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Aussie Barb
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Posted: Thu Sep 28th, 2006 03:05 |
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Jeannine
Thank you for your report..
40% NoIRs are the next after 10%, and when you go out, you might like to take all 3 levels of NoIR in case of changing conditions.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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hrts4me
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Posted: Thu Sep 28th, 2006 22:28 |
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Hi Jeannine,
I remember speaking with you via pm, quite sometime ago when you had questions about Bipolar Disorder. I have read through the last month of your reports, and your sig. line on your meds. I see you are on a very low dose (10 mgs) of Prozac.
You have mentioned the following:
Jeaninne, "Oh, I have experienced some hypomania which it has been comtempated in the recent past if I might be bipolar....but it also could be to that I restarted prozac recently...."
and, "Mood Irritable ....blah.... not depressed but not at ease....friend says I have frequent mood swings..."
and, "This past weekend had a reaction of irritability"
and, "As far as my depression it last only briefly (wow am I glad to say that siince coming from being suicidal only months ago with major anxiety"
and, "Weird dreams last night and restless sleep. "
and, "SORRY NO TALKIE TALK>>>been SLEEPY SLEEPING"
I would like to point you to a website that has a lot of good information on all of the various types of BP disorder. You will also find a "mood chart" there.
Janet made a very good suggestion in one of her posts above about making more frequent posts, and this would be a good idea. I think the daily mood chart you can download from the following website would be a good tool for you and your physicians, too. There are samples on how to complete such.
http://www.healthyplace.com/communities/bipolar/mood_chart.asp
There is very good info on this site about hypomania, mood swings, clanging, rhythmic phrases, or rhyming words (see last quote above), depression in the form of lack of motivation and excessive sleep, and hypo-mania and mania in regards to irritability, and restless sleep. Since depression has gotten so bad in the past, as to include suicidal ideation, I think, just from a layperson's perspective, and a BP-I patient, that a mood chart would be a great idea. You can see if there are early warning signs that are so very important in diagnosing and tracking mood disorders. These are also found on that website.
You may want to keep an eye on the Prozac, as it can greatly affect BP disorders, in that many will find that what treats unipolar depression well, is not the best agent in singular tx for bipolar patients. It <SSRI's like Prozac> can lead to cycling between mania and depression, or hypomania, and mania, due to the inhibition of the reuptake of seratonin. Some patients with a dx of Lyme and/or Morgellon's do have an onset of mood disorder. Psychiatric manifestations in TH 1 disease have been noted.
Most BP patients experiencing swings (from hypomania or mania to depression) do better on a mood stabilizer, some additionally take an antidepressant with a mood stabilizer if their disorder is more depressive in nature. However, very few use unipolar therapy as it is a trigger. It can cause mania, hypermania, and rapid cycling.
Although your dose is very low, it may affect you. I thought I should mention this, too, in case the dosage may in the future be raised, and you would have some tools to help you daily to chart your reaction. It is difficult sometimes to rely on one's own perception, so do depend on your friend's input as a guage. Often BP patients cannot rely on their own perceptions.
I hope you don't think I am being a butt-inski....but just felt the need to point you toward that site.
Best wishes,
Hrts
Last edited on Thu Sep 28th, 2006 22:29 by hrts4me
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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Jeannine R.N.
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Posted: Sat Oct 21st, 2006 13:10 |
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benicar 40mg every 6 hours, 50mg of mino
I am having IBS...I am having diarrhea after each meal and then some. Gut feels irritated.
How long have others reported this herx lasting? I normally dont have IBS but have had episodes in the past.
Any advice on what to do or take other than the normal control herx protocol?
Thanks, Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Aussie Barb
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Posted: Sat Oct 21st, 2006 17:12 |
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Jeannine
I have moved your post to your progress report for continuity..
I am wondering if you have sent for your Phase two questionnaire.. or have discussed Phase Two with your Dr.
Needing to move on to adding a 2nd antibiotic can cause an increase in symptoms..
re symptoms: The first steps are as you said, - to adjust your MP meds.. and see probiotics?
and then also: If you need temporary relief of your symptoms contact your doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL are okay to take to relieve intolerable symptoms. some find that codeine meds are helpful. Please ask your Dr.
We encourage you to post in your report as regularly as you can to have the best advantage in doing your MP successfully..
We encourage you to send an email for the Phase 2 Questionnaire to fill and return. Where can I find phase two and three?
and you will be given feedback and in preparation for your Dr visit:
We then encourage you to begin a new progress report in the Phase 2 forum to discuss recommendations re the new meds and dosing. 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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Reenie
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Posted: Sat Oct 21st, 2006 18:58 |
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Jeannine,
I'm sure this is not what you'd like to hear but...
I've had IBS sxs for well over a year on the MP as herx. It took a long time for this symptom to go away, but I am happy to report it's been gone now for some time. I rarely get a slight twinge of IBS now and only when I have heavy herx.
I continue to take a good probiotic every morning, well away from my abx, which I take in the evenings on dosing days.
BTW, on many occasion I've had to use the severity of my IBS sxs to dictate how quickly or slowly I could ramp the MP meds, even if I had no other herx sxs.
I hope that helps. 
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Jeannine R.N.
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Posted: Sat Oct 21st, 2006 19:40 |
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Beni 40 q 6, 50 mino qod
Hi All,
I have been on a MP break already...I had depression, pain and flu like symptoms that were getting out of hand. I did NOT try to control them with beni and mino or other measures as a choice. I did go off the mino for two weeks. It was incredible what I learned. The lesson was IT WAS ALL A HERX!!!!!!!!! Even the depression...that one is YUCKY..but like I thought...it is a herx... Hurray! This will be in valuable to me as I herx on the MP...Not that I didnt believe you.. ...I had to find out for myself...Now I know!
I have started back on the mino and am at 50mg of mino...My new herx is IBS...FUN FUN...NOT!...my bowel are usually one thing I can count on...though I have had a little trouble from them in the past.
Hrts...Thanks for the info on Bipolar...I am keeping tabs on it! Thanks for your reply.
Reenie....It is good to hear or not hear that you had IBS as a herx. I will have to learn how to manage it...Thanks for letting me know that this was a herx for you as well...
Aussie Barb...thanks for the info
No other herx to report now expect...some fatigue and sleepy 48 hours after mino.
So now is the time to learn how to control the herx. I will work up to 75mg mino then fill out the questionnaire.
Oh To ALL THE NEWBIES...THE HERX CAN SNEAK UP ON YOU!!!!
I am also keeping a chart that I printed here to keep up with herxing..I really like the chart...Whoever made it did a wonderful job! I also like the tip I read that Aussie Barb gave about the ABCs of the MP in her sig line...easy to find things! I had forgotten about this....I used the tip and gave it to another new MPer...
Just to get this out there...I wish we could get Dr. Blaney to comment more on the website...about Signs and symptoms etc.,... what he observes with his MP patients ...It would be nice if he could have his own blog. (I dont know if he would do this)...I know that he has lots of patients on the MP. His knowledge would be an asset to all the MPers out there who have doctors who are learning the MP....Just a thought ..I have been thinking....
We may endure for a night but joy come in the morning....GOD BLESS all the MPers!
Jeannine
Last edited on Sat Oct 21st, 2006 19:45 by Jeannine R.N.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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zip22045
Member
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Posted: Tue Nov 7th, 2006 14:31 |
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Jeannine,
Aussie Barb sent met the reply shown below indicating that I may be able to contact you about your MP progress. From your log it sounds like you are making good steps forward abet, sometimes difficult. I have started MP and have been taking benicar for 3 days . i'm about ready to start minocyclien. I'm having herxing from just the benicar but I guess, it's pretty mild compared to what will happen with the benicar. Based on that it probably is a good idea to start with a 25 or 50MG dose and see what happens...
Also, I am a Morgellons sufferer but haven’t seen any posts by people with Morgellons particularly, on their experience with MP. If you know of any or if you have Morgellons please let me know. Eternally grateful for any info you can give me.
Fondly
ZIP see my report here Zip
FromAussie Barb
Dr Marshall wrote above:
"From everything I have observed or read, Morgellons is yet another of the idiopathic Th1 diseases; which means it will almost certainly respond to the MP.
Many, many, of the symptoms overlap with what we have seen in other syndromes - for example, you will find many posts here reporting the crawling feeling under their skin (from folks whose skin is not producing the Morgellons fibres)."
This Member is responding to MP. You may wish to read the progress report and or make contact by private message.
all best, Barb ...
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May 06 Morgallonsp; 11/7/06 no-D low carbs, 25D=23.1,125D=23.1; P1 11/4/06
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Jeannine R.N.
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Posted: Wed Nov 22nd, 2006 01:18 |
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Benicar 40 mg q six hours,75 mg of mino First Dose last night Keeping Journal each day using the MP Herx chart...LOVE it!
I had to back down due to IBS with 10 BM a day at it's peak. The herx lasted two weeks...NO fun couldnt leave the house it was that bad...never had IBS before...only time was when I took Zoloft and it stopped when I discontinued it.. I started taking enzymatic therapy pearls one to three a day and Culturelle which REALLY REALLY helped!!! Thanks to that special person for recommending it...I LOVE Culturelle!
So I backed down a little and thanks to the encouragement of a wonderful MP she told me time to get into gear...So here I am at the 75 mg of mino....I can totally tell a that I took my first dose of 75mg
- FATIGUE/SLEEP I sleep for about 12 hours a day... I am not so out of it with sleep sleep sleep like i was..but the fatigue has increased...especially after this dose...Fatigue makes me not want to do anything but deep inside I do...does this make sense? Body says no but spirit says I want to..so I guess that means depression is tamed right now with prozac 20mg..
- MOOD . Mood is good. Noted it to be worse with PMS. I get irritable and did have a bit of anxiety the other day. It has been nice as I have been the most laid back I have ever been...
- SKIN Crawlies come and go...skin burning comes and goes.No sores ....bites every once in awhile..Notice it as a herx ..I also noted that I get painful cyst like acne/nodules behind my ears like crazy..they come and go...just an observation...the fine acne on my chest cleared up when I laxed off antibiotics a few weeks ago due to learning to manage meds.I also have noted that my chronic skin crack in my Left nostril has been gone for weeks now...
- PAIN Pain has been more...stiffness and tenderness/achey with movement..
- EXTRA LOVE MY NEW Style of NOIRS!! The wrap arounds...I clean mine with soap and warm water and that works great!
Have a Happy Thanksgiving!!!
Hugs, JeannineLast edited on Wed Nov 22nd, 2006 01:25 by Jeannine R.N.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Jeannine R.N.
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Posted: Thu Dec 7th, 2006 18:15 |
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100mg of mino (day 1), Benicar 40mg every 6hrs, Prozac 20mg daily
The last week or two I have been feeling a real difference...It kind of sneaks up on you...I feel less tired and am not irritable...I feel comfortable with myself and even have motivation to do things... which even on antidepressants this level of mental stability was never achieved...(I wish I had know about the MP ten years ago when my symptoms started as depression and panic attacks and sleeping a lot..but I am thankful it is here now...as I learned a lot about life being ill)... I can read and not have to re-read to comprehend. I feel my old self coming back and it has only been six months on phase 1.
I finally had a reaction out in the sun...which I slept for three days afterward. I was covered up but forgot my K creme and I was out in the car all day...The day before I had exposure but was covered up with K creme...the combination of both days took its toll. I couldn 't wait to get in my cave but I enjoyed my trip to see old college friends!
I will start phase ll after Christmas as I will be traveling to the Gulf Coast for Christmas...and I am sure phase ll will back a puch..
A recap of the first six months....Flu like feeling.....Sleeping a lot...able to fall asleep in front of the TV with activity around too..never able to do that before..I still sleep 12 hours a day with occasional naps...but not sleeping like I was before and more alert....My fatigue is reduced which on some days taking a shower was a big feat...My shower chair was a great help! I had a IBS herx that lasted two weeks...It was hard just to make it to church without worrying about having to RUSH to the bathroom...Itching was all over but was tolerable..I just thought about the toxins coming OUT! The crawling on the skin would come and go as well as the acne...I find that I have acne that is painful behind my ears...Oh my ears wow they seems to be clearing of L forms..I have had tinnitus and fullness in the ears with some stabbing pains but it comes and goes and doesn't last long. Pain has been there in the L knee and L foot (lateral) as well as stiffness in lower back and between shoulder blades...it comes and goes...stiffness is always there but it varies...There was only a day or two that I took Tylenol for pain....PMS is there but tolerable with tylenol for the first day...My cramping did get worse when starting the MP sooo I know some IR is going on there...but it is tolerable...Muscle spasms come and go but did increase when I started the MP but again never intolerable...I eye floaters are still there but the have changed almost to the point where they are gone.... I have had a headache for a day or two which has been more frequent since starting the MP...but again tolerable...
OH yeah my moodiness and brain fog has even lessened do I dare say it is going! WOW I can taste a "NORMAL" life returning....I know it is early and I still have a way to go but I am ready!!!
I am still at home mostly but am able to get out whenever...I still sleep til noon but feel more refreshed when waking up...I had no idea I would be seeing results this soon!
I am now thinking about all the things I have always wanted to do and am planning for the future! I am even finding myself wanting children when I have never wanted them due to not being able to even fathom taking care of them because I was so tired and sick I couldnt take care of myself ...well I could but it was a struggle and I needed lots of support...This disease has even affected romantic relationships to the point of not being able to do anything and enjoy it without focusing on the disease. However, I see this as a thing of the past...as I am recovering.
I also saw the LAX panel discussion and Dr. Blaneys presentation WOW WOW...THAT WAS amazing! Freddie, Alyane,Carol, Ival and the microbiologist with lyme THANK you for sharing! That alone was a great Christmas present! I plan on sharing your story with a lot of friends,family and MDs. Dr. Blaney you rock and I appreciate your enthusiasm...You are a great speaker!!! You all really put the information in a personal, easy to understand, and attention grabbing format! I recommed the DVDs to everyone!
Thank you staff and Dr. Marshall!! Merry Christmas and a Happy New Year! I am getting my life back!!!
We may endure for a night but JOY comes in the morning...
Jeannine
PS...My mom will be doing the MP....not sure when but we are getting her ready by avoiding D...and sunlight....and my dad is seeing the light too. They are both TH1 but still highly functional...My dad just thinks it is old age ..but he has pain fatigue and low testosterone as well as high cholesterol etc..He has an old injury of his rotator cuff which the same day I saw alyane on the LAX DVDs talked about resolving on the MP..right before I saw this I had just finished telling my dad that is just another one of his TH1 illness..He has had it xrayed and it showed inflammation..I told him that before the Xray..so I think he is getting the picture...He even watched Dr. Blaney on the LAX DVDs...which I think opened his mind up a lot...He keeps saying it is all heredity...yes it is ...he inherited the bacteria! Look at this http://www.anapsid.org/lyme/bach.html
If the sphirochete is in sperm then hello so are CWD bacteria..I really liked the family aggregation lecture on the Chicago DVDs! Makes the world of sense!
February 2007:
Went down to 50 mg of mino for a fews days to get two doctors appointments out of the way...Didnt sleep as much, brain was clearer..more energy...so that was nice way to get ready for mod phase ll...I was also thinking the other night...I can sit on the bed and my back doesnt not ache like it did pre MP....
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Dr Trevor Marshall
Research Team
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Posted: Thu Dec 7th, 2006 18:36 |
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Jeannine said "I learned a lot about life being ill"
It was a hard lesson, but it will make the rest of your life so much more enjoyable
Folk commonly confuse spirochetes with Borrelia. All that they found in the PCR study you linked to was DNA. In fact, it would have been RNA, since it was dicovered by PCR techniques. And that RNA would more likely have come from L-forms than spirochetes. FYI, intracellular Mycobacterium tuberculosis bacteria have also been found in semen. The basic concept the story at your link is trying to convey is correct, but their understanding of pathogenic science is minimal, to say the least
A merry Christmas and a happy New Year!
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Jeannine R.N.
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Posted: Tue Jan 30th, 2007 03:37 |
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Beni 40q 6, mino 50 qod (restarted yesterday Jan 28) stayed on beni while on break
Thanks Trevor for the comment...Loved the DVDs!!!
I am back in the saddle again after a month break. My worst symptoms so far is the depression herx and sleeping like rip van winkle.......I got scared and didnt manage the herx ...it snuck up on me....so now is the time I better learn...so here goes...I was taking alternating 75mg of mino with 100mg of mino at the time...so I will take things slower, lay off the coffee, and listen to my body..so I guess I am learning LOL....I would love any suggestions or words of wisdom from anybody with depression herxs...
I have decided what my phase ll abx will be...so that is good. I will post that on phase ll when I get there.
I have seen a improvement so have my friends, family and doctor. I did herx some on benicar with moodies and sleeping irregular and 12 hours plus. Some 99.8 temps, sweats, flu like yuckiness.....and did have depression during menses with fatigue.
I did note increase itching today. Keeping Journal of symptoms..Wrote down a list of things to do from Website to do when herxing...I think another thing is that I need to post post post...which of course the RN in me says I CAN DO THIS BY MYSELF...HA HA H AHAHA funny....we just love to treat ourselves dont we...what am I thinking with lyme brain doing that....
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Aussie Barb
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Posted: Tue Jan 30th, 2007 04:36 |
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Thank You Jeannine
as well as this FAQ How can I control my anxiety and depression?
and Finding social support
When it is time to progress to adding another antibiotic the symptoms can also increase.
Please begin a new progress report and post in the Phase Two forum and discuss the Modified Phase Two because of your cardiac and brainfog symptoms - and the meds, doses etc to discuss with your Dr.. There is no necessity to go to 100mg mino before progressing. Dr Marshall recommends adding a 2nd antibiotic before 6 months.. thanks..
When you can, please fill the further required details into your signature line to help Staff and others reading and replying < see this link for details to include. Your details enable us to assist you. Thank You ..
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Jeannine R.N.
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Posted: Wed Jan 31st, 2007 01:16 |
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No mino day
FATIGUE/SLEEP Sleeping good. Had bad dream last night about a scorpion very vivid. Slept from 2am til 5pm with hour awake inbetween. Somewhat sleepy.. Tired today but had a busy day yesterday. Still could sleep more..however did wake up at 6am and wanted to get up but then sleepville hit again.
MOOD Mood is good. Mind mostly clear.
SKIN Noted very few crawlies about 1am...Some itchy skin.
PAIN No pain..Notable low normal back stiffness
EXTRA Sig line updated
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Aunt Diana
Member Advocate
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Posted: Wed Jan 31st, 2007 16:38 |
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Hi Jeannine,
I too have suffered from depression...I've had it off and on most of my life. Now, when I have a depressive episode I try to "blame it" on the protocol and realize that it will pass...and it always does.
They are not easy to go through but this website is a wonderful place to vent your feelings, and people will definitely come to your rescue here when you most need it. I think that is the most helpful advice anyone can give....when you need support come to this site. Try to stay focussed on improving and realizing that your brain is playing "tricks" on you, and that it will pass.
Also, talking to other Mpers helps.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Jeannine R.N.
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Posted: Thu Feb 1st, 2007 16:11 |
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Aunt Diana,
Thank so much for the replying. It means a lot. Depression is not fun neither is this illness. It makes me feel better that someone else experiences this even though I wouldnt wish it on anyone.
2/1/06 no mino today
Yesterday...sleepy sleepy sleepy......no motivation....Shins itching are a sure sign of herx......all tolerable...irritable
Today (no mino last night) feeling better...still sleepy but more with it than yesterday....Slept from 1am til 11am....no pain unusal pain noted..temp running 99.4....still irritable but less so....
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Jeannine R.N.
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Posted: Fri Feb 2nd, 2007 22:45 |
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1/2/07 mino last night
Went to bed at 4am slept til 12am..that is a record...felt better was able to get up and do things...had some energy..no pain noted...some itchy skin...I will be moving up to 75mg probably the next dose.
JJ
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Jeannine R.N.
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Posted: Tue Feb 6th, 2007 03:30 |
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Mino 25mg tonight..
FATIGUE/SLEEP Sleeping good. Slept 12 hours...Feel much more alert the last couple of days not so much like Rip Van Winkle
MOOD Mood is good. Mind mostly clear. A little bit of blah
SKIN Some brusing. Small wart on bottom of foot just disapeared ...interesting
PAIN No pain..
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Aussie Barb
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Posted: Tue Feb 6th, 2007 04:23 |
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Jeannine
You have listed in your signature line P1(8/06) << now going into the 7th month..
Don't wait until you feel well to go to move on because that may not happen on just Benicar and minocycline.
It is important not to stay in Phase One too long. We recommend adding a second antibiotic after 3 months or so on the MP.
We recommend that you please begin a new progress report and post in the Phase Two forum and discuss the Modified Phase Two because of your cardiac and brainfog symptoms - and the meds, doses etc to discuss with your Dr.. There is no necessity to go to 100mg mino before progressing. Dr Marshall recommends adding a 2nd antibiotic before 6 months.. thanks..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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