posted
Hi my daughter has been on 100mgs of minocycline for lyme disease for 1 year and it has helped with her joint pain tremendously. In the last week she has developed purple and red pinpoint dots on her arms and legs. Dermatologist did biopsy and feels this could be vasculitus as a result of minocycline and wants her off immediately. Our lyme literate doc disagrees and says the rash could be from lyme or coinfection. We have no choice but to stop minocy. Within a week of stopping her antibiotics, pain is going to return in her joints. What do we do....
-------------------- doreen Fishman Posts: 26 | From Toronto, Ontario | Registered: Nov 2011
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Can you not try doxycycline, or another antibiotic?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Petechaiea are a common symptom of babesia and cherry angiomas are a common sign of bartonella.
If the dermo was not educated at ILADS, then the best advice is from your LLMD.
As soon as a non lyme literate doc hears about abx use beyond a week, they freak out and envision sure death and dismemberment from abx use.
Whereas a lyme literate may be expecting more coinfection symptoms to "pop up" as treatment progresses.
An LLMD is a doctor PLUS is also educated in treating tick borne illnesses...
Blows a non LL educated doc right out of the water...
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Obviously I can't tell if they are the same by my son had something very very similar and it went away. I would not stop minocycline unless it were absolutely necessary, especially if it has been effective. I just googled vaculitis and it was nothing like the images I see there. It was very small and pinpoint. Your derma may be right, but the reason may be due to attacking the Lyme and it should go away like it did for us, if that is the case. Lyme can give some strange skin reactions.
Posts: 360 | From Massachusetts | Registered: Dec 2012
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posted
Minocycline is good because it reduces inflammation. That's probably why the joints feel better. Vitamin d can also help joint pain.
Mine went away as soon as I started taking vitamin d
-------------------- Diagnosed with Lyme 4/7/14
KB Posts: 87 | From Townsend, MA | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I had a bad skin reaction from minocycline. I developed an allergy to it.
I'd stop the minocycline just to see if the symptoms are connected, but that's me.
"Our lyme literate doc disagrees and says the rash could be from lyme or coinfection."
Is the doc definite on that or is just throwing that out as a possibility? Has the Lyme doc seen the rash?
Vasculitus sounds scary. If it's not the minocycline causing it, you can always start it up again. I like the suggestion for trying doxycycline instead just so you can figure out what's going on.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Vasculitus can be caused by lyme. Liver support (anti-oxidants & magnesium can often help).
I could not tolerated minocycline at all - but due to the vestibular and hearing side-effects.
It may well be the Rx so do still consider that . . . or it could be something else and the scales just tipped - I stumbled upon this just yesterday:
A MYSTERIOUS RASH ON A WOMAN'S HANDS & LIPS STUMPED SPECIALISTS
The Washington Post - Health & Science - July 28, 2014
- By Sandra G. Boodman
Excerpts: . . . At her second appointment Zirwas examined her back, confirming his hunch: The only strong reaction Omiatek displayed was to a chemical called
methyllisothiazolinone, MI for short,
which is used in high concentration in hundreds of beauty and personal care products.
In Omiatek’s case, MI was in the new brand of “sensitive” baby wipes she had begun using a few weeks before the hand rash erupted.
The pattern of the rash, which was on her right, dominant hand, matched the way one would use a wipe. MI was also in the dishwashing soap she used as well as in her soap and shampoo. . . .
. . estimates that about half of the approximately 300 MI allergy patients he has seen were using wipes. . . .
. . . Unlike shampoo or soap that is rinsed off, the substances in toilet wipes remain on the skin, in a part of the body where evaporation does not occur.
“It gets driven into the skin, perpetuating the problem,” said Zirwas, noting that it takes months for the rash to clear entirely after a patient stops using the product. . . .
. . The concentration of MI in some personal-care products was increased about five years ago to replace other preservatives, including formaldehyde, which have been linked to health problems.
“People thought it was going to be” an effective replacement, Zirwas said, “but around two or three years ago, we started seeing an incredible increase in the number of people allergic to it.” . . .
. . . She also learned she was allergic to the brand of “sensitive baby sunscreen . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
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Member # 38323
posted
Thanks Keebler, great article on personal care products and rashes. I found it interesting that one of the earlier doctors the patient saw tought it might be stress. That's a clueless doctor who blames the patient when he can't figure out what's wrong.
I'm allergic to nickel and MI too. The allergist helped me figure that one out.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yeah, Judie.
Glad you mentioned that - it really struck me, too. That "stress?" was like the second question ahead of so many others of greater importance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I even have a handout from a dermatologist (a good dermatologist) saying that skin rashes are NOT caused by stress and it can be cruel when someone makes that assumption.
I've kept that handout for several years just to remind myself of the idiocy of people.
Posts: 2839 | From California | Registered: Jul 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
"have no choice but to stop mino"
I don't understand why. You're dermo is not lyme literate. Don't take her advice. Ever.
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