Does it mean anything if I've never herxed?

[paper tiger]

I first took doxy last summer, stopped for awhile, and then restarted again this spring. A few days ago I learnt that my SD is more aggressive than I'd previously thought. My lungs are involved, so I switched to Minocin.

Never with either doxycycline, nor with Minocin, have I felt any of the symptoms associated with the herxheimer reaction.

I have no joint pain nor any skin involvement. My SD is characterised by rather severe Raynaud's, esophageal dismobility and lung involvement. Could it be that I haven't herxed because my inflammation is pretty localised (my lungs)?

Or… and this is what concerns me, could it mean that I am not responding to AP?

[lynnie_sydney]

papertiger – the answer is no, it does not mean that you are not responding to mino. The fact that you have no inflammation is probably the biggest clue here. I am pasting below an old post that I re-posted in August which gives some information about this. Lynnie

redrock, Melinda and all, this is an old post of [highlight= #ffff88]Henry[/highlight] [highlight= #88ffff]Scammell[/highlight]'s (yes that [highlight= #ffff88]Henry[/highlight]!) that I found from 2005 and posted a while back. It includes some reflections on herxing and the differences (for those who accept the infectious theory) between people who have RA and SD.

Why Dr Brown was a Lumper

Posted by [highlight= #ffff88]Henry[/highlight] [highlight= #88ffff]Scammell[/highlight] on Sun – Aug 14 – 5:40pm: 2005

Tom Brown was a lumper, not because of the politics of the time or arbitrarily, but solely because he saw thousands of patients getting better on antibiotic therapy and he figured they were all improving for the same set of reasons. But the recent exchange on this topic contains a couple of misaprehensions. The concept of lumpers/splitters is particular to RA, and does not include the other connective tissue diseases such as lupus, fibromyalgia, scleroderma, etc. – although certainly Brown recognized that they all had a lot in common, especially their responsiveness to antibiotic therapy. Lumpers use the term rheumatoid arthritis generically to include all the inflammatory forms of arthritis (I think there are 106.) The rationale for this is simply that rheumatoid means inflammatory. Because Brown was virtually alone in using antibiotics for any of those forms of arthritis or for the other connective tissue diseases up to the time of his death, in those days whether a rheumatologist was a lumper or splitter had nothing to do with the AP or the infectious theory. In fact, lumpers and splitters alike held Brown, the theory and the treatment in low regard and often in contempt.
Today the question of lumpers vs splitters has become even more politicized because it has obvious implications for the infectious theory and, to a lesser extent, the efficacy of the AP. Some 17 years after Tom's death, the theory remains unproven. More happily, the AP has been accepted for use in RA (splitter's definition) by the USP and the Arthritis Foundation – although it has NOT been approved for most of the other 105 inflammatory forms of arthritis. So today more than ever,the distinction is a critical one. If your doctor is a lumper and he believes the USP or the Arthritis Foundation,chances are good that he'll treat whatever form you have with minocycline (which was available in Tom Brown's time, by the way, and which he used – we refered to it as tetracycline because that's what it is.)
An apparent subsidiary to this issue is the JH reaction – doctors who doubt or reject the infectious theory obviously don't believe their RA patients ever herx on the AP. Conversely, most doctors who do believe in the theory believe they can tell the difference between the JH reaction and a conventional flare. As for scleroderma, it's not inflammatory, so obviously the herx, if there is one, would not present in the same way as in RA. I don't know how a scleroderma patient would know whether he has ever had a JH reaction, or how he could be sure that he has not.
Some years ago, about halfway between the time we wrote The Road Back and today, I updated our effort with The New Arthritis Breakthrough. As anyone who has read that book knows, it owes much to the helpfulness, insights, courage and cooperation of David Trentham . When we sat down to discuss that update, David commented that it was unusual that in the several years since Tom's death, not a single statement in The Road Back had been proven wrong or false. We both knew we had leagues to go before the day when it could all be proven true.
One last thought on the recent exchange: I don't know how many of the RBF board believe in the JH reaction, and although I assume it is most or all of them, I could care less. As a loyalty test for supporters of the infectious theory, it's meaningless.
Okay – yet another last thought:it's wonderful that RBF has so many good people who are willing to share their knowledge and experience and love of their fellow man, especially in the forum of this lively bulletin board. We now get something like 45 MILLION page hits a year on this site,and I'm certain most of those visitors look in on this running dialogue. Many, many thanks for all you do – whether you agree with each other or not. Keep on sharing. And keep on loving.

Also, on our main site, there is this statement: 

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

“(Scleroderma patients who do not exhibit inflammatory components to their disease generally do not report a Herxheimer of clinical significance.)” 

In other words, those who do herx may have an overlap of of other rheumatic disease.  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)

[Alli]

Lynnie,

That was very insightful information regarding JH.  I have been wondering myself if the minocycline is not as effective on me as others because I don't think I have herxed.  There are somedays when I am extremely tired and occassionally my joints are tender but I have found that it is not anything too different than prior to starting AP.

The good news is that I am getting better.  I have yet to post all of my last results from my 6 month visit to my lung.  For now I will share that my echo results are:  9/2010 pressure:  36;   9/2009 pressure:  58.  Hmmmm, my dr said, “has to be the Tracleer!”  Will post more on my visit soon.

Take care…..Alli

[paper tiger]

Thank you so much for that! I've actually read that article from roadback.org a few times but kept missing the scleroderma note. Figures being stressed out would do that…

[Parisa]

Papertiger,

Look into NAC for your pulmonary fibrosis.  It made a big difference for my husband.

[hopefulmama]

papertiger,

with all of my esophageal stuff going on, i have learned that the lung problem primarily comes from aspirating reflux into your lungs while you are sleeping.  i am not expressing this well, it is more technical than what i have written, but basically it is because the esophagus is not doing its job correctly that the stuff gets swallowed down the “wrong pipe” and into the lungs in the first place.  i was told to sleep with the head of my bed elevated 8-10 inches and also to take the proton pump inhibitors religiously.  which of course, i am not doing right now 🙁  but i am sleeping propped up or sitting up most nights, and actively researching getting a new wedge or bed to help in that endeavor.

the great thing is that i have read from several people on this board that their lung function has greatly improved while on AP so i think that is wonderful.  maybe it is because their esophagus begins to work better over time? 

i will pray that your lungs improve every day on Minocin.

best wishes!
andrea

[paper tiger]

[user=2523]hopefulmama[/user] wrote:

papertiger,

with all of my esophageal stuff going on, i have learned that the lung problem primarily comes from aspirating reflux into your lungs while you are sleeping.

[Parisa]

papertiger,

My husband tried Cytoxan and it didn't do a thing for his lungs.  I don't know why they recommend it, the research to support its use really isn't there.

See if they'll give you zithromax.  It's much less toxic than Cytoxan.  Zithromax was very helpful for my husband's lungs.

[hopefulmama]

Hi papertiger,

I wish I was a better AP role model… I really plan to be! 🙂  I am not yet on treatment of any kind (was supposed to start today but it didn't work out) and so I can't yet give advice from my own healing experience.

My situation does not yet affect my lungs, when I had them tested they were at 100%.  I have not yet been diagnosed with scleroderma.  I simply have two of the major CREST symptoms… Raynaud's and esophageal motility dysfunction. 

The PPI experience was a bit uneventful at first, and then turned a bit savage for my gut.  After taking Prevacid 30mg for one month, I began to experience intense nausea that felt as strong or stronger than morning sickness.  I have been pregnant 3 times and definitely know the seasick, ground-spinning feeling.  I took a pregnancy test, I was so convinced I was pregnant again.  Finally when I went to see my OB about it, she asked me what medication I was currently taking and when I told her about the prevacid she said she was sure this was what was causing my symptoms.  She told me to speak with my GI.

I decided to see if she was right so I stopped taking the Prevacid for a week and all of the nausea went away.  I started taking it again and within a day I felt wretched.  So, I stopped.  Here is the problem, I stopped taking it cold turkey so I got an insane rebound reflux that was 200% worse than any reflux I had ever experienced before going on the PPI.  I should have tapered the drug slowly, but I didn't.  I regret that.

Now that I know about the rebound acid, I am reluctant to ever take a PPI again.  I guess if it is absolutely necessary, I will.  I know other members of this board have taken them to protect their esophagus from further damage while they patiently waited for the AP treatment to kick in, and then later were able to get off of the PPI drugs.  That may be a sensible plan.

For me, I have chosen to use massive doses of probiotics and drinking apple cider vinegar in water, to help with the digestion.  I am also eating smaller meals, and I have noticed that since I cut out gluten the reflux has nearly disappeared.  I am also sleeping elevated at night and working on getting a better sleeping situation.

I hope any of this information helps you!  I do believe that your lungs will improve, based on everything I have read from other members such as Vonni and Kim.  I will be praying for you and I look forward to hearing about your progress!

Warmly,
Andrea

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