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» LymeNet Flash » Questions and Discussion » Medical Questions » don't know what to do...(Reg Doc vs. LLMD) Opinions please.

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Author Topic: don't know what to do...(Reg Doc vs. LLMD) Opinions please.
yankees237
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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  |  IP: Logged | Report this post to a Moderator
lpkayak
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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.

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bcb1200
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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 80% +/- most days.

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BackinStOlaf
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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

 -

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tiffagoo
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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.

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marypart
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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.

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yankees237
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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.

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sutherngrl
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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.

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yankees237
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marypart, how can i tell if it's fungal or not? i

don't have any symptoms of candida in the gut (no

abdominal pain, bloating, etc) but i do get a

little white stuff in the mouth in the mornings.

at first i was thinking maybe it was eczema from

candida, but of none of the 3 doctors i saw even

mentioned eczema.

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marypart
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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.

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yankees237
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no, nothing oral. just following a candida diet and taking a lot of acidophilus.
Posts: 132 | From jersey | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
yankees237
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i think im going to stop the rifampin and take just doxycycline for the next few weeks.
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lou
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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.

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yankees237
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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).
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lou
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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.

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yankees237
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you're right lou, i probably shouldn't have said

anything. chances are i won't be going back

there, at least for a while so i don't think

anything will come of it.


as far as my situation, what do you think i

should do? clearly it is lyme related, since ive

never had this type of situation before. and all

signs point to rifampin, since it's the only

medication im on. my LLMD doesn't seem to think

it's rifampin though, which is why he started me

back on it, after i had taken a 5 day break. so

what do i do? that's why i was going to take the

doxy while im taking a break off the rifampin, so

at least im taking something until -hopefully-the

rash goes away.

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yankees237
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by the way, i had been on rifampin for about a

month before this rash started. is it still

possible the rifampin is what caused this? i

always figured a reaction would be within the

first week or so.

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lou
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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:

http://www.aacijournal.com/content/6/S1/P22

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yankees237
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thanks for all your help lou. hopefully it will go away.
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lpkayak
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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.

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Haley
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Yankees - did you ever find out what caused this rash? Was it the Rifampin?

I'm just looking through old Rifampin posts.

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