Back in Ida Grove- Dr. S is a miracle worker

[sjess]

Hey Julie,

Did you get home okay then? Sorry to hear you've still got that rash! Hope the medicine is working and it goes away soon.

The IVs seem to be helping. I am having minor aches and pains in my joints which I take to be a herx rxn to the medicine. I'm anxious to see what will happen.

It is good to be home and in my own bed again.

Take care!

Sharon

[ajohnson]

Hi Julie,

Started my Minocycline yesterday and so we will see what happens. So far so good. I hope you are doing better with your yeast infection=)

ajohnson

[BJK7493@aol.com]

Hi Tonya, I am still itching like crazy.  The joint pain is much better though.I have contacted my Rheumatologist to see if there is anything he can do for me. I can't take much more. I told him I would not go back on the Methotrexate but I was open to other options.  How are you feeling? What were your first symptoms of this terrible disease?  Mine started with what I thought was carpal tunnel! What doctor do you see here in DSM?

Julie

[mschmidt]

Julie,

I'm sorry to hear you're still having itching issues, as well as ended up in the ER in Ida Grove.  If it makes you feel better, I ended up in the ER with terrible heart palps and dizziness on the 2nd day of my clindy iv's.  I thought I was going to have a heart attack!  It turns out that it was a herx–I remember the nurses being all concerned because I was having terrible pvc's but, Dr. S came in and smiled at me, telling my husband that I was ok, and gave me some oxygen.  It's no fun being in a strange place, feeling like crap, that's for sure! 

I hope you get your itching under control.  I had uncontrollable itching for 3 months last summer, and it drove me nuts.  I got a prescription from my doctor but, nothing seemed to help.  It just went away one day, and has never come back.  Interestingly enough, my skin loosened in the areas where I itched, and my theory is that my nerves and sweat glands that were crowded out with collagen, actually came back to life.  Your body also could be overloaded with toxins/die-off from the treatments so, make sure you detox in any way you can.

Maria:)

[Tonya]

Julie,

I see Dr G. at the Mercy Arthritis Center. Who do you see?  He is nice and all but doesn't believe in AP therapy.  Still practices old school meds, and refused to talk about AP. My DM started out as discoloration on my biceps and later moved to my legs. The muscle weakness started several months later.

I couldn't take methotrexate either.  Too many side effects.

I have started water therapy and it seems to work for but still in the early stages.

Tonya

[BJK7493@aol.com]

What type of detox do you do? I am alittle scared to do anything because my potassium seems to drop dramatically and that is scary.  I know how you felt being inthe ER in Ida Grove. I knew something was wrong because of all the muscle cramping ect. They were very nice to me there though. I am just so disappointed that I did so good for 3 months and now I am dealing with this rash that is everywhere! I am still trying to work fulltime and it is making me crazy! Your rash went away in 3 months? What did you use on it? I am on prednisone 30mg, benedryl 3x daily, allegra D and visteral-and I still itch!

Julie 

[BJK7493@aol.com]

I see Dr. B. at the Mercy Arthritis center. I haven't seen him for 3 months though.  I did not tell him I was going to do AP therapy. I did e-mail him yesterday and confessed to him what I had done and asked if he would help me out with this rash.  I can't get in to see him until August 30th. I will not do Methotrexate ever again.  I thought I was dying along with having steroid psychosis. I had a skin biopsy for the diagnosis and it took 5 months to heal and noone would do anything about the open sores I had. I have some muscle weakness but it is more of the skin issues for me. I live in Johnston.  What part of Des Moines do you live in? I am 47 yr old and married with 1 17 yr old daughter. I am a nurse at Camp Dodge for the military.  I would love to meet you for coffee some day if your interested.

Julie

Edited to remove doctor's full name as per Forum Guidelines. Thank you for your understanding. RBFV

[Tonya]

Julie,

I live in Waukee and would love to meet up with you. I am 41 and have a 14 yr old son.  I am currently not working . I plan on subbing when school starts next week.

Tonya

[PhilC]

[user=2307]BJK7493@aol.com[/user] wrote:

What type of detox do you do? I am alittle scared to do anything because my potassium seems to drop dramatically and that is scary.

Hi Julie,

I think you need to determine why you developed low potassium (hypokalemia).

For information about hypokalemia:
http://www.mayoclinic.com/health/low-potassium/MY00760
http://www.emedicinehealth.com/low_potassium/article_em.htm
http://www.medicinenet.com/low_potassium_hypokalemia/article.htm

You mentioned that you are taking 30 mg of prednisone. Have you been taking that all along, or did you bump up the dose recently because of the itching?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[BJK7493@aol.com]

Phil, I went back to see the rheumatologist yesterday as the rash continues to spread.  He was agreeable that the Mino has helped the joint swelling ect but states the rash is a full blown dermatomyositis. The only 2 things I can do now are go back on the chemo-Imuran and bump my steroids up to 60mg daily or do IVIG which they are trying to get approved threu the insurance company.  But at $10,000 a dose I doubt seriously my insurance company will pay for it. He took 9 tubes of blood and was checking a myositis panel and a bunch of other labs to see why my potassium keeps dropping.  I am very depressed now.

Julie

[lynnie_sydney]

Julie – have a look at Eva Holloway's story. She has DM and has had remarkable success, though it's not been a straight road. http://www.rbfbb.org/view_topic.php?id=2338&forum_id=3There are also some DM success stories at the http://www.rheumatic.org site – just click on medical histories. There is hope, Julie, though I'm sure all this must seem overwhelming to you right now. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[sjess]

Hi Julie,

I'm so sorry you are having to go through this! :crying:  Hang in there.

Sharon

[BJK7493@aol.com]

Thanks for the words of encouragement! I don't know what I would do without this support group. I need to regroup and start thinking positively or this disease will get the best of me.

Julie

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