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maggie weeks
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Posted: Thu May 12th, 2005 16:55 |
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| Since I started cutting out Vit D in all ways diiet and sunlihgt my moods have been very up and down and bouts of euphoria, weepyness and good old anxiety rearing it ugly head, Is this normal or am I lossing it again ?Maggie
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Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
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Aussie Barb
Research Team
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Posted: Thu May 12th, 2005 17:31 |
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Hi Maggie
Cutting light and Vitamin D will cause a shift in the hormones.. and may cause these symptoms as the body seeks homeostasis....
It is important to be constant in the light and D avoidance also, to have less fluctuations.. and starting the benicar may help.. Dr M recommends no bromelain (wobenzym) with MP.
You may also wish to use your Rx anxiety meds as per Dr Rx to help you..
Barb...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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maggie weeks
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Posted: Mon May 16th, 2005 00:29 |
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Dear Barb, thank you for your advice, my own Dr Blaney said I may be having small herxes which may contribute to the up and down emotions I have had. I am still awaiting more tests an EMG and lower backand sacroiliac Xray, still using NOirs and covering up. I contacted my head docor and he said OK for use of anti anxiety drug when needed and I will continue with relaxation and meditation
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Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
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LeAnne
Member in Phase 3
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Posted: Wed May 18th, 2005 16:26 |
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Maggie,
I know for me I've had some emotional ups and downs. I think the lifestyle change is hard, not only for the patient, but also for the whole family. These changes put a damper on your social life and your being able to go out to eat ect. Staying inside all day is depressing too. I think this is part of my feelings of depression. I have three teenagers and a husband who are used to me doing everything. Now the roles have changed. They are frustrated because of the changes. This adds to the depression. You feel isolated and alone. I'm thankful to have this web site to be able to communicate with others who understand. I think communicating is the best therapy.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Mkap2nd
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Posted: Wed May 18th, 2005 16:45 |
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| I think that that is a key component to this. The isolation and loneliness are very difficult. I also know that not seeing the spring and its beauty is a bummer.
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chronic neuro tick illnesses asthma| Pos proteins in CSF Pos tau protein| 1,25D/27.5 25/8.3| light & D avoid 4/10/05| NoIRs| BENI 40/4-5hrs, mino 5/12-
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CLefelt
Member in Phase 3
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Posted: Wed May 18th, 2005 18:06 |
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I so agree. Herxing is a bummer but if I could go out in the sun and mingle with my neighbors, or sit on my porch in the mild spring air and see the buds opening, I'm sure I'd feel more emotionally 'up'. Not so deprived.
But, it is what it is and, there's always next year.
To Mkap2nd,
Wow. Four tick bourne diseases! You really hit the jackpot. Good luck as you whomp those buggers.
Carol
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Lyme Bartonella CFS FM Chly Pneu; Klonopin Florinef Lexapro TriEst Prog 10/04: 25D=9 1,25D=70 4/05 4/06: 25D=6.2 1,25D=20.9 8/06:25D=<7 1,25=13; Mino 11/36/04 2Abx 3/19/05 3Abx 4/27/06
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DianaB
Member
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Posted: Wed May 18th, 2005 21:54 |
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Maggie,
I have been going through exactly the same thing-I can't believe the overhelming feeling of just not caring about anything-this has been especially true since wearing my noirs and being very strict about avoiding light and vit. D-this feeling is very new to me -even in the last year and a half as my symptoms got a lot worse, I never experienced these feelings-being isolated in my cave -although it is a very nice cave- and watching the world go by is hard. I try to go outside for a little while and walk around my yard after the sun goes down and get some fresh air-that seems to help a little.
It is going to be a long summer-but I am willing to give up a summer to have my life back.
Your fellow Vancouverite
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bartolla, rikettsia, clinical borrelia, tick bite and emg rash aprox 15 yrs ago,March/05 25mg pulsed mino,disc after 2 weeks, Benicar since 4/04/05 40mg/6-8 hrs, avoid sun/vit d, noirs 12d=38.4 25d=30.4, back on mino 25mg every 2nd day May 15/05
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Mkap2nd
Guest
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Posted: Wed May 18th, 2005 22:04 |
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Carol,
Thanks for recognizing the load. It's made it interesting. I know that any tick borne illness is bad. My son had just Lme and it took much heartache and suffering until it left him be. It's not easy and as you said I'm lonely and the things that got me by have now been removed. I miss the spring, my swing, running, my neighbors etc. BUT IT IS AS IT IS AND WILL BE. AND WILL END!!!!Last edited on Wed May 18th, 2005 22:06 by Mkap2nd
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chronic neuro tick illnesses asthma| Pos proteins in CSF Pos tau protein| 1,25D/27.5 25/8.3| light & D avoid 4/10/05| NoIRs| BENI 40/4-5hrs, mino 5/12-
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maggie weeks
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Posted: Thu May 19th, 2005 00:45 |
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Dear Dianna B, thank you for your words of support fellow Vancouverite, I have to work under florescent lighting so I am on a modified MP at present and so far I am keeping in contact with friends etc.< But I had 2 years of deep despair when I had a major depressive disorder and nothing can beat that for me. It was mostly chemically driven by wrong meds long story. I had 6 months on my hands and knees before being diagnosed with a sequested disc and had emergency surgury after being told it was all in my head!! Well we all have our stories
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Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
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maggie weeks
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Posted: Thu May 19th, 2005 02:26 |
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| Would you like to receive a private email from me? Maggie Weeks
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Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
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Big John
Member
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Posted: Thu May 19th, 2005 04:51 |
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Hi All!
Normally lately I have not replied to posts, because of my eyesight however, this one I could not resist. I have Liz (Boss) on the keyboard!
Maggie, you are so right about the depression and emotional ups and downs. My opinion is that we suffer from a seasonal type disorder. Many people suffer from this during winter when the sunlight changes affect the harmonal balance. This coupled with the harmonal changes of the MP really can cause a whopper of a time.
My experience has provided me with some ways to deal with the depression. first, I was so frustrated that I could not enjoy the Spring, then I realized I was limiting myself and that it was just not true.. I have had to adjust, but I do enjoy the season. First, I make it a point to sit outside and enjoy the evening sunset, just after it goes down. Liz and I continue our evening with a evening meal outside. Second, my experience shows me that probiotic helps with the blues. Don't ask me how or why, but it does seem to help me.
My major problem that seems to depress me the most is that I often seem to focus in black and whte.. I sometimes think that I must stay inside all the time, I think that I must deprive myself of shopping or getting my favorite coffee at the local starbucks. With some careful planning I have been able to adjust my schedule and have begun to enjoy many of life's pleasures again by simply adjusting my thoughts.
Several times I have thought about giving up the protocol because of emotional frustration, and I am sure many others have acted on their feelings. When this happens I do just that.. I take a break. I took a month off (unintentionally) when I was on vacation. Upon returning to the states I resumed the protocol and had a renewed energy and attitude.
Lastly, I have found that there are several prescription alternatives that are very helpful and have not interfered with the MP.
My experience has taught me that much of my depression is created by feeling that I have no choices and that I am bound by the protocol, when in fact I do have many options and of course there are the positive results, better health!!! Keep smiling!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Dr Trevor Marshall
Research Team
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Posted: Thu May 19th, 2005 05:06 |
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Big John,
Good to hear from you again. We have a new antibiotic combo for phase 2 that seems to be doing a better job on eye inflammation. Please take a good look over the recent posts in the Phase 2/3 forums.
..Trevor..
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Tobi
Member
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Posted: Thu May 19th, 2005 05:18 |
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Hi Big John,
Welcome back. You've been missed.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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maggie weeks
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Posted: Thu May 19th, 2005 13:34 |
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Thank you John I am more settled this week after talking to my head Doc. I find rreturning to mediation has really helped me and I decided while in meditation.To do the things that give me joy in life.such as spending more time with my 3 cats, painting and being creative. Contacting old freinds and watching up beat movies. Catching up on old photos and making creative albums. trying new recipes and buying plants for my garden.
I make a list of the things that give me joy and I go to bed and try and think of things tp be grateful for. After all the a MP is not a terminal disease, it has a happy ending. I have 4 friends with terminal cancer right now, one friend died before Xmas NTwo have been Oncology doctors, they taught me so much, live for the day ,each day is a new one wirh new challenges and hopefully new joy. I finsh work in June so will have to make a decision whether to take the plunge now or wait for fall
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Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
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kathleen
inactive member
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Posted: Thu May 19th, 2005 20:38 |
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The good news is that there will be another spring next year, and another the year aftet that. And I can't quite bear to imagine how wonderful they might be after recovery.
For now I'm going out after dark with my headlamp on to putter in the garden, after whole (boring) days spent in bed. When the moon is full it's glorious. It's quiet and there are no people bothering me. The lilacs seem to be more fragrant, and the outlines of the trees are beautiful. I suspect that once I recover I'll continue with night time gardening.
Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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maggie weeks
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Posted: Fri May 20th, 2005 00:23 |
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| Dear Leanne, thanks for replying to my post. All I can say is that you can only do your best, even when you are ill. As long as you realise that for a change you are the one that needs looking after,after all you have definatley been the strong one, running the house and family.Mine have grown up, but I have certainly had to rely on hubby for at least 2 years when I was flat out on my back and 2 years of deep depression. He took a whole year off work and believe it or not by taking baby steps at a time and having ridden may roller coasters we made it. Now we are to struggle with another health challenge and I feel so lucky to have cyberspace as a support system and to know that are people around who understand the road to recovery.I found who my true friends were, but I feel it was a life lesson and now through my job I can help other people I think these challenges are sent to us for a reason . Good luck and I hope we can chat again. Maggie
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Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
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scooker48
Member in Phase 3
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Posted: Fri May 20th, 2005 12:21 |
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One trick which I've discovered is giving a close
careful listen to music. Its almost as if I hear more
with the reduction in bright lights and sunshine, or
possibly I'm able to concentrate more. Beethoven's
5th symphony, which is SO well known, has so much
substance that I am captivated. There is SO MUCH
to explore if I remember to think and be creative.
Through another source, a Ph.D. bacteriologist, I
learned that these bacteria which cause trouble are
found in potting soil. Be careful, gardeners!
If anyone wants a copy of the email message, I will send
it by PM.
Thank goodness for this community. Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 4/08; Wear NoIRs outside & for computer screen time. No K creme used.
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maggie weeks
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Posted: Fri May 20th, 2005 15:49 |
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| I agree with the music, it is a wonderful form to relax and take us away from our problems and transport us to another world. Thanks for the tip about potting soil. I wil get my hubby to do the tubs this year , sob sob !!!Maggie
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Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat May 21st, 2005 01:28 |
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Sherry,
Please do not be overly concerned about your exposure to potting soil. The bacteria that cause chronic inflammatory diseases are found in many places. We would be living an extremely narrow existence if we were to try to avoid them in all the locations they might be found. Please see:
CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL
Best,
Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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ShrnHml
Guest
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Posted: Sat May 21st, 2005 13:03 |
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Kathleen,
I, too, have become enamoured of nighttime gardening.....my headlamp is so amazing. I never could stand the heat in the daytime.....now I know why. It's so great now with cool weather, but I want to ask you how you plan to handle mosquito season, which is almost upon us?
TIA....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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