posted
ive been being treated by a LLMD for about 3
months. As far as lyme goes, I feel pretty good.
Ive been on Rifampin for about 2 months now and
on a day to day basis, I don't have any symptoms.
Until about 3-4 weeks ago i broke out in this
rash all over my body. These crusty/oozy/blisters
are eveywhere. Dermatologist has no clue what it
is = prescribed me topical steroids (didn't take
them). LLMD has no clue what it is = told me to
stop Rifampin, which I did for about 5 days,
didnt help so I'm back on it...my regular doctor
I came clean with , told her I've been seeing
LLMD and taking antiobiotics, she was quite upset
at this LLMD for prescribing me Rifampin for 2
months, she tells me to stop taking it, and
prescribes me 3 weeks of Doxy and some type of
oral steroid.
So i don't really know what to do. The rash is
driving me crazy, and nobody seems to know what's
causing it. On one hand I don't want to stop the
Rifampin because Ive been feeling almost 100%,
but i can't really go on with a rash all over.
(by the way , when the LLMD took me off Rifampin
he prescribed me Clindamycin, which I more or
less refused to take)
Posts: 132 | From jersey | Registered: May 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
stick with the llmd
some take doxy with rifampin...but i would do what the llmd says...he probably has a plan
DO NOT TAKE THE STEROIDS OR YOU WILL GO BACKWARDS AND HURT YOUR CHANCE FOR TOTAL CURE
why are you efusing clind?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Stick with LLMD and don't take steriods. Period.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
No steroids!!!!
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I just wanted to let you know that I had an allergic reaction to Mepron. I began to get a rash over my ENTIRE body that itched a little. No oozing stuff!!!
But this happened 8 days after I started the Mepron. I would suggest staying with your LLMD. They are experts in treating Lyme. I have been told countless times by my primary care doctor to stop seeing my LLMD. And I won't do it.
Posts: 151 | From california | Registered: Dec 2009
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posted
Is it fungal? Are you on anything to prevent yeast or candida, like Nystatin or Diflucan?
You could try anti-fungal cream on it... just in a section. I would get generic Lotrimin and generic Lamisil and just smear it on.
We've been doing that with my son's rash near his IV site and it works very well.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
Yea im definitley not taking the oral steroids. I
wasn't even comfortable taking the topical
steroids, which my LLMD said was okay actually.
what do you guys think of the idea of stopping
the rifampin temporarily and taking the 3 weeks
of doxy my reg doc prescribed me just to see if
the rash clears up. this way ill still be on ABX
the whole time and i can find out for real if the
rifampin is causing this? clearly something i do
on a daily basis is causing this reaction,
because it's not getting any better.
BTW, i didn't want to take clindamycin because i
heard it can really mess up your whole intestinal
area. id rather not take a chance.
Posts: 132 | From jersey | Registered: May 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am actually surprised that your LLMD would have you continue to take rifampin, just in case you are having an allergic reaction to it. An allergic reaction can be very serious. I would stop taking it for a couple of weeks to see; but would still keep LLMD over regular doctor anyday.
Also a "topical" steroid is not the same as taking "oral" steroids. If the rash is that bad I would actually use the topical steroid to see if it would clear it up.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
The anti-fungal creams are over-the-counter and you can easily find the generics right next to the brand names I mentioned above. The are in every drug store. I would just smear some on one place and watch it for a day and see if it makes a difference.
My son gets a fungal infection on his arm around the IV site... especially under the plastic, probably because he sweats so much and we hit it with those creams and leave it to air for a couple of hours. Then we put on a new dressing.
I think a fungal infection all over your body would be unusual, but it is worth a little experiment.
Are you on an anti-fungal oral? -Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
i think im going to stop the rifampin and take just doxycycline for the next few weeks.
Posts: 132 | From jersey | Registered: May 2010
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posted
Southern girl, he said the LLMD took him off rifampin.
If you are only on this drug, then it would have to be an allergic reaction to it, I am guessing, and you should stop it. But it is not always clear what is allergy and what is herx. To be safe, stop.
I think you made a mistake in telling your regular doc about your lyme treatment. This can get your LLMD in trouble if she reports the doc.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
lou i was unsure what to do. i didnt want to lie to my regular doc when she asked me if ive taken anything. i thought i should just be honest, since it wouldn't make much sense seeing her and not telling her what was really going on. and it's not like i didn't try my other options before seeing the PCP (saw dermatologist first, then LLMD with no help).
Posts: 132 | From jersey | Registered: May 2010
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posted
Yes, you were in a difficult situation. However, I have learned not to give full details on treatment to other docs, just tell them the bare minimum--what they need to know. For instance, in this situation, I would probably have said I was on rifampin, but not said how long or said less than it actually was. Non-LLMDs do not understand what is involved in treating lyme and will almost always question it.
And since you are a newby, you need more medical support than oldtimers who would probably have just stopped the drug on their own, since something was clearly wrong. It is the herxheimer thing that stumps a lot of newbies....is it an allergy, are they getting worse, treatment not working, etc. It can be any of these.
Actually your LLMD did give you help for this situation. You were taken off the drug.
Doxy will work for lyme and erlichia, but rifampin is prescribed usually for bartonella. So they are not interchangeable.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Well, I can't second guess a LLMD and wouldn't want you to rely on my opinion. If that was the only drug you were on, then it either had to be an allergy or a herx. Have heard that allergies do not always crop up immediately, that it can be delayed. I would think if you really want a better answer, then an allergist would be the one to consult.
Crusty oozy blisters do not sound like a herx to me.
Is there another drug that would hit the same thing as rifampin? That's what I would be looking at. If not, have a look at this link:
posted
thanks for all your help lou. hopefully it will go away.
Posts: 132 | From jersey | Registered: May 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes-there are other drugs and also herbs for bart
you have to be careful with the levaquin tho..and with herbs there is a lot to knoe
yankees...lyme and all the coinfections are really complicated...i will try to answer your questionsa as best i can---ive been dealing with this a long time and doing well now
its reallly hard in the beginning
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Yankees - did you ever find out what caused this rash? Was it the Rifampin?
I'm just looking through old Rifampin posts.
Posts: 2232 | From USA | Registered: Aug 2009
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