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Joyful
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Posted: Tue Mar 16th, 2010 05:47 |
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Hi Amy. 
If you want to correspond with Pamela directly, I recommend using the private mail (PM) feature of the forums. (You can use this link to send a PM to Pamela: http://www.curemyth1.org/pm.php?send_to=PamelaE)
How are you doing yourself? 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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danandamy77
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| Location: | Naples, Florida USA |
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Posted: Tue Mar 16th, 2010 14:43 |
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Hi! Thanks for that. I will do that. I am doing pretty good. About a week I think into it now. I guess I'm just not sure whats IP or whats being sick lol. So far my headache has completely gone. I had a nice little window of hope last night as well where I just felt like my old self again, laughing and joking around with my husband! It was my anniversary incidentally. Previously my nerves were just so jangled I really wasn't very social at all. A little thing I'm worried about today is my skin is itching! Before I ever got the tick bite actually I had this one place on my hand that just itched like the dickens for no apparent reason. Well now its itching plus up my left arm and I just don't know what to thnk about that!. No hives or anything just itchy  . Well I'm hoping since I just got this recently that I can get over it fast! I was literally very healthy in my estimation just three months ago! Sure would love to get back there asap!
Amy
PS Baby seems to be doing quite well now . Interestingly Dr Jones didn't feel there was even seriological evidence to support that she even had lyme. Thank God!!
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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danandamy77
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Posted: Tue Mar 16th, 2010 15:05 |
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MP meds: Benicar 4x a day, synthroid 137mcg 1x day
Non-MP palliative med use: have used 1/2 xanax twice this past week for nerves and "neuro stuff"?
Natural light exposure: AS LITTLE AS POSSIBLE....makes me feel awful. I use Noirs ...well I don't go outside except at dark but sometimes wear them inside as well. I noticed last night though I was getting better with watching tv and computer without them. A family member also pointed out the overhead lights weren't bothering me. Kinda wild after only a week as previously it had bothered me! Also dark in house blinds etc.
Symptoms:
Head swimming feeling- 3 (was a 9 yesterday morning?)
Brain fog - 3
Itching hand and left arm?- 6
right middle finger arthralgia- 2
nausea-3
Questions: All tolerable except the skin itching is weirding me out. I'm wondering if I have parasites proliferating under my skin or something?
Comments-I really should have posted a week ago as I had a headache that was a 9 now gone totally! Also had a nice night last night laughing again with hubby and just enjoying myself watching tv, being social. I felt almost 100% normal. Is that a little crazy b/c I haven't been this for too long ...only a week lol!! But then again I only got bit by the tick 3 mo ago so I dunno. I'm hopeful....course then there is the mino to start eeek.
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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Joyful
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Posted: Wed Mar 17th, 2010 06:11 |
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Hi again, Amy.
It must be a real relief to know your baby
is not going to need lyme treatment.
For the record, here is your current signature line:
"Lyme, Babesia, Hypothyroidism Ph1Mar10 "
There is a page here with tips on posting progress reports.
And tips on creating/updating your signature line.
We are glad you are here.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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danandamy77
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Posted: Wed Mar 17th, 2010 07:10 |
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| Yes it is a relief . Thank you!
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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danandamy77
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Posted: Thu Mar 18th, 2010 20:09 |
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| I guess I'm just having a weak moment here or something. The last two days have been sort of relentless feeling bad. I've tried doing the every 4 hrs Benicar and it helps a bit. Seems like anxiety level is high and everything is plucking my nerves. I keep thinking you know am I getting worse or something? I only just got sick so i don't even know that much about "herxing" or what have you. Seems like today my face has been flushing a bit as well. I don't even know exactly what I'm asking here. I feel like this is my only hope for a cure but I'm scared at the same time as this illness is very hard to cope with. Also, I'm wondering when I should start mino? How am I supposed to feel or what have you to be ok to start? Right now I'm a mess !.......good news is no heart racing ....been extra careful about the light Last edited on Thu Mar 18th, 2010 20:09 by danandamy77
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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danandamy77
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Posted: Thu Mar 18th, 2010 21:40 |
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| ....well now the anxiety is better yay...wow this is a bit of a roller coaster at the moment mama mia! I'm just so glad this is even an option though as I wasn't very excited about pic line antibiotics for the rest of my life.
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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Knochen
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Posted: Fri Mar 19th, 2010 00:14 |
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Glad the anxiety has backed off. Yes, you are probably still getting some hormonal fluctuation, so sticking with the benicar until things are at least somewhat stable is the best plan. Benicar alone is helping you, so no need to rush on the mino until you are ready for it.
As you can see, you may be out of sorts some of the time (for certain values of "some", as the engineers put it ). You need to be sure your life is set up to weather some bad days, especially if the mino gives you a herx that puts you back on your heels for a few days at a time. Have enough food in the house, have your dark areas to retreat to, have things to occupy you at various mental levels. It can be frustrating to try to read Schopenhauer when an Archie comic book is about all your brain can handle. The big thing with the MP is TIME. It takes a long time and there's nothing you can do to hurry it. You can do things to make it longer, like not lowering your D levels through poor eating habits, but there's not much you can do to speed the process. Boredom and frustration are pretty easy to fall into, so take precautions.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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danandamy77
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Posted: Fri Mar 19th, 2010 04:42 |
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Thanks for that . If I could just see the end result that alone would be motivation enough to endure. I can see other peoples results but then you read the odd negative thing...usually by sick people who haven't even tried it?? Still trying to figure that one out. Now I'm no engineer here (scratches head  ) but you know I'm thinkin why not ask the healthy people what they did?? hhmm Anyhoo, if I may ask another question. I've noticed my brain starts working much better at nightfall and I feel much better. Now I thought I had my house pretty well dimmed with shades etc. But could it really be that the light through the edges of the drapes etc has such a big effect that my brain would literally resume function after nightfall lol?!! I was thinking about maybe entirely blackig out the windows or something with poster board. Just wondering! Thanks for your advice and time.
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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Chris
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Posted: Fri Mar 19th, 2010 05:19 |
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Yes, light seeping around blinds can cause trouble. If they aren't the blackout type of shades, they aren't good enough. I had to be sure that the room was dark enough that I'd need a bit of lighting turned on to read. Otherwise there'd be too much UV in the mix.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Cynthia Schnitz
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Posted: Fri Mar 19th, 2010 05:54 |
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| Yes, poster board, black trash bags, aluminum foil, and maybe a bit of good quality masking tape to hold it up. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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Sallie Q
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Posted: Fri Mar 19th, 2010 08:47 |
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g'day Amy
not wishing to depress you, but I find that when I feel 'better' around nightfall, it indicates that 'worse' is depression rather than illness or fatigue.
as Knochen says "Boredom.........take precautions"
this link may help that and/or depression
http://mp-lifestyles.org/forum1/21-2.html
http://mp-lifestyles.org/forum1/40-15.html
and find more lifestyle threads here http://mp-lifestyles.org/forum1/
have fun
Sallie
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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danandamy77
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Posted: Sat Mar 20th, 2010 00:22 |
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Thanks for that all! I went with the black trash bags . Feel much better! G'day to you too btw down under . My husband is from New Zealand (although his accent is sadly now fading ...sniff sniff). I have a little dream to go visit when I am better .
Cheers mates,
Amy
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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eClaire
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Posted: Sat Mar 20th, 2010 06:28 |
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Also, this early on, unless your organs demand it, q4h Benicar may be a little too much for you, turning on your immune system too much. So if your doctor is not concerned about your organs, you might want to try q6h and see if that is actually better. Once you are handling q6h, you could increase to q4h; once q4h is handled, try dropping back to q6h and then adding abx. That way, you have wiggle room if you need to increase Benicar to manage your IP.
If you haven't had total black out, the q4h might have been helping with the extra neuro IP, but with the trash bags up on the window, you might do better with less.
If you decide to try this, since you are currently at q4h, you might find that you would have to try q5h for a while before you are able to reduce the Benicar to q6h.
Also, I've always found that eating 1/2 an apple with the skin on does wonders for slowing intolerable IP (somewhere on the site it is recommended that we not eat more an an apple a day). At least that is a tasty way to slow the immune system some. Doesn't work for all, but it is my best palliative.
Hope this helps, Claire
Last edited on Sat Mar 20th, 2010 06:29 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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danandamy77
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Posted: Sun Mar 21st, 2010 01:16 |
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Well I spent last night up most of the night with anxiety (I guess thats what it was!) so bad I thought I was going to die or something. It was TERRIBLE. I think partially my fault as I had a few too many lights on but my heart wasn't racing and so I thought it was fine. Kinda snuck up on me while I was sleeping. I took every 4h Benicar plus sublingual and a Xanax. Finally went back to sleep but have felt totaly on edge most of the day and sitting in utter darkness in my room totally freaked out about light now with two pairs of Noirs on to type this! If I just knew for certain in my mind what is going on I think I would be ok. I keep thinking maybe I should go do a bunch of antibiotics to get my bacterial load down and then retry the MP at that time. Life sucks at the moment .
PS...eClaire I tried the apple thing as well!! helped thx!
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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danandamy77
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Posted: Sun Mar 21st, 2010 01:59 |
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| Just wondering if anyone else gets these facial hot flushes . I'm not in menopause so don't think thats it. Freaks me out. I don't get a fever just face flushes and gets hot.
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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Carole
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Posted: Sun Mar 21st, 2010 03:07 |
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Hello, Amy! Your body is undergoing quite a transformation, even in this short period of time; so the anxiety and flushes are not unusual. As a matter of fact, I still have flushes, especially if I oversleep and run beyond the normal time for my morning Benicar.
Have you seen this diagram? http://autoimmunityresearch.org/hormones.pdf
or this? http://autoimmunityresearch.org/cycle_diagram.pdf
It is amazing how our bodies will be affected by hormonal imbalances. The recovery process takes patience and perseverance, so please don't be discouraged at the onset.
Rather than starting more new threads, may I suggest staying in one, like Amy J's . . . ? This will help to keep your questions and answers in a more organized fashion for everyone to follow.
Thanks, Amy, for providing information regarding your progress. You and your posts are very important to us! Best to you! . . . Carole
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Carole's Story
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danandamy77
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Posted: Sun Mar 21st, 2010 06:32 |
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Thanks for that . I just feel like I'm going crazy here or something and its really scaring me. Sorry about all the threads. Brain not working right at the mo .
Amy
...can hormones make you feel crazy??
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Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
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eClaire
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Posted: Sun Mar 21st, 2010 09:35 |
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Your brain not working right is probably IP. People sometimes increase their meds when they are having emotional and mental IP without realizing it. So this post is to remind you to take this IP seriously. Emotions can become tolerable just like other IP and you will need to work to manage that IP just like the physical IP.
Again I will suggest that unless you need to be taking Benicar q4h for your organs, q4h might be too much for you right now.
Claire
Last edited on Sun Mar 21st, 2010 09:36 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Sallie Q
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Posted: Sun Mar 21st, 2010 10:06 |
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danandamy77 wrote: T...
...can hormones make you feel crazy?? You bet your blooming teenagers they can
Not everyone has such an uneven start to the program, but I nearly lost my job during the first 3 months of MP, in spite of being cautious and taking six weeks off work to settle in with the Benicar,
and I did go to Mino and one day I went to work when I should have stayed home if I had had any sense, trouble is my good sense was AWOL
thankfully I am past needing to cope with the monthly hormone cycle on top of the spirals set going by the meds. Old age certainly has a lot to recommend it ;-)
particularly as we here expect to avoid degenerative illness!
PS I had hot flashes for over 20 years, still get them occasionally in phase3, but nowhere near as bad as a few years ago. Had near a year's holiday from hot after a little while on MP
PPS all kinds of crazy can come and go, it takes practise to go with the flow
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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