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Maria

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murcierashley
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Posted: Mon Nov 7th, 2005 12:24

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Began Benicar on 9/12/05 .. I took my first dose of mino on Friday, 11/04. I took my second dose on Sunday. So far, I have not experienced any real discomfort. I had a little chest pain for a few minutes. My stomach has been bothering me, but nothing major. I felt a few sharp pains in my legs. I have noticed that my nose is more runny than usual. At this very moment, I'm feeling fine. I'm concerned that I don't have more symptoms. I have been avoiding sunlight and vitamin D foods diligently.

Maria

____________________
Maria: pulm sarc(Dec 2000) 3L-6L O2 24/7; dyspnea (severe) chest pain cough fatigue rash; 8/05 1,25D-43 D25-22; Ben 40mg/q6h 9/12/05) Mod Ph2-2/2/06; Spiriva (q1d),Tramadol(50mg)& Guaifen as needed; NoIRs avd D & sunlight; 8/06 25D-10

Aussie Barb
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Posted: Mon Nov 7th, 2005 17:21

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Maria

Welcome.. Thank you for posting.. this seeming lack of herxing may be because you have come off the prednisone.. the immunosuppressive effects can last some time..

or it may be that sometimes the antibiotic can take a couple of weeks to kick in or it may kick in at any time..

or it can be that the herx symptoms that you have written here are less than expected, less than what you have experienced as disease symptoms... they can seem subtle in comparison..

as long as you are following the Phase One doc as written..

We are happy to assist in any way we can.. all best, Barb ...

murcierashley
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Posted: Mon Nov 7th, 2005 22:19

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Thanks for responding so promptly. I believe the herx is less than what I expected because, as you said, my disease symptoms have been so severe. I think you know that I'm on 0xygen 24/7. As long as the bugs are dying, I've no complaints. Since I'm unable to work, I'm able to avoid sunlight almost completely. I believe that if I continue to follow the MP, I'll rejoin the work force some time next year. Getting better every day...

Maria

DNStog
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Posted: Tue Nov 8th, 2005 06:08

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Hi Maria,

Congrats on starting the Mino with little herx! My strongest herx sxs were at 75mg Mino - all flu like symptoms including fever. Hyperthermia (feeling warm), skin itching, weak legs and arms, and low energy levels were the main symptoms I experienced through Phase I. After ramping each dosage I would have chest burning and pain which were all quite tolerable and short lived.

Wishing you well quickly with ease!

Donna, still cruising ~~~~~ :dude:

Last edited on Tue Nov 8th, 2005 06:09 by DNStog

____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11

murcierashley
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Posted: Tue Nov 8th, 2005 12:09

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Thanks Donna,

I appreciate every bit of information on how you and others have coped with the herx reaction. Although I'm doing okay, I'm going to follow our doctor's advice and stay on 25 mg for at least 2 weeks. I'll keep you posted on my progress.

Wishing you well,

Maria

murcierashley
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Posted: Thu Nov 10th, 2005 11:14

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Hello everyone. After my third dose of mino, I felt a little strange the following day. I woke up from a deep nap in utter confusion. I felt like there was something I was supposed to do, but couldn't figure it out. I eventually realized that I was supposed to take my benicar. I'm assuming this the "brain fog" I've read about. I just couldn't get my thoughts together. Has anyone had the feeling that they were awake and doing things only to wake up and realize it was a dream? I also woke up with sore muscles. So far, things are going well. I think I can feel the little bugs dying.

Maria

murcierashley
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Posted: Thu Nov 10th, 2005 11:15

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Aussie Barb
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Posted: Thu Nov 10th, 2005 17:27

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Maria

and for any who are reading: To try to be careful about these type of situations which can occur and so as not to forget the Benicar, it is a good idea to have a system suitable to yourself, with an alarm and the Benicar, perhaps set out in a pillbox so that you can see if you have taken this dose or not etc.. and water all close by.. and you may already have a system.

all best, Barb ...

DNStog
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Posted: Fri Nov 11th, 2005 05:58

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Hi Maria,

You'll find many people on the MP who have experienced the strange dreaming sensations you mentioned in your post. There was a dream or two that my hubby and daughter had to refute as actually happening. :shock:

They were weird and so real!

For Benicar dosing, I purchased a pill container from CVS that is broken down into Breakfast, Lunch, Supper and Bedtime for Seven days worth of dosing. It has helped me so many times in trying to remember if I did or didn't take a dose. It is kept next to my alarm clock/clocks with a tall glass of water which cuts down on the fumbling around while brain fogged.

Wishing you well! Donna

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Posted: Fri Nov 11th, 2005 07:00

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Maria,

As patients begin minocycline dosing, their job is to become familar with the experiences related to the Herxheimer effect and to learn how to manage it. So you are on track.

As Donna has noted, it helps to have good support from your family. But every patient needs to set up their own system to stay on track with dosing. Brain fog is something you just have to prepare to survive as unscathed as possible. There are some good suggestions you can browse in the thead HELPFUL HINTS FOR THOSE ON THE MARSHALL PROTOCOL

Belinda

murcierashley
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Posted: Fri Nov 11th, 2005 11:25

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Thanks Belinda, Donna, and Aussie Barb. I appreciate and value all of the advice. My cell phone and palm pilot alarm for my benicar and mino dosing. A pill box would help me to know whether I've actually taken my meds. I'll fix that today.

I took my 4th mino dose yesterday. I felt good enough to attend an open house at my sons' school. I am experiencing some tingling in both arms. Still nothing that I can't tolerate.

Looking forward to happy herxing,

Maria

Aussie Barb
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Posted: Fri Nov 11th, 2005 17:55

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Thanks Maria

You may also be interested in the helpful tips in FAQ What precautions do I need to take when I am going out or when traveling away?

all best, Barb ...

murcierashley
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Posted: Tue Nov 29th, 2005 15:28

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Greetings to all,

I'm up to 75 mg of mino, as of yesterday. Symptoms remain tolerable. I have infrequent pain in my head and behind my eyes. I forgot to mention that I've developed an ugly rash on my ankle and legs that itches, since weaning off the prednisone. When I first came down with sarcoidosis, I had a permanent rash on my legs and my hands itched constantly. My hands also looked old and gnarled. Those symptoms have returned. I was referred to a dermatologist by my pulmonologist, but nothing really stopped the incessant itching. I don't know if it's worth a trip to a dermatologist.

It seems as if my ability to remember things is getting worst. I almost forgot -- I've lost about 15 lbs since September. I have not been dieting. Just keeping you posted on my status.

Getting better daily,

Maria

Last edited on Tue Nov 29th, 2005 15:34 by murcierashley

Aussie Barb
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Posted: Tue Nov 29th, 2005 15:45

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Thanks Maria,

The usual treatment for herx can help with your skin symptoms as well if you need to dampen the herx some.. see I've developed a rash. What should I do?

let us know if you have any questions. all best, Barb ...

murcierashley
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Posted: Tue Nov 29th, 2005 15:56

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Thanks, Aussie Barb. I was glad to read that this is a herx reaction. I can deal with the itching, since it's a sign of healing. :cool:

Maria

jrfoutin
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Posted: Tue Nov 29th, 2005 17:34

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Maria, glad you are here. Just finished your avatar so it should be up soon. Looking good!

I have a lot of your Sarc symptoms. Some nice MPer suggested the Ketoconazole cream for those nasty acid rashes when I had the rash on my face. Not much and Herx didn't last long, but enough for a good ouch!

Brain fog is real. I quickly moved from the pharmacy-supplied bulk container to doses easily seen in a clear pill container case so I could tell by a clock if I had taken something or not. Alarms, water bottles and pill cases are always at the ready and follow me about the house, when I run someone somewhere in the car, etc.

If you were on Prednisone and you just got off it, then I understand some may have weight loss. You're a tiny one already, so look into the threads "food tips" and "food to avoid" on this site. --JRF

Last edited on Tue Nov 29th, 2005 19:00 by jrfoutin

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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, 10/08 25D6.9

Aunt Diana
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Posted: Tue Nov 29th, 2005 19:14

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I just read your post about having strange dreams and wanted to share with you an experience I used to have all the time. When I was very sick with Lyme and long before I had been diagnosed or recieved any treatment I frequently could not tell the difference between dreaming and reality. My reality was so dreamlike it was impossible to tell if something was a memory of a real happening or a memory of a dream. I haven't had that experience, thank God, in many years but your question reminded me of it. I think that the Aborigines believe that dreaming is the reality and the waking state is not. Something like that anyway, and I find that fascinating since my own experiences of a "waking dream state".

Good luck in your healing.

____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25

murcierashley
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Posted: Wed Nov 30th, 2005 17:45

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Thanks JRF and Aunt Diana. I appreciate every bit of advice and wisdom that's offered. Last night, after I posted -- about 30 hours into my dosage, I felt really strange. I was watching TV, but felt like things were in slow motion. My 16 month old brought me his sippy cup and I couldn't for the life of me figure out what it was. It came to me, but initially, I was like, "What is this?" I felt lethargic and heavy. I also felt some sharp pains in my head. Other than that, I'm feeling fine.

I also found that my dream/wake state has intensified. On the bright side, it lessens my depression about my situation to know that I'm not alone. Thanks again for sharing. And Aunt Diana, the Aborigines may be on to something. :cool:

Getting Better,

Maria

Aussie Barb
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Posted: Wed Nov 30th, 2005 18:31

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Maria

For those who have had to bear hard disease symptoms, it can be difficult to define the line between tolerable / intolerable when it comes to herxing...

For safety, it may be necessary to talk to Doc about trying the mino a bit more frequently if necessary for the best effect to make sure you are in a fully conscious state for the care of yourself and your Family..

all best, Barb ...

murcierashley
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Posted: Tue Dec 6th, 2005 21:37

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Hello Everyone,

My brain fog has diminished drastically. Upon waking, I feel a little groggy. I also feel as if my breathing has improved a little. Being on oxygen 24/7, it's a little difficult to determine whether I'm actually breathing better. However, I ran up the stairs today and I wasn't totally breathless.

In my earlier posts, I don't know if I mentioned that I take Tramadol (50mg) as needed for pain. Since filling the prescription in September, I've used it 3 times. I take it for body aches and headaches. Since I use it so infrequently, I never placed it in my profile. However, I added it to my profile today. Sorry about that.

Hoping everyone is doing well,

Maria

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