DILE????

[carries]

Hi Maz! I think I might be experiencing DILE. I have had a lot of pain lately and its different than what it was before. The balls of my feet hurt to walk on and my neck back and shoulders have all been achy. My knees are super achy as well as hips. I am thinking this maybe DILE being that I had DILE as a child when I was 13 and was taking minocin for acne….once stopped pain subsided.

Do you think I should discontinue? ITs seems Im worse after days of talking mino.Should I substitute for zith?I have made so much progress and would hate to stop but I am starting to think its DILE. I did have an antihistone test and that came back negative….my ana was already positive so I couldnt utilize that test. We didnt do the anti dna test all mine prior were negatvie not sure if it was the double strand or single strand tests????

[Maz]

@carries wrote:

Hi Maz! I think I might be experiencing DILE. I have had a lot of pain lately and its different than what it was before. The balls of my feet hurt to walk on and my neck back and shoulders have all been achy. My knees are super achy as well as hips. I am thinking this maybe DILE being that I had DILE as a child when I was 13 and was taking minocin for acne….once stopped pain subsided.

Do you think I should discontinue? ITs seems Im worse after days of talking mino.Should I substitute for zith?I have made so much progress and would hate to stop but I am starting to think its DILE. I did have an antihistone test and that came back negative….my ana was already positive so I couldnt utilize that test. We didnt do the anti dna test all mine prior were negatvie not sure if it was the double strand or single strand tests????

Hi Carries,

I’d written you a long post this morning with links and then lost the whole lot, so I got frustrated and had to take a break from the computer. 😆 Will try and remember the jist of what I’d researched and looked up for you.

I was checking out your sig line and meds and what struck me is that you’re also taking Quinapril, which is a ACE-inhibiting heart med…are you taking it for hypertension? Some of the drugs that can induce DILE are in the BP med catagory and I think it might be worth considering this possibility – at following link, scroll down to just above the “fish oil” section and just above that you’ll find the following quote about this.

http://rheumatology.oxfordjournals.org/content/44/12/1473.full

“However, despite these apparently beneficial effects on SLE, several ACE inhibitors have occasionally been associated with the occurrence of drug-induced lupus.”

That said, with a negative anti-histone AB test, it’s not very likely to be DILE. On the Lupus Foundation site, there is a heart drug that can cause DILE without a positive anti-histone AB test – Hydralazine, so while I don’t think DILE would be a problem with minocycline if the anti-histone AB test is negative (just from the research I’ve done), it might be possible that some heart medications could create DILE with a negative test. Here is the info on this on the Lupus Foundation site (see page 3):

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=377&zoneid=17

“Laboratory Testing For DILE

As with SLE, most people with drug-induced lupus develop antinuclear antibodies, or ANAs, although those with a form of drug-induced lupus related to quinidine often are ANA-negative. The ANAs in drug-induced lupus are primarily autoantibodies that are able to react with a histone-DNA complex, which is the major component of the nucleus of all cells.

A special laboratory test to detect certain antibodies to this histone-DNA complex is a sensitive marker for lupus-like disease brought on by many drugs. Hydralazine is the exception, as only about one-third of people with DILE have this type of anti-histone antibody.

Although the ANA or anti-histone test can help to confirm a diagnosis of DILE, it is not useful to periodically test people who have no symptoms.

Most medications with a tendency to induce lupus-like disease also produce (at a much higher frequency) a mild type of anti-histone antibody not associated with symptoms.
There is no evidence that people who develop only ANA without symptoms are at increased risk for future development of DILE symptoms.”

Carrie, I think the only way to know for sure is to get in to see a good Immunologist/Allergist who can run the necessary tests for you. Should be covered by insurance. 😉 Would be great if this isn’t DILE from mino, because there’s lots of other classes of hypertension drugs out there…just a fellow patient word of caution, though…heart and BP drugs should never be stopped cold turkey without a physician’s advice.

The single-stranded anti-DNA test is the one for fake/DILE in combination with anti-histone AB and a negative double-stranded anti-DNA (real lupus marker). If the double-stranded anti-DNA test is positive, it’s real lupus and not the drug-induced variety.

If it does turn out to be DILE from mino, there are other tetras that can be taken instead, like doxycycline that are less likely to be a problem and, in combination with azithromycin, should work very well…though I’m presuming doses may need to be higher.

[carries]

Thank you so much for ALL THE INFORMATION!!! My dr said I could stop the quinipril. I was taking it for the raynauds. My blood pressure is good…if anything it is on the lower end of the spectrum. He could not find anything on the internet about quinipril causing dile…but I looked at all the info you gave me and if anything its the quinipril that has a moderate risk for dile while mino has low risk for dile…very interesting. So I am going to try going off that for a month and continue with the mino. I was just concerned bc the mino had caused dile in me as a child but then again I was taking it daily back then. I wrote DR S. I have never seen him but was kind enough to advise me on protocol for zith. He suggested Tues and Sat. So I will try that….who knows…maybe its even the LDN causing all this…who knows. Well I greatly appreciate all the info you gave me. Hopefully this will resolve….I was doing sooooo good!!! Darn it! Well I have been under a lot of stress so I am sure that is a contributing factor as well.

Thanks again Maz. Have a happy Thanksgiving …I can speak for all of us members here…we are truely thankful to have you and all your knowledge!!

[Maz]

@carries wrote:

I was just concerned bc the mino had caused dile in me as a child but then again I was taking it daily back then. I wrote DR S. I have never seen him but was kind enough to advise me on protocol for zith. He suggested Tues and Sat. So I will try that….who knows…maybe its even the LDN causing all this…who knows.

Carrie, many thanks for your lovely Thanksgiving wishes! I hope you had a great holiday with your loved ones, too. 🙂

When you had DILE as a young girl when on mino, was it confirmed by labs? Just wondering if it might have even been a herx way back then? Remember the story of the teen girl in Scammell’s book? She wasn’t showing overt signs of rheumatic disease, but Brown suspected her fatigue was the start of it. He treated her to avert a rheumatic disease down the road. The reason I’m asking is because I was told that once a person gets DILE, they will never be able to tolerate the offending drug again….it’s just the way that person’s body metabolizes a particular drug and it doesn’t seem to be dose dependent. I.e. even smaller amounts of the drug produce the same reaction so wouldn’t matter if a person was pulsing or daily dosing. When my DILE began, I was on 100mg mino twice daily on just MWF. As the symptoms ramped up, even one small dose of 25mg would send me into a tailspin.

You have a very good point about the LDN! It’s purpose in AI diseases is to modulate immune function so that it’s working more effectively….hence, more die-off and herxing. Another problem with LDN that I have read about on the LDN support sites is that if a person has a candida overgrowth, this can cause increased pain and the candida needs to be cleared. I can’t remember exactly when you started LDN, but we have an RAer here (JFR – now in remission) who started LDN prior to finding AP and I remember her saying that she herxed quite badly at the 6 week mark after beginning it.

Carrie, hope you find your answers! Please let us know what you figure out.

[carries]

Hi maz! How do you know if you have canidia overgrowth. I have no stomache issues or yeast infection so what would be symtoms of this? I take 80 billion of probiotics a day.

The DILE was never confirmed as far as an antihistone test goes. I tested positive for JRA and then it went back to negative after medication was discontinued. As far as i remember I will have to ask my mom again. But I think that is how it went.

I have been on LDN now for 6weeks…just upped it this week to 3mg….so maybe that is why I am herxing so much. How do you know if its a flare or herx?

[Maz]

@carries wrote:

Hi maz! How do you know if you have canidia overgrowth. I have no stomache issues or yeast infection so what would be symtoms of this? I take 80 billion of probiotics a day.

The DILE was never confirmed as far as an antihistone test goes. I tested positive for JRA and then it went back to negative after medication was discontinued. As far as i remember I will have to ask my mom again. But I think that is how it went.

I have been on LDN now for 6weeks…just upped it this week to 3mg….so maybe that is why I am herxing so much. How do you know if its a flare or herx?

Hi Carrie,

On rheumatic.org, they list a couple labs that test for candidiosis, if you scroll down the page:

http://www.rheumatic.org/docs.htm

Others who have had this testing done might be able to share the labs their docs used.

Some people swear by the “spit test.” Sounds gross, I know…but it’s simple and can’t hurt to try.

http://www.adhdrelief.com/CandidaTest.html

Sometimes candida isn’t as obvious as an overt infection, like oral thrush, and can build, over time. Some find that a white build-up on the tongue is a clue, others might have skin or anal pruritis (itching) or a rash under the breasts and other damp places…fungus on the feet or toenails, for instance. The symptoms of candida overgrowth are many, so it’s worth finding a good candida website and researching the possible symptoms just to remain aware.

Hmmm…well, this is just fellow-patient speculation on my part, but if you started having JRA symptoms and this was confirmed by labs at the time, have to wonder if it’s possible that starting mino, as a teen, might have just exposed an underlying, brewing rheumatic disease (like the example Brown gave in his book)…not DILE, but latent JRA that later in life revealed itself as RA? I don’t know, Carrie…it’s just that without the positive anti-histone AB test (could still get the single-stranded anti-DNA test run), it seems unlikely to be DILE. Again, though, a good immunologist should be able to get to the bottom of this, if you are worried about DILE. 😉

Herxes and flares have been very hard to differentiate between for me and I only knew I was herxing in retrospect, looking back. A herx would herald improvements, after the worst was over, and a flare would herald worsening. It’s been like this all the way for me, only knowing what had happened when I looked back. It’s not unusual when changing/adding something to an antibiotic protocol (new med, changed dose) for a herx to occur and when a herx occurs may depend on the med (half life of drug, how effective it is, etc). Lots of things can cause herxes aside from abx, too…like FIR saunas, for some the sun, changes in barometric pressure…and this might sound whacky, but some even swear that moon phases are connected (i.e. primitive bugs and their reproductive cycles synching up with moon phases, much like women’s reproductive cycles). So, could LDN cause herxing? Yes, having been on LDN, myself, I know it can cause a temporary worsening, but again, it’s only looking back in retrospect that I could work that out, when it had passed and I was feeling improved.

There were particular labs Brown used to differentiate herxes from flares (as it applied to antibiotic therapy, though), which can be found under the Historical Protocol on the main site…the following came from a writing by Brown that was published in the Maryland State Medical Journal in 1956:

“Another observation which intensified our interest was made at this time. Those patients who had been given a much larger dose of these antibiotics and in whom a constitutional flare reaction was induced were found to exhibit coincidental elevation in sedimentation rate, gamma globulin as well as total globulin and a fall in serum albumin and hematocrit. This suggested that a toxic substance had been released at the time of the induced intensification of their smoldering hypersensitivity reaction.”

Maryland State Medical Journal, Volume 5, Number 2, February 1956

Hope something here can help in your searches, Carrie. By adding azithromycin to your mino, this, too, has potential for causing herxing. 😉

[carries]

Hi Maz! So I know did the spit test and it all sunk to the bottom after 20 min. If I am not mistaken that indicates a systmeic yeast infection correct??

[Maz]

@carries wrote:

So I know did the spit test and it all sunk to the bottom after 20 min. If I am not mistaken that indicates a systmeic yeast infection correct??

Hi Carries,

Well, according to the link above, such a result would indicate a candida issue and needs to be discussed with a healthcare provider for further investigation. My guess is that a naturopath or experienced AP or Lyme doc would be the best option, as regular docs might prescribe 2 Diflucan tabs for an overt yeast infection, but aren’t likely to do anything about systemic candida. I also have to be honest and say I don’t know how accurate the “spit test” really is…I have just heard of it being used by others.

Certainly, on the LDN support sites I researched when starting it, there was quite a bit of info on how candida can prevent progress on LDN (may cause worsening) and I’d suggest going to one of these sites and talking to the patient advocates about this to learn what actions they took to figure and sort it out.

[carries]

Thanks maz! Do you think an infectious disease dr at the cleveland clinic would be helpful with this issue of yeast? i have an upcoming appt two weeks from now and one with my gp today for the yeast but I think she will do exactly as you said…or even nothing. I dont care for her. I feel she looks at me like im a hypochondriac. I know when there is something wrong with my body . I wonder if the ct scan of my chest yest….will show yeast ??

[Maz]

@carries wrote:

Thanks maz! Do you think an infectious disease dr at the cleveland clinic would be helpful with this issue of yeast? i have an upcoming appt two weeks from now and one with my gp today for the yeast but I think she will do exactly as you said…or even nothing. I dont care for her. I feel she looks at me like im a hypochondriac. I know when there is something wrong with my body . I wonder if the ct scan of my chest yest….will show yeast ??

Hi Carrie,

I don’t have a good deal of trust in IDs, I’m afraid….sorry, it’s a Lyme thing. 😆 Honestly, though, I’m doubtful a mainstream ID would even consider systemic candida. Kim, however, did recently just list a new LLMD in Mt Orab, Ohio. I don’t know anything about this doc, but you could ask Kim if she has any info for you. Lyme docs, on the whole, tend to know about and treat candida. I just don’t know how “lyme literate” this particular doc may be…each will have their own MO. So you might need to phone through to her office and see what services she supplies. One of the treatments used for chronic Lyme is the “Shardt Protocol,” which consists of 100mg Diflcuan BID for several months, as it was found that some chronic Lyme patients actually got well on anti-fungal treatments…possibly due to it’s action on blocking the P450 cytochrome in the liver, a detoxification pathway, that also has some effect on spirochetes.

I’ll paste her contact info into a PM for you, but would suggest PMing Kim for more info on this doc, as she found and listed her. 😉 Do hope this doc can help.

[carries]

So I went to my gp…..she says no signs of yeast so no diflucan for me….that was a bit frustrating. She said to me that unless I was in the ICU its not systemic…I told her that is what I am trying to prevent going to…… dah

[PhilC]

I am very skeptical of that “spit test” for candida. I remember trying to find the source of that info once but I didn’t have much luck. So I asked a friend about the “spit test” because I thought she had probably heard about it since she worked for a very good naturopath. She had never heard of it.

Here is some information about LDN that may be helpful:
http://ldn.proboards.com/index.cgi?board=links&action=display&thread=1483

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

@carries wrote:

I am thinking this maybe DILE being that I had DILE as a child when I was 13 and was taking minocin for acne….once stopped pain subsided.

Hi Carrie,

You had DILE as a teen from taking Minocin? Does your doctor know that?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[carries]

It was never officially confirmed….I stopped the med at that time and pain went away.

I emailed dr S in Iowa and he seems to think its a herx just like Maz thought…so I think I am going to try it again…but instead of 200mg on MWF maybe only 100mg until this subsides…my dr also gave me a script for doxy…wondering if I should just take that since I have the mino tan on my legs …they are brown…hey I dont mind…they look nice and tan…but I dont know if thats good to have.

[PhilC]

Hi Carrie,

When you took mino as teen, how long were you on it? If you have a prescription for doxycycline it might be worthwhile to give it a try. It would give you a break from minocycline and it would give you something else to compare it with.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

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