Making Progress.. Much Less Fatigue

[Conniel7777]

Hello Everyone,

 

  I hope I dont “Jinx” myself by posting this, but I guess I will take my chances:

I am seeing definite improvement in one area for sure: the major fatigue seems to have ended!  😀

Of course, when I had a flare, the fatigue was very bad.. I could barely keep my eyes open, but even while not flaring, I always had the tendency to be in bed by 8 or 8:30 pm, and earlier if I could. I would also always take a nap on the weekends…

I was usually good for about 3 hours worth of general errands, like grocery shopping, or laundry, or housecleaning, but after that, I would be completely out of energy. ( this from a person that used to hold down 1 full time and two part time jobs, PLUS spend an average of 6 hours cleaning my house from top to bottom )

Lately, I have noticed that I dont have that urgent need for a nap anymore.. the last few weekends have passed by with no naps. also, I am also finding that I am able to spend an entire day ( 7 or 8 hours ) doing errands, shopping, etc, and at the end of the day, I am tired, but not totally drained like I used to be.

However, what is more striking than all of that is my bed times as of late: how about anywhere from 11 pm to 1 am? 😯  LOL!!!

No, its not because of insomnia or anything, but its just that I no longer have that “cant keep my eyes open” drained feeling. lately, I have to force myself to turn off the TV and go to sleep, where as before, even at 7:30 pm I couldnt stay awake to watch my nightly re-runs of Seinfeld, etc..

Even my fiance has been saying “Wow.. what are YOU doing up?? I cant believe you're awake!”

Even the recent Thanksgiving holiday found me on my feet cooking half the day, and I wasnt totally wiped out by it.

I am definitely not pushing this, as I dont want to burn the candle at both ends, but its just one of those things that has crept up on me without my really noticing until lately. it seems the fatigue has really decreased since my AP doc ( Dr. W ) increased my Mino dosage to 50 mg twice a day DAILY…

For those who dont suffer from fatigue, this may not seem like a big thing or a big improvement, but it is to me! its a sign that the AP is working. 😎

My next appt with Dr. W is 1 week away.. Friday, December 18, and I am SOOOO hoping that he is going to increase my Mino dosage to 100 mg, twice a day ( up from 50 mg twice a day ) if he does, that will put me at the full Harvard Protocol dose…

He will be reviewing the bloodwork that I had drawn last week, as well as the Echo I had done in mid November.. ( not having any problems, just standard testing )

So, here is my Christmas Wish List: 

1) That my Echo results are FAAABULOUS

2) That my bloodwork shows some improvements as well as the fact that I am processing the Mino with flying colors

3) That Dr. W increases my Mino up to the full Harvard Protocol dosage ( and I am able to tolerate it without herxing and continue to see bigger and better improvements )

I dont think thats too much to ask for!

Keep your fingers crossed that I get everything on my list, and that I keep the momentum going on the back of the disappearing fatigue!

Connie

[JeffN]

Connie – May all your Christmas wishes become a reality! Great news about the fatigue or rather the lack of it. Keep up the good work. Feels good doesn't it!

[Kim]

[user=1441]Conniel7777[/user] wrote:

For those who dont suffer from fatigue, this may not seem like a big thing or a big improvement, but it is to me! its a sign that the AP is working. 😎

Connie, THAT IS HUGE!  Way to go.   Yes, yes, yes, it's working.  😀

I only have one comment and that is that you may want to ride this wave for as long as you can.  If you are getting phenomenal results on a low dose, why change now?  Tweaking the dose is for when you plateau. 😉

Enjoy feeling good.

Take care……kim

[Conniel7777]

Hi Kim,

 Thanks for the cheers! I use the disappearing fatigue as well as the cured Carpal Tunnel to constantly remind myself that the AP is working. 😀

 As for your question: “If you are getting phenomenal results on a low dose, why change now?  Tweaking the dose is for when you plateau.”

I do have a reason for wanting Dr. W to up my Mino to the full Harvard Protocol dosage of 100mg, 2x a day: its because not everything is on the upswing…

Approximately 6 weeks after starting the Mino, I began to feel some tightening of the skin on my face. its nothing you can see, but I can definitely feel it. I reported this ( by phone ) to Dr. W's office, and I requested that my Mino dose be increased. ( at the time, I was taking 50 mg, 2x a day, M-W-F ) and he had a nurse call me back and advise me that “some tightening of the facial skin is to be expected with limited sclero” ( in other words, dont worry.. but thats much easier said than done! ) and he obliged my request to increase the Mino, however, he didnt take me up to the full 200mg per day, but instead took me up to where I am now, which is 100 mg per day, 7 days a week.

Where as the tightening started only on a very small percentage of my face ( I would say I felt it on maybe 25% of my face.. just a tiny bit on the cheeks and a tiny bit on the forehead ) now it has progressed to my entire face. Still, its nothing you can see at all.. but I can most definitely feel it. it has also progressed to my neck, to the point if I lift up my chin, the neck skin is tight and pulls on the skin of my upper chest. I probably dont have to tell you how alarming this is. 🙁

Weird.. I find myself opening my mouth as far as I can several times a day and holding it there.. God only knows what people think when they see my driving down the road with my mouth stretched so far open.. I am sure it looks like I am screaming like a maniac!! Thankfully, this hasnt affected how far I can open my mouth or anything.. I can open it very wide.. it opens as far as my jaw does.. all the way.. so thats a good thing.

I also began to feel some slight tightening on my wrists, but thankfully that went away.

So, thats where my “scorecard” stands at this time.. Carpal Tunnel = completely gone. Fatigue= 75% gone ( most days, I really have no fatigue at all ) Skin Tightening = NOT Gone.

I never, ever had ANY type of tightening before.. never ever.. not even in my puffy sausage fingers, but 6 weeks into the Mino, and BAM!~ in a way, I guess thats a good thing? I mean, to never have had any type of tightening, and then “coincidentally”  it happens a month and a half after I start Mino? I mean, I am no expert, but from everything I have read, that seems to not indicate progression of the SD as much as it seems to scream out that its in direct relation to the Mino and is a result of die off.

I mean, doesnt the timing of it seem curious? doesnt it make sense that the myco's were all dying and releasing their toxins? you know, the whole “you may get worse before you get better” thing?

Anyway, that is what I tell myself every day.. its like chasing after a skunk– he feels threatened, he sprays.. swat at a bee, he stings..a snake bites and releases venom.. kill a few billion myco's, and they die, releasing their toxins… ( hopefully my portable sauna will help to eliminate these toxins.. I definitely work up a sweat in there! )

So, there you have it.. THATS why I am so anxious for Dr. W to increase my Mino to the full dosage.. I want the tight feeling to start going away! I want to wake up one day and go “Wow.. hey! my face doesnt feel tight anymore!!” ( trust me, when that day comes, everyone here will know it, because I will be shouting it from the rooftop!!! )

Sorry for such a long answer to your short question.. :blush: (bad habit of mine!) hopefully, I will be forgiven, as this place is the only resource I have to talk about these things and get any kind of support.

Thanks for listening.

Connie

[Conniel7777]

Jeff,

 

 I sure does feel good! its amazing how your perspective on things changes, you know? last Christmas, all I wanted was a laptop.. Ha! I miss those days.. I would have never guessed that this Christmas would find me wishing for a 200 mg daily dose of little green, very expensive pills!

I hope you get all of your Christmas wishes fulfilled, too! 🙂

 

Connie 

[lindalou]

Hi Connie, I had skin tightning on my whole body. It did take at least a year before it did loosen. I also had the severe fatigue, and ran fevers for months, sooo much better now. Glad to hear you are feeling better, and it will happpen it just takes time.

                         Best of Luck to You, Lindalou

[JBJBJB]

I am so happy for you, Connie. This is something we are all very thankful. Are your puffy fingers getting better? I may not catch that. The reason I ask is that my shinny puffy sausage fingers are BIGGER comparing to the pre-AP time.

I know how important it is for us to be able to sleep through the night. After I found my TSH (thyroid) was high, I started Amour Thyroid. That gives me a lot of energy. I also can sleep through the night.  Have you checked your thyroid?

Hope your wish will come true for the good year to come!

JB

[Conniel7777]

Hi JB,

 

 1) I HAVE had my Thyroid checked: the bloodwork for it is perfect. I have had it Ultrasounded twice, and I do have some very teeny, tiny cysts, but the Endocrinologist said these are very common, and so very tiny that they are having zero effect on me. she recommended an ultrasound once a year, but she said other than that, I should have no worries about my thyroid. ( Whew! I was very relieved when she said that! )

2) Concerning the shiny sausage fingers: I agree with you.. I think they have gotten a tiny bit puffier / shinier / stiffer since beginning AP. definitely no improvement there yet!

3) Thankfully, I have no problems sleeping thru the night ( well, unless my 17 lb Maine Coon cat Leo decides to climb up on my chest while I am sleeping and start licking my face, which he does quite often!! )

Thank you for the warm wishes.. I hope the new year holds the same good things for you! ( BTW.. I live in Jersey now.. born and raised here… but I lived in Indiana for almost 10 years.. Elkhart, about 15 minutes from South Bend Notre Dame, so I still feel like a Hoosier! )

 

Connie 

[JBJBJB]

[user=1441]Conniel7777[/user] wrote:

Hi JB,

2) Concerning the shiny sausage fingers: I agree with you.. I think they have gotten a tiny bit puffier / shinier / stiffer since beginning AP. definitely no improvement there yet!

BTW.. I live in Jersey now.. born and raised here… but I lived in Indiana for almost 10 years.. Elkhart, about 15 minutes from South Bend Notre Dame, so I still feel like a Hoosier

Thanks Connie for the information about puffy shiny sausage fingers. I have been looking at them each morning, wondering when I can wear my wedding ring?

Nice to know you also lived here in Indiana. I'd love to move to a warmer place when I grow up :roll-laugh: It's too cold here. Not good for my Raynaud's.

[Conniel7777]

JB,

 

 I suppose the puffy fingers will be the last to go.. at least that seems to be everyones experience. 😕 ( but thats ok.. I can live with that! )

 

Ahhhh.. I know what you mean about a warmer climate..  Arizona? New Mexico? Hawaii?? warm weather is definitely better for us!

 

Connie

[Patti D]

Way to go Connie!!!

You are on your way girl or should I say fellow cysta! Keep up the good work.
Isn't it funny how you can't wait to up your dose of mino to the Harvard protocol and I at this time last year couldn't wait to decrease my mino to 100mg per day. I had reallly good results for my RA with the decrease from 200 to 100mg per day. My Rheumatoid factor went from 145 down to 25 in less than 6 months on less medication.

So glad your thyroid cysts aren't gving you additional grief.
I am sending well wishes your way so you continue to climb up and feel better & better!!

Patti

[Eva Holloway]

JB,

I also have a problem with sausage fingers, much less now then 6 months ago, but the wedding band is still around my neck. sometimes I do wear it, but now it is getting actually too loose:roll-laugh::roll-laugh:.

Don't you know, there is never a dull moment with this illness.

Eva:D

Eva Holloway

[JBJBJB]

[user=1441]Conniel7777[/user] wrote:

I suppose the puffy fingers will be the last to go.. at least that seems to be everyones experience. 😕 ( but thats ok.. I can live with that! )

Ahhhh.. I know what you mean about a warmer climate..  Arizona? New Mexico? Hawaii?? warm weather is definitely better for us!

[user=236]Eva[/user] Wrote:

Don't you know, there is never a dull moment with this illness.

:crying: Well, I hope my fingers will return to their normal size. They are so red and swelling, I have to hide them. :doh:

 

Yes, Eva, it seems never ending problems. Yes, it is Never a Dull Moment.[/color”> So glad to hear some positive news from Connie. These news keep me going. [/color]

 

[Eva Holloway]

JB,

I noticed that you are not taking any meds, are you having problems with them? not trying to be nosy.  Right now after almost two years on Biaxin and Minoxin plus the LDN I start feeling like a human being again instead feeling sick and have other people do my work even at home. I noticed the LDN has really started to kick in the last month, but I am far from being well, just on a slow curve uphill and upright again.

Hope you can do something about your fingers, because it can get very uncomfortable the more swelling you get. On my fingers it was so bad that the skin split and I could hardly touch anything. So you may go back to some antibiotic to get the swelling down. I am not a doctor, but when my finger where the worst the doctor told me it was synovial lining inflamation. I tried lots of things, had just to wait till finally the antibiotics and the LDN kicked in. I am actually now knitting without gloves again.

Eva:D

Eva Holloway

[JBJBJB]

[user=236]Eva Holloway[/user] wrote:

JB,

I noticed that you are not taking any meds, are you having problems with them? not trying to be nosy.  Eva:D

No, you are not nosy at all. Thanks for asking. I have not taken minocyclin for about two months now. As soon as I am back on mino, I have a lot of reactions, like, severe cough, rash, and a lot of pain, feeling like having severe flu…. I don't believe it is herxing. my ESR was above 40 and I felt horrible. I feel okay after a week without it.

 

I almost went to Iowa this Nov to see Dr. S again. However, I learned that I “MAY” have Lyme Disease…. so I am running the confirmation test #489 to make sure I have it. If the possibility of LD is high, I will head for Dr. C's office to see him.

I just took zithromax 250 mg per day for five consective days. It works well for me to keep my lungs at the bay.

 

JB

 

 

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