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satey
Member
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Posted: Tue Apr 10th, 2007 18:04 |
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Greetings,
I am new, considering MP, and have severe MCS where most/all drugs, vitamins, supplements, etc cause me to become too sick to use them. i strongly believe that MP could help me. I am wanting to know if there have been others like me who have somehow been able to start Benicar and stay on it, and continue the MP. I have already read the MCS questions and answers i could find but there was nothing that spoke to this issue. Thank you!
satey
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FM, MCS, depression, back/neck pain, 125D43, 25D19, MP 9/07, lorazepam, haldoperiol, nortriptyline, chickweed tea, crampbark tincture, NOIRs, low lux home, limited outings covered up
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LH1953
Member in Phase 3
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Posted: Tue Apr 10th, 2007 19:26 |
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| Hi, Sounds like we have lots to talk about. Do you live in the US? If so, I can contact you. I will send you a PM with my info. The MP IS YOUR PLACE TO BE! Welcome! Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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prugg21
Health Professional
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Posted: Tue Apr 10th, 2007 19:48 |
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Hi Satey,
I also have severe MCS and cannot tolerate most drugs, herbs, vitamins or supplements like you. I have not had any problem in tolerating the benicar or any of the abx so far.
And you are very right in suspecting this protocol will help you. I have posted in the phase 1 alumni forum along with some others with MCS, so this should help you see how it's helping those with MCS.
Keep in mind that when you start the benicar, you may have a lot of symptoms related to shifting hormones as well as possibly some immunopathological responses (herxheimer) that might confuse you as to whether it's a reaction to the medication or something else.
You will not be reacting to the benicar, although it may feel like it. Practically everyone who goes on the MP has some adjusting to do to the benicar which is why you're told to wait at least 2 weeks before starting the minocycline. We may have even more adjusting and therefore symptoms than some others as we may be in a more seriously altered state starting out. I've talked to many people with severe MCS on the MP and all of them have been able to tolerate the benicar. You might have problems with an abx, but others can be substituted.
You will become more light sensitive adding more confusion and symptoms to the mix. This makes it highly important for us to make every effort to avoid light as much as possible especially in the beginning.
But, I can tell you, it is worth it. I've been on the MP for 1 yr now, just last night was looking at my journal from 6 mos. ago and was so surprised to see how much my symptoms have receded since then, like they say, the healing sneaks up on you.
Get well,
Pam Last edited on Tue Apr 10th, 2007 19:51 by prugg21
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MCS/CFS/FM,22+yrs,Gerd,migraines,insomnia,avoiding light & D,NoIRS,benicar 3/30/06 40mg Q4-6H,mino,4/18/06,mod/ph2-
10/17/06,probx,estriol, 3/06-25D=27,9/06-25D=26,11/06-25D=21,4/07-25D=22,7/07-25D=19
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Dr Trevor Marshall
Research Team
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Posted: Tue Apr 10th, 2007 20:26 |
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Factoid: The following Olfactory receptor genes are some of the genes with adjacent VDREs, the genes most likely transcribed by the VDR 
Four copies of this gene:
olfactory receptor, family 1, subfamily F, member 1
Three copies of each of these genes:
olfactory receptor, family 1, subfamily A, member 2
olfactory receptor, family 2, subfamily A, member 4
Two copies of each of these genes:
olfactory receptor, family 1, subfamily D, member 4
olfactory receptor, family 1, subfamily N, member 1
olfactory receptor, family 2, subfamily H, member 3
olfactory receptor, family 2, subfamily K, member 2
olfactory receptor, family 2, subfamily S, member 2
olfactory receptor, family 2, subfamily W, member 1
olfactory receptor, family 6, subfamily A, member 1
olfactory receptor, family 7, subfamily A, member 17
And single copies of each of the following genes:
olfactory receptor, family 2, subfamily C, member 1
olfactory receptor, family 2, subfamily B, member 6
olfactory receptor, family 51, subfamily B, member 2
olfactory receptor, family 51, subfamily B, member 4
olfactory receptor, family 52, subfamily A, member 1
olfactory receptor, family 5, subfamily P, member 3
olfactory receptor, family 3, subfamily A, member 3
olfactory receptor, family 1, subfamily D, member 2
olfactory receptor, family 1, subfamily D, member 2
olfactory receptor, family 1, subfamily E, member 1
olfactory receptor, family 1, subfamily E, member 2
olfactory receptor, family 10, subfamily A, member 4
olfactory receptor, family 11, subfamily A, member 1
olfactory receptor, family 7, subfamily A, member 5
olfactory receptor, family 2, subfamily F, member 1
olfactory receptor, family 5, subfamily P, member 2
olfactory receptor, family 10, subfamily J, member 1
olfactory receptor, family 5, subfamily P, member 3
olfactory receptor, family 7, subfamily C, member 1
olfactory receptor, family 7, subfamily C, member 2
olfactory marker protein NP_006180.1
So now you can see why the MP makes such a profound difference to MCS, and why some degree of MCS almost always accompanies Th1 disease
ps: Genes of which more than one copy exist in the genome tend to be the really important ones
Last edited on Wed Apr 11th, 2007 06:47 by Dr Trevor Marshall
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satey
Member
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Posted: Wed Apr 11th, 2007 11:00 |
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Hi Lori,
thank you for your great reply...i am such a newby that i don't remember what a VDR is (i know i have read about it before but couldn't find it)...and i know that i don't have PM if that is personal messaging like instant messaging...sorry, i am kind of a computer luddite. i would love to get your story, please tell me how to go about it, either by giving you my email address or whatever. i live in north florida. i am so encouraged to get some replies. thanks!
satey
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FM, MCS, depression, back/neck pain, 125D43, 25D19, MP 9/07, lorazepam, haldoperiol, nortriptyline, chickweed tea, crampbark tincture, NOIRs, low lux home, limited outings covered up
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satey
Member
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Posted: Wed Apr 11th, 2007 11:12 |
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Pam,
thank you for your informative reply. would also love to know more of your story, or anyone else's who started out with severe, almost universal-reactor type MCS. you say you have talked to many people like us...is there a group/forum anywhere about this?
i am waiting til may 3 for an appt with the doctor 1.5 hrs away from here in Jacksonville, Fl who has been doing MP with a friend of mine here. impatiently. i can barely find anything to wear that doesn't make me extremely ill, so i look like a total ragspicker, to quote my father. i also can use NAET type treatments to stop (and only stop temporarily til the next exposure) most food reactions so that i can eat things; most food makes me quite ill too.
my life is so close to hellish now that the changes and sacrifices i will make to do the MP right will be really no big deal. after all, someone who gets jealous when she hears of people getting cancer - and the love and support that pour out of those around her, and the notion of some kind of RESOLUTION TO THE PROBLEM...will be glad to do nearly anything to get on the road to some kind of recovery. thanks for letting me vent!
satey
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FM, MCS, depression, back/neck pain, 125D43, 25D19, MP 9/07, lorazepam, haldoperiol, nortriptyline, chickweed tea, crampbark tincture, NOIRs, low lux home, limited outings covered up
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19134 |
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Posted: Wed Apr 11th, 2007 14:56 |
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Satey
VDR is Vitamin D receptor
see the forum How to Register and Use This Board
Searching for posts by specific users
How do I PM? Private Messaging
the links to MCS success Members recovery experience are within the FAQ Will the MP treat MCS?
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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LH1953
Member in Phase 3
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Posted: Wed Apr 11th, 2007 22:18 |
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| I sent you a PM (private message) with all the info, speak soon. Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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ShrnHml
Guest
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Posted: Fri Apr 13th, 2007 04:14 |
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| Hi Satey................I have had jealousy of people with cancer. They get so much understanding and support. I wrote a poem about it. If you would like to read it, please send me a private message through this board. ......Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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LH1953
Member in Phase 3
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Posted: Fri Apr 13th, 2007 13:37 |
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| I have not heard anything from you. Were you able to get my info.? If not, put your email address on your profile. Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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satey
Member
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Posted: Sun Apr 15th, 2007 22:05 |
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i had a wonderful 2 hour conversation with Lori (LH1953) yesterday. it was filled with suggestions and info (and great emotional support!) and has helped me toward making my MP journey a reality. i have some issues she said i should post here for comments/help with.
i have some drug allergies, i mean the kind where i got hives from them in the past. (while a teenager i had tonsillitis many many times, and took innumerable antibiotics.) the two that gave me hives were penicillin and clindamycin; erythromycin gave me severe, intolerable stomach cramping. incidentally my mom has gotten sick from many drugs too but does not suffer much inconvenience otherwise. she does have some food intolerances though.
i had my tonsils out at age 21 and the throat business went away...but i had mono (not dx'd by a doctor) before that and after that (diagnosed by MD), and a wide variety of fatigue episodes after that but long before i came down with fibro in 91. i tested positive for Epstein-Barr virus; much later positive for HHV-6, and have dealth with HSV-II (herpes) since 1976 and had a severe outbreak continuously for years...took Acyclovir for 6 years and still had the herpes but then it was "cured" (just went away and never came back unless i was extremely stressed) using homeopathy. after i got the fibro. i became so sensitive to homeopathy that it acts like poison for me, sometimes with serious consequences.
something of possible interest: when i was about 14 my father who was quite an eccentric character (and had sole custody of most of the kids) acquired a "small farm" with livestock. one of the things he did was buy newborn dairy calves that had been taken away from their mamas so milking could continue on the mama...the calves were always sick with the scours, or horrible yellow diarrhea that would kill them quickly much of the time. i was always in the middle of all the animals. i actually got sick with that same yellow diarrhea. back then my dad did not "do" doctors so my illness went on until it decided to stop by itself. i assume by what i know now that it was coccidiosis that the calves had, and wonder if i had it too. it took weeks to stop being sick that way. i just wonder how that affected me. (during those years we also got raw milk from nearby dairy farms in upstate NY.)
anyway back to the present. i have said i cannot take drugs or vitamins or supplements, although recently have taken a bit of pure milk thistle and some pure vitamin B2 that was compounded (i was diagnosed with a B2 deficiency not long ago based on blood work). the problem is i get very sick from gelatin or cellulose capsules, and must open them up and dump contents into a blob of food and swallow it. i also am sensitive to the fillers including methylcellulose or any other cellulose at all (ie microcrystalline) that are used to make TABLETS of all sorts. i am concerned that this could be a big problem for me when beginning the MP even if it does eventually stop me from being so chemically sensitive. if there is generic benicar then the compounding pharmacy might be able to compound it for me in lactose which is ok in those small quantities.
i guess i would like to know what you think. perhaps i would improve quickly and this would not be an issue. please comment.
Please send doctor list for Florida.
thanks,
satey
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FM, MCS, depression, back/neck pain, 125D43, 25D19, MP 9/07, lorazepam, haldoperiol, nortriptyline, chickweed tea, crampbark tincture, NOIRs, low lux home, limited outings covered up
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19134 |
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Offline
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Posted: Sun Apr 15th, 2007 23:34 |
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Thank you Satey
I think most of your concerns have been addressed in the posts and links above..
How does Th1 inflammation develop? What is successive infection?
see also I'm allergic to an antibiotic on the Protocol. Is there a substitute?
To REQUEST FOR DOCTORS LIST (click here) Please READ INSTRUCTIONS first.. 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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satey
Member
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Posted: Sat Jul 28th, 2007 18:14 |
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I have a little question as i go through my days waiting for a new doctor appt on August 17.
DO I HAVE TO WEAR NOIRS IN THE HOUSE or would it be OK to wear other types of dark sunglasses? sorry if this is already in print somewhere...i have searched and not found it easily.
i have been avoiding sun/bright light and wearing NOIRs since early june. i have had a hard time with bad photosensitivity especially in the first few weeks, and now i find i am even more reactive to the metals in pots and pans and whatever heavy metals are in my water or in the pesticides in foods. i am not taking benicar til after my doctor appt in august. i guess it may not be too good to do the light avoidance but not take benicar. oh well. i will sure appreciate a change.
thanks in advance for answering my sunglasses question.
satey
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FM, MCS, depression, back/neck pain, 125D43, 25D19, MP 9/07, lorazepam, haldoperiol, nortriptyline, chickweed tea, crampbark tincture, NOIRs, low lux home, limited outings covered up
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19134 |
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Posted: Sat Jul 28th, 2007 19:08 |
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Satey
see this FAQ Should I avoid sun exposure and Vitamin D while I'm waiting to start the MP? as an explanation: your increased symptoms are as a therapeutic probe.
when doing MP: indoors: Dimmer switches and / or lower wattage bulbs may be helpful to achieve less than 30 lux indoors making it possible to be able to see quite easily without glasses. you must be able to see and be safe. The aim is to keep visibility up while keeping the light energy low.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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satey
Member
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Posted: Sun Jul 29th, 2007 00:12 |
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Thanks for your quick response. i still am very unclear about whether wearing non-NOIR sunglasses in the house would be ok. i live with someone who cannot deal with extreme low light levels and thus i must wear something unless i am alone in the house which is not very often. the kitchen counter lights are all low wattage fluorescent, like 15 watts. i also watch TV and want to know if NOIRs are necessary for that in addition to whether they are necessary for incandescent lights. we have one of the older big screen TVs that is not a flat-screen but just made big by mirrors. there is no way to make that screen less bright, unfortunately.
i have been having various difficulties with the NOIR glasses; the small fitovers are beginning to crack in the center and have always hurt the bridge of my nose, but i like them because they are lightweight and easy to handle. the med size fitovers are too big and slide down my face and hurt my ears. foam type things that hold the glasses on will most likely give me trouble pretty quickly. wraparounds seem to squeeze my head and don't want to stay on anyway. i am boggled by all the other kinds of glasses and the fact that most synthetic rubber stuff makes me sick. so having a couple pairs of cheap, dark, non NOIR glasses around for a break from the big guys is nice, but i don't want to blow anything MP wise.
the link you gave me about avoiding light and D was very helpful. i hope to hear from someone soon about my questions. thanks very much,
satey
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FM, MCS, depression, back/neck pain, 125D43, 25D19, MP 9/07, lorazepam, haldoperiol, nortriptyline, chickweed tea, crampbark tincture, NOIRs, low lux home, limited outings covered up
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19134 |
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Posted: Sun Jul 29th, 2007 00:22 |
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Satey
Until you start MP, wearing non NoIR glasses in the house is fine.
when doing MP: If the artificial light level is above 30 lux, it is recommended to wear 10% NoIR glasses indoors, and for watching television, and on computer.
If your home is not protected from natural light, windows covered, because of others in the same space, your skin and eyes need to be protected. PROTECTING YOUR EYES has all the details and tips re glasses.
AVOIDING SUNLIGHT and BRIGHT LIGHTS How and why to protect skin and eyes while on the MP
Thanks, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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satey
Member
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Posted: Sun Jul 29th, 2007 00:29 |
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Actually the place is nearly black inside since we covered nearly every one of our big windows with foil. so natural light is no problem. just artificial light.
thanks for the fast response and resolution to my question.
i do have one other big nagging question. according to the best science, is it wise or unwise for a healthy person to take fish oils? is supplementing with vit A and D actually detrimental to a normal person? can it undermine their system's health?
thanks,
satey
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FM, MCS, depression, back/neck pain, 125D43, 25D19, MP 9/07, lorazepam, haldoperiol, nortriptyline, chickweed tea, crampbark tincture, NOIRs, low lux home, limited outings covered up
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19134 |
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Posted: Sun Jul 29th, 2007 00:29 |
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| Why would a healthy person need to take fish oils?
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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