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My take on this is:
1. The mino was working just maybe to well and quick for my body to handle.
2. I see the possibility of other underlying problems because of all these new symptoms I had never experienced.
3. Possibility of Lyme bc of rash and muscle pain/ joint pain.This is all in my unprofessional non-medical opinion.
I think your unprofessional non-medical opinion is right on!
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
When I started ap, I got a very stiff neck. It was intense muscle pain, going up into my skull, for ~ 2 weeks & then started to subside. I went & got a (painful) massage (I never went back to her, she just wouldn't back off) & it got intense again for a few days. I took this to mean it was lymph backing up in nodes of my neck. Who knows.
I have to say I have during these seven months I have been on Mino MWF wondered about the whole herx thing too. I just noticed some of the symptoms I originally had will come and go but have definitely lessoned in intensity for me. I have had for the last month or so a patch of hives on my shoulders that is driving me crazy and I have been trying to figure out what I am allergic too because I tend to be very sensitive and will break out in weird hives for no apparent reason but now I am wondering if this is a herx? Just thinking about it now makes me need to stop and scatch!
Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.
I also agree that this was a great thread to start, it makes mean feel a little better in how I feel today.
When I started Mino I didn't get any herxing, I just had a great improvement although I was taking MSM as well and that could have helped as well. It was the best feeling, no pain, I could actually do housework again. That lasted for about 2 months, I also was weaning off Mtx, so that could have been why I had no herxes, but when the Mtx was out of my system, the pain gradually came back.
Now I am on a new combo of abx, and I don't know if I am herxing, I hope so as I am worried that without the mtx, all the inflammation I am having is doing permanent damage.
We will see, my new combo will last about 5 months, sooo long, but will be worth it if it works.
………………..Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.Huh. It seems like there is a wide range of herx reactions – some people have stiff necks, some have rashes, some have increased joint pains, sometimes even feeling like you've been hit by a freight train. That's pretty much what I thought before. It seems like the whole herx/symptom thing is a lot of guessing, and sometimes its hard to get what is what.
So I guess I'll just have to stick with things and learn as I go. :roll-laugh:
Tainabell,
I have been taking Minocin daily for over 2 yrs for my diffuse SD and my herxing has gotten worse (or I am more aware of it now). Yes, I have had the “been hit by a truck” fatigue in the first year especially. My main herx symptom is throbbing pain and it can be sharp or dull. Mostly it occurs in my chest (sharp but brief), which made me think that it could be my heart, but since it moves around from day to day, I have ruled that out. Itching is another herx symptom for me. My theory is that the types of herx symptoms you experience relate to which bacteria you have and in which way it inflitrated your body. For me, I believe, but cannot prove, that the bacteria first infilitrated via lung, so my primary herx symptoms are in my chest area (even the itching). I also wonder if the herxing has a pattern to it – from a systemic pattern to a more localized pattern as one gets better and the bacteria have to “retreat” so to speak.
No matter the herxing, look for smalls signs of improvement. I also kept a journal and would note if it was getting easier to squat, shower, etc.
Susan, if you're still herxing after 2 years on Mino, maybe you need to change things up a bit. Mino/Zith/Clindy improved my SD symtoms tremendously, but only went so far. It was then that I realized I had Lyme and the tx for that has really stirred things up, in a good way because I'm getting better.
Have you been tested for Lyme? It seems so many people hit the wall and then learn they have Lyme and company at the root of all this. You can order the Igenex test and get the basic Western Blot #188 and #189 for around $200, but you have to have your doctor sign the form. Everyone has had exposure to ticks, regardless of where they live, whether they know it or not.
Since starting the Mino I have felt really cruddy and was wondering if it was herxing or the disease progressing. I order my mino form Cnanada and didn't order the next batch soon enough so now have a week or so lapse until I get my next Stock shipped to me. I am actually kind of glad becuase I feel MUCH better these past few days without the mino so that is proof to me that it is doing something and I am herxing, so it is a nice reassurance for the days of discomfort still to come 🙂
Momma,
That is exactly how I felt. Really crappy! I have been taking a break for a week and feel much better also. I will start again next week at half the dose.
Who is your AP md?
LilyAI also feel the same way joint pain, very fatigued, weak feeling in my arms and legs blurred vision, neck pain just feeling awful in general, I am glad to read that other people have the same symptoms I was afraid that my SD was getting worse, I had been good for so long and thinking I was really over the hump but fooled again. I am just laying low and not doing much outside of going to work then come home and hit the couch for a while, hopefully this herx won't last long
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