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Lugubrious D
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Posted: Wed Jun 18th, 2008 23:14 |
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Whoah.
So I've upped my mino to 50mg Q48 and boy oh boy.
It's like taking a sleeping pill.
I'm like completely wiped out. I can't stay awake longer than 2-4 hours at a time.
It's very hard staying awake. Body achy too. Is this normal?
-LsD
(suecat, double entendrees seem the only pleasures allowed by g-d lately.)Last edited on Wed Jun 18th, 2008 23:16 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Knochen
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Posted: Wed Jun 18th, 2008 23:30 |
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It's very hard staying awake. Body achy too. Is this normal?
Welcome to Immunopathology Land!  Perfectly normal.
This is why we say to take it slow and not be too ambitious about activities. Your body is working very hard, so give it the rest it wants and needs. I refer you to Adam Koford's cartoon to keep your spirits up:
Don't worry, it's not always this bad!
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Lugubrious D
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Posted: Wed Jun 18th, 2008 23:37 |
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Phew. 
- I is all sorts of tuckered out.
Thanx.
I'll stay right here with the mino untill this Rip Van Winkle impersonation decides to fly south.
-LsDLast edited on Thu Jun 19th, 2008 01:57 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Knochen
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Posted: Wed Jun 18th, 2008 23:49 |
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Did you get accepted to the study yet? If so, be sure to start a thread over on the Benicar Only section.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Lugubrious D
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Posted: Thu Jun 19th, 2008 00:30 |
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I sure would like to be.
Any pull you can exercize to get me in so I can post would be GrrrR E A T L Y Appreciated.
-LsDLast edited on Thu Jun 19th, 2008 01:58 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Lugubrious D
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Posted: Sat Jun 21st, 2008 22:51 |
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Hey Guys,
Medco has refused to fill my Benicar.
They said "you are trying an experimental therapy that is not peer reviewed and has no proof it's effective."
When I asked them to send me their reason for refusal in writing,
they refused to do so.
They stated they never filled my Rx so they don't have to.
(even though they sent me in writing that they wouldn't fill the Rx because they couldn't contact my doctor.)
How is this legal to refuse to fill an Rx and then refuse to provide their reason in writing?
( I recorded the phone call, like it matters. )
Medco delayed my therapy by more than a month.
They've caused so much excessive stress it can't possibly help me heal.
I'm currently disabled. I can't really afford the out of pocket expense for all the damn meds,
I have to pay insurance premiums for doctors that aren't covered
and now I'm paying for a prescription plan that refuses to cover my prescriptions.
WTF?
Dr Marshall suggested posting what's occurred for opinions,
- ...any opinions?*
*- other that to re-read the 13 pages of misery posted since 2004 at http://www.marshallprotocol.com/forum11/399-1.html
-LsD Last edited on Sun Jun 22nd, 2008 02:17 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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cwylie1
Member
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Posted: Sun Jun 22nd, 2008 12:52 |
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Hello LD
I, too have Medco and was a little fearful they wouldn't pay for my Benicar. There were several posts on the main MP site (I think) about Medco specifically and of one member's experience. He finally got Medco to pay for three pills per day, enough to get started on the 8 hr. dosing cycle. It took diligence to get that accomplished and I really appreciate him paving the way for me. I was looking for that page to link it here for you, but with the bizillion MP and associated pages to peruse, I can't find it. 
When my husband got to the pharmacy to pick up his first prescription and the pharmacy said that Medco would only cover 1 pill a day, I told him to relay to them that there was "already a precedent established by Medco for 3 pills a day" and that they c"ould not be preferential or discriminatory in their coverage." 
The pharmacist said they'd 'have to call' Medco. I said 'Call away'! Medco came back with payment approval for the 3 a day. When I told my dr. that we wanted to do the 6 hr. dosing as that is the safest to ensure VDR blockade and that we would just pay for the 4th daily pills ourselves, she immediately said she had 'tons' of samples and handed me 8-7 pill bottle samples which was enough for the two of us to have the 4th pill. No extras in case of severe herxing but she promised more if needed.
If your pharmacy didn't call Medco to ask about the 3 per day but was only relying on their past information, if might be worth it to return to the pharmaciy to ask them to do so. Honestly, before I was done ranting about it to my husband on the phone, telling him what needed to be done and what to tell the pharmacy,  the pharmacist was able to call and got approval for the 3/da.
Hope this helps. Good luck!
Carol
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08, 25-D 43 on 7/28/08. 1,25D-66, 5/02/08; Covered up, r/t to work, NoIRs. low lites.
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cwylie1
Member
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Posted: Sun Jun 22nd, 2008 13:06 |
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Hi again LD,
FYI, the person I was mentioning about jumping through all the hoops to get his Benicar paid for, said NEVER, NEVER, NEVER mention the MP at all!!! If the company selling the NoIR glasses knew immediately that I was on the MP when I called to place the order for multiple pairs of glasses, surely Medco knows when large dosings of Benicar is ordered. However, if you don't tell them, they can't make the allegations of experimental treatment which gets them off the hook for paying.
The less said the better. That's why I was so adamant on the phone with my husband telling him what to say and also what not to say to the pharmacist which might have been passed on to Medco !!! He hadn't read through a lot of posts as I had by that time. Good luck! It sounds to me like that can of worms has already been opened in your case. Perhaps a call and letter from your dr. would help.
Words of wisdom to other new MPers, READ lots of posts!! They will give you much information which will help you lots and keep you from asking questions which have been answered previously.
So sorry to hear you're having these problems.
Take care,
Carol
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08, 25-D 43 on 7/28/08. 1,25D-66, 5/02/08; Covered up, r/t to work, NoIRs. low lites.
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Lugubrious D
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Posted: Sun Jun 22nd, 2008 15:10 |
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Hi Carol,
Medco deduced it on their own based on my diagnosis of Chronic Fatigue and the perscription without my or my MD ever mentioning the MP. They mentioned the Marshall Protocol by name. They said the corperate level has a targeted policy against it despite anything the FDA says to the contrary.
Thanx for all the PMs. I really have no strength to fight the Herxing and Medco.
Medco/Merck is totally lame. They will dispense hundreds of pills with addcitive and potentially damaging profiles, but Benicar they balk on. There is even an FDA study that states antidepressants are no better than a placebo,
http://www.docstoc.com/docs/412953/Initial-Severity-and-Antidepressant-Benefits-A-Meta-Analysis-of-Data-Submitted-to-the-Food-and-Drug-Administration
but Benicar's efficacy related to Chronic Fatigue, they feel they are rightful to deny.
Thanx for all the support guys,
I have to lie down for a while.
-LsD
Last edited on Sun Jun 22nd, 2008 18:01 by Lugubrious D
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Julia
Advocate (on leave)
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Posted: Sun Jun 22nd, 2008 23:35 |
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LugD,
I take it you've seen these...
How To Obtain Insurance Benefit for Full Dose of Benicar
Insurance discussion
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Lugubrious D
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Posted: Mon Jun 23rd, 2008 05:41 |
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Hi Julia,
I'm so wiped out from the Mino, I have to take a break from Medco for a while.
( I already read that stuff 2 ) I had to sleep from 10am to 9pm. - Ouch.
I transcribed a piece of my conversation with Medco and emailed it to Dr. Marshall.
To the best of my understanding, it seems that because Dr Marshall's published study focused on Sarcoidosis,
patients diagnosed with CFS legally don't fall under the scope of Dr Marshall's study results.
Thus the MP's curative abilites are not published to apply to CFS, and therefore can avoid being covered by Medco.
It'd be nice if sometime in the future, the data gathered here could be published applying to CFS as well.
Amy Proal's happy results posted on Bacteriality.com were the deciding factor for me to place my faith in the MP
and give it a shot.
I need to focus my remaining energy on getting well.
Medco has been sappping what little waking energy I have.
I can no longer afford that.
I have to take it easy for a good long while.
-LsD
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Lugubrious D
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Posted: Mon Jun 23rd, 2008 09:20 |
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I just read half of Colleen's posts.
I do hope you guys can help her.
I haven't asked questions about skin legions, since it's gross and embarassing.
I've got a few, and they don't heal. ( Yuck )
Do you guys have any links on skin lesions, lumps and the MP?.
-LsD
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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JRFoutin
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Posted: Mon Jun 23rd, 2008 20:32 |
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Lug,
I've had all sorts of skin lesions during the MP. The most constant has been sand on my forehead and acne like eruptions (some ooze... yuck) on my chin and a couple of other places, but I've even had a quarter sized patch of skin just fall off of my abdomen, and a weird couple of little red quarter-sized red patches on my left wrist and top of hand. All healed up eventually and it seems the skin on my forehead is finally getting clear, feels smooth like baby skin now (this is fairly recent... for me).
Just think of it as slow motion remodeling of the body unit. Ripping at top speed through the process could be a bit messy, right? Slower ramping during phase 1 allows one to notice changes and what a body does in response to abx. Move too fast and all one can see is pain and suffering.
Hopefully, you can chart your details so you can see and report details to your medical team about the big picture as you move through the MP at a rational pace:
Downloadable MP Documents, Phase 1
Best to you Lug--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Lugubrious D
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Posted: Mon Jun 23rd, 2008 21:16 |
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Thank you Janet,
The whole right side of my face just exploded red today
and it circles up from my chin ringing my scalp and is definitely itchy.
I have exema/psoriasis but it's usually limited to small patches.
It seems more than mere shaving irritation.
could be foliculitis which I'm constantly dealing with.
I'm guessing it's the mino doing it's job.
Nothing in my diet has changed.
I will monitor and keep advised, but what can be done?
I have tons of dermatology creams. They don't really do much,
and we're supposed to stay as drug free as possible.
Ps: I know my posts read fairly lucid,
but it takes me a long time to type these out,
...and they still come clunky.
...and the legal stuff,
I have a friend or two pinch hitting the opinions for me.
I'll print out the Jarisch-Herxheimer (JHR, "Herx") tracking chart
and start tracking again. ( I did/was but misplaced it while dealing with Medco )
Right now, I'm just body achy. When I take the mino, I sleep.
The rash, is new on the radar, isn't too wierd, just larger than normal
and in lame locations.
-Lug
Last edited on Mon Jun 23rd, 2008 21:38 by Lugubrious D
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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JRFoutin
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Posted: Mon Jun 23rd, 2008 21:52 |
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Lug,
Please remember to report your symptoms to medications on the study site if you have been accepted into the study. Nurse moderators make astute assessments that you can use to help determine your pace and progress in discussions with your doctor.
I'm also reminding you with a general nudge to watch your symptoms and apply a 1-10 scale to them. From my personal experience, I tended to have rather high numbers for a number of symptoms initially but worked to get both the number of symptoms and the attached scale down to a rational load so I wasn't exhausted.
Cytokenes and dead and dying cells/pathogens take time to clean up. If your immune system is already compromised with years of disease, consider that carefully as you and your doctor pound out a rational pace during phase 1. Overload can happen with a fast ramp tempo and has negative consequences that nobody wants to deal with. The other thing is you do want to figure out the action/reaction didactic in phase 1.
Banging quick through phase 1 so you can get to phase 2 in hopes you will be well quicker just isn't so. Phase 1 is the training ground. Take the time to learn your unique action/reaction didactic, and what controls are available to you. It's always good to know where your gas, gears and break pedal are before you hit the freeway. Nevermind you'll have to learn to use the windshield wipers while you are changing lanes because there will be a cytokene storm  .
Best to you Lug--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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JRFoutin
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Posted: Mon Jun 23rd, 2008 23:00 |
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Lug,
Remember, I follow the rules to post in the open so all can benefit, and so any errors I might make can be discovered by other moderators. The goal is to help people . Per your PM:
Yes, immunopathology is known to sneak up on many, just about the time someone thinks they are jaunting along without problems.... sort of like the regular relationship of trouble to the rest of life in general . No big surprises with the standard process of life and learning, eh?
Some might see an "X marks the spot" of first impact when D falls to therapeutic ranges or the immune system kicks in, just when it crosses over steep increases in abx or some other avoidable hazard like doing too much when some start to finally feel well enough to do anything.
Rushing through Phase 1 denies one of a learning opportunity that can serve well through the entire MP.
Phase 1 is an excellent time to use charting in your own discovery process and in discussions with a medical team to establish with certainty one's own patterns. These patterns can help reveal if adjusting one way or another reduces response or if one needs to adjust differently.
Phase 1 is often the time people find out just how powerful immunopathology can hit if not attended to correctly.
Learning how to use Benicar for a short term intervention is also a skill set one will want to discover in Phase 1. Consider the frequency options for Benicar as a clue to how often that intervention can assist. Pay attention to time frames for notable results when one uses all interventions available and pretty soon one can learn to manage well to avoid fire pits, and communicate their own rational boundaries when discussing issues with their medical team.
Like the Dread Pirate Roberts tells the Princess in the fire swamp, "now we know that one we can avoid it in the future" ... OK. So it's not a direct quote, just something like that .
Do read up on the study site. Use the alphabetical FAQ to find many answers quickly so you are not waiting for moderators to reply.
Best to you Lug--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Lugubrious D
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Posted: Mon Jun 23rd, 2008 23:28 |
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I broke the rules sending you a PM? I thought I was posting too much.
Here's the entire PM -
nudge away Janet, I really appreciate it.
I did everything by the book, but nudged my 25 mino to 50 a few days early because I wasn't experiencing anything. Believe me. I'm leaving the mino at 50 definitely past the 27th, until I'm no longer oversleeping when I take it. I was on the Benicar for two weeks before starting the mino. I'm being good. There's a small amount of satisfaction knowing I'm flushing those buggers out of my system. It's one of the few things I'm enjoying right now.
Thanx for worrying about me.
-Lug
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Lugubrious D
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Posted: Mon Jun 30th, 2008 23:45 |
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Hi guys, The skin inflamation is still present. I'm assuming this is the Mino fighting the bacteria as per the ABC's listings description of skin erruptions.
No one said this was going to be easy. Fatigue waxing/waying with the mino dosing as expected.
Looking forward to getting over this hump,
Hope the psoriasis recedes back soon.
-Lug
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Lugubrious D
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Posted: Wed Jul 2nd, 2008 06:07 |
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Hey Guys, I'm reading up on the Posts over on http://www.marshallprotocol.com phase 1 alumni - This describes exactly what's happening with me - everything: (except the getting better in the evenings)
Lymeabean took her second dose of Minocycline today. The second day started out rough. She had a horrible headache- but only when standing. She was very fatiqued and extremely irritable. She was very dizzy and we made her lay down for most of the day. She has still had joint pain and swelling. By evening, she seemed more like her old self. She still had her symptoms, but they were tolerable enough to interact with the family and even felt well enough to take her puppy outside for a little walk after dark. I gave her her second dose this morning and she still seems to be grumpy and has been spending lots of time in her room being quiet/sleeping where it's dark.
Any news when new people will be allowed in to the study group?
-Lug
Last edited on Wed Jul 2nd, 2008 06:12 by Lugubrious D
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Julia
Advocate (on leave)
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Posted: Wed Jul 2nd, 2008 23:47 |
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Lug,
Please read Is there a right pace for the most effective healing on the Marshall Protocol? Don't be in a hurry to increase! Slow and steady wins the race.
New members can only be accepted if vacancies arise. The medical team are desperately overworked as it is.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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