thinking about tapering off the minocycline

[troysmom]

Before anyone responds I want to be proactive about saying we do not see an AP doctor, we have a local dermatologist who prescribes minocycline but has no knowledge about how it can be used to treat such illness, he prescribes it for acne.

My son has DM so he already has issues with his skin, since we started the minocycline he has had increased skin issues, EXTREMELY dry skin, constant flaking, we have tried many ideas to help alleviate the drying, cracking and itching, not much luck.

His skin is continously drying out and cracking to the point of causing open sores.  he told me today he is just tired of it. I don't blame him.

I am thinking about taking a break from the minocylcine to see if there will be an improvement in the skin.

This is what I am worried about, he will be starting IVIG's in late September, if I take him off the mino I would want to do it with enough time before the IVIG's start, but am worried about him starting the mino back up after he starts the IVIG's……

just looking for some suggestions or similar experiences

His skin has become crusty lately, there really is no other word for it and I noticed his skin has a smell to it, I mean he is literally covered in lots of dead skin, he itches non stop, looking for some relief

Just a positive note to end this on, it has been 6 weeks since my son last fell, for a while there he was falling quite often, it is important to appreciate EVERY victory because it is a constant battle of one step forward, two steps back, if you don't keep track of and celebrate the positive it is too easy to get lost in the negative.

[Karen R]

Hi Troysmom,

Sounds to me like your son has a fungal infection. Minocin helps because it has antifungal properties but he should be on an antifungal and digestive enzymes. The fungal infection causes inflammation so anything to reduce inflammation will help, such as lots of flaxseed oil, fish oil and MSM. He needs to strengthen his immune system and NAC works well for this but he must change his diet and virtually eliminate for awhile sugar and starches as these suppress the immune system. I have learned alot as I was at death's door with the scleroderma and now doing better. I have much damage and I am slowly undoing the damage even though doctors have said it was not possible. Well it is and I am doing it and so can troy.

All the best,

Karen R

[Eva Holloway]

troysmom,

have you asked the doctor to put Troy on an anti-fungal antibiotic? Dr. K put me on Nizoral and it helped a lot. As you can see in the picture I had on the other site my hands are also very flaky, but they don't hurt or smell. I do wear RUBBER gloves when I do house work and it does keep my hands moist for a little bit. I buy those from Wal-mart, they are purple.

One thing I do every day wash my hands real well with an antifungal soap and a small soft bristel brush. I use a small hand towel and after I use it I put it in the wash with bleach for disinfeting. I then use lotion, sometimes several times during the day. I found out that using something with MSM, or other arthritis creams my hands turn red, so I stay with the Manuka honey lotion and either Gold Bond lotion or Vanicream (Walgreens).

 He my also have a synovial lining inflammation, I remember how swollen his hand looked. I am not sure what to do about that but it is part of the auto immune problem. Does he have to stop the mino for the IVIG? Maybe he can go on another antibiotic if he has to go off. There are other antibiotics out ther that work. Is there another doctor in your area that may do AP?

Sorry about his hands, I know what he is going through, my hands are a mess too. I do use the Manuka honey hand lotion which seems to help.

Eva:(

Eva Holloway

[Parisa]

Troysmom,

With all of the immune suppressants they have tried on your son, it wouldn't be surprising at all to find out that yeast is an issue.  Conservative doctors usually don't find it until it becomes very, very serious.  I believe the IVIG has helped my husband with some of his candida issues.  The IVIG helps the immune system rebalance which can also help fight the yeast.  If you truly think the minocin is causing problems instead of helping ,you could always take him off now and start a few months down the road after he has stabilized on the IVIG.  Of course, I am definitely not a doctor so this is just a non-medical opinion.  You did say that your son is no longer falling?? That's wonderful news.  You don't think that could be a possible gain from the minocin?

I know how difficult this is to navigate on your own.  Especially when you're dealing with your child.  The blows when things don't go well are doubly hard.  I know things are going to start turning around for you though.

 

 

[Trudi]

Troysmom–

Don't have any advice for you–just a whole of well wishes and prayers.  You are up against a lot of hard decisions–I really feel for you–

Best to you,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[jasonjuul]

Hi Troysmom,

  Have you tried Vitamin E oil? Vitamin E oil has worked well for me in the past in healing abrasions and cuts and has even seemed to reduce scarring.

  Sorry, pretty feeble advice but it's the only thing I could think of.

  Good luck and I'm pulling for your son to get better.

-JM

[lynnie_sydney]

troysmom – if you go to the http://www.rheumatic.org site and click on Medical Histories, there are several stories there from patients with dermatomyositis and polymyositis and their AP journey. Just thought reading through those and what worked for them may give you some fresh thoughts re Troy's regime. Best, 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)

[TischSEB]

Hi Troysmom,

That is really great about the not falling! W/his PM, my boyfriend went thru some months of falling last year. His stabilization on the IVIG brought him back from that (now he is merely unbalanced – in more ways than one, ha)- I tracked every little improvement, and I remember noting the falls had tapered – it meant a lot in terms of his independence. That is progress!

[A Friend]

Troys Mom,

Have you and his dermatologist considered that the minocin may be creating some type of healing response, and the sloughing, etc. is part of that? 

Also, is Troy consuming any type of EFA's?  (Essential Fatty Acids)  If not, these are very necessary for our health … and are especially good for skin conditions. 

This may have been discussed before, but is Troy taking probiotics daily, and in larger doses than the bottle recommends?  If not, his skin condition possibly can have a yeast/fungal overgrowth component to it which needs addressing.  If he has this problem, and his diet has a lot of sugar in it, this can be compounding problems.   

Also, if you will read up on foods/supplements, etc. that are helpful to our liver, this may be very helpful for Troy.  [Just did a search and found this on the liver that may give some clues:  http://www.ctds.info/itching.html ]

If any of the two paragraphs just above interest you, you might consider having Troy consume as a meal or a snack, the plain healthstore type yogurt, with a tablespoon of liquid flaxseed oil (also from the healthstore), with the powdered probiotics stirred in.  I also stir in at least a tablespoon of ground flaxseed, and add a tiny scoop of Kal brand stevia for sweetener, along with chopped apple, or peach, or blueberries.  I noticed an improvement in the softness of my skin all over soon after beginning this a number of years ago.  (Not known to me at the time, the basics in this concoction turned out to be what a German scientist, Dr. Johanna Budwig, found was the way to get EFA's into the cells of the body for repair.  It was an AHAA moment when I discovered this in “Essential Fatty Acids Are Essential” under Articles Important in http://www.arthritistrust.org . 

Good luck with whatever you and Troy's physician decide. 

AF

[A Friend]

Troys Mom,

Since I posted earlier, I found a published interview of a noted physician who has been treating children with multiple kinds of findings that are the basis of their diagnoses.  I had contact with her a number of years ago, when she was testifying in Congress about Autism and vaccines.

I decided to paste the link to this interview here, because some of the things she has found through testing them have also been found to be the cause of these children's problems.  Am thinking these things just may be part of Troy's problems as well.  Perhaps you'll want to share this link with his dermatologist.  And, if he thinks Troy needs testing, Dr. C. might be a good resource for the two of you.  Dr. C. is the mother of a child with ADHD, so her passion for solving these problems was triggered quite some time ago.   

[/size]

Good luck to you both,

AF 

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