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alycia2
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Posted: Sat Jan 24th, 2009 03:19 |
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hi-i haven't posted in a while. i have been on mino for a month now. i am at 50 mg. and should start 75mg. this weekend but am thinking that i may give it one more week at 50mg. i haven't talked to my doctor this week but all the reading suggests it ok to take it slow...?
at first i felt a lot better on the mino. it has always from the start made me feel very tired the first day but then the next day i would feel energetic and almost healthy..but i think my d levels must be getting down there and i am truly starting to kill some bacteria. i have felt sick pretty much all week. i was exposed to a lot of light one day last week and that started it, but then it didn't go away..feeling tired, body aching, dizzy. up unitl that day (we were helping one of our kids move) i have stayed almost indoors all the time...very limited sun exposure.
and now for the past several days, i have had a lot of anxiety in my chest..some sharp pain too. but the pain goes a way quickly..i have adjusted my benicar to take more frequently and i also have valuim for when i really get shakey..
i had a complete heart check up prior to starting the mp so i know my heart is basically healthy but i feel like it has inflammation. i understand that i am in a learning phase right now..figuring out how to manage the meds and my bodies' reactions...
i want so badly to believe that i am doing the right thing and that i will get well. i underestimated how being closed up during the day would effect me. the depression gets pretty bad at times...learning to knit..read when i can focus, i watch old movies...i read about the mp a lot of the time..
am looking forward in some ways to warmer temps and daylight savings...and hopefully enough energy to spend some nice long evenings outside after the sun has gone done...but this year, i will make sure to wear tic protection. have also started to wash my hands a lot more often and to be aware of ways in which bacteria can be managed...esp. around my kitchen...change dish cloths more often and towels...no sponges, etc.
was really anxious when i started this post..but feeling calmer now.
thanks for being out there...
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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edj2001
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| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 221 |
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Posted: Sat Jan 24th, 2009 07:16 |
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Hi Alycia,
Sounds like you are doing all the right things.
I think we all understand (I know I do) about the depression  Keep posting as you will find others walking down this same path with you.
Gene
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Sarcoidosis 1998| MP Dec 05| Gene's Story| Perspectives|
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alycia2
Member
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Posted: Sat Jan 24th, 2009 12:57 |
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thanks gene.
you are always so sweet to answer my posts. i appreciate it. how are you doing? and your wife? has she started the mp yet? i have a feeling that in the future my husband will have testing done. he has had a lot of exposure to tic bites..a landscape architect..has his own design and build firm...and spends most of the time outdoors...it's been really scary to us both to think that he might be some kind of carrier to lyme or that he might be suffering from it himself...and it just hasn't manifested to the point of making him ill yet. i guess time will tell on that one.
take care gene.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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giddygirl
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| Joined: | Wed Dec 31st, 2008 |
| Location: | Perth, Canada |
| Posts: | 65 |
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Posted: Sun Jan 25th, 2009 23:29 |
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Hi Alycia
We have a lot of the same start points and symptoms. I get heart issues as well. I have a lot of palpitations both pre and current MP. I am also starting my 75mg of mino. Just taken first dose this morning. I am slightly different to you. I find that the first few days I feel like rubbish then I start to come good. There is a link about when to get concerned regarding heart symptoms.......somewhere. There is just so much info. Gene has been a fabulous help for me and he might know the link that I am talking about and where it is.
Good luck!
Leanne
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MP 30/12/08 spent Xmas drugged out of my brain 4 pain. Fibromyalgia, neuropathy, MCS, food and med intolerances, 4 MVAs ?mild CFS,exertional asthma,migraines,moodiness, heart palps, pruritis,heavy muscles, MIA:
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DNStog
Member
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Posted: Mon Jan 26th, 2009 02:01 |
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Here's the link you wanted: ShouldIbeconcernedaboutcardiacissues
Regards...Donna
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MP started 12-27-04
Sarcoidosis Systemic/Uveitis/ Hypothyroidism/ Raynaud's Phen/Paraesthesia/rhinosinusitis/ asthma/depression
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alycia2
Member
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Posted: Mon Jan 26th, 2009 02:47 |
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thanks leanne,
i decided to wait one more week before starting the 75mg. we are going out of town with our children for a few days..they are going to ski and my husband and i are going to care for our grandchildren..3 and 9 mos. together we make a pretty good team..the kids are happy little ones and easy to care for...i am starting to cope better on the 50 mg. so know it's time to move up.
the heart stuff is scary..and i know what you mean about the information..there is so much. i find myself reading throughout the day many times...i think i understand it and then i try to explain it to someone and it's like i don't know anything..! frustrating..by the time i am able to retain and understand i prob. won't need it anymore... i do know that while i read it makes sense to me..and i relate to it..and i do feel so much better now that i am on the mp. i was in so much pain earlier this year that my life had become so narrow...i couldn't do anything..plan anything, enjoy anything...my depression was horrible..i thought often of not being here anymore..it's not like that now...i hope so much for you that your pain is better. i am so grateful for the mp.
take care and good luck to you..i may not ihave nternet service where we are staying but will take my computer and am bound to find some place to check my posts.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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alycia2
Member
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Posted: Mon Jan 26th, 2009 02:49 |
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thank you donna. i have book marked this link and appreciate your response..
take care.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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giddygirl
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| Joined: | Wed Dec 31st, 2008 |
| Location: | Perth, Canada |
| Posts: | 65 |
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Posted: Mon Jan 26th, 2009 03:09 |
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Hi Alycia
I am keeping my fingers crossed that one day some clever little computer groover will join MP and be able to put evey single link from all of the sites under one heading in alphabetical order. I am not suggesting get rid of what they hav but just add a seperate heading. There is so much wonderful information on this site, then I go to find something and can't retrieve it despite spending an hour or two looking for the links. Imagine just a full list of every link under on heading! I wouldn't need to bother so many people!
Anyway, I think that I will just keep my concentration on the gratitude of just having access to a potential cure for me, let alone the wealth of information and the tireless hours spent by many volunteers to help us all through this journey! There are certainly some incredible people and stories on these sites.
Have a wonderful vacation with your family!
Leanne
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MP 30/12/08 spent Xmas drugged out of my brain 4 pain. Fibromyalgia, neuropathy, MCS, food and med intolerances, 4 MVAs ?mild CFS,exertional asthma,migraines,moodiness, heart palps, pruritis,heavy muscles, MIA:
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Aunt Diana
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| Joined: | Fri Oct 26th, 2007 |
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Posted: Mon Jan 26th, 2009 03:20 |
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| Sometimes using Google to find information is pretty effective, as long as you add the words Marshall Protocol. (Ie Marshall Protocol Immunopathology )
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ABC of MP| MP Stories| Bacteriality| MP Search|
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 441 |
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Posted: Mon Jan 26th, 2009 03:45 |
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| You can also use this, which will only return results from the MP-related sites: MP Sites Custom Google Search
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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giddygirl
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| Joined: | Wed Dec 31st, 2008 |
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| Posts: | 65 |
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Posted: Mon Jan 26th, 2009 05:30 |
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Thanks Josh and Aunt Di! I didn't realise that I could do that!!!! That's great and will be a big help 
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MP 30/12/08 spent Xmas drugged out of my brain 4 pain. Fibromyalgia, neuropathy, MCS, food and med intolerances, 4 MVAs ?mild CFS,exertional asthma,migraines,moodiness, heart palps, pruritis,heavy muscles, MIA:
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alycia2
Member
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Posted: Mon Jan 26th, 2009 20:20 |
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hey leanne,
we have just arrived..red river, new mexico. very pretty here. i figured out a great way to travel..i have become so sensitive to light. it really makes me sick. i went to walmart and got static 5% window tinting material. it's reusable-cut to fit. it's an eight hour drive for us..we did half of it before the sun came up and then when it got light...i covered the windows to block the light..we drove with the sun at our backs..was able to make the car really dark. wore my noirs and did just fine..it feels so good to get out of my house..the place we are staying is also nice and dark..i feel pretty good, tired but not in pain. i too am so grateful for all the volunteers that make this possible...i didn't think i would do much posting. have never really done any blogging...not on my space or face book...but am finding this such a wonderful support..look forward to reading my posts and those of others...i feel less afraid for sure.
hope you are having a good day.
cheers!
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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alycia2
Member
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Posted: Tue Feb 3rd, 2009 14:06 |
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hi leane,
how's it going? i started on 75mg. this week..first day was ok but by the evening of the second day...i was so tired...felt like lead weights on my feet and my brain...i slept ok last night..had some anxiety..it wakes me up.do you have that...it's right before i break out in a sweat..the anxiety is a physical feeling of fear in my chest and stomach..it's quite strong...sometimes i just go ahead and take a valium. will take another dose of abx today..just was wondering how it is affecting you? we had a fun with the kids on our mini vacation. i stayed inside most of the time and between the two of us, we were able to take care of the kids and have fun doing it. also, i seem to be getting less light sensitive..seems too early to be having that reaction..i will maintain the level of darkness though and stay out of the sun as much as possible...
hope you are feeling well today.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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giddygirl
Member
| Joined: | Wed Dec 31st, 2008 |
| Location: | Perth, Canada |
| Posts: | 65 |
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Posted: Tue Feb 3rd, 2009 21:04 |
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Hi Alycia
I am going well....well sort of!!! Yes, i do get 'anxiety' although for me it tends to be more of an allergic reaction with breath shortness and the feeling of someone sitting on my chest. I had a panic attack once and the panic attack was nothing like I had experienced before. And, yes, I had quite a bit of this on the first two doses of the 75mg.
If the valiumj works, go for it! I think taht we have so many things to deal with on this protocol that we do not need to make the journey harder than it needs to be. Dr Marshall has said that valiummis not addictive for people going on this treatment. I found that for em a lot of the 'anxiety' was just herxing and went really quickly with half a Benicar under my tongue.
Are you getting cold like symptoms? I have had my second round of really sore throatand loads of nasal congestion.
My kids are back at school now and I feel so much calmer. I love my children and after seven weeks were they certainly ready to head back to school. It is so nice just to have a routine back in to swing. I am glad to hear that you had a lovely time on your vacation!
Leanne
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MP 30/12/08 spent Xmas drugged out of my brain 4 pain. Fibromyalgia, neuropathy, MCS, food and med intolerances, 4 MVAs ?mild CFS,exertional asthma,migraines,moodiness, heart palps, pruritis,heavy muscles, MIA:
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alycia2
Member
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Posted: Thu Feb 5th, 2009 01:50 |
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hi leanne,
how many children do you have and how old are they? has it been like your summer vaction there? i remember how we were always ready for school to be out and then ready for it to begin again! i googled perth last night and it looks like such a beautiful place to live..the climate seems perfect. and the river..just a beautiful city..10,000 miles from here!
it's been a good day...my energy level was really good..i tend to over compensate on the good days..it just feels so wonderful to be up and around doing things i love to do. i have a ceramic studio in my home..i used to teach pottery classes. i had to quit a couple of years ago because of the th1...lately have been starting to go out in my studio and assess what needs to happen to get it functioning again. it's become a catch all for all the stuff no one knows what to do with!
as for sore throats..i haven't had sore throats but my nose seems to run all the time...i am constantly sniffing or blowing. i don't feel sick from it but have sure noticed it.
i am so tired tonight..feel it in my bones...will take my third dose of 75mino tomorrow..still seem to be less sensitive to light..i see my doc on the 11th..do you have a good doctor?
getting ready to watch a movie call "the proposition" 1880's australia..
hope you sleep well tonight..
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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giddygirl
Member
| Joined: | Wed Dec 31st, 2008 |
| Location: | Perth, Canada |
| Posts: | 65 |
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Posted: Thu Feb 5th, 2009 02:36 |
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Hi Alycia
Thanks for taking the time to Google Peth! It is a gorgeous city and I feel glad to live here. Our climate is very similar to San Diego. The university that Dr Marshall worked at is just down the road from here, and now he lives over near you!
My kids are 7, 5 and 2. Still little and gorgeous. I am very glad to have them. I have a boy James, 7, then Caitie 5, then Mikie (Michael) 2. And that's enough! I don't have another pregnancy in me.
Wow! You have your very own ceramic studio! I really admire people who are so crafty. I find learning things really difficult and retaining information. I tend to have a hard time 'getting it'. I am hoping that MP will remove a lot of that fog and give me the confidence to try new things. My self esteem has taken a battering over the years in the work place where I would read information and not be able to take it in, or read information and not be able to recall it when needed. I felt like I was somehow wrong becasue I did not realise that I had a very real infection that was affecting me.
I am so grateful that there's a cure!
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MP 30/12/08 spent Xmas drugged out of my brain 4 pain. Fibromyalgia, neuropathy, MCS, food and med intolerances, 4 MVAs ?mild CFS,exertional asthma,migraines,moodiness, heart palps, pruritis,heavy muscles, MIA:
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alycia2
Member
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Posted: Thu Feb 5th, 2009 03:09 |
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hi leanne,
i know what you mean about brain fog..i am so grateful to have found the mp..sometimes i feel like it found me.
i was really ill from 1999 to 2002 and then started getting stronger. not well but working and doing my life. i had weird things happen to me...bladder spasms that put me in the hospital...with a biopsy looking for cancer...bronchitis that also was a trip to the er...depression..but somehow..i was able to keep going..then in 2007, i just started getting sicker and sicker..the pain was incredible..and everything just kept getting worse...seemed like every week there was a new issue..we have our own business..my husband is a landscape architect and i do the books for the business. it got so bad this summer that i couldn't be at my computer for more than a few minutes.
.i got so behind and i made so many mistakes..i felt so worthless. i hated it when my husband or anyone would ask me how i was..and yet at the same time, i needed help so badly...it took him a long time to realize that i was really in trouble..when i finally told him what a mess everything was in..he started helping me..i was amazed and shocked at how screwed up things were and he was to...but i am back to work now and am coping better..he is still helping me some but i feel a lot more confident in what i'm doing..my mind is more organized and i have greater stamina. i hope that for you, for us all..
with three little ones, you are a very busy woman. are you married? i hope you are getting good support. it's wonderful that you have found the mp. before you know it, you will be feeling so much better and then your energy level will be where it needs to be so you can enjoy all the precious moments with your children. it's so hard to keep up when you're not well...
alycia
p.s. the movie is awful..full of violence..i've moved to another room!
a.
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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alycia2
Member
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Posted: Sat Feb 7th, 2009 15:52 |
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hi leanne,
i emailed you a couple of times on your private email...maybe not getting through...i am on my 4th dose of mino 75mg. and yesterday was really a rough one..lots of heavy heart pounding..beating really fast and i was so tired..by afternoon..this is the second day, i just had to lay down and pretty much stayed there the rest of the day. i used to feel bad the first day of antib. but seems to be changing..are you starting to feel better now? i think you are a week ahead of me for dose amount. i won't go to 100mg until the 13th..get to see my dr. on the 11th and looking forward to it.
hope you are doing ok.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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warrior
Member
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Posted: Thu Oct 7th, 2010 16:16 |
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Alycia2,
How are you doing now? Have you overcome the anxiety? pls advise how you were able to handle the anxiety due to IP. Increasing benicar helps but at the same time stimulates the immune system resulting in more Nuro IP and anxiety, I am afraid of taking more and more benicar hence, I am stopping the MP. Pls give me your anxiety experience to learn from.
Best.
Warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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alycia2
Member
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Posted: Sat Oct 9th, 2010 03:00 |
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Dear Warrior~
I am going very slow. I haven't been able to take zith..I am currenty taking 20mg q6 of benicar and I take 100mg of Mino and am on 37.5mg of Clinda, EOD. When I have breakthrough symptoms such as anxiety, pain in body, low energy, fatigue..chills, hot and cold flashes or neck pain, I use small doses of Tramadol 50mg and 1 to 2mg of Valium-the name brand Val. with the heart shape in the center. Two mg. tabs.
I have gone back to work and am able to work long days. I am still working part time and not in the profession that I am trained for, at least not formally, but I am able to perform adequately. I am learning a new computer system, in an environment that is not familiar to me..with a population I don't know much about..and products..so I am learning all day long and most of the time am able to do it..like mentioned before, I do have to palliate some to get through it but not even every day now. Some days are better than others..and sometimes it will be several days in a row that I just don't feel well..but, I am still able to work. On my long days, I need to shower and go to bed as soon as I get home but am finding that even on some of those days, I am able to stay up and do things that I enjoy in the evenings..this is a huge change for me.
I have contemplated going off the MP many times...I too do not like to take a lot of Benicar. My blood work gets worse on heavy doses of Benicar and I worry that instead of protecting me, it's harming me. Producing too much of a reaction in my body... I have always been sensitive to meds and don't see why it would be any different with Benicar. Since lowering my dosage, I have had increased energy, better blood work, and less pain in my body..and all the other symptoms that go along with having Lymes.
I stopped posting on Curemy a long time ago. I became very frustrated with the kinds of answers and communications I was receiving at the time..from moderators and Trevor. I started to really tank. I was having a lot of issues..I had my doctor but at that time,
the MP cohort study was closed so curemy was the only form of support and education, really, a place to talk about my experience..I was very lonely back then after being ill on the couch or in bed for many months prior to starting the MP. But I also had a lot of questions I guess..or maybe concerns is more the right word..I kept and continue to try to believe in this process. There are def. reasons to doubt it..I don't believe statistically, it has really healed that many..I have no idea how many it has truly helped..but I know that there are many that have not been able to tolerate it, that is has harmed . But, I have to look at my life and say, I am better than I was..now, is this due to the MP; I don't know for sure. Maybe my body is fianlly catching up or maybe I am through with menopause..maybe I have killed a significant number of bacteria and I am better able to function. I do not know..
I worry about all this talk about stage five..the terrifying E-NATE immune system...boy now you've had it!!! Kick me in the butt whoppin set back..where one becomes as sick as they origianally were or worse...that troubles me..scares me. I also have concerns about being able to get off benicar and the abx. I've heard from former MPers that getting off the drugs are very difficult..I think there's someone not quite right about not being able to take supplements..our food system in the world now is so depleted..I think we need some form of additional nutrition but I am adhering to the protocol.
I don't like how the MP has changed. It seemed so stream lined when I first found it..was kind of a shock to find out it there are a lot of problems with it and people react differently to the drugs...and it takes much much longer to recover than what was once put out there..
I don't like all the fighting that has gone on..I don't like that people get banned for being upset and asking questions..even when they are contrary..I don't think they should be banned..
I don't like that untrained people are telling how to take medication. Arguing with me about my approach..I felt like the site had turned into a swarm of stinging bees..so I left the forum and found help outside of the MP site and curemy. I believe this can be a dangerous protocol and I am afraind of it and often wish I'd never started..but the alternative was not good either..I pray that I am doing the right thing, that I am not hurting my body, that I will continue to imrpove, that I won't have some kind of out of control stage 5 reaction and become bedridden again..I also wonder what happened to stage 4.
I wonder too why if this is such an amazing medical miracle more established physicians haven't heard of it and began to adopt it..where is that? Just keep plugging away..do my life at least..having some successes but would never have made if I had only the curemy site for answers.
So..I hope I have answered your questions..I will not post again on this site..I wish you good luck and hope you can find your way..I feel like we are all kind of like the blind leading the blind..I have a support team that I work with so at least I have knowledegable support..people who are kind and care about me..who answer my questions within a very short period of time and who don't look at me as a number but as a unique real person with a life..they care for me..and I have a great doctor that's works with my caregivers. It has made the difference for me...If you want more information on the people I am working with you can private message me and I will send the info..
Good luck Warrior.
Alycia2
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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