Making Progress.. Much Less Fatigue

[Eva Holloway]

JB

I have been taking N-Acetyl L-Cysteine (NAC) for almost a year now and I noticed that I have almost no lung invlement anymore. I think that has helped me a lot to get a better pulmonary report. Look it up and see if it something you can use.

Glad you can take something to keep the monster at bay.:(

Eva:D

Eva Holloway

[JBJBJB]

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

JB

I have been taking N-Acetyl L-Cysteine (NAC) for almost a year now and I noticed that I have almost no lung invlement anymore.

Awesome news, Eva! I will keep this in mind when I get to see either Dr. S or Dr. C. If my confirmation test will come back indicating I do not have Lyme, I will go to see Dr. S in Iowa again. Otherwise, I will go to see Dr. C in Missouri. I am very anxious!

::doh: JB

[Conniel7777]

Patti,

 Thank you so much for the well wishes..

Funny that you couldnt wait to take your dose DOWN and I cant wait to go UP! ahh.. well.. RA on one side, Sclero on the other…

And YES, I am happy my Thyroid is behaving, even if I am a “Cysta!”

 

Connie

[Conniel7777]

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

 

Lindalou,

 You know, posts like yours are what keep me going. I dont know how else to say it…

I NEED to hear about the success others have experienced.. about the reversal of symptoms, about how everyones time line is different, and about how for most, progress is very S-L-O-W….( encourages / reminds me to be patient )

  thank you so much for giving me what I so desperately need!

Connie

[APbeliever]

This is a document that I converted to pdf format for all to read for LDN. I am sure some of you have this document already.

[A Friend]

Connie,

I'm thrilled for you, that you are doing so well.  When you were so sleepy and getting more rest, my guess is that your body was trying to heal itself. 

I read your schedule, and it sounded a lot like someone I know… intimately!!! (Don't tell, but that was me a few “moons” ago.)  I truly believe that you and I may just have just used up all our resilience and become ill by trying to be super women (Type A personalities for sure… and, yes, we loved doing it all!). 

You (Connie) wrote:  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!!!

Connie, there's a lot I don't know; but, really looks like you are trying to do the same thing over again (repeating history) and get a different result!  Hope you can pull it all off successfully.  But, I vote for you to get plenty of rest.  I still find myself staying up much too late, and I'm constantly scolding myself.  “Old habits die hard”… don't they? 

Mom AF

[mschmidt]

Connie,

It IS a big deal that you don't feel fatigue anymore! Congratulations on that:)  When I started just the minocin, I noticed all of my skin tightening again–it was bad last summer before I was diagnosed, then the swelling and tightness started to subside on its' own…until I started the mino.  Then I started the clindy iv's, and I flared with symptoms for almost 4 months–I must have had an insane amount of bacterial die-off in me.  I was totally freaking out because I remember reading about “getting worse before getting better” but, I wasn't feeling that confident about it when it was happening to me.  That's when I reached out to people on the board, to reassure me that I was going to be okay.  It's a daunting thing when you go through it because it feels like you're in full blown disease.  Get the support you need, and really believe in your heart that you are going to get through it all, and good things are ahead for you. 

Remember that your body heals when you are at rest–VERY important to make sure you are getting 8 hours of sleep.  It will help you to recover faster. 

I know you will continue to have success with this! 

[Conniel7777]

Hello!  🙂

 Thank you so much for sharing your experience with me…

It rang so true for me when you wrote:

the swelling and tightness started to subside on its' own…until I started the mino.  Then I started the clindy iv's, and I flared with symptoms for almost 4 months–I must have had an insane amount of bacterial die-off in me.  I was totally freaking out because I remember reading about “getting worse before getting better” but, I wasn't feeling that confident about it when it was happening to me.

Wow.. you took the words right out of my mouth! thats EXACTLY what I have been feeling lately… I never had *any* skin tightening until 6 weeks after I started the Mino.. I too, was freaking out because although I had read about how you may get worse before you get better, I guess I didnt think that would happen to me, and when it did, I didnt feel AT ALL confident about it, either!

This has been causing me an untold amount of anxiety lately, and the last things I need are poor diet, stress, anxiety and depression..  THANK GOD for this board, because I was able to come here and talk to Cheryl F and Maz and sooo many others who were kind enough to share their experiences with me; not only that, but I searched old posts and stories of others with SD, and took great comfort in the fact that they too had gotten worse, ONLY TO GET BETTER, and see their symptoms — like skin tightening — reverse and STAY GONE!   what a relief to read those posts and to have those talks with people just like yourself!

I must tell you, this place is the only thing that has kept me from completely losing my sanity.

When I read posts like yours, it goes SO FAR toward reducing my stress level, because its just more reinforcement that YES others have walked this road before me and have experienced the EXACT SAME THINGS as what I am going through, and have come out on the other side, healthier and happier every day..  what a gift it is when people like yourself choose to share their experiences with others!

I will definitely do as you say, and get my rest, even though I dont need NEAR as much as I did before…  and now that I feel better mentally, hopefully I can stop the stress eating that has been haunting me, and get back to a healthier diet. ( I am one of those folks who runs to food to calm myself, and the food I run to certainly isnt of the “carrots and celery” type, if you know what I mean! 😯 )

Again, thank you for your post and your VERY inspirational picture from your “dimples” thread..  as good as early Christmas gifts!!

 

Connie

[musher]

JB, I too had a reaction to the Mino with increased pain and rash. My doc changed it to Doxy and I started out with 50 mg until I could get up to the 100 mg M/W/F 2 x a day. My fingers continue to be swollen and give me great pain. I am off and on steriods and hoping this will end soon. I am looking at carpel tunnel surgery which I dont want but am being told I will end up with perm. damage if I keep waiting (2 years now) I had an IV run in Feb and now starting oral Clindy weekly. I have MCTD, Lupus, Raynauds, Sjogrens, Carpel tunnel. . all in one visit to the doc. I continue to run my sled dogs in our Erie, PA winters but take extra precautions with heated gloves. The pain is always there regardless the reason (diseases). I am interested in your travels through all this as far as ds, meds and how your doing. And anyone elses input for that matter. I would try the different antibiotic at a low dose. Keep us posted.

Musher

 

[Kim]

Hey Musher,

Just wanted to pass along that I too had severe carpal tunnel in both wrists at the beginning of my ordeal with Scleroderma/RA/Lyme and my symptoms now have totally abated.  My treatment took the best part of five years with a host of different abx, but now there is no trace left of carpal tunnel.

Before you consent to surgery, I would urge you to pursue Lyme testing with Igenex Labs, if you haven't already done so, especially since you're from a Lyme-endemic part of the country.

Take care…..kim

[musher]

Hi Kim, thanks, Iactually am interested in your story also as I read your thread and it sounds a lot like what I am going through. I am going to ask for the Lyme testing as you suggest. I do feel better since the AP treatment but my worst complaint has always been my hands. The AP helped yours? No surgery or anything else? Your journey is a happy one now, I hope that I follow that direction too. Thanks again.

musher

[Kim]

Musher, you are welcome.  My hands were really bad at the beginning.  I couldn't even turn the ignition key in my car with one hand.  My hands show some permanent joint damage in the small joints, but no more pain.  I also thought my shoulder joints and hip joints were going out because I had tons of pain and limited movement.  All of that is gone with no surgery.

There are many Lyme docs in Pennsylvania so let us know if you'd like the list.

Take care…..kim

[JBJBJB]

[user=1082]musher[/user] wrote:

JB, I too had a reaction to the Mino with increased pain and rash. My doc changed it to Doxy and I started out with 50 mg until I could get up to the 100 mg M/W/F 2 x a day. My fingers continue to be swollen and give me great pain. I am off and on steriods and hoping this will end soon. I am looking at carpel tunnel surgery which I dont want but am being told I will end up with perm. damage if I keep waiting (2 years now) I had an IV run in Feb and now starting oral Clindy weekly. I have MCTD, Lupus, Raynauds, Sjogrens, Carpel tunnel. . all in one visit to the doc. I continue to run my sled dogs in our Erie, PA winters but take extra precautions with heated gloves. The pain is always there regardless the reason (diseases). I am interested in your travels through all this as far as ds, meds and how your doing. And anyone elses input for that matter. I would try the different antibiotic at a low dose. Keep us posted.

Musher

 

Musher,

I am so sorry you have to deal with a lot of pain. I know what you are going through. I feel for you. Interesting, your symptoms are like what I have, except I don't have Carpel tunnel yet. Just last year, I was also diagnosed with low thyroid function. I am sure it is part of this MCTD. When I took a test of vitamin deficiency, I was told my zinc and anti-detox levels were very low.

I tried to stay away from steroids. I also read that doxy may cause cyst (???). So I am not going to take doxy until I do more research on it.

My lungs are not doing well, so zithromax is what I use from time to time. I am anxiously waiting for the confirmation test of #489 (of band 31). 

Winter is very hard on my Raynauds which I found out two years ago. I found ginger tea helps. Your area must be really cold during the winter. My in-laws live in Syracuse, NY. We travel through Erie on I-90 from Indiana each year. The lake effect is really bad for traveling.

Hope you have a better day!

JB

 

 

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