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juliemomof3
Member in Phase 2
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Posted: Tue Jan 22nd, 2008 22:18 |
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Benicar posts
Took mono at 1pm 1/22/08
Noted
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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juliemomof3
Member in Phase 2
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Posted: Wed Jan 23rd, 2008 17:59 |
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benicar 40mg/6hr, mono 25mg/2day, lexapro 10mg, armor 90 mg.
Staying out of lights, wear Noirs constantly.
Woke up to take benicar and finger joints were hurting.
Biggest symptom this morning is chest and throat. Feels like thyroid gland is swollen or something and cqn't quite clear my throat. Plus I have a cough. It's like there is something there to cough, tight chest, but dry cough. Back muscles aching. All tolerable. Might post later today.
Head is clearer though, emotionally quite good. Even though family going through stressful times.
thanks, julie
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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Meg Mangin R.N.
Former Team Member
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Posted: Wed Jan 23rd, 2008 18:36 |
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Thanks for letting us know you have started minocycline. Please review the information threads pinned to the top of this forum so you will be able to independently locate answers to frequently asked questions. See What should I know about Minocycline?
Please use our new reporting format. This provides a 'snapshot' of your current situation so we can provide an accurate response. It's important that you include all the basic information in your report so we don't have to ask for clarification.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
-List your ongoing non-MP meds in your signature line.
-In your next report, list the palliative non-MP meds you've taken for the week and the number of times you needed them. This gives us a better picture of current symptom severity.
-List routine measures to prevent natural light exposure (NoIRs, covered up, sunscreen, low lux home) in your signature line only.
-In your next report, describe your sun exposure for the week. (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday or housebound all week in low lux home) This provides a clue to the cause of any symptom increase and helps you correlate cause/effect.
-List and rate your symptoms on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe'). Indicate which, if any, are intolerable.
Keep in touch.........
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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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juliemomof3
Member in Phase 2
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Posted: Thu Jan 24th, 2008 14:37 |
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MP meds: benicar 40mg/4xday, 20mg in between 6 hr/dose, 25 mino/48hrs
Palliative meds: hydrocodone yesterday for severe pain, advil this morning for fever
Light exposure: extremely limited, 15 minutes 2xday covered
Symptoms: chest congestion - 6, sore throat - 6, headaches - 8, aching,painful muscles and joints - 9 wakes me up, fever 99.6 this a.m. Trouble sleeping 7 (4 hours), constipation - 4- reliief from diarrhea, gasey - 2, definitely mentally want to do something but no doing it - 8. Had a little trouble walking yesterday like not very coordinated - 2
None of this is very tolerable, but I know it is killing bugs,.
Comments:Even though fever hurts like crazy, I know bacteria is dying. I don't like taking hydrocodone, but after having so much pain for so long, it is a relief when the fever like symptoms hurt so badly. What is encouraging for me is throughout the over 10 years, I would hurt just like this - like I had a high, not low grade fever, but no fever. I would almost say that this might be the first fever I have had in so very long.
Plan: Going to take 2nd dose of 25 mino today. When woke up at 4 a.m.took extra 40 mg of benicar to offset pain.
Questions: Are you contagious when going through this.. Always thought person contatious if they have a fever. 
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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juliemomof3
Member in Phase 2
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Posted: Thu Jan 24th, 2008 17:26 |
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I forgot to mention 2 other symptoms:
tingling buzzing - 6
knife stabbing pain in left back - 8
Advil helped with fever already.
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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juliemomof3
Member in Phase 2
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Posted: Sat Jan 26th, 2008 17:52 |
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benicar 40, 4xday, monocycline/48 hours 25 mg
Chest congestion and soar throat went away and came back, swollen glands in neck, feel terrible. no fever all over body pain.
Woke up in middle of night with feet cramps twice, took 40 benicar, then heated up.
Plan: Push monocycline to every 72 hours maybe more
____________________
Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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Meg Mangin R.N.
Former Team Member
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Posted: Sat Jan 26th, 2008 19:34 |
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If symptoms are approaching intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (sun exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster.
If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every 3-4 hours will not work.
If intolerable symptom/s persist, increase oral 40mg Benicar to every three or fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose.
If increasing Benicar does not reduce intolerable symptoms enough, you may need to adjust your antibiotics. Review all options in My immune response/symptoms are too strong. What should I do? Try the options one at a time. Do not hesitate to use any of the med adjustments suitable to you.
As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Hang in there.....
____________________
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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juliemomof3
Member in Phase 2
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Posted: Wed Jan 30th, 2008 21:58 |
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MP meds: benicar 40 mg/6hr plus if needed, mono 25 mt/48 hr
Palliative meds:
Light exposure: Extremely limited, noirs
Symptoms: Yesterday is the first day not having a fever 12-14 hours after monocycline
buzzing - 8, woozy - 6, pain better today, weak - 8, cramping better today but last two days felt like body cramps, heart beats really fast when I get up to do something, but calms right down once I lay down again.
Eye pain has gotten better too, but hurs when I roll eyes around even closed - 4, headache - 4, dizzy - 3
Comments: Looking for new doc. Committed to MP because of HERX
Plan: Continue
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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juliemomof3
Member in Phase 2
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Posted: Wed Jan 30th, 2008 22:00 |
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Excuse my double post but brain fog is still really bad.
Chest cold like symptoms has been most prominent - 6-8, worst every other day without improvement.
Questions, is that where most bateria are?
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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Meg Mangin R.N.
Former Team Member
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Posted: Thu Jan 31st, 2008 06:24 |
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Your symptoms will tell you where the bacteria is located.
Have you tried increasing Benicar?
Are you taking anything for pain?
Are you resting?
Hang in there...............
____________________
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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juliemomof3
Member in Phase 2
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Posted: Fri Feb 1st, 2008 20:13 |
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I take benicar if symptoms are unbearable. I average 4- 40mg/day approximately.
I take hydrocodone - 1/2 tablet as needed. I try to not take this and haven't for a few days.
I am avoiding as much light as possible and rest all day long as doing anything makes me dizzy, feel uncoordinated and sick to stomach. Plus, when I would get up to do something, seemed to make my heart beat really fast.
Interestingly, staying out of the lights has made me much calmer. I can talk now and think a bit more clearly. I had to return something to a store and was in there for 15 minutes or so and noticed just how uncomfortable, irritable, brain wouldn't function, confused, etc. As upsetting as this is, it really shows me how lights effected my brain and emotional fuctions.
Took mino last night so don't feel as bad today. Lung congestion - 7, muscle pain -2, headache - 2, buzzing 6. Tomorrow will be worse. Day after seems to be the worst day for me.
Think we found a doctor in Fort Worth.
Thank you so much,
julie
Noted
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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juliemomof3
Member in Phase 2
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Posted: Sat Feb 9th, 2008 18:54 |
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benicar 40mg x 6 hr/day, mono 25mg/48 hours
minimum light
rest a lot
Update:
Thought I would start by saying what is better: leaky gut and diarhea is gone. When I eat something I don't bloat. Huge difference as I suffered from this for over a year.
Mood: So much calmer and happier. I know this now, that light sensitivity was making me agitated, motor mouth and inability to communicate with any focus. It feels like my tongue swells and thoughts overlap or get lost when I was in any sort of lights. On the rare occasion that I am on the phone on the way to somewhere outside, covered even with glasses, I don't communicate well, can't stay on subject, confused and must sound hyper, etc. I am not taking lexapro any longer - over two weeks and I am fine. I now can trace mental issues years back to light sensitivity.
Headache: 8- after taking monocycline, but goes to -0- after 24 hours or so.
Cough - 5 , 24 hours after monocycline
Dizzy: varies from 4 - 8 depending on when I take monocycline I think. Sometimes extremely bad. I am very careful with this.
Joint Pain: Again 4 - 8 depending on mono I think.
No fever
Fatigue: Very tired hours after monocycline and better 24 hours later or so.
Muscle, tendon and ligament pain and cramping: This can be most troubling, but tolerable. Feels like the reving of an engine over and over and over.
Neuropathy: Always there. But can go to a 8. Tingling like a Christmas tree on front of body (torso, chest and stomach) and inside legs, arms, and hands, feet, lips, nose. Hard to think about anything else when at an 8. Used to think tingling didn't hurt, but can honestly say that it is starting to hurt. Probably goes with the cramping of the skin, muscle and ligaments.
One half a Hydrododone helps all of these, but try not to take every day.
Still haven't found a doc that we can afford as insurance dropped me (not my family) last year.
Question: Will I loose the progress I have made if I have to stop MP for a little while? I don't want to. But, might have to for a month or two.
thank you for your response.
julie
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Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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Meg Mangin R.N.
Former Team Member
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Posted: Sun Feb 10th, 2008 00:40 |
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Your body has made considerable hormonal adjustments in the short time you've been on the MP. A break will likely cause you to have to make those adjustments again.
Some folks feel better when they stop antibiotic/s and some feel worse. If you have experimented with antibiotic dosing in the past, you have a better idea of how this will affect you.
Once you have reduced your vitamin D and allowed your immune system to recognize the pathogens with the Benicar blockade, it often, essentially, goes into "auto-pilot" mode and may keep on doing its job of killing pathogens even in the absence of antibiotics and Benicar.
Regular doses of antibiotic/s can be modulatory by reducing your immune response, bacterial killing and symptoms. As long as you are experiencing some symptoms of immunopathology, you are killing bacteria and making progress towards recovery.
Benicar provides a palliative anti-flammatory action that may be essential to maintain tolerable symptoms. Please see How to take a break from the Marshall Protocol?
If you have to stop all MP meds, you should be prepared for the possibility of continued, or even increased, symptoms. Ask your doctor for help if you need to palliate any intolerable symptoms while your immune system calms down.
Let us know how it goes.........
____________________
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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juliemomof3
Member in Phase 2
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Posted: Mon Feb 11th, 2008 17:38 |
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I have enough medication to continue benicar for a few weeks and minocycline for a additional month and a week or so.
Plan will be (if I don't find a doctor to support MP) to finish all medication until such time. After benicar runs out, I will continue pulse dosing of mino.
Question:
I haven't seen this on the site, but an interesting HERX I think. Every few days my left eye fogs up my sunglasses. It is as if heat is escaping my left eye. Also, the other night (night before taking mino or 35 hours after taking it) my eyes, especially my left felt like pebbles were in them. Very itchy, red and painful. Extremely sleepy, too. Morning after woke up with crusted eyes. Didn't have this again last night, but fogging glasses pretty continuous. Interesting, but tolerable.
When seeing a neurologist with extremely expensive test the summer before last, his dx finally was that I was having 24/7 migraines with no explanation. And he said that I was blind in my left eye. I went to eye doc as early in the morning as I could to be tested because at that time I even knew that as the day wore on (not knowing that lights were causing me problems) found I had 20/20 vision. The left eye seems to give me the most problems.
So is the fogging a sign that my eyes are healing. Sometimes it is both eyes. Please not that when this happens I am sitting still in a dark room.
My plan is to continue MP God willing.
Thanks,
julie
____________________
Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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Belinda
Former Team Member
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Posted: Tue Feb 12th, 2008 01:26 |
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To answer your question:
Some of our members experience times when heat seems to radiate from tissue with immunopathology. This could make enough of a temperature difference (behind the lenses next to your eye and on the other side of the lens) to generate condensation, which appears as fogging.
This would be due to the way NoIRs wrap around the face and fit closely, isolating facial heat behind the lenses. I know my glasses would fog up with sudden temperature change, such as going from outdoor Texas heat to indoor airconditioned cool. Usually pulling the glasses away from the face for a few seconds allows the fog to subside.
Eyes: see EYE INFLAMMATION and Th1 diseases Will the immunopathology cause increased eye inflammation? Adequate eye protection will be particularly important for anyone with eye inflammation.
We are very concerned that you are contemplating running out of meds. As Meg explained in an earlier post, " Benicar provides a palliative anti-flammatory action that may be essential to maintain tolerable symptoms. Please see How to take a break from the Marshall Protocol? If you have to stop all MP meds, you should be prepared for the possibility of continued, or even increased, symptoms."
You need to redouble your efforts, focusing on getting a physician who will manage your progress on the MP. If you wait until you run out of Benicar, you may not be functioning as well as you are now.
Belinda
Last edited on Tue Feb 12th, 2008 01:29 by Belinda
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juliemomof3
Member in Phase 2
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Posted: Tue Feb 12th, 2008 20:53 |
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I am truly in awe of MP.
There is no doubt that this is bugs as the condensation happens while sitting still in the house in the dark.
Thanks you for your response. Your links would not connect, but I will find them in other parts of this site.
Respectfully and thankfully,
julie
Moderator note: Links are working now...
____________________
Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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juliemomof3
Member in Phase 2
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Posted: Thu Feb 14th, 2008 19:14 |
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benicar 40 mg/6-8 hours, mono 25mg/48 hours
Would like to note that I haven't taken lexapro for 3 weeks and am doing great. Here is what I am finding out. Staying out of lights (all sun and bright lights) in making an amazing difference in my anxiety, ability to communicate and happiness. The way I know this is when I have to go into a store (groceries or church) there is this dramatic response that is only calmed down by laying in a dark room and possibly a nap. Though I can trace light being a factor since 1995 when I had my first ever migraine, the horrible pain went silent in 2000. I had a very challenging, demanding job where I wrote memos requesting something other than florescent lights. I knew they bothered me, but didn't know why. Then the migraines stopped, but I was driving to an edit session and suddenly didin't know where I was or why I was driving. That was the beginning of countless psychiatrist visits and drugs that never, ever helped me. I thought it was anxiety. Confusion set it and though there were months where I felt like my old self, eventually in 2003 I felt sick, physically and mentally (brain fog, sadness and anxiety, pain and all the other physical symptoms mentioned here on this site) all the time. It was lights. Cause - bacteria.
Now I know without a doubt, that it is inflammation in my eyes and perhaps my brain and all the other areas where bacteria has caused havic.
I am so thankful to this site for the knowledge and courage of those that have gone before us.
Plan: Commitment. Find doctor to continue MP with me
Thank you,
julie
Noted
____________________
Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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juliemomof3
Member in Phase 2
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Posted: Thu Feb 21st, 2008 01:19 |
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MP meds: benicar 40mg/4xday, 20mg in between 6 hr/dose, 25 mino/48hr
Palliative meds: 90 mg Armor/day, hydrocodone usually 1/2 tablet a day, Nyquil to sleep
Light exposure: extremely limited, 15 minutes 2xday covered daily. However, this weekend, due to daughters sport had to paint massive floor under florescent lights 3 hours saturday, 4 hours Sunday. Still recovering
Symptoms:
Nausia - 4 most days
chest pain - sharp not lingering - 4
cough - every other day - 4 today producing/productive - 6
sciatica - notice mostly at night - 6
carpal tunnel - both arms elbow to fingers - 7, even makes ring and little finger go to sleep (don't do anything to cause this ever)
foot pain - right big toe - 2, under left foot next to arch - 2
muscle pain - 4
joints -every other day - 4
clumsiness/coordination - 7, falling into tables when I forget to pay attention getting up
Trouble walking - legs feel wably, falling asleep like - 5
dizzy - while in lights standing - 8
- even laying down - 4
brain fog - much better - 4
memory impairment - much better too, but still a 4
concentration - little better 6
sleep - still can't fall asleep
irritability - 0
fatigue - 7
depression - 0
loss of oreintation - 2
neuropathy/tingling (front of body, arms legs, nose, tongue, lips - constant - 4-8, feels like goosebumps that don't go away (xmas tree lights)
hot/cold - 7
fever - 0
swollen glands in neck - 5-8
stiffness - off and on - 5
facial or dental pain - off and on - 7
jaw pain - 0 right now
headache - thuddy/left side - 6-8
hoarseness - comes and goes - 5
ears ringing - comes and goes - 3
hearing loss - comes and goes - 5
ear pain - early in MP - 0 now
sensitive to sound - 2
blurry vision - seems to go with headache, especially left eye - 6-8
photophobia - 10
abdominal - went from leaky gut to constipation - 4
Heart - Blood pressure low - 90 over 60
Resting Heart rate - 98 Was feeling like heart beating hard and fast
GOT A DOCTOR IN FORT WORTH! Will see after March 1. Extremely thankful.
Question: Blood pressure low which is normal for me. Concern about 98 resting heart rate, usually 65-70. I think I might have swung hyper thyroid. Could have been from too much light exposure this last weekend. What do you think?
Plan: Not take Armor and see if it makes a difference.
____________________
Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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Meg Mangin R.N.
Former Team Member
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Posted: Thu Feb 21st, 2008 07:01 |
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Thanks for reporting your progress.... It's not necessary to list symptoms that didn't occur this week or are very mild.
You've been taking 25mg mino for six weeks. Sometimes an increase will settle symptoms. Recommend you try 50mg. See When to increase antibiotics
I'm sorry your light exposure seems to have caused an increase in symptoms. We know how difficult (mentally and/or physically) it can be to make lifestyle adjustments that facilitate avoiding natural light to reduce symptoms.
Tachycardia may be triggered by too much thyroid supplement.
Work with your doctor to find the correct dose of supplement as you progress on the MP by monitoring thyroid function frequently. If symptoms appear to be due to improved thyroid function and too much supplement, reduce the dose and contact your doctor as soon as possible. See Thyroid supplementation while on the MP
Congrats on the new doctor.......
____________________
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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juliemomof3
Member in Phase 2
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Posted: Thu Feb 21st, 2008 22:16 |
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Thank you. Since I go hyper thyroid and hypo thyroid I will not take thyroid meds until I see doc on Monday. This Monday will be the appointment . I am very excited.
And tomorrow I will begin 50 mg mino.
Thank you so much.
julie
Noted
____________________
Rocky Mountain Fever, Lymes, CFS, Thyroiditis/Hashimotos, celiac, EBV, 1,25D-55 Feb08, Ph1 Jan08, Ph2 May08, Armour thyroid, hydrocodone, Nyquil, NoIRs, limited outings covered, 25D - 20 (2/08)
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