed the Study cohort and was going to try and document as I went along in this forum.
Since starting the Mod phase II, I had access to the Phase II/III forum where I could detail meds etc
Just hate to leave a thread dangling..so to speak.
Regards
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 797 |
| Status: |
Offline
|
|
Posted: Sat Jul 18th, 2009 06:17 |
|
Ah, so. There it is > johnmcc on Mod Phase II
Well, it would be good to have your progress all together.
I will consult with whomever can help with that.
____________________
Search the MP Knowledge Base __ Be Kind, We Are All Fragile
•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•
|
Current time is 12:58 | Page:   1 2 3 4 |
|
