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HeatherK
Member in Phase 2
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Posted: Sun Nov 11th, 2007 16:19 |
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Thanks Vez!
I'll try to clarify what you need here:
Non MP meds used so far: Extra Str. Tylenol only for pain. It has worked so far as needed.
AS for anxiety, I have taken the 1/2 Benicar and then Q4hrs, so far that has done the trick.
I intend to get stronger meds to have on hand though for anxiety and pain.
I take no supplements regularly, only the occasional digestive enzyme if I know there is some food in the meal that not wheat or dairy free.
The biggest differences from 25mg to 50 mg Mino is lessened muscle pain, and the new herxing seems to be in bowell and in the sinuses of face and sore gums and roof of mouth. Yet the bowell movements are improving steadily in bulk/colour, less loose movements. And Photosensitivity has heightened considerably.
Thanks for the links to read.
Heather
Noted
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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HeatherK
Member in Phase 2
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Posted: Tue Nov 20th, 2007 01:51 |
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This past week
40mg BenicarQ6 , used an extra 1/2 Beni, on two separate days
50mgMinoQ48hr (started Nov 3/07)
Tylenol Extr str for headaches used twice this week
Light Exposure: some light reaction at first of week at home, but OK the last 3 days. Only lasted 10 min in a store on Friday night with 2% Noirs. Sun night, was in a public building with 2% Noirs for an hour, was OK sitting.
Symptoms: fatigue, lighthead, brain fog , every moning, but lifting earlier in the day...mid afternoon by end of week. Very little achiness or IPR. just headache, tight shoulders and neck. lethargy on the day after Mino, but not pain. Some herx in upper left jaw and front tooth one day that lasted abt 12 hrs. Have the restless legs at nights, which had dissapated for a while after the last increase of Mino to 50 mg.
I think its time to up to 75mg Mino to provoke Herx. ??? I've been 16 days on 50 mg Mino, not much happening now.
My encouragement this week is that I have been able to walk outside every night and have gradually lengthened the walk. 4 1/2 hydro poles down the road and back.
Thanks with regards of the great work you moderators do!
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Nov 21st, 2007 00:27 |
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Based on your report, increasing mino it a good decision. You will gain confidence in your knowledge of the actions of your immune response as you get more experience in independently adjusting the MP meds.
Once you have your feet on the ground in phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms. You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology.
Let us know how it goes...........
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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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HeatherK
Member in Phase 2
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Posted: Fri Nov 30th, 2007 15:49 |
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Nov 21/07 to Nov 30
Started 75mgMinoQ48 @ 8 to 9am. 2 sessions of Q48, 1 session of Q72, 2 sessions of Q48.
40mgBenicarQ6 as usual, but Q4 for next 4 days (Nov 22to 25th), Q6 on 26th, Q4 pm 27th & 28th, Q6 on 29th.
Non MP Meds: xtra Strength Tyelnol several times
Light Exposure: only in house low lux lighting and computer, some tv screen.
Symptoms: 75mgMino hit hard....all of usual, fatigue, restless legs, lighthead, brain fog, daytime sleepiness, fractured night sleep because of legs, lethargic, constant chills and sweats for 4-5 days that are letting up now. PHOTOSENSIVITY is crazy , not able to use computer last week at all, even today , doing this it is just starting to give the headache now. I've rested in the dark a lot this week , got books on CD have helped the frustration! Am using 10 % Noirs indoors in the low light, especially in kitchen, where dim light reflects off pots or water affects me! I did get out of the house last night and spent 1 1/2 hrs in a incandescent lit building with 2% Noirs and I was fine the whole time. Tried a store with bright florescents later, only lasted 10 min.
Chills: wanted to report this that has happened several times, and thru the brain fog I recognized a pattern. I sleep mostly on my left side and numerous times have woken freezing cold, and if I change to my right side I immediately within a minute am HOT and throwing everything off, and cool quickly to cold again.... maybe just the old fashioned Hot Flash??? I'm 51, had partial hysterectomy 10 yrs ago. One day the chills/sweats were constant all morning, but realized my feet remained freezing thru-out, so used a hot pack at my feet, and it stopped!
Lymph: on left side have hardened, and left side of face sinus's sore , so the front tooth is hurting again. . Warm compresses on face and tylenol take the edge off.
Extra Mino: I tried 25 mg one evening when symptoms uncomfortable and already on BenicarQ4. There may have been a slight change for better in my comfort, but became restless , couldn't sleep that night till 4 am. Up and down out of bed. Also tried 25 mg on third morning of a Mino session instead of 75mg, as I had decided to go Q72 for next day. and already doing BenicarQ4. think I felt worse for a few hours, staggery on my feet. But much better by evening and OK next morning to take the 75mg dose again.
Bowell movements have become almost too firm now, so am watching diet more carefully with that in mind.
Am getting LOTS Of Rest , more in dark than ever, but it keeps me more comfortable. And trying to keep reminding myself that this in itself is proof that the meds are doing their thing. I just find the isolation the hardest at this point. I got out for a short walk most evenings, what a treat to get into fresh air!!!
Until later!
Holding Fast
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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HeatherK
Member in Phase 2
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Posted: Mon Dec 3rd, 2007 13:50 |
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I am having continual chills and am wondering if the thyroid is herxing??? I had to stretch this last session of 75mg MinoQ48 to Q72, because of these symptoms, which did let up by last evening. I took the Mino again this morning and the chills are back in force. And still very photosensitive.
I also like to know how to take a break safely from the meds/MP even for a few days over Christmas...
Thanks so much again
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue Dec 4th, 2007 23:48 |
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We understand your feelings of isolation. See Social Support Helps and Personal, Family, Relationship Topics and Mood Improvment Suggestions.
Chills are not uncommon in Th1 illnesses but it wouldn't hurt to get your thyroid function checked. See What causes night sweats, flushing, temperature disturbances?
Some folks feel better when they stop antibiotic/s and some feel worse. Once you have reduced your Vitamin D ingestion and allowed your immune system to recognize the pathogens with the Benicar blockade, it often, essentially, goes into "auto-pilot" mode and may need continued modulation with the MP meds. If you decide to discontinue all antibiotics and Benicar, be prepared for your immune system to keep on doing its job of killing pathogens. Ask your doctor for help if you need to palliate any intolerable symptoms. Here is a link that will give you some helpful information regarding: How to take a break from the Marshall Protocol?
Thus, regular doses of antibiotics can be modulatory and may actually reduce your immune response, and the regular 48 hour cycles make the immune response fit into a predictable pattern.
Here is a link that will give you some helpful information regarding: How to take a break from the Marshall Protocol.
Let us know how it goes.............
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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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HeatherK
Member in Phase 2
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Posted: Tue Dec 11th, 2007 14:07 |
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I have been feeling dry skin of late, and now is feeling like I cannot breathe as easily, like I feel claustrophobic inside my own skin. I shower/bathe quickly every other day, as I feel sooo dry after, as if there is not enough oil in my skin. I have taken extra Benicar this morning, as I was Q6 during the night, but Q4 yesterday. I took 75 mg dose of Mino this morning after 72hr.
It is really cold here, and makes the air drier for sure, so have water on top of the wood stove heat to evaporate, doesn't seem to make much difference with this though. Could this be thryroid related too? My thyroid hasn't been tested lately, but was always a little underactive, but not enough to medicate , the Dr.s told me.
I apply lotions constantly to hands esp.
thanks again
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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HeatherK
Member in Phase 2
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Posted: Wed Dec 12th, 2007 15:00 |
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Yesterday was Mino day 75 mg, the dryness of my body is as bad this morning. I drank abt 2 1/2 litres yesterday, and awake a few times in night so drink too. I've had a litre so far , its 11 AM. I had chills after the meds till about 2-3 pm, but no sweats till 6m , and a couple in the evening.
I am very uncomfortable and don't understand if this dryness issue is a herx?
Everything feels dry , nasal, mouth, skin all over. I feel like I have to get out of myself.... Has anyone reported this and is there relief???
I feel like I'm trying to breather deeper too, I'm on Benicar Q4 since yesterday morning. Also lightheaded today , usual on day after Mino. And photosensitive still, computer especially.
Thanks Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Thu Dec 13th, 2007 04:18 |
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I'm sorry this dryness is making you so uncomfortable. CWD bacteria love to live in the keratinocytes of the skin so it's not unusual to have a variety of cutaneous symptoms appear due to immunopathology. Excess water isn't necessary. See Water: How much should you drink every day? andThe Water Myth.
Turning down the heat in your home and wearing more clothes instead might help. Avoid hot showers or baths. Apply lotion immediately after bathing. Benadryl can help at night. See I’ve developed a rash/itching/skin problem. What should I do?
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Hang in there.....
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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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HeatherK
Member in Phase 2
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Posted: Fri Dec 21st, 2007 15:46 |
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40 mg Benicar Q6, Q4 when needed
75 mg Mino Q48 until Dec 18th, taking a break now, planning abt 10 days over the holiday.
Probiotic yesterday and today.
The last major herxes have subsided, the chills/sweats, and the skin dryness/tightness that followed. Those chills/sweats lasted over 2 weeks. I was either whipping clothes off or wrapped in mutliple blankets several times a day. One day I kept track in my journal every time a sweat hit. 14! I think days before that were worse too. I didn't find much to alleviate the skin issue , but kept the house air moist, cut back on bathing/ showering, used a dry skin brush before bathing, and lotions after. It was during that time I hit my lowest with the MP and wanted to quit (for a few hours) and then my resolve resurfaced again. I guess it had to run its course and Benicar Q4 got me though it...
Since the symptoms been more fatigue, achiness and sore swollen genitalia and I think now a vaginal infection. I also had another emotional herx, anxiety and panic yesterday morning, the third day after last Mino dose. The afternoon, I felt very unwell, really couldn't pinpoint much , just felt rotten all over, and not at ease. I took Benicar Q4 from noon on Dec 18 to last night, for the above and also thinking that the vag infection was a herx. Seems somewhat better today. The emotional / unease of yesterday was passed as well. I may have to get OTC treatment for the vag infection.
4th from last Mino dose: and I do feel like I am getting a cold now. Is it OK to use other Meds for that now when I am still on Benicar. I have found that echinacea and golden seal were the only 'meds' that helped me before the MP. Or could going Benicar Q4 again be the best approach, while on this break?
Photosensitivity is abt the same, not as bad on computer though , thankfully.
Routine Bloodwork has been all normal so far. Yesterday it was done again with addition of thyroid function and my first 25 vita D check, (which will take abt 5 weeks to get back.)
Have a joyous and peaceful Holiday !
Merry Christmas
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
| Status: |
Offline
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Posted: Sat Dec 22nd, 2007 05:01 |
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Thank you for the update Heather.
It sounds like you are having increase immunopathology which often occurs when the modulatory effect of the abx is withdrawn. Have you ever tried mino for palliation? Some find a 25mg of mino to help dampen symptoms.
I went through the sweats and was certain they would never quit but they will, just hang in there. You may find that a small amt of mino (25mg) every 6 hrs helpful along with the extra Benicar.
If you do choose to take another abx for a vaginal infection please check in here first. The Benicar can increase abx action and you want to avoid severe immunopathology. Have a wonderful Christmas.
Warm Regards, VEZ
I have a yeast infection. What should I do?
I think I have a bladder infection. What should I do? may be similar symptoms
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sun Dec 23rd, 2007 06:16 |
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You can try OTC cold remedies but your 'cold' symptoms may be immunopathology. See I think I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis)
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.
Benicar provides a palliative anti-flammatory action that may be essential to maintain tolerable symptoms.
The recommended first step when symptoms are intolerable is to take an extra 40mg Benicar immediately. Chewing the tablet and placing it under the tongue will promote faster absorptiona and quicker symptom relief. See How to make Benicar act faster
If intolerable symptom/s persist, increase Benicar to every fours hours around the clock until symptoms are tolerable.
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. See When to take low-dose, high-frequency minocycline
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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HeatherK
Member in Phase 2
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Posted: Wed Jan 9th, 2008 04:50 |
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Dec 18th to Jan 8th break from Mino
40 mg Benicar Q 6, Q4 when needed
50 mg Mino Q48, also 25mg MinoQ6 and Q12 as needed
Tylenol as needed, 1.5 mg Melatonin twice
My experiment of taking a break from the Mino, didn't pan out as I thought it would. I stopped the 75 MinoQ48 , last dose on Dec 18th, but did not feel better for it. My husband saw little difference in me. I guess my immune system kicked in, took BenicarQ4 (for usual IP, fatigue, light head, achiness chills) a lot over the holiday, but had a raging vaginal infection by the 24th, treated with 25mg MinoQ 6 and Q12 and BenicarQ4 and a topical antifungal cream Monistat. It tamed it down , but had to use the full 3 day Monistat treatment starting on the next night, 25th, Christmas Day. Also the longer off the Mino, the worse my legs got, restless leg syndrome, affecting sleep every night. ANd bowells gradually loosened again.
Felt the best of the break on Dec 27th and 28th. I decided to try an outing in daylight ...the first time since on the MP. I went outside ,a dull day after one huge snowstorm in our lovely new piles of snow with visiting friends with 2 Lab dogs to the brook behind our house. I was fully suited and covered , only the face below glasses was exposed and that well creamed with the keta cream. I was out - a timed 15 minutes.
I was OK that evening, and next morning, but cheated at lunch for a taste of scrambled egg and small piece of bacon. NOt sure which episode or both caused the worst photosensitivity yet and so faint/light headed , but the 3oth and 31st were horrible, spent most of the day in totally dark. It didn't relent until into New Years day and was able to watch a DVD by that evening ...with 2% of course. Both of these days I used BenicarQ4 and 25mg MinoQ12 and then Q6. I did learn from this though that the low dose frequent Mino dosing did help.
Jan 5/08- started 50 mg MinoQ48 , achy , photosensitive, and vag itch again. Benicarq4, through into next day and had to start another 3 day Monistat treatment Jan 6.
Jan 7 was the BEST DAY I have had in months, !!!!!!!!! I had 50 mg Mino, BenicarQ6, had enough energy to complete 3 loads wash, make cookies and work on a scrapbook page,,, It was wonderful!!! I had slept well after taking 1.5mg melatonin at midnight the night before.
Then woke up today exhausted .....all day , let up abt 9 pm tonight , but I had taken another 1.5 melatonin last night, so obviously that wasn't the thing to do , two nights in a row, as found before that it contributed to fatigue.
And the restless legs have settled down again, since back on Mino
CONCLUSION of this "Break" .....
I think I would have been better to have just cut back the Mino to 50 mg from the 75 for the holidays, rather than stop it. I think it would have been better for me, But we don't know till we try!
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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HeatherK
Member in Phase 2
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Posted: Wed Jan 9th, 2008 15:39 |
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I remembered this morning to report my bloodwork taken On Nov 22/07
Urea: 3.5 Creatinine: 63 Cholesterol 5.09 Triglyc 1.67 HDL Cholesterol 1.67, LDL Cholesterol 2.52, Chol:HDL Ratio 3.0
C-reactive prot < 8.0
CBC : all within normal range, except MPV was 11.3, the upper normal range being 11,0
The extra=mural nurse doing my blood work wanted me to check with you is its OK to eat before she comes on the morning she collects. Both times my cholesterol has been OK, whether I ate or not. If there is no other reason to fast in your opinion, can I have breakfast???? as I tend to be hypoglycemic and was in rough shape by the time she got here last in Dec. My husband had stayed with me I was so weak and into a anxiety/emotional herx as a result I think.
Thanks again Girls .........Hanging in there...for the long-haul
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Jan 9th, 2008 17:19 |
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Heather, you did a great job experimenting with Beni and mino and learned some valuable information....
That gynecological itching may not be a yeast infection. Please read Candidiasis (yeast infection) and I’ve developed a rash/itching/skin problem. What should I do?
Also Melatonin.
Congrats on the good bloodwork. Since fasting is only needed to ensure accuracy of the lipid levels (or blood sugar) and yours were in normal range, you could do the next blood draw after breakfast. If the lipid levels are high, you will have to repeat them fasting.
Keep up the good work.........
____________________
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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HeatherK
Member in Phase 2
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Posted: Wed Jan 23rd, 2008 16:46 |
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40mg Benicar Q6, Q4 when needed
75Mg Mino Q48
Jan 11/08 (MP Day 123)- back on 75mg Mino Q48 dose. Sleep is better now that I'm back on it. Restless legs have subsided and the vaginal issues have stopped as well. Have felt better all around since back on Mino, than while on the Christmas break I attempted. Photosensitivity still a big issue. Seems especially worse when getting evening meal on. Blood sugar dropping?? So am being more aware of getting a good snack abt 3:30 to 4:00 pm and that seems to help. Heavy fatigue and sleepiness in the morning and achiness comes and goes.
Jan 18/08 (MP Day 130)
IP is abt the same as last week, except photosensitivity is lessening.
Jan 23/08 (MP Day 135)
More achiness in last 5 days, especially on awakening , usually before Benicar is due, Have dosed with 20mg Benicar at these times and 2 extra Str Tylenol and Benicar Q4 thereafter. It works for me. Bowell movements have improved again since back on track with Mino. Photosensitivity not as bad, though am careful with computer time as that sets it off. I have not ventured outside in daylight since that one day in December, other than quickly setting out a birdfeeder each morning just outside the back door.
I rec'd results of my first 25-D retest. Sample taken Dec 22, abt 3 months on MP. (Start Date Sept 20) Results are 36 NMOL/L or 14.4 pg/ml. I know the target is 12 or less, preferable abt 7. How does this rate, in your opinion, for 3 months into Phase One?? Is there any relationship to levels of photosensitivity and lower levels of 25-D? Does photosensitivity drop as this 25-D level drops?
I hope to get out to a dental checkup appt tonight after dark.
Thanks again! I'm missing the suns warmth in the house, but enjoying the full moon in these wintry nights, very bright and pretty with all this snow that just keeps coming!
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Thu Jan 24th, 2008 00:41 |
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Thanks for checking in. 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:
Congrats on reducing 25-D. Your photosensitivity may have increased because 25-D is no longer suppressing your immune system.
I like your attitude about the sun and moon...
Before you leave phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you.
When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit.
You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
Next week, let us know how it worked...........
____________________
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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HeatherK
Member in Phase 2
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Posted: Sun Feb 17th, 2008 20:15 |
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I probably need my knuckles rapped....its been 25 days since I last posted, I knew I was procastinating, but didn't realize it was this long.
MP MEDS:
40 mg Benicar Q6, Q4 when needed (often)
75mgMino Q48, 2 sessions Q72
PALLATIVE MEDS:
Extra Str Tylenol - had 33 in 25 days, average 1.3 day ,
Robacet: 1 caplet for back pain
LIGHT EXPOSURE:
Indoor: usual 30 lux and less, limited time on computer with 2% Noirs , TV screen Ok limited to 1 or 1 1/2 hr , not every day.
Outdoor: None, except one 4 minute walk to mailbox in late afternoon, on overcast day but snow reflection was bright. I was well dressed (Cold here!) , and K cream on face exposed, 2% Noirs and hat. No more than usual photosensitivity that evening. Did this on a Mino Q72 day.
SYMPTOMS:
Heavy head cold symptoms several days but alleviated by Q4Benicar.
Back Pain IP! 10 days...started with the usual achy tight shoulder neck worsening to pain in and old troublesome spot on spine in mid back. Pain moved to right mid shoulder for few days than to left shoulder and back to right side before gradually subsiding to usual achy/ tight shoulder/neck. 2-3 days of this was very painful and extra str Tylenol not enough. Used Benicar Q4 round the clock for a couple of days and some frequent Mino dosing. Rest of body was very aching as well, esp upper arm muscles, would pain in movement.
Fatigue: is stil strong every morning ...scale 7-8...always back to couch, very sleepy, so get comfy and sleep another hour, usually in dark .
Chills: in the mornings for the past couple of week, some sweats later in day usually due to light sensitivity.
Photosensitivity: still rough , esp. day after Mino dose.
COMMENTS:
IP has lessened this past week, more interest in life
I find that 1/2 Benicar sub. anytime needed works good for me and if needed with the regular Benicar dose, esp. if too achy to sleep
I keep trying frequent Mino dosing, but don't find much relief until after 2 doses which abt 15 hrs later. ( 2 6hr doses) . Q72 day does give me a repreive.
PLAN:
-hope to increase to 100mgMino later this week
Drs appt tomorrow, first day trip in daylight, 15-18 mins one way. I have rigged a shroud for my head made out of the black out fabric that covers my windows. Don't plan to be actually seen with this on though. Tomorrow is a MinoQ72day.
QUESTIONS :
My Dr. has informed me (via secretary) that she no longer is going to send bloodwork requests for my 25-D thru Medicare!! Because my last result was within Canadian "normal" range. If I want them I will have to pay for them. This upset me as I realize that I have not got thru to her ...as to why this is important to me and makes me wonder if any info I did leave with her has been looked at/read. I know she reluctantly let me start this, but really doesn't want to be involved too far. Any way I have to go in to try to sort this out and hopefully request a stronger painkiller to have on hand, as the tylenol did not cut it in the back IP I just experienced.
Is it correct to tell her that my 25-D level fall from 24 to 14.4 is a good indication that this protocol is working ??? I KNOW it is, but to convince her.
Also will I be using Mino in Phase 2? I'm going to need more here soon, just wondering how much to ask for in next prescription. Is Mino used for freguent dosing thru all the Phases?
If I am now soon on 100mg Q48 , is 25mg still what is used to manage IP? When is 50 mg used? (as mentioned in some forums as used in higher doses....but higher doses of what?)
Still hanging in here............with much thanks to you ALL again for this protocol and chance for a better life!
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Mon Feb 18th, 2008 05:18 |
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Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Yes, you will be using mino in phase 2 and 3. For dosing to reduce immunopathology, see When to take low-dose, high-frequency minocycline
Your doctor may, or may not, agree with you regarding reducing 25-D. Either way, she should be interested to see in your 25-D has continued to fall.....and that should justify payment.
Keep up the good work...........
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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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HeatherK
Member in Phase 2
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Posted: Wed Feb 27th, 2008 13:06 |
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MP Day170!
MP MEDS: 40mg Benicar Q6. Q4 when needed ; 100mg Minoq48 since Feb 22
PALLITIVE MEDS: none
LIGHT EXPOSURE: less than 30 lux inside, no daylight/sun exposure, I did go out for a 10 min walk at 6:30 this morning, sky was already grey, past dark but with new snow reflecting, was brighter than I expected, did not have glasses on and was photo sensitive within 10 min back in house. I got my light meter as soon as I got back to house: showed 16 lux. outside.
SYMPTOMS: Little change since on 100mg, Only photosensitive still, better on computer with 2% , ( I turned brightness down further) and fatigue heavier on day after mino, but over all, have had more energy since on 100mg. Achiness is rough in early morning, am awakened by it before 6 hr Beni is due. But achiness subsides by late morning.
COMMENTS: I'm pleased/excited I DID MAKE IT this far and ready to launch into Phase Two. Thanks for the confirmation on that, Meg The way I feel on 100Mino is supporting this decision too. I'm reading up on this next phase and cautiously optimistic...hope I can do phase 2.
PLAN: I have Drs appt on Monday Mar 3rd ( did not go on the 18th) I decided to reschedule when you suggested phase two. So now am more prepared with phase two info ( I have a laminated Phase Two/Three Quick Ref , and the Phase 2/3 Documents ready for her) . Also need refills of Rx now. And will discuss the importance of the Vita D Metabolite testing again.
QUESTIONS: I'm thinking ahead to summer season, could you direct me to links with clothing suggestions that have worked for others? I have read Trevors recommendations, the dark heavy fabric is best, but what do people use for hats and gloves that block sunlight? I read on Aussie Barbs once she make a cape,...sounds like a good idea.
Thanks again, for all your help in encouragement thus far. Looking back the last 5 months doesn't seem that long now, but going through the rough weeks , time dragged. But thiis little reprieve I am having now is really encouraging me that this is working, even though my headknowledge already knows it is
Holding Fast
Heather
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CFS for 5 yrs+, Started MP Sept20/07.25=24pg/ml, 1,25=47.5pg/ml. Dec/07 25D= 14.4 Started Phase Two Mar 4/08; Sept 08 25D=8. In blackout home, wearing NoIRs, presumed celiac, wheat,dairy free.
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