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anne p
inactive member
| Joined: | Tue Jul 20th, 2004 |
| Location: | NSW, Australia |
| Posts: | 348 |
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Posted: Wed Sep 28th, 2005 04:24 |
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Dear Robyn John and Matt
So glad there is a little improvement on the Benicar.
I am interested to know if you are certain the blood was frozen from the time of collection right up until it was tested for the 1,25D. Sometimes it is left thawed and in the fridge until there are enough samples to test . You are probably right on top of these things but I thought I would ask just in case. 
All the best with the mino. Matt you are a trooper, good luck!! Will be thinking of you .
kindest regards Anne
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Sx24years CFS/Lyme/ spinalstenosis abx long term Labs 25D,22-1,25D,23.46(unreliable)MP 7/01/05 PH.1.24/01/05,PH2.5/03/05 stopped MP Sept20 resumed phase1 Jan4/06/ somac40mgday Neurontin 600mg 3xday duatrol3xday imigran50mgprn panadeineforte prn
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robyno
Member in Phase 3
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Posted: Wed Sep 28th, 2005 21:01 |
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I will let Matt know what you said about being very tired in Phase 1, Barney, and that it started to improve in Phase 2. We just can't wait to kiss these symptoms good bye forever!
Anne, I am as sure as I can be that the samples were frozen for the vit D tests. Back in June I stressed it with the pathologist and then made follow-up phone calls and they assured me that this had been done. This time I spoke to the pathologist again to make sure that the samples would be frozen immediately - I'm not sure what else I can do. All his samples are taken first thing in the morning, before breakfast, to be consistent. But in the end I only have their word for it - who knows what individual lab technicians might do.
Thanks for all the good wishes - it really helps knowing you guys are out there.
Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Sat Oct 8th, 2005 04:11 |
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Matt started his mino (25 mg) this morning after breakfast, so he is officially a Phase 1 MPer now!
No herxing evident yet, but I guess it is a little early............
When it is time to increase the mino dose (probably after a couple of weeks?), does he take 50 mg altogether rather than 2x 25 mg spread over the day? I would have thought so but it was something that our Dr wanted to check. I guess we would have the same question for the other dose increases - I had presumed that Matt would take the whole dose at once, whatever it is, but our Dr was a bit worried. I suppose it all depends on how severe the herxes are - we have absolutely no feel for that right now, so we will be guided by Dr Marshall and the MP staff as we go. It's hard not to be a little anxious.......
Our Dr is worried about Matt using the keto cream on a regular basis, so we have decided not to use it any more (we have enough to worry about as it is) and wrap Matt up in a balaclava the next time he has to go out during the day. The poor kid will look even more like a bank robber now, but we don't know what else to do. I should post a photo, if I can work out how to do it!
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Dr Trevor Marshall
Research Team
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Posted: Sat Oct 8th, 2005 04:17 |
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Robyn,
It is important that the minocycline dose be taken as a single bolus every 48h to 72h. The concentration rises rapidly, to the MIC when you are on 100mg doses, and then it decays slowly. This is the way that works best, and it will allow Matt to sense the different herx symptoms he will have on day 2, compared to those in the hours following the ingestion of the abx.
I have to agree with Doc about the keto cream, I am afraid I think it should be reserved for emergencies.
..Trevor..
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robyno
Member in Phase 3
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Posted: Sat Oct 8th, 2005 04:24 |
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Thanks Trevor - I will pass that on to our Dr.
Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Meg Mangin R.N.
Research Team
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Posted: Sat Oct 8th, 2005 04:56 |
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Hi Robyn,
Congratulations to Matt for starting the mino. He's on his way!
K-cream should be reserved for folks who must go outside. We have researched sunscreens carefully and determined that they do not provide enough protection from natural light for folks with Th1 inflammation. Although Matt might miss the fresh air, staying indoors during daylight hours is much more vital to his health.
There are very few doctors who are experienced enough with the Marshall Protocol not to need some reminding every once in awhile. You could print out PHASE ONE GUIDELINE for the doctor who seems confused about mino dosing.
We have a new tool that you may wish to print out and give to your MP doctor. One side is a quick reference to the MP and the other is a list of medications to avoid while on the MP. I lamminated them back to back and gave a copy to my MP doctor as a thank you for supporting me. Barb will send you the links as the file is too large to upload to the website.
Best,
Meg
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robyno
Member in Phase 3
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Posted: Sat Oct 8th, 2005 05:50 |
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Thanks for this Trevor. Is there something you have written somewhere to explain why the abx work best when the titres are declining? Its got us and our doctor intrigued.
John this time
PS Matt has been saying his headache is a bit worse over the last two hours (6-8hrs after his first pill) - maybe the herx although could still be in his normal range of variation
J
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19392 |
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Posted: Sat Oct 8th, 2005 06:36 |
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John, Robyn,
Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero, so increasing mino frequency although seeming counter-intuitive actually dampens Herxheimer reactions best...
see FAQ Why do we take minocycline only every other day? Why do I feel worse on the second day?
and the aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
should the herx become intolerable see FAQ My Herxheimer reaction is too strong. What should I do? Frequent minocycline dosing may reduce Herxing and Herxing efficiency to tolerable.
- Temporarily replace mino 25mg QOD schedule with mino 25mg every 12 hours or every 24 hours.
The Essential Information is in ABOUT THE MARSHALL PROTOCOL and all links alphabetised in the ABC of MP
let us know if you have any questions, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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BARNEY
Member in Phase 3
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Posted: Sat Oct 8th, 2005 15:17 |
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MATT, ROBYN & JOHN,
MATT....CONGRATULATIONS ON BECOMING A FULL MPer EVEN THO I BELIEVE YOU WERE ONE THE DAY YOU STARTED BENICAR.
PLEASE REMEMBER TO GET LOTS OF REST AND DRINK PLENTY OF FLUIDS SO THAT THE BENICAR WILL WORK GOOD.
THE HERXHEIMER REACTIONS MIGHT REQUIRE A PAIN PILL OCASSIONALY BUT IF YOU FOLLOW AUSSIE BARB'S LEAD, I AM SURE YOU WILL DO QUITE WELL. I COUNT ON HER WISDOM A LOT.
HERE ARE SOME CARTWHEELS FOR YOUR MOVING ON:
@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
AND SOME SMILES: 
HANG IN THERE MATT, WE WILL MAKE IT!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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robyno
Member in Phase 3
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Posted: Mon Oct 10th, 2005 04:04 |
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Thanks for your good wishes, Barney - Matt loves to hear about your messages, especially the cartwheels. He is very impressed that a grandmother knows her way around the internet (apologies to all the grandmothers out there, but Matt thinks all grandmothers are as old as his!).
Well, Matt definitely herxed after his first dose of mino. After about 6 hr his head sharted to feel worse and his body language was "pre-Benicar". That lasted all the next day, but he woke up this morning feeling a bit better and managed a smile or two over breakfast - just in time for his next mino dose. It is hard to watch, but knowing that he is killing the b------s is keeping us all going. He is on the way to getting better at last.
Those summary sheets are wonderful, Meg (thanks for sending them, Barb!) - I will laminate them for our doctor, as you suggested. I did photocopy the Phase 1 Guideline for him, but he has a lot of patients and only two on the MP so the summary sheets will be a big help. I will try to remember to take it with me when we visit him as well.
So far so good.........
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Tue Oct 11th, 2005 22:34 |
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Matt had his third dose of 25 mg mino this morning and all is well. He reacted to the second dose much the same as the first - definitely out of it 5-6 hrs after taking it, then not feeling any better until he wakes up on the morning of his next dose. I think he feels worse while herxing than he felt even before the Benicar - I usually read to him every night before he turns in, but since taking the mino he is turning in for the night straight after dinner without any reading. That is unusual as he loves me to read to him.
But, Matt assures me that he can tolerate the herxing so we will stick with what we are doing while the going is good and keep killing those horrible critters as fast as we can.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Wed Oct 12th, 2005 20:50 |
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Matt woke up this morning (ie the day after his third 25 mg dose of mino) saying that his headache is not worse than it was yesterday, as is usually the case the day after his mino dose. So it sounds like his herxes are starting to taper off!
So, we seem to be going along nicely here......
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Dr Trevor Marshall
Research Team
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Posted: Wed Oct 12th, 2005 21:50 |
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Sounds good. Say 'hi' to Matt for me
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robyno
Member in Phase 3
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Posted: Mon Oct 17th, 2005 08:26 |
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Matt had his 5th dose of 25 mg mino on Sunday after lunch, and is due again tomorrow. By 6.00 pm Sunday night he was feeling worse, but commented before bed that his headache had plateaued again. Today he was about the same ie his herxing did not get any worse. So the herxing period was quite short (a few hours) and we will see what happens tomorrow.
We are a bit puzzled as to what to expect when we need to decide that he has stopped herxing before we increase his mino dose to 50 mg. His base line has definitely changed from when he improved on Benicar alone. His symptoms may even be worse than before Benicar - his tic is more pronounced and he might be even more tired, and his voice is hoarse all the time. They are the main symptoms that we could see some change in after he started the Benicar. Are we waiting for his symptoms to return to the level they were when he was on Benicar alone, or are we just waiting for him not to feel worse when he takes the mino?
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19392 |
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Posted: Mon Oct 17th, 2005 14:52 |
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Robyn
Thank you for posting.. Sometimes the herx becomes less when it is time to increase the dose, and in some, the symptoms can change to a plateau of unwellness showing it is time to increase.. and after 6 doses at a level of mino this may be so. If you think it may be the case the increased dose of mino 50mg can be taken, and, if the herx heads towards being intolerable at all, a dose of mino 25mg can be taken to slow it down..
There is more information in these 2 posts.. re symptoms & Increasing Tip
let us know if you have any questions at all. all best to you all, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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robyno
Member in Phase 3
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Posted: Fri Oct 21st, 2005 22:04 |
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Matt had his 7th dose of 25 mg mino on Thursday and did not really experience any worsening of symptoms, though his symptoms are definitely much worse than when he was on Benicar alone. But he seems to have plateaued now.
So today, after lunch, we will give him his first dose of 50 mg mino. IF his herxes become intolerable (and they might not), our doctor has said that he would like us to try easing his symptoms with Benicar every 4 hr rather than 6 hr as we are doing now, rather than giving him more mino straight off. If that does not do the trick, then we should give him 25 mg mino at 12 or 24 hr, and start the 48 hr cycle from then. So that is our plan for now, unless we hear otherwise..........
We realise that this is something that we just have to work our way through and see what works for Matt. He is a tough little b....... and the hardest thing will be convincing him that it is OK to say his symptoms are just too much.
Will report back soon,
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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BARNEY
Member in Phase 3
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Posted: Fri Oct 21st, 2005 22:56 |
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Hey Matt,
Your picture is great.... now I can put the face with the young man who is suffering with a Th1 disease...and is getting well on MP.
My Th1 disease is sarc. Glad to see you are progressing. It is a slow process but a good one and we will all be well in a couple years.
HANG IN THERE MATT, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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robyno
Member in Phase 3
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Posted: Sun Oct 23rd, 2005 20:52 |
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Matt started herxing 4-5 hr after his first dose of 50 mg mino on Saturday. He was pretty miserable on Sunday (stayed in his pitch-black room most of the day, listening to Harry Potter on CD - thank heaven for Harry Potter!), but he said that the herxing might not have been as bad as it was when he had his first 25 mg dose a couple of weeks ago, so I guess that that means it is certainly no worse.
Matt's headache started to ease a bit at about 7.00 pm last night, and was not quite as bad this morning. So he is ready for his next 50 mg mino after lunch today.
So, Matt continues to do nicely. I am inclined to give him 4 hr Benicar tomorrow if his headache is worse than it was yesterday - I just need to convince him that it would be OK, and that he would still be killing those bugs as fast as he can.
Regards, Robyn
____________________
Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19392 |
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Posted: Sun Oct 23rd, 2005 21:13 |
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Good to hear from you Robyn and John and Matt, thanks.
and all is going well.. The aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D.. Adjusting the Meds dosing to relieve symptoms is necessary to also keep the bacteria killing to a level that is managable in the body..
see FAQ How does Benicar work? Why is it superior to other ARBs? Should I take it every six or eight hours? says in part:
Benicar has two effects - both enabling the immune system to kill the Th1 pathogens, and also reducing the generated cytokines to give symptomatic relief.<
Dont hesitate to use the meds as per the guidelines to keep all tolerable.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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robyno
Member in Phase 3
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Posted: Sun Oct 23rd, 2005 22:12 |
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Thanks Barb - I will read your post out to Matt and try to reassure him that it is OK to have a dose of Benicar after 4 hr when the going gets tough.
Cheers, Robyn
____________________
Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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