Home › Forums › General Discussion › Concerns about no herxing
- This topic has 10 replies, 6 voices, and was last updated 9 years, 2 months ago by richie.
March 20, 2014 at 5:17 am #308193
Hi everyone. I have been dxd with diffuse sd and lyme ( with 2-3 coinfections). I started my protocol 3-4 wks ago . I’m on 2capsx2/day of artemicinin, 250mgx2 /day of zithro, and 5mlx2 / day of Mepron , not to mention many,many supplements. (The Mepron was started 3 weeks ago). The problem is i am not herxing at all!! The only thing i have experienced is big time nausea and no appetite but no herxing. This is concerning to me because from what i have read, i should have had a herx by now.
My question to all of you experienced ppl is this…is it possible that a person does not have enough dosage of these meds or is it indicative of not being the right combo? Could i be needing another abx in addition? Or am i not waiting long enough for a herx? I have had lyme and the co infections for decades w/o a dx and my numbers are high so there is no question that the disease is there. Any help is appreciated! Btw, i knw we are all lay ppl here. i will talk to my doc of course at my nxt appt for med advice , but i wanted to hear your opinions based on any experiences you may have had with this situation. I tried to search past discussions so as tonot repeat but i didnt see anything. Please correct me if i am wrong! Thank you.
P.s.excuse my typing, bad handsMarch 20, 2014 at 10:59 am #371647lynnie_sydneyParticipant
I am going to post this again – an old post from Henry Scammell (yes THE Henry Scammell) that dates back to 2005. It includes some reflections on herxing and the differences in response (for those who accept the infectious theory) between people who have RA and SD.
Also, on our main site, there is this statement:
https://www.roadback.org/index.cfm/fusea … id/91.html
Why Dr Brown was a Lumper Posted by Henry Scammell 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.
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)March 20, 2014 at 3:08 pm #371648
Thx Lynne i suppose i should pose the question to SDer’s. I read mixed reviews on herxing also. I was just looking for other’s experience in similar situations. Thanks again!March 20, 2014 at 11:00 pm #371654richieParticipant
Hi I am fairly certain most folks with SD do not herx —I never herxed and got all better from SD —With reference to the above –I am definitely a splitter and convinced these illnesses are all different and most likely have different causes –As Dr Trentham said years ago –“-it works on scleroderma –I am not sure why “—He certainly wasnt convinced about an infectious theory for SD –his question form leaned heavily on environmental questions —
RichieMarch 21, 2014 at 1:14 am #371651
Could nausea be considered a herx or would you consider that more of a side effect?March 21, 2014 at 4:17 am #371652MazKeymaster
I have been dxd with diffuse sd and lyme ( with 2-3 coinfections). I started my protocol 3-4 wks ago . I’m on 2capsx2/day of artemicinin, 250mgx2 /day of zithro, and 5mlx2 / day of Mepron , not to mention many,many supplements. (The Mepron was started 3 weeks ago). The problem is i am not herxing at all!! The only thing i have experienced is big time nausea and no appetite but no herxing. This is concerning to me because from what i have read, i should have had a herx by now.
Definitely something to ask the doc, but are you sure the nausea isn’t a herx? Dr. J., LLMD in Wash DC, discusses this here:
The following links might also be of interest:
Are you taking the Mepron with some fatty food (e.g. nuts, avacado, eggs, etc)? Really critical for absorption and by not doing so might also cause nausea.March 21, 2014 at 4:42 am #371653PhilCParticipant
Could nausea be considered a herx or would you consider that more of a side effect?
Probably not a herx, but it could be a different kind of “die-off” reaction (e.g., secondary porphyria).
For more information, read this web page:
Secondary Porphyria: what you should know before starting a CAP
Quoted from the above web page:
When porphyria affects the nervous system, it can cause:
* chest pain
* shortness of breath
* abdominal pain
* muscle cramps
When porphyria affects the skin it can cause:
* sensitivity to the sun (which also can be caused by some antibiotics)
* purple-red-colored urine
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinMarch 21, 2014 at 12:38 pm #371649
Thanks Phil and Maz. Wow Phil, never knew about that . Maz ive been trying to eat after the Mepron as much as i havent wanted too. But maybe not enough. I have lost my appetite completely on this. But there is some good news. Yesterday i noticed that the nausea has begun to lift. So maybe this is a sign that the nausea is over? My big concern has been being able to keep the Mepron down. So many times it has wanted to come back up. Gosh i wish this came in pill form!!
Thanks again for all your time and helpful knowledge! I so appreciate it. This is certainly not a journey that would be easy to do alone! SunnyMarch 21, 2014 at 3:48 pm #371650MazKeymaster
Maz ive been trying to eat after the Mepron as much as i havent wanted too. But maybe not enough. I have lost my appetite completely on this. But there is some good news. Yesterday i noticed that the nausea has begun to lift. So maybe this is a sign that the nausea is over? My big concern has been being able to keep the Mepron down. So many times it has wanted to come back up. Gosh i wish this came in pill form!!
Sunny, have you tried eating before taking the Mepron? I would chew a palmful of walnuts before my doses when I was on it. I believe Malarone (substitute for Mepron) comes in tablet form. You could ask doc about this if the nausea continues to be a problem as it’s supposed to have fewer side-effects.
Also, easy enough to get tested for porphyria as outlined in the link Phil provided (Phil may be on to something with the MTHFR issue and Vit B dysregulation). I tried the “Poor Man’s test” at home and it didn’t reveal anything, but the urine and blood labs might be more accurate. As the link says, hematocrit and hemoglobin elevations can be a clue. I think you’re on NAC (and glutathione IV pushes?) and possibly toxin binders (chorella and takesumi?) so these should help.
Sunny, are you able to add a signature line with your dx/meds/supps and dates? A sig line can help generate responses when other have experienced same. 😉March 25, 2014 at 1:27 am #371655SusanSDParticipant
I would say that I did have herxing but it took a long while and it wasn’t predictable. I’ve been on AP for 7 years and the progress is not linear or logical, but improvement over time is the outcome. Give it another 6 months to see….. Good luck!March 27, 2014 at 12:27 pm #371656richieParticipant
Nausea is a very common side effect of minocycline —when I first started the med I was nauseous for about two weeks –even now 15 years later once in awhile I retch –over the years I have retched so often -my wife doesnt even look up –she knows it passes in a few minutes !!!!!!!!!!!!!!!!!!!!!
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