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hellohope
inactive member
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Posted: Tue Sep 26th, 2006 02:18 |
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from Hellohope on benicar
Hi Took my first 25mg of mino this morning a bit nervous .I have so many continuous symptoms from the illness how will i know when i am herxing.Thanks for your support and this is a brilliant website. Hellohope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Tue Sep 26th, 2006 02:58 |
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Hi Seem to have a appetite of a elephant .I have been in relapse for most of this year,i noticed when this happens my metabolism goes crazy.I wake up in the middle of the night and have 4 sandwiches because i am so hungry i cant sleep.The strange thing is even though i am in bed most of the day i do not gain an ounce of weight i still weigh 49 kg.
I have read the info on avoiding sunlight, but i wasnt sure if i have to sit in darkness during the day inside the house.Iwear my 10% noirs inside but do i have to pull the blinds down ?
Has there been anyone on the MP that has improved from beeing as ill as i am with cfs .Most of the people that you hear about are still walking around or working part time, not confined to bed.I guess you lose hope after a long illness and many failed treatments.If you can see a flicker of light at the end the dark tunnel then it pushes you to go on. Thankyou Hellohope...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Tue Sep 26th, 2006 03:16 |
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HI I noticed when i am in relapse my metabolism goes crazy, i wake up in the night and eat 4 sandwiches because i am so hungry i cant sleep. But i do not gain an ounce in weight even though i am in bed most of the time.Is this common?
I have read the info on sunlight and the MP ,but do i need to sit in darkness inside the house during the day?
I guess when you have been ill for a long period of time you lose hope and you are afraid of having dreams of a good life once again.In case you get dissapointed again.Do you know of anyone with chronic cfs that is confined to bed most of the time getting better.You hear about the ones that can stiill work part time and walk around getting better .I guess a flicker of light at the end of the tunnel gives you hope. Thankyou Hellohope....
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Online
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Posted: Tue Sep 26th, 2006 05:40 |
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HelloHope
Welcome to the Mino forum and thank you for posting.. we encourage you to post and to read the other reports and information regularly.
see HERXHEIMER REACTION
HERX .... What is it? we look forward to your letting us know.. The aim is to keep all symptoms tolerable. Let us know if you have any questions.
For Information re light: see the FAQs
What are the recommendations regarding sun/light exposure?
Why is my 'herx' more intense after exposure to Light & / or Vitamin D?
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
For those who are very ill, Dr Marshall says it is better to shut out all Natural light and use incandescent lights to less than 30 lux. Dimmer switches and / or lower wattage bulbs may be helpful to achieve less than 30 lux indoors.
For Information and Links to CFS Member stories: see CHRONIC FATIGUE SYNDROME and Th1 inflammation
While there are some who are able to work, there are also those who are not. You will soon become more familiar with the MPers..
for information on food and weight: see I'm losing weight. What should I do?
FOOD TIPS Page: 2 for Helpful hints
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Grace
Member Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
| Status: |
Offline
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Posted: Tue Sep 26th, 2006 06:18 |
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Hello hellohelp.
I was mostly not bed bound, but spend most of my waking time on the couch or in my reclining chair-which I have now got rid of .I was mostly house bound only able to be taken out for a few hours once or twice a week, and was getting closer to needing a wheel chair for this.Now I can mostly go out when and were I like. MP does take time and herxing isn't fun. ,but if you are able to spend your time reading this board and go slow with MP you will get better .You may also need to make your house darker do a search for 'panda film'.You may also need benicar 6 hourly
Grace
Grace CFS improvements
GRACE CFS being able to do things..
Grace All the things I can do
Grace Muscle wasting Muscles regained and healing
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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hellohope
inactive member
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Posted: Tue Sep 26th, 2006 09:31 |
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| Hi Grace Thankyou for your encouraging post ,sometimes its hard to imagine that you can recover from this life destroying illness.Its scary to dream of a normal life ,after having many hopes and dreams destroyed before.But i will never give in to this illness .Thanks Hellohope....
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Wed Sep 27th, 2006 08:51 |
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Hi I had my first 25mg of mino yesterday.i took it at 10.30am and i had nausea in the afternoon and in the early hours of the morning.Also today i had nausea and felt seedy .with increased fatigue.As i am so ill i am not sure if this is a herx or not,but i dont normally get this much nausea, only a bit around hormone time.
Also do you know if cwd bacteria is transfered to the baby when pregnant and can your partner catch it? Thankyou Hellohope...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3877 |
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Posted: Wed Sep 27th, 2006 14:01 |
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HelloHope,
Sorry to hear you are feeling nauseated. Herxing anywhere in the gastro-intestinal path is very common as one starts the MP and manifests in a number of different events.
Links you might be interested in:
Best wishes!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Grace
Member Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Thu Sep 28th, 2006 06:27 |
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Hellohope,
I think I waited at least 3 or 4 wks before I started mino.The change when I started benicar, knocked me around.You also may want to ask your Doctor about increase benicar from 8 to 6 hrly.
I know how scary, and yet exciting it is to thinking about a real life again.Just take one day and herx at a time.
Grace
P.S I got on the old exercise bike today.First time since getting CFS
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Online
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Posted: Thu Sep 28th, 2006 07:28 |
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HelloHope
It can be difficult for those who have had to bear hard disease symptoms to define the tolerability or intolerability of symptoms.
Phase One is a time of learning to adjust your meds and to gain experience..
The aim or the key is to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines. and we are here to assist you in any way we can.
Have you tried adjusting your Benicar dosing schedule? Some take half a Benicar tablet at a time every 2 or 3 hours and find that helpful..
see FAQ When and why should I vary my Benicar schedule?
If Dr agrees -can take extra half tablet (20mg) any time during cycle, or adjust dosage to 40mg Q4H. see also BenicarQuiklink
Your Mino can be extended too if it is helpful .. some find that the 3 day dosing gives them a free day to have a break from the Herx/symptoms.
Some find the 3 day dosing gives more herx.. dont let it go to intolerable, take your dose at a shorter time if necessary to hold your herx at tolerable.
Let us know how you are and if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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hellohope
inactive member
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Posted: Thu Sep 28th, 2006 08:36 |
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| Thanks for the info and support.Today felt a lot better, had next 25mg of mino at 10.30am.Felt good up until 7.30pm starting to herx again head detached and feel off but coping o.k. Nothing more than the last 4 years,this is an encouragement. Thanks Hellohope....
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Tue Oct 10th, 2006 09:44 |
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Hi M.P.ers started 50mg of mino today .Just a update on how i am going. My head pain has gone after 10 months. Its a bit embarrassing but my urine doesnt smell really bad anymore. Also brain fog has seem to have gone , my thinking is really clear now. Still a bit unsure about my herx as im so symtomatic i guess i will probably get symptoms dissapearing instead of noticing herxs as i cant tell which is which.That is why i have increased my mino to 5omg .
My fatigue is slightly better , and my appetite is slowing down.I had stomach pain and lymph pain and feeling hot.Thankyou and god bless Trevor Marshall...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Online
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Posted: Tue Oct 10th, 2006 09:54 |
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Thank you Hellohope
Your post has been merged into your own progress report for continuity.. Thanks..
To post your progress report or any questions you may have each time you log in... go to the my account button up the top. and the link to your own thread will be there.. to click and reply, thanks..
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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hellohope
inactive member
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Posted: Sun Oct 22nd, 2006 09:19 |
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| Hi Fellow M.P.ers Just an update on how i am going.I am definately getting strong herxs on 50mg of mino.I guess as my 25d drops down my immune system is really starting to kick in wow!!!! dont i know it.Feeling even worse when i am pre menstrual . Days 15 to 21 are bad news.I will take one day at a time and i will beat this bacteria.Thanks Hellohope...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3877 |
| Status: |
Offline
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Posted: Mon Oct 23rd, 2006 02:03 |
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Hi Hope!
Looks like you are alive and Herxing.
Do check in more often, list your meds across the top of your daily or every-other-day post so moderators can compare to symptoms.
If you want me to help with your Avatar I'll be glad to help. It will be good to see you around more often!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Vicki SA
Member in Phase 3
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Posted: Thu Nov 2nd, 2006 02:14 |
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G'day Hellohope,
Glad to see you here! Best wishes for Phase 1. If you put your location in your profile, it helps other members nearby to connect with you.
I am in Phase 2 and feel confident that I am improving slowly.
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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hellohope
inactive member
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Posted: Thu Nov 9th, 2006 00:07 |
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| Hi M.Pers My wife was admitted to hospital yesterday with heart arrythmias. She only had a couple last night so they have slowed.She has had a chest xray today ,but no result yet.The thing that concerns us is that her haemoglobin has dropped to below the normal range. When she had a blood test 8 weeks ago it was normal.What can we do to get this back up,is iron supplements o.k. on the M.P.Is it the benicar or the mino causing it to drop as she doesnt take any other meds.Please advise.She has stopped the mino but still on benicar.Thanks Hellohopes Husband...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Thu Nov 9th, 2006 00:11 |
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| Hi I forgot to mention her kidney function and electrolytes came back good.Thanks
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Thu Nov 9th, 2006 00:48 |
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I'm happy to know the kidney tests and electrolytes were normal. It's good to know that cardiac inflammation, not low potassium is the likely cause of her arrhythmia. This should relieve her anxiety. The only way to resolve the arrhythmia is to resolve the inflammation with the MP. Taking it slow will keep the extra beats at a minimum.
Anemia is due to the disease process and is seen now because of the immunopathology involved with the recovery process. For details, see:
My doctor says I am anemic. What should I do?
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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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hellohope
inactive member
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Posted: Thu Nov 9th, 2006 01:14 |
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| Thanks meg Will the anemia get worse and worse or does it stabalise in the low range.When do we need to be concerned and what happens if it goes critically low.Do we need to retest every couple of weeks.Should we take iron supps or not? Thanks Hellohopes hubbie Mark..
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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