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Dr Trevor Marshall
Research Team
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Posted: Wed Mar 22nd, 2006 03:20 |
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Diana,
Our thoughts are with you and your husband during these tough times
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Aunt Diana
Member Advocate
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Posted: Sat Mar 25th, 2006 15:21 |
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Thank you all for your kindness and support.
Last Tues. my husband underwent quadruple bypass surgery, he was more clogged than they realized. Plus they repaired a leaky valve and performed a Maze operation for fibrillating. I saw him yesterday and was pleasantly surprised, although he will experience much pain in the coming days I think he's already looking better...his coloring was much better and he was ab le to joke around and act for himself. He'd already been up with some physical therapy.
I am greatly relieved by all this.. God only knows if he'd even be alive today if he hadn't had this operation.
My sister in law is comimg to stay with us for a week or so, so that she can help and so that I can start back on the MP. We will also be having visiting nurses so on Monday I'd like to start back.
It's been about two weeks that I have been off the mino....i was doing 50 mg every three days and wondered what dose I should start at when I go back to it. I have been doing all the other aspects of the Mp as well as I have been able.....still in cave and covered totally when I go out and still taking the benicar. I believe I'm still herxing albeit very mildly.
Again thank you all for your support.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Mar 25th, 2006 15:30 |
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Diana,
When you've taken a break from the MP for an extended period, it's always best to err on the side of caution and restart with 25mg of minocycline every other day as per the phase one guideline. Based on your symptoms, you should be able to ramp up faster than the first time around and will soon be back to where you left off.
As always, keep the dosing adjustments in mind to make sure the Herx reactions are tolerable.
My best wishes for your husbad's speedy recovery,
Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Aunt Diana
Member Advocate
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Posted: Mon Mar 27th, 2006 17:58 |
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Bill has been doing quite well. He'll be coming home in a few days so I think we're past the worst part. HIs sister is arriving today to help out and to enable me to start on the MP again.
We will be getting lots of help from Visiting Nurses, I'm told and I believe they will arrange for doctors trips and future hospital visits.
I just got my D results from the doctor Vit D : 10, and 125D is at 31. I'm pleased with that progress and wonder if that is why I am still herxing even though I have been off mino for two weeks.
Today my herx symptoms are heavy legs, achy shoulders and arms, and I'm sleeping alot.
I think I'll start up on mino tonight but not sure til I speak with my sister in law. Thanks again for all the kind words
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Dr Trevor Marshall
Research Team
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Posted: Mon Mar 27th, 2006 19:04 |
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Glad to hear Bill will be OK.
Yes, your innate immune system can work properly when the VDR is not over-stimulated, and the antibiotics are often not necessary. They do ensure a more even species-kill, and a establish a pattern to the herxing.
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Aunt Diana
Member Advocate
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Posted: Wed Mar 29th, 2006 00:52 |
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I just recieved my latest test results take non 3/14/06 (before I stopped taking mino)
ACE 28
Renin 51
All 240
25-OHD <10
1,25 (oh)2D 64
My doctor would like your interpretation of these. thanking you i advance
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Wed Mar 29th, 2006 02:04 |
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Diana
I see that your 25D has halved since your first tests.. good work..
You may like to print these FAQs and any relevant links within them, for your Dr.
What do my lab tests mean?
How often should I test D levels? What are the target numbers?
Let us know if Dr has further questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Fri Mar 31st, 2006 02:53 |
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I started back on 25 mg mino 3 days ago...I'm dismayed at my level of herxing....I've been sleeping a lot and and am very achy and weak. While I was off the mino those two weeks I was practically normal. I'm trying to figure out some adjustment while my sister in law is still here, but she leaves on MOnday and then I'm on my own with Bill who has a whole raft of other problems.
I can see if I can get other help in here but at the moment don't kknow how I can handle him, doctors and hospital visits, etc. and staay on protocol. I need some advice.
thanks in advance.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Mar 31st, 2006 14:16 |
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Diana
For help re your home care and husband: you can ask your Dr what is available. Let Dr know your circumstances, that you need assistance.
for help with your MP: it depends what you are wanting to do.
If you'd like to continue to take your MP meds with least herxing possible you can adjust your meds as per the FAQ
My Herxheimer reaction is too strong. What should I do?
see also
Tools to check: << is good to have this handy to check what you may be needing. please do not hesitate to make adjustments in any area, and feel free to ask on the Board. thank you.
25 mg mino << can be extended or taken more frequently, whichever works best for you for slowing the herx..
Benicar: see When and why should I vary my Benicar schedule?
When your SIL leaves, you may find that even though it may be extra effort, staying in contact with the Board is supportive as well.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Sat Apr 8th, 2006 00:01 |
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This has been a pretty Hellish week or so. My husband has been home for over a week, his sister who had come to help has gone and we are on our own except for the visiting nurse.
I have been sleeping a lot so am totally unable to help him in the morning til I can get up. He's a big man anyway ( 300+ lb.s and 6"3") so there's not much I can do if he needs physical help. He's having a hard time handling all the meds he's supposed to remember to take and is stubborn to boot. (I bought him a vibrating alarm clock, for instance, to remind him to take meds but he hasn't used it yet}-he can't hear the regular timers and alarm clocks I've tried to set up. But he is healling nicely....in a few weeks he'll be back to normal (which makes me jealous)
I've also been herxing pretty badly so have been in a horrible mood. Today I tried the 25 mino trick and will keep that up if it works....I'll start out every 12 hours....if I need I'll adjust to 6hrs. I think it may be helping a bit.
I'm going to ask my doctor for an antidepressant to try to get me through this....I find I'm crying all the time.))
Sorry for such a depressing post but I guessed I should check in with all.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Apr 8th, 2006 00:08 |
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Thanks Diana
We wish you well with all.. your posting gives others the opportunity to send you some support and encouragement also..
This FAQ may be helpful for discussion with Dr : How can I control my anxiety and depression?
Let us know if we can assist you in any way. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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alayne
Member in Phase 3
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Posted: Sat Apr 8th, 2006 01:51 |
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Hi Diana, am rooting for you! I guess one thing on the bright side (for now) is that your husband is too heavy for you to have to lift. Leaves out at least one thing for you to do, right. 
I'm awfully sorry you're having such a tough time of it. Herxing while going through this is obviously very difficult. I hope you can tame the herxing some and that the anti-anxiety/depression med helps. Lowering your Mino to 25mg might help take care of the depression too, don't forget.
I'll be off next week to help my dad who shattered his lower leg. To be honest, he and my mum are very upset by the long recovery time ahead - minimum 3 months until he can put weight on it again. Like you, I'm more than a tad envious of our loved ones' estimated recovery times.
Best of everything!...AlayneLast edited on Sat Apr 8th, 2006 03:48 by alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
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Posted: Sat Apr 8th, 2006 03:38 |
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Hi Aunt Diana,
You might consider home health to help with your husband. If you want to contact me I can help you get a better insight...as I dont know what kind of health coverage you have nor what his illness is...I just read the one post and dont know if you talked about that anywhere else...Just PM and tell me the above info....does he have private insurance or medicare etc....Hope this might help you in some way...
Hugs,
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Vicki SA
Member in Phase 3
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Posted: Sun Apr 9th, 2006 00:30 |
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All the best Diana,
you are doing a good job dealing with all that is happening! My thoughts are with you and hope for suitable support to help you through all this
cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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DianeC
Member in Phase 3
| Joined: | Sat Aug 20th, 2005 |
| Location: | New York, USA |
| Posts: | 619 |
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Posted: Sun Apr 9th, 2006 05:56 |
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Hello Diana,
That is wonderful news that your husband came through the surgery and is doing well
It is best to just take one day at a time and focus on that day alone and then you may not feel so overwhelmed. It appears that your body is trying to do an adjustment now that you have started back on the 25mg mino.
Things will get better; just try to focus on the positive
My thoughts and best wishes are coming your way
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Aunt Diana
Member Advocate
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Posted: Sat Apr 15th, 2006 05:07 |
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Thank you all for your encouragement and support. I apologize for not getting back to everyone but I'm sure you all understand.
I've been back on the mino now for about two weeks....started back at 25mg and a few days ago thought I was ready to ramp up but was afraid to go to 50mg. So I took about 33 mg. About 32 hours later I woke up with a lot of pain all over...It lasted several days and I was pretty miserable....slept as much as possible but was taking a lot of painkillers....4 advil hardly touched it. I tried the 25mg mino dosing every 12 hrs (managed that twice) and finally when I woke up tonight it feels as if the herx has lifted. I took my last 25mg dose at 3p.m. and think I'll take one now, 3a.m.
I must admit I'm afraid to have a herx like that again. I have been advised to go to 50mg, that my body may be needing more mino, and before I did that wanted to check in for any advice others may have.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Apr 15th, 2006 05:50 |
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Diana
There is information and links that may be helpful in this post: symptoms
Increasing Tip
I'm eager to get well. How can I speed up my progress on the MP?
and see Tools to check:
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Thu May 4th, 2006 22:37 |
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Well, here I am again.....things have finally settled down a bit after Bill's surgery. We have been like two wounded animals, really unable to help the other very much. He has moved over to his other house and It is easier for both of us. He gets the visiting nurses and I get to sleep. It' s not perfect but it is better than it was. We were really having a hard time....me with my neuro herxing and him with his emotions and difficulty dealing with the reality as it was setting in. He has had a very hard time dealinig with his weakness....he has always been almost "superman" and this operation knocked him for a loop.
I had been coasting on 25mg mino every day and kept the herx at a minimal but decided that it is now time to ramp up again.
Took 50mg mino24 hrs ago....I have been sleeping a lot (14 hrs+ perday) am waiting til tomorrow to keep the herx going...it's pretty mild right now and I have some appts. tomorrow. Plan to take another 50 mg tomorrow eve. I'm hoping I'll be able to ramp up and get to 100 before the end of the month (my sixth month)
Does this make sense? any advice? Once again thanking you in advance.
Bill and I both agree this new arrangement is better for both of us right now.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Thu May 4th, 2006 23:02 |
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Thanks Diana
I am pleased you and Bill have come to a mutually acceptable arrangement.. and that you can do your MP..
re meds.. Just increase the meds as you can without pushing yourself to get to 100mg.. you dont need to have reached the 100mg. you can move to the Modified Phase 2 if necessary.
see this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information to discuss with your Dr. and before starting Phase 2, we encourage Members to begin a progress report in the Phase 2 forum to discuss recommendations re their new meds and dosing. Thank you.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Sat May 6th, 2006 22:13 |
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Well I'm glad to report that I've had two doses now at 50mg of mino....with very little herx. Does this mean I should ramp up to 75 or shuld I wait?
I think I'm ready for 75. thanks for any suggestions
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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