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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Wed Dec 28th, 2005 18:34 |
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Thank you Jillian
Your drops have been added in this thread EYE INFLAMMATION and Th1 diseases: which may have further helpful info..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DNStog
Member Advocate
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Posted: Thu Dec 29th, 2005 02:45 |
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There's also a fairly new night time product for soothing dry eyes. I do not recall the original manufacture, but CVS has duplicated the formula. It is actually an ointment developed for dry eyes that bathes the eyes all night...much thicker and longer lasting than the gel drops. The ointment causes blurry vision which is why it was developed for night time use. Works great!
Donna, Phase III still cruising ~~~~ 
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Aunt Diana
Member Advocate
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Posted: Thu Dec 29th, 2005 09:01 |
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Thanks DNStog for the info on the ointment....I'll try some tonight.
Meanwhile, I am a bit confused about dosing the mino. Can someone please clarify....I am taking 25mg every 48 hours, and 40 mg benicar every six hours.
Over the holidays I took additional mino, 25 mg. every 12 hours to help with a bad herx...so I could be with my family, it did help a lot, almost immediate relief. I did that three times.
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Then, last night my herx started to get pretty bad so I tried benicar 40mg Q4hrs and found that this helped, although not as quickly but definitely helped as well.
Today I am going to try to extend my mino dosing to the 3rd day and see what happens.
Now that I am learning how to minimize the bad herxes my question is what is least likely to interfere with the action of the antibiotics. I want to kill these bugs as fast as I can. So which of the above is best for the action of the mino.
Also, when do I know when to go to 50mg. mino?
I want to do what is least likely to interfere with the protocol.
thank you in advance for any clarification of this.
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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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Aunt Diana
Member Advocate
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Posted: Thu Dec 29th, 2005 09:06 |
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Thanks DNStog for the info on the ointment....I'll try some tonight.
Meanwhile, I am a bit confused about dosing the mino. Can someone please clarify....I am taking 25mg every 48 hours, and 40 mg benicar every six hours.
Over the holidays I took additional mino, 25 mg. every 12 hours to help with some bad herxing...so I could be with my family. I wassurprised at how quickly it helped , almost immediate relief. I did that three times.
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Then, last night my herx started to get pretty bad but I thought I'd try another route just to see what happened. I changed the benicar 40mg to Q4hrs and found that this helped, although not as quickly but definitely helped as well, and I felt much better within a half hour.
Today I am going to try to extend my mino dosing to the 3rd day and see what happens.
Now that I am learning how to minimize the bad herxes my question is what is least likely to interfere with the action of the antibiotics. I want to kill these bugs as fast as I can. So which of the above is best for the action of the mino.
Also, when do I know when to go to 50mg. mino?
I want to do what is least likely to interfere with the protocol.
thank you in advance for any clarification of this.
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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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Thu Dec 29th, 2005 16:03 |
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Diana
The best action for the mino is the dose and schedule which achieves tolerable herxing for you.
The Phase One doc is your first guideline.. some have it printed to check with regularly. and here is further info that may be helpful.. I'm eager to get well. How can I speed up my progress on the MP? This is not about pushing the herx to see how long you can go.. it is about using the schedule where all remains tolerable to be most kind to your self..
to explore the options that are recommended to help you achieve tolerable herxing see the precautions and do not hesitate to use any of the adjustments in this FAQ My Herxheimer reaction is too strong. What should I do?
Dr Marshall says : " It doesn't matter how long it takes. You have started on a lengthy journey, and the extra pain of speeding beyond a comfortable pace will not yield a comparable reduction in the length of the journey."
I hope this helps. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Sun Jan 1st, 2006 14:27 |
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Happy New Year to all....I hope 2006 brings health to all MP members.
Today is day 41 (benicar 40mg/Q6hr) and day 22 (mino 25mg/Q48)
For several days after the Christmas holiday, I felt horrible. Seemed to have a 4-5 day herx. Symptoms were achiness, exhaustion, headaches, painful and irritated eyes, heaviness in legs and arms.....I moved as if I were a 90 year old person. Also I was so irritable and quick tempered and teary I embarass myself.....my poor husband...I have been awful to live with.
Two or three times I took an additional 25mg mino and was amazed at how quickly that seemed to help. Then I adjusted the benicar to every 4 hours for a day or so and that seemed to help as well. So I think I'm starting to understand how the meds affect the herx.
Now I'm back to the normal dosing and have been feeling pretty good for a few days. I actually felt well enough to complete a project I'd started a few weeks ago.....I can work with my eyes again. Hallelujah!! I'm planning to work a bit more today and that feels really good.
Just as an aside, I have come to the conclusion it simply doesn't pay to go out in the light. Every time I have, totally armed with noirs, hat, scarf and keto cream I have still paid the consequences. Mostly with my eyes. Therefore I'm trying to sleep in the day and I'm awake at night. The only time I seem to be able to go out for errands is about a two hour window right around dusk...before it gets too dark...the car headlights in the dark are more irritating to my eyes even with the noirs, than the daylight.
Since I have been feeling so well now for three days I thought I might try to ramp up to 50mg mino tomorrow...I take my dose in the evening so that would be four days without a herx. Is that pushing it? Any ideas or comments would be appreciated.
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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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sun Jan 1st, 2006 15:05 |
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Thank You Diana
Posting your index and details clearly is helpful.. and your light observations..
as per the Phase One doc you have stayed at this level till you are now able to tolerate some more herx ... and you are learning about cause and effect of the light and the meds.. all good experience to take you forward..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Wed Jan 4th, 2006 16:13 |
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On Monday (day 42 benicar, 40mg@6hr, day 23 mino, 25 mg @48hrs) I upped my dose to 50mg mino.......hadn't had herx for several days and felt ready to ramp up.
I'm glad I did - herx came back but tolerable. Mostly all over achiness but Advil can help with that. My mood is better (that can change at any minute, I am sure, but for now it is pretty good). My legs and arms are heavy feeling and I feel like I'm 100 yrs old, but that waxes and wanes and I'm used to that feeling by now. At least I know I'm killing the enemy.
My eyes are also feeling much better....not needing eye drops as frequently, no grittiness, no pain....I've been able to read a bit and do some sewing...which feels great.
I bought myself some games and puzzles (one 1,000 piece jigsaw puzzle that I know will drive me insane) to help pass the time. I do get saturated with the TV
Although my social life has evaporated.....very few people go to sleep at 5a.m. and wake up at 3p.m, I still can talk to friends of the phone and live vicariously through their adventures.
I must admit I am praying that I'll be one of those lucky people who start to get more light tolerant at 6 mo. I am an artist and I miss the colors of the great outdoors. Sometimes, I'll don my darkest noirs, put on a ski mask, and all the other accoutrement and frolic in the back yard just to be out there and it feels great. But you will not catch me outdoors for any lenghth of time during the day.....I pay too high a price for that physically.
that's all for now. Happy herxing
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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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Aunt Diana
Member Advocate
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Posted: Fri Jan 6th, 2006 22:11 |
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Third day on 50mg, mino Q48; benicar remains same 40mgQ6
I think I understand what Aussie Barb means by "subcutaneous ouch"...have experienced it now each time I take the mino at this dosage.
In my own words, I visualize spiderman with all those lines he has, and imagine each one of them hurts, just under the skin. It feels like a battle wages on in my body just below the surface. My herxes seem to set in within an hour or so of my dose and definitely get less as time goes on. Advil relieves the ouch within 20 minutes or so....sometimes 3 will do it, sometimes I need 4. It can get so bad, however, that if I'm lying in bed it can take me quite a while before I get up the steam to want to move in order to reach the advil.
These are also the times I get pretty grouchy and very impatient. I also have a constant state of sniffles and sneezing...I'm buying kleenex like it was going out of style.
Today, I slept the entire day....just got up at 7p.m. but feel quite rested. a-a-choo.
My eyes are 100% better by the way, only need to use drops very occasionally. I think that's directly due to strict obeyance of the light avoidance.
that's all my news for today. Oh, on another note, afriend of mine inadvertantly deleted all me e-mail so if anyone has emailed me and hasn't gotten a response, I apologize, but please try again. (I started receiving again at 5:00 pm yesterday)
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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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Aunt Diana
Member Advocate
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Posted: Sat Jan 7th, 2006 11:03 |
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From the moment I get up lately I start s;niffling and sneezing. I must sneeze 10 times a minute. Other than that I don't have any other cold symptoms....but my nose is getting sore and I am going through kleenex by the boxloads
Any suggestions out there?
thank you in advance
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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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Julia
Board Staff (on leave)
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Posted: Sat Jan 7th, 2006 11:18 |
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Hi Diana,
Probably herx! Sneezles and snuffles are a regular feature of my herxing just now, but they don't usually last more than an hour or so at most. Reminds of the hay fever I used to have for three months every summer... pre MP  . My DH used to say he was buying shares in Kleenex. No need now.
 Julia
PS Vaseline is good for a sore nose.
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Sarc dx Apr.03, uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D June08:9.6. Not now avoiding light; glasses for sun only. Life is good! Julia's story
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Jan 7th, 2006 17:25 |
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Diana
I have joined this into your progress report. To come to your own post each time you log in... go to the my account button up the top. and the link will be there..
Symptoms of cold are often due to Th1 inflammation and the Herxheimer reaction.
you may like to check thru the points here one at a time to see if any of them are helpful to you.. My Herxheimer reaction is too strong. What should I do?
see also under C for colds in the ABC of MP... scroll down to the 2nd post. 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.
Others may also have suggestions for you.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DNStog
Member Advocate
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Posted: Sat Jan 7th, 2006 18:00 |
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Hi Diana,
Nasal herx symptoms hit me at 75mg Mino in Phase I as flu type symptoms, stayed with me through most of Phase II as "cold type" symptoms in the form of runny nose. Phase III alternates between runny nose, stuffy nose, normal nose daily and every few days or so sneezing attacks lasting for an hour or so.
I do take OTC Loritab, a non drowsey antihistimine, once daily and Benedryl as a back-up occasionally. This has worked for me. For my sore nose, I use pure Lanolin to relieve the chapped skin and vasoline inside applied with a que-tip. These are ways I dealt with seasonal allergy problems most of my life.
May your herxes be gentle and your healing quick in 2006. Oops, did I just make a rhyme?
Donna, still cruising ~~~~~
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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edj2001
Member Advocate
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 163 |
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Posted: Sat Jan 7th, 2006 19:01 |
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Hi Julia,
In my years of research trying to find information on sarcidosis, i stumbled across a report that indicated Vaseline fumes should not be allowed in to the lungs. I think it is the petroleum base that is the problem. I just mention this to see if anyone else has information. Gene
Julia wrote:
PS Vaseline is good for a sore nose.
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| digitex propafenone Armour proscar Guaifensin Aspirin| 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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Aunt Diana
Member Advocate
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Posted: Mon Jan 9th, 2006 13:10 |
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Day 29 on Mino, 50 mg q48hrs, benicar day 48, 40mg Q6hrs
Feel pretty good today but the sneezing really got to me on Sunday. I sneezed constantly all day until I started having a back spasm, not to mention a sore nose. I took the advice of several MPers and got some vaseline for my nose and took a benedryl.
This is where it gets good....the benedryl stopped the sneezing and the runny nose.....hallelujah...but I fell asleep at 6p.m. ( Ithink I was simply exhausted from all the sneezing)...i woke up at 9pm...stayed up for about an hour, went back to bed and didn't wake up until 3PM the next day. (except when the alarm went off to take my benicar.) I slept 14 hours. I guess I needed it
My nose is running again today and I'm starting to sneeze again but I don't think it's quite as intense as the other day.
I aso realized today that I haven't had a particular sensation that I used to get quite regularly in my head....sort of like it had cotton candy up there....it was an awful feeling....I think it might be gone....because I don't remember ever going for more than a few days without it. Interestingly in the early days of mino, my bad headaches were in that same area of my head. Maybe the bugs up there are gone. I hope so. another hallelujah.
that's all the news from me at this point. I'm glad we finally got my avatar up there.
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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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Aunt Diana
Member Advocate
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Posted: Thu Jan 12th, 2006 04:36 |
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52nd day on full MP. 40mg benicarQ6hrs, 50mg mino q48hr.
The last few days have been uneventful, although I have been very tired and have been sleeping a lot. Just generally "off my feed". I attribute this to herxing.
The sneezing finally stopped....I think benadryl helped immensely. I notice I'm not very hungry...tend to want to eat fruit and non fat yogurt or ricotta cheese. Drink seltzer or grapefruit juice. (I am usually a person who lives to eat so this is quite different.)
My arms and legs are heavy and somewhat achy, and stiff. My eyes are much better....think the drops help as well as compresses when they get really bad.
Don't feel too motivated to do much but thought I should post to let others see what it can be like. This is all very tolerable.
Am contemplating upping the mino next week if I stay in this condition.
I talked my husband into having his Vit D tested so we should be getting those results next week....I have long suspected he has something similar to me. He doesn't agree but maybe the tests will tell us, he has something wrong with him and no one has ever been able to explain it other than depression. We will see.
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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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Aunt Diana
Member Advocate
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Posted: Fri Jan 13th, 2006 12:24 |
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Took my 50mg mino last night and almost immediately got exhausted and went to bed. was really wiped out. Slept til my alarm went off for next benicar dose....got up for a while and went back to sleep. I am really sleeping a lot.
But this morning an amazing thing dawned on me. I am able to fall asleep without sleep meds....I haven't done that in 40 years. And now that I think of it....that's been true for a week or more...I just hadn't thought of it. ALso, the weird cotton candy feeling I used to get in my head every few days has disappeared....knock on wood. I hated that feeling and it would appear fairly regularly. I think things are starting to change for me.
Needless to say, that makes this protocol and the herxing a lot easier to take. I am feeling very optimistic.
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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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alayne
Member in Phase 3
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Posted: Fri Jan 13th, 2006 17:17 |
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Oh Diana, that's amazing you're falling asleep w/o meds! I pray for the day that happens to me, so you've given me even greater hope. 
BTW, know that cotton candy in the head feeling quite well. I just called it cotton-filled head.
Cheers! Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Mon Jan 16th, 2006 02:26 |
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Diana
re the post at Sharon.. se FAQ My Herxheimer reaction is too strong. What should I do? ..
Do not hesitate to use any of the meds adjustments.
Check these options one at a time to assess and adjust your own situation.
If you are concerned do not hesitate to contact your Dr.
anytime you are looking for info.. you can click on the ABC in my sig line and find the info alphabetised. or if you ask, we are happy to assist you any time..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Fri Jan 20th, 2006 13:12 |
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Saw my doctor yesterday and he suggested I take 500mg of MSM 3x day for aches and pains, The name on the package is Fundamental Sulfur and the ingredients listed are Vit.C 100 mg., molebdenum 25mg., methylsulfonymethane 500. m.g.
I don't see it listed anywhere in the supplements to avoid list. I remember taking this years ago and it did seem to help. Anyone know anything about it?
also, my Vit. D is now at 15 from 16 a month ago.
He also wants to retest my angiotensin converting enzyme....It was 42 on Dec. 27. and is at 36 this last visit.
Is this of any signigicance? thank you for any information you can provide
As for my symptoms....mostly stiffness and achiness, sinus drainage and sneezing, sleeping a lot...I plan to up my mino to 75mg after this weekend....I want to be able to babysit my nieces over the weekend so don't want to change anything at the moment..but I believe my herxing is pretty minimal right now. I do continue to have "hot periods" and cold periods several times during the night especially but these just seem to be part of the whole thing.
Thanks again for any light you can shed on my questions.
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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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