IV therapy in Iowa

[cathie]

We are scheduled to meet with Dr S. the week of Nov 16th for my daughter to begin IV clindamycin treatment. Does anyone have experience with Dr S that they could share with us? Tips about the town of Ida Grove? We would be most grateful for any help you can give us.

** We’re new to posting on these boards, the patient is my 15 year old daughter, on mino 100mg
twice a day since July 2015. Labs identified a positive ANA, centromere pattern, considered
highly suspicious for sclero – we did no further diagnostics but went straight to AP. My husband’s
RA was cured more than 8 years ago following a two year course of minocycline prescribed by Dr Gabe
Mirkin.

Cheers, CMF

*Patient is our 15 year old daughter. Presented with joint pain in 6/2015 five years after onset of Raynaud's. No obvious skin involvement. Positive ANA 1:320, centromere pattern, suspicious for scleroderma/MCTD; low white count; low vit D; normal ESR (sed rate): negative Lyme western blot. Tested positive ASO and M. pneumoniae IgG 10/2015. Minocycline 100mg 2x day July 2015-March 2016. Now Mino 100mg 2x MWF; Azithromycin 250mg 2x Tu Sat. 1mg Naltrexone at bedtime, 10/2015; increased to 2m

[Martina]

Cathie,
I’m considering making a visit out to see Dr. S as well for my 10 y/o son who has tested positive for SD. He has no outward signs yet but lots of aches and pains, etc. Has your daughter started minocycline yet?

[cathie]

Hi Martina,

Yes, my daughter is on minocycline, she started in early July. Beginning a few months prior she complained of joint pain. That was her only presenting symptom though she has also had relatively mild symptoms of Raynauds for the last several years. Blood work in June identified a positive ANA, centromere pattern.

She will have IV clindamycin treatments with Dr S beginning November 16th. It is a major undertaking for us, but I’m hopeful that the IV treatment will be a real breakthrough for her recovery. She is a sophomore in high school and the autoimmune condition is taking a huge toll on her life. She is not able to do many of the sports and activities that she loved. Her grades have suffered, too. All in all it is a very hard time.

Best wishes to you & your son,
Cathie

Cheers, CMF

*Patient is our 15 year old daughter. Presented with joint pain in 6/2015 five years after onset of Raynaud's. No obvious skin involvement. Positive ANA 1:320, centromere pattern, suspicious for scleroderma/MCTD; low white count; low vit D; normal ESR (sed rate): negative Lyme western blot. Tested positive ASO and M. pneumoniae IgG 10/2015. Minocycline 100mg 2x day July 2015-March 2016. Now Mino 100mg 2x MWF; Azithromycin 250mg 2x Tu Sat. 1mg Naltrexone at bedtime, 10/2015; increased to 2m

[Martina]

Cathie,
I’m so sorry to hear about your precious daughter. I know this is as heart breaking for you as it has been for me. Fortunately your daughter is at a common age for minocycline use (acne). I’m concerned about my son taking minocycline because he is so young and his teeth and bones are growing. He’s still a little boy as far as his physical appearance. Has the minocycline made a difference yet for your daughter in how she is feeling? I know it’s still so soon too see much improvement since she only just begun treatment in July. If you don’t mind my asking, are you traveling to see the Iowa doc to get the IV’s for his experience in dealing with rheumatic diseases or because you can’t find a local doc for that treatment. I also can see my son’s grades and desire to try hard waning. I’m sure its because he doesn’t have energy or something on his body is “bugging” him. I’d love to hear your experiences as well with traveling to Iowa. We are in Utah. I’d have to fly because it’s just too far to drive…
Kind regards,
Martha

[cathie]

Martina,

We have a wonderful family practice doc here in Virginia who has prescribed minocycline. She is not experienced with AP but is holistic and open-minded. She added low-dose naltrexone [1mg at bedtime] just a week ago and I think I now see a certain lightness in my daughter that has been gone for some time. Though she reports that there is no difference in the joint pain, my daugher seems to be a little bit better. It is difficult to explain, but I do think there is a slight improvement in her demeanor.

We are flying to Dr S. because he offers the IV therapy and a chance to meet with an AP doc who has extensive experience treating autoimmune disease. Anecdotally, it seems that scleroderma seems to take a bit longer to find improvement with AP than JRA or some of the other auto immune conditions. Given that Dr S. is semi- retired and seems to leave the cold behind for at least some of the winter, this opening in November might be our only chance to see if the IV therapy would be a kick start to her minocycline protocol. We have a big, busy family and I’m not sure when it would be easy to be away but this one week is almost manageable. My husband and I just decided that it would be better to get out there and see if the IV therapy would make a difference for her than to wait months [when she may continue to be in pain] and wish we had pushed harder to get to Iowa. It just seems worth a shot.

Best, CMF

Cheers, CMF

*Patient is our 15 year old daughter. Presented with joint pain in 6/2015 five years after onset of Raynaud's. No obvious skin involvement. Positive ANA 1:320, centromere pattern, suspicious for scleroderma/MCTD; low white count; low vit D; normal ESR (sed rate): negative Lyme western blot. Tested positive ASO and M. pneumoniae IgG 10/2015. Minocycline 100mg 2x day July 2015-March 2016. Now Mino 100mg 2x MWF; Azithromycin 250mg 2x Tu Sat. 1mg Naltrexone at bedtime, 10/2015; increased to 2m

[Martina]

I had no idea that he was semi retired! Time sure does fly…I talked with him a few months ago. I told him my son’s situation and he said he’d put him on minocycline along with IV’s. I’ve hesitated because so far, I’ve been able to palliate his symptoms with bovine colostrum and bovine collagen (i.e.: jello or collagen that I mix with warm tea, etc). I also give him acidophilus and enzymes, fiber gummies for his constipation. It’s amazing to me that he can seem “normal” running around and playing like a normal 10 y/o boy and then feel tired and lethargic the next minute. I know the supplements are only palliating and holding back the inevitable but I’m trying to give his body a chance to grow a bit more. He came home today again and said he wished he had come home early because his chest hurt again and his spine. I try not to react because he watches me and knows it bums me out. He doesn’t know anything about his dx. I also have scleroderma and have for years. That’s how I knew the symptoms he was having were more than “growing pains”. My husband still puts his head in the sand. I know he knows but it seems like since he’s watched me for so many years, he’s not as alarmed about these symptoms. Well, I look forward to hearing about your daughter’s visit with the good doctor. Is she currently on the full 100 mg/2X/day?
Much thanks,
Martha

[lynnie_sydney]

Hi cathie

To save you having to post about your daughter’s history each time you post or reply, you can create some information in your user signature. To do that, run your cursor over your name – bottom right of your screen – and some options will come up. Select Edit my profile and then you’ll go to your profile page. Scroll right down to where it says signature and fill in that box with some information. Click on update when you’re finished and this info will come up at the bottom of every post you make : )

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)

[cathie]

Thanks! I’ll do that.

-CMF

Cheers, CMF

*Patient is our 15 year old daughter. Presented with joint pain in 6/2015 five years after onset of Raynaud's. No obvious skin involvement. Positive ANA 1:320, centromere pattern, suspicious for scleroderma/MCTD; low white count; low vit D; normal ESR (sed rate): negative Lyme western blot. Tested positive ASO and M. pneumoniae IgG 10/2015. Minocycline 100mg 2x day July 2015-March 2016. Now Mino 100mg 2x MWF; Azithromycin 250mg 2x Tu Sat. 1mg Naltrexone at bedtime, 10/2015; increased to 2m

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