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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Thu Nov 23rd, 2006 20:23 |
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Hi Hope,
I thought I might tell you that I had lowish BP before going on the MP. Generally 85/60 or thereabouts. It used to be even lower and the nurse would take it 2-3 times because she couldn't make out what it was and thought I shouldn't even be sitting there conscious.  While on the MP, it's ranged from 100/75 to 70/40. I never feel different either way, which initially surprised me. I know that Meg's has been very low almost the entire time and she runs around traveling and working with no problem.
My guy Jacks has low BP as well and he also feels little difference when it's really low. His peripheral vision has been affected as well at times - very dark and cloudy, but it comes and goes with the immune response. Same for me. Btw, he has Rickettsia as well.
I also didn't know I had cardiac involvement until a short while before starting the MP. I've had arrythmia and/or skipped beats for years on and off, but it was deemed benign. However, I've certainly had some strong cardiac immune responses whilst on the MP, which indicates that problems were brewing for me, and had I not taken care of it this way, well...
It can be scary at first, especially if you're not used to it, but these immune responses come and go now, depending of the level of herx and don't worry me at all anymore. I know that learning how not to dwell on particular immune responses isn't easy, especially when they're new and uncomfortable. Folks above me who've written have said some really good things about this.
You've had a tough time on your beginning of the MP and I really hope you find a doctor who is knowledgeable to truly help you - who knows what s/he's doing. If that's not the case, at least a doc who'll work with you. As you can see, the board is the best place to come to for help, as their knowledge is so extensive and caring.
I wish you all the best in your search for a new doc and your continued quest for actual health!
Warmest regards,
Alayne
P.S. I've been getting sick for over 25 years. I was bedridden and often thought I would die before I found the MP. I'm now out and about much of the time, am able to care for my partner, and have had more improvements than I can shake a stick at. And it's only been a year!
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+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, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1809 |
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Posted: Thu Nov 23rd, 2006 22:53 |
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Hope,
Perhaps it would be helpful to read some of the progress reports of other people who have had cardiac issues, like some of the people who have posted in this thread -- especially seeing how they coped at the beginning. It might help reassure you to see how they manage. You click on their screen name and then on profile and then on the topics tab. Members Testimony
JoyceLast edited on Thu Nov 23rd, 2006 23:19 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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hellohope
inactive member
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Posted: Fri Nov 24th, 2006 00:46 |
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| Hi M.P.ers Thankyou for your posts and encouragement.My wife is taking benicar Q8H.No mino at the moment.Valium 2mg to help with sleep,noirs,light avoidance,no D foods.My wifes 25D levels are now 30mnol/L.We have lost the support of our local doctor so we are currently looking for another doctor ,which we have found but we will have to travel a 2 hour return journey.Iwill get my wife there even if i have to carry her in the doctors.I have never backed down to anything in my life ,and im not starting now!My wifes sleep disturbance is a problem ,I read valium should not be used too much as it is addictive and when you do stop it you can be sleepless for weeks.Is it best to use antidepressants as they increase the seretonin in the brain.what do other M.P.ers find best.Thankyou for all your help.God bless Mark....
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3931 |
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Posted: Fri Nov 24th, 2006 01:45 |
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Mark,
I had a lot of wild dreams prior to MP, and plenty while having immunopathology responses early in the MP but they were easy to track as an expected immunopathology response. It is my experience that sleep disturbance episodes diminish over time if you stay the course of the MP.
Sleep is now refreshing, I wake up rested. I only do the MP medications Benicar and ABx as per official MP guidelines, so that should be a relief for you to hear, too.
I noticed you were aware of the amygdala issues with light, NoIRs. Review topics may be helpful: Amygdala and amygdala more info.
With 25-D at 30mnol/L (12ng/ml), then your wife is in line with expected therapeutic ranges for her immune system to be enabled with MP medications.
I have often read Meg Mangin R.N. discussions of just the dose of Valium you have listed. You may appreciate this link: When and why should I use Valium?
Best wishes, glad you are here!--Janet
How can I control my anxiety and depression?
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Fri Nov 24th, 2006 04:27 |
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Mark and Hope.
The moderators are the best for advice.
Regarding antidepressants- With my own experience and that of other family{cfs}MP members.I know it would have been almost intolerable to handle the hormone fluctuations,herxs,sun flares with out being on an antidepressant first.My daughter {D2 very disable with cfs}, towards the end of PH1 developed sever depression/anxiety.She become quite stable with antidepressant and mod PH2.{She had been on mino for years before MP}..If you can get hold of the 2006 Lax DVD there is a great discussion about dealing with doctors.
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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hellohope
inactive member
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Posted: Sat Nov 25th, 2006 03:54 |
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| Hi M.P.ers Hellohope on benicar Q8H.No mino .Occasionally valium 2mg to aid sleep.No luck on finding a doctor yet.As far as we can determine there are only 3 doctors in adelaide who are doing the M.P.One semi retired , one we cant see because he is not taking new patients and the other we will contact on monday.If that doesnt work we will have to move to another state and find a doctor that will help.Or we can move to the U.S. like Dr. Marshall and get some real help.If any members can help with a doctor in adelaide or tasmania please send me a private email .Thankyou to all the moderators who are doing a fantastic job, keep up the good professional work . Thankyou Mark..
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Mon Nov 27th, 2006 09:33 |
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| Hi M.P.ers Hellohope taking benicar Q8H.No mino yet.Valium 2mg when needed.Rang new doctor today have appointment for 20th dec. supports M.P. If i restart mino at 25mg and go to benicar 20mg Q3H and my herx is strong would be a good idea to take the mino every 24 hours to minimise herx reaction.Thanks Mark...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Mon Nov 27th, 2006 16:03 |
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Mark
You must be under a Drs care for us to be able to assist you..
We cannot recommend that you continue the MP/ take mino until you let us know that you have the support of your Dr..
Thank you, all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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doveindian
Guests visiting Phase 1/2/3
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Posted: Mon Nov 27th, 2006 21:29 |
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Hi,
I am new to the site and I read your post.I also am in bed all the time.I have fms,cfs.It seems the Dr. add more and more every year.I have been ill since 1985.I went to the Dr today and he gave me the pills to start MP.I was so excited.I had hope.But I just found out the coust and there is no way I can get them.Just think If you could have 1 or 2 days out of bed!!!! You keep going I belive you will get there.
dove
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cfs,fms,RA,neurpathy,Dr. thinks MS neurontin800q3day percocet5/325q4aday, ph1 avoding d,sunlight/light started Nov1 Ben40mgq8h,Dec4 min25mq,Dec16 min50mg Jan9 ban40q8h/mino75q48h Feb6 ben40mgq8h/mino100mgq48h Mar.8,07 phase 2
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hellohope
inactive member
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Posted: Tue Nov 28th, 2006 02:18 |
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| Hi Barb Hellohope has still got support from her speciallist ,we are constantly in contact with him by phone and email.We are finding another doctor a bit closer to home as the specialist is a 4 hours return trip and in my wifes condition that is out of the question.The other doctor will do the blood tests and prescribe the meds.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Tue Nov 28th, 2006 02:53 |
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Mark
If you have the support of your Dr re doing MP it is fine to take mino 25mg x 1 dose - wait - and let us know the response.
We need to know
1. what the response is and
2. when in number of hours the response occurred after the dose was taken.
First step to minimise symptoms: The Benicar dosage 20mg Q3H : If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during the cycle, or adjust dosage to 20mg Q2H.... see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
Use Dr Rx Valium or anxiety meds..
Frequent mino dosing isnt suitable for everyone. for some, it can increase the symptoms.
The aim is to be able to use the every other day mino schedule. The dose can be taken more or less frequently than that ONLY if it is assessed as being necessary and helpful to achieving tolerable symptoms..
It is important when symptomatic to be sure to avoid light and Vitamin D etc as per the guidelines.
Let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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hellohope
inactive member
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Posted: Tue Nov 28th, 2006 10:13 |
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| Hi Hellohope taking benicar 40mg Q8H.No mino at the moment.Valium 2mg when necessary.Her doctor has prescibed her a antideppresant which contains (escitalopram oxalate) she has not taken any yet,would this drug compromise the M.P. as i didnt see it on the, meds not to take.Hellohope is going to try mino again .Would you recommend that we go to Q6H for tommorow to ensure a good blockade then start the 25mg mino the day after.When she has taken the mino we will go to benicar 20mg Q3H to try and minimise any heart herx.I need to keep the arrythmias to very tolerable otherwise she will get scared and lose the opportunity to regain her health.We will use valium as well.Thanks Mark..
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Tue Nov 28th, 2006 13:38 |
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Mark
It is a good idea to change only 1 aspect of the medications at a time so that you have an idea of cause and effect.
re the antidepressant prescribed: is not contraindicated: The Information re the medication is that "You may have to take (Lexapro) for up to 4 weeks or longer before you begin to feel better. Do not discontinue use of the medication without first contacting your doctor."
also: Changing the Benicar dosing thru those schedules you have suggested may also be a good idea before taking the mino dose so that you are aware of your response to the Benicar alone to feel the difference. ie 40mg Q6H and 20mg Q3H.
If/when having any cardiac symptoms our recommendation is to use the Benicar at 40mg Q4H or 20mg Q2H. When should I be concerned about cardiac symptoms?
It is important for you to have this Information printed or accessible before you need it.
Thanks, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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hellohope
inactive member
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Posted: Wed Nov 29th, 2006 00:38 |
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| Hi M.P.ers Thanks for all your help.Does anyone know if there are natural products to aid sleep without compromising the M.P. Hellohope is having real problems with sleep/antideppressant drugs.She took 2mg of valium last night ,all it did was cause palpitations/irregular heartbeats ,she didnt even sleep.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Wed Nov 29th, 2006 02:38 |
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| Hi Just a quick question .Is low fat unfortified milk ok to drink on the M.P.I looked at food tips and wasnt sure.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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P.Bear R.N.
Inactive Staff
| Joined: | Fri Dec 3rd, 2004 |
| Location: | USA |
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Posted: Wed Nov 29th, 2006 05:28 |
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http://www.marshallprotocol.com/forum32/4959.html
Suggestions about sleep medications from MP.com members
Insomnia can be a tough nut to crack. Please read above links for things to try. A "natural" product might be valerian, or timed released melotonin; but people find that different meds work differently for them. P.B.
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Wed Nov 29th, 2006 07:31 |
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Low fat unfortified milk wouldnt contain much Vitamin D but Dr Marshall says:
You don't want to be drinking glasses of milk, but using it in cooking and to add taste to breakfast oatmeal is a good idea.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Wed Nov 29th, 2006 22:22 |
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Panadol has always help me with going to sleeping.
GraceLast edited on Thu Nov 30th, 2006 01:29 by
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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hellohope
inactive member
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Posted: Thu Nov 30th, 2006 00:59 |
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| Hi Grace could you please tell what pandole is .Is it a drug or natural substance.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Thu Nov 30th, 2006 01:34 |
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| Hi Can Hellohope restart benicar anytime and how long should we wait to restart mino.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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