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GinORL
Member
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Posted: Wed Aug 27th, 2008 22:04 |
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42 yo male under care of Fibro and Fatigue Center, Atlanta GA. for almost 4 yrs. Ive had chronic fatige, aches pains, 'clogged' ears with tinittis-sometimes pulsive, brain fog, (more) for about 17 yrs or so. (started slow) been actively trying to solve for at least 10 yrs. Osteoarthritis of back, (and other joints) some osteophyte formation, with mayalgia of left trapezius muscle. Tried minimally invasive cervical spine surgery but missed primary issue.  Previously treated CFS with many months of antibacterial and antiviral agents. no change. Before that took Guaifenisin-seems to help symptoms slightly but no overall change. Mononucleosis infection in highschool. Took Accutane for a few months then - cant remember if before or after mono. Acute stomach event about age 25-burning, thought had ulcer, went away after a few weeks did not seek care. Acute ST yeast infection about age 24, seemed to somehow cause lasting minor systemic probs for years. For a few yrs could not eat sugar AT ALL, even fruit would bother. Could not drink beer or wine would make sick, recent test shows allergy to brewers yeast- but is better than before am trying to slowly try a beer or small glass of wine- is now very minor affect. Took fluconzaole 100mg for a few yrs. Now diet almost normal (well until going on MP diet lol)
Last and only D tests (cant verify handling). I had been on fish oil and D supplements (though I may have stopped D supps for a few week b4 tests).
FEB 26, 2007 Quest Diagnostics
1,25 32 pg/ml
25-OH 38 ng/ml
25-OH, D3 33 ng/ml
25-OH, D2 5 ng/ml
3-2005 tested high CMG IGG antibody=3.00(high EIA value); IGM 0.77 in range
EBV VCA IGG AB = 4.39 (high EIA); EBV nuclear antigen >5.00 (high EIA)
EBV early antigen AB (r+d) = 1:80 (high titer). 2004 homocysteine tested high.
6-2005 Lyme western blot IgM--um they kinda think I may have a prob with this...weak positive or stong equivical. IGG=negative
2005 RNASE-L activity tested 40 on 1-10 normal range percent;
>>>2005 NK cell activity = 11.8 refererence range 20-50, IS THIS TH-1 REALATED????? my Dr said something like that...
feb2007: NK cell functional assay, FC LU 30 >500 -indicated increased activity
2007 uric acid 8.6 high, ref range 2.7-8.2. mg/dl
my WBC are usaully 3.0 - 4.5
My current Dr Bullington did not endorse or stongly discourage MP. But she is prescribing MP meds at my request.
I had tried stopping D supplements but of course that did nothing. So as last resort I tried starting Benicar Aug 6, 2008. at first I noticed nothing but drop in BP.Then after 2 weeks I started to feel worse but not beyond my normal ups and downs. I almost quit Benicar but then I read more and thought maybe it was minor IP. so on 8-25 (2 days ago) I started Minocycline 25mg every other day. Just as I read in MP info online, 24 hrs later I felt noteably worse and it was 'abnormal' kind of worse, almost acute and lessening after a few hours. I hope this was IP. I guess that would mean I'm doing the right thing. Please comment.
Up until 8-21-08 I took fish oil, consumed eggs yolks, took 1000 IU D3 daily. stopped all 8-21. I'm trying to avoid sun too. No special sunglassed ordered.
I thought I read a section somewhere about MP avoiding things like fiberous grain cereals, Inulin, beans, etc, but cant find it.
I would also like to ask about some drugs and supplements that I didnt see covered: currently only taking 25mg Milnacipran 2x/day.
Glucosamine (HCL), low-dose Selegiline (aka L-deprenyl) 2.5 mg/day, Inositol, Low-dose Naltrexone, Samento (TAO-free Cat's Claw extract), Tribulus (stimulates testosterone production), Phosphatidyl Choline (I found a more absorbable form), cry******e pure ascorbic acid, Resveratrol, saw palmetto, Butyrate (Butyric acid in Cal/Mag complex), Chamomile (tea) for falling asleep. Guaifenesin 1200 mg (this has a very complex and subtle actions Ive read).
Many Thanks!!
Last edited on Thu Aug 28th, 2008 01:02 by GinORL
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Thu Aug 28th, 2008 04:34 |
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GinORL,
Great post and welcome! I will suggest you post lab details in the special section just for that, here:
Help with Understanding D-metabolite tests
Moderators will help you understand the values returned from lab tests in this forum
Then return to this thread to ask questions as you study and learn more about the Marshall Pathogenesis and Marshall Protocol.
I also recommend you frequently read Amy Proal's http://www.Bacteriality.com site. A good place to start is her recent presentation in vimeo (movie) format. Here is Amy's description and the link:
"In the following video, I explain the science that forms the backbone of the Marshall Protocol in simple terms. I discuss the bacteria implicated in causing chronic inflammatory disease, and explain how these pathogens affect the immune system. I also describe the basics of the treatment itself, providing information that any patient who plans to start the Marshall Protocol, or any doctor planning to put a patient on the MP, should understand. My narration is accompanied by slides with pictures and images of the pathogens and molecules I discuss. The video is 89 minutes."
http://bacteriality.com/2008/05/07/mpintro/
Best to you GinORL--Janet
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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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GinORL
Member
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Posted: Thu Aug 28th, 2008 14:32 |
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thank u for reply  This is day after second Mino dose, and it seems IP coming early maybe (I took it at 5 pm yesterday and this is only 9am it woke me up 2 hrs early)... I went to Bacteriality etc -very interesting will spend more time there of course. I am still wondering about the drugs and supplements I mentioned, is it ok to take them? Glucosamine is made from sea creatures but I dont think any D remains? Phosphatidyl Choline would be ok I think?, but the others I am confused about.
also things like cetyl myristoleate and celadrin (which is supposed to work like fish oil?)
Thanks!!
Last edited on Thu Aug 28th, 2008 14:33 by GinORL
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
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Posted: Thu Aug 28th, 2008 19:25 |
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GinORL,
There isn't a supplement in your stack that I would put in my medicine chest, let alone take.
If something is even supposed to work like fish oil, chuck it. Why risk messing up your opportunity to get well, to live?
Please read carefully:
Medications to Avoid While on the Marshall Protocol
Why do I have to stop my alternative treatment and avoid most supplements?
Best to you GinORL--Janet
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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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GinORL
Member
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Posted: Thu Aug 28th, 2008 23:12 |
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JRF, thanks for your reply. But your comments seem just a bit terse. Saying you would have none in your cabinet is a little snobish-sounding. I understand the need to restrict supplements. I had seen the glucosamine warning and in my fog forgotten it. So that one is answered. But for example I would like to say that many people find chamomile relaxing and seemingly problem free, (unlike any sleep pills Ive tried). It helps me get to sleep and I take it every nite as tea. There's no question it works for me and helps me. But of course I want to know if it might interfere with MP. I know TM cant cover them all, but I think this one is so common that at least my question should be treated as a valid one. I dont expect it to be addressed, but one cant hope to get answers unless one asks. The answer might be available somewhere and I just missed it, or maybe its just a fairly easy one to answer. I googled it and it says it can be an immune enhancer. I just use it to relax. But I guess since it mentions immune function I answered my own question?
So (with no answer on chamomile) might you suggest an alternate to help relaxing and falling asleep?
I highly suspect Samento as a probelm so I'll just group it as unknown suspect.
I guess I can wait a while to get more Phosphatidyl Choline. I found it when studying (cellular) fat metabolism. I doubt it would interfere but wont risk it until I know more.
The concept of extracts not being benificial even if drawn from benificial foods gives me somthing to think about. But I cant drink wine so I'd like to keep taking resveratrol, but again I dont want to interfere with MP.
You know its funny, but my condition has me so sensitive to stress that thinking of voicing the slightest difference of opinion makes me sweat (literally). I know you are a generous person to give so much time as you do and I thank you for that.
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Julia
Advocate (on leave)
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Posted: Fri Aug 29th, 2008 00:07 |
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Hi GinORL,
Please put 'resveratrol' into the search box on the main site to find what Dr M has to say about it.
Anything touted to affect the immune system, such as Samento, should be avoided. However, as far as I know, a small intake of camomile tea is okay. You may well find you no longer need a sleep aid when you start Benicar
Please do understand the message of the link Janet gave you Why do I have to stop my alternative treatment and avoid most supplements? Dr M can't study every supplement, and the safety and efficacy of the MP can't be guaranteed if people are taking a cocktail of other things.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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GinORL
Member
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Posted: Fri Aug 29th, 2008 01:33 |
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Thanks Julia, I'll try the search box. And thanks about the chamomile..'Sleepytime' tea helps alot. Ive been on Benicar for about 3 wks and Minocycline 25mg for 4 days. A little sicker than normal-to be expected-so sleeping is a little harder. I seem to have mild immunopathy(noticable worsening) on day after taking Mino. I dont think I'll have any serious problem as I increase it. Im thinking of increasing the Mino by 25mg every two wks. (Or longer if IP doesnt calm down). I think the phase1 guide says increase dose every week... Is 2 wks okay? I want to make sure to spend enough time at each dose level. Also I guess I'll need phase2 instructions. Can I get those pretty soon?
Thanks!!
P.S. I searched and read the references to resveratrol. While interesting there was nothing about if it would interfere with MP or not. I also tried google "resveratrol marshall trevor". If you come across an answer, please post it to me.
Last edited on Fri Aug 29th, 2008 02:00 by GinORL
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JRFoutin
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| Location: | Oregon USA |
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Posted: Fri Aug 29th, 2008 02:09 |
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GinORL,
Sorry for sounding terse. Just jumping through all the time barriers. Please pardon, no offense intended.
Your doctor can access Phase 2 on the study site per. Be sure to talk to your doctor about it if s/he is not already aware:
Private Section for Health Professionals
This private section is reserved for Health Professionals: for the discussion of study methodology, results and the science.
Time in Phase 1 can also be discussed with your doctor, but it is an important time to learn about your own immunopathologic response patterns. You seem to be reporting the expected good-day/bad-day, and that gives you some idea about what you can do to keep IP responses steady but controlled. Good for you!
You might also appreciate charting your responses. Like a stop motion camera, after a while you get a big picture perspective of action with things that don't seem to really be moving:
Downloadable MP Documents, Phase 1
Best to you GinORL--Janet
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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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GinORL
Member
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Posted: Fri Aug 29th, 2008 04:37 |
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Thanks JRF
As I said my doctor is neither for or against MP. She knows its why I asked her to prescribe benicar and minocycline. She is a Dr at Fibro and Fatigue Center. She may already have phase 2 info or be willing to log into it. I think she would but since she isnt a fan yet per se I dont know for sure. I hope so. I know she will prescibe whatever it says. But I hope she 'gets around to' getting phase2 info. I know they are very busy there, they've added staff etc. Sometimes they ask me to do stuff like this (believe it or not). So theres a slim chance I may have to plead u for it later. i have tele apt with her on sept 10. that should leave enough time so i will find out then. Thanks!! could u please tell me EXACTLY HOW DOES SHE DO THIS? so I can make it easier for them. "Your doctor can access Phase 2 on the study site per. Be sure to talk to your doctor about it if s/he is not already aware:
Private Section for Health Professionals
This private section is reserved for Health Professionals: for the discussion of study methodology, results and the science."
I ask because when clicked it doesnt prompt to register or login as doctor. Do they just email moderator? thanks again.
Last edited on Fri Aug 29th, 2008 04:43 by GinORL
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natalie17
Advocate
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Posted: Fri Aug 29th, 2008 09:04 |
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Hi GinORL,
You Doctor will be added manually by one of the admin staff upon following the instructions under the Private Section for Health Professionals link.
Health Professionals are welcome, and will be manually joined into the database after sending an email to Moderators@MarshallProtocol.com listing their desired username and password.
Thanks,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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GinORL
Member
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Posted: Sun Sep 21st, 2008 03:46 |
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I got some adrenal tests that show high cortisol, with resulting low insulin and low SIga. The test papers recommend taking phosphorylated serine (like phosphatidylserine I guess). I need to know if this will interefere with MP because I really want to try it.
My IP seems to be less than it was (sometimes unnoticeable), even though I just moved to 50mg Mino. I dont feel any better or worse overall, so Im a little dissapointed that IP is down. It seems the time of day I take the Mino might have some bearing on IP, but Im not sure. I would actually like a little more IP, is there anything I can do to increase it?
I think I asked about resveratrol before..its not too important but Im still wondering if it can be taken on MP. I've been searching around and trying to read about it, but cant seem to come up with anything that helps me know if I should take it on MP or not.
Many Thanks!!
____________________
~G
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Sun Sep 21st, 2008 09:39 |
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GinORL,
See if these links from the alphabetically indexed FAQ helps any:
Medications to Avoid While on the Marshall Protocol (click here)
I thought all over-the-counter supplements were safe. Which ones should I be concerned about?
Which diagnostic tests do I need?
What tests do I need to monitor my progress on the MP?
Best to you GinORL--Janet
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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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GinORL
Member
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Posted: Sun Sep 21st, 2008 16:59 |
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| thanks I checked those links again. Did more searches. Found no helpful info on phosphatidylserine, how to increase IP, or resveratrol.
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~G
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Julia
Advocate (on leave)
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Posted: Sun Sep 21st, 2008 18:16 |
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The topic Why do I have to stop my alternative treatment and avoid most supplements? (even if a specific supplement isn't named there) makes it clear why all supplements must be avoided unless prescribed by your doctor for a specific purpose.
Dr Marshall says, There is no 'list of supplements to avoid'. Our recommendation is to avoid all of them unless there are special circumstances.
Phosphatidylserine - this Wikipedia article talks about it regulating hormone balance. It's made from soy. Benicar balances your hormones, you don't want anything that might interfere with that.
Increasing IP - as your 25-D level comes down by avoiding dietary vit D, your IP should increase. Meanwhile, keep following the guidelines, which have worked well for many hundreds before you 
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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