Dr. "S" in Iowa

[A Friend]

[user=266]JBJBJB[/user] wrote:

I saved your article and I will definitely give it a shot. No matter what kind of health challenge we have, this rememdy will work for every one including healthy people.

I keep my eyes open on your articles. You are my whole health well being counselor :roll-laugh:!!! LOL JB

JB,

You're too kind.  Rather than a “health counselor”, I consider myself an “experienced sleuth” — after searching daily for about 17 years  looking for answers to my sudden onset of chronic illness — like a fire that would not die! I also had an apparent inherent interest in health and nutrition, plus an avid interest in these many years before that, because my groom early-on had some problems, and both sides of his family had a history of heart problems. 

I understand more and more when people say they have benefited from having had a certain diagnosis and getting an education about it.  I was certainly pushed to find answers for both of us.  And, I think I've inherited this interest: a grgr grandfather was an early physician who made some of his own medicines; and his dau., my great aunt, was one of the first midwives and herbalists in a large city in the early 1800's (have an article from the front page when she died at over 100 years of age). 

Am hoping the article and my “sleuthing” pays off for many of us. 

AF

[maz.aust]

Hi JB,

The good news in all of this is that AP treats all of those problems, perhaps you need a tweak of meds ? 

No matter what happens you have to know we are all pulling for you.

Maz – Aust
ps – you haven't said, but since Jan has it got worse or is it staying the same?

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[JBJBJB]

It has been worse after I stopped plaquenil, Maz. I also got some more symptoms after I got on the minocycline.

My shoulders' joints can no longer move freely

My back of my skins is extremely itchy

Several areas of my body have turned blue.

I do feel having more energy however, this is due to I found I had low thyroid problem after I was on the minocycline and once I started thyroid armory, I feel like I have more energy.

Thanks for your encouragement

:JB

[JBJBJB]

Hi All,

Here is a little update.

I have not taken any minocyclin for a month now. My sharp pain was gone. I still have swelling issues. But I don't feel miserable any more. Most of my joints are still hurt a little bit but not as bad compare to be on minocyclin. My rashes were all gone. I did not have constant rashes. I use “no pain spray” I saw from TV. It works well for me. Most amazing thing is I don't cough much!!!!

I took AB Histone test and it came back negative. However I know I wasn't feeling right and I had a lot of pain. Also my DNA test came back normal.

I speculate perhaps my yeast infection due to minocyclin disappeared after I stopped taking it??? Or perhaps I was allergic to minocyclin?

But I know that by not taking the minocyclin is not going to be a long term solution.

JB

 

 

 

 

[kat]

Hi JB! Glad to hear you discoved the source of some of your problems. Maybe you just need to find a different abx for yourself. I quit the doxy long ago and its taken awhile but have finally found which abx work best for me. Maybe the tetracylcines just are not the abx that your body needs.

[daughter-sine sclero]

So good to read the posts from you guys.  I took my IV clindy last month, but my site went bad and I only took 3 days, as opposed to the 7 days per month I have been taking for 5 months now.  I feel pretty lousy now.  Very short of breath, very dizzy and pain in back and joints.  I am suppose to start the treatment tomorrow – another 7 days straight (takes 1.5-2 hrs.).  Am hoping it well help.  I am sending all of you my good thoughts, wishes and prayers.

VB-Nicole's Mom

 

 

[Kim]

Hi JB……..so nice to hear from you.  You've been away all summer, hopefully spending some quality time with your family.  Last we heard from you your cough was pretty bad, so I'm thrilled to hear there has been improvement.  Fingers crossed your immune system is now helping out again. 😕

Hi VB…….so nice to hear from you too.  Sorry to hear the IVs are giving you fits.  My veins didn't take to them either. 🙁  Two things that have helped tremendously for me have been enzymes (I take Neprinol and Rechts-Regulat) and frequent use of my infrared sauna.  The enzymes thin the blood and the sauna is great for killing bacteria and detoxing the toxins left from the dieoff.  I credit the sauna for a marked improvement in circulation.  My Raynaud's is almost totally gone.  If you haven't used either of these, I would strongly recommend you talk to your doctor to see if he would have a problem.  May just make a difference. 😉

Sending you best wishes, VB, and please give our regards to Nicole. 🙂

Take care…..kim

[Nico]

Hi JBB.

So do you think the minocin was causing all these side effects?
What does your Dr. think about all this, I recall you went to Dr. S in Iowa ?
I was just talking about this to others, people that react to minocin badly, I never hear much about it, but I am sure there are some that are allergic to it, then what could they use differently?

Nico:

[JBJBJB]

Hi Kat, Kim, Victoria, and Nico!!!

I took my first 100 mg minocyclin this morning after stopped taking it for a month. I am doing okay but I had mild rash again. I have not talked to Dr. S yet. I am planning on doing so. I want to wait for few weeks and see if I am getting worst after I am back on the mino. I am planning on taking it one 100 mg per day.

Victoria, hope and pray your treatment will go well. I am sorry to hear you are not feeling well. Keep you in my prayers.

:blush:JB

 

[Nico]

JB

You know whats best, what is working for you & what is not. My prayers & best wishes are always with you, you know some people are allergic to minocin, maybe this is your case! Maybe you need to try something else.

Nico

[JBJBJB]

Yes, I agree. I am trying to rule out my allergic reaction by stop and re-enter the minocyclin. This will give me some clue, I hope.

This is the second day I take the mino, and I am coughing like nuts. I also have rashes, blister type of rashes. Not a lot, but a few around my hands.

 Thanks for the prayers. I will write back.

JB

 

 

 

 

[alera4]

Hi everyone, thought this might be the most appropriate place for my post.

I'm sitting at the Super 8 in Ida Grove right now using their free wireless. My mom (OkieTam) drove me the 7 hours up here on Thursday. Dr. S was nice enough to accomodate my school schedule and see me Friday-Tuesday AND over a holiday weekend, at that!

He is a very, very nice man and took the time to listen and really explain things. We spent probably an hour talking with him Friday morning before my IV treatment got going.

I have had 4 of them so far. The port-thingie is in my right forearm. It bothers me a little bit because I'm not used to it and, honestly, it sort of creeps me out! LOL But the nurses are all very chatty and nice and the treatments have been okay.

The first day, both of my treatments were less than 20 minutes. Today, they had to hook me up to the volumetric infusion pump deal to get it going. It just wasn't moving very much, I guess. But the site isn't getting inflamed or anything and is only a little tender right at the insertion point. The first cold saline they pushed through my port this afternoon was a little unpleasant, but it got better. The nurse said the IV could've been moving around a little bit and we probably got it back in the right place.

I hope it doesn't hurt at anymore of the treatments, and I hope I don't have to move sites for my IV port. Other than that, I've been fine. Don't feel any better or worse yet. A little tired, could be the hotel mattress. And that bitter/metallic taste!! YUCK! There's no cure for that except masking it with gum or food and waiting it out.

We've been to Sioux City twice and it's a pretty nice town for shopping, dining, etc.

If anyone is on the fence about coming to see Dr. S, I would tell you that for me, so far, it has been good and I would suggest anyone else giving him a try! 

[JBJBJB]

alera

I am so happy to hear you made it to Ida Grove. Please tell Dr. S that “JB said Hello” to him. He will stop by to visit you during your last day of IV. If you have any questions and concerns, please tell him. He is a great man with compassion of helping us. God bless him.

I hope your rest IVs will go well. It takes few months to feel better. Did your mom also get the treatment by Dr. S, too? Did your neighbor go with you girls? You and your mom made a very smart decision to visit Dr. S.  In my opinion, it's a very well worth investment. Dr. S is THE expert in treating RA using AP. You are very young and just dx, Dr. S believes patients like you have a better chance to recover. I pray you will be in remission soon.

Please keep us posted. If you have any questions, feel free to ask all of us.

JB

 

 

[alera4]

JB

I will tell him you said hello! My mom didn't get the IVs.. She has a much more mild case and feels that the minocycline is doing the trick for her! I wish her neighbor would have been able to come, but she just had carpal tunnel surgery followed closely by a knee surgery. She did call yesterday to say that her follow-up with the knee surgeon didn't go so well.. He said she should been recovering faster, and that upon reviewing her case again, he felt that alot of her problem could be due to damage from the RA. She is already asking if my mom will accompany her to Ida Grove in a few months when she is in a better position to go!

I am looking forward to getting this IV stuff done with and getting home to hopefully start feeling better in a few months. I haven't herx'd on the minocin and so Dr. S doesn't seem to think a herx is likely with the IVs. Fingers crossed, I still don't feel any worse! But I have been going to physical therapy at home, so that may be helping me as well.

My fingers are all still knobby and swollen, my right thumb keeps getting “stuck,” I have a weird-looking lump of swelling on my left wrist, my knees ache, my shoulders are borderline unbearable, and my ankles swell up just walking around the mall in Sioux City for a little while. But hey, that's how I was when I got here, too. So I'll take “no change” as an improvement!

Thank you very much for the well wishes, and I want you to know I read this WHOLE thread just now to follow your progress and I am hopeful now having read it!

[JBJBJB]

Thank you for bringing my warmest greetings to Dr. S.  I am glad to hear your mom has a mild case. I hope she will soon start with AP and hopefully it will get under the control.

You will need to stay away from the sun after you are on minocyclin. Drink a lot of water after you take the medicine. Also, don't lay down right after your minocyclin. It could “burn” your throat. 

I like your positive attitude. You will beat this nasty disease. JB

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