Home Forums General Discussion 6 weeks in- is this a herx

This topic contains 6 replies, has 4 voices, and was last updated by  Lynne G.SD 1 year, 5 months ago.

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  • #459070
    Kat0605
    Participant

    I’ve been feeling terrible the last 2 days. My skin feels doughy and sticky and I feel like I’m being needled to death by knitting needles- my head, my face, my legs. Up to this point, I hadn’t noticed a huge difference in my symptoms- maybe less joint pain and fatigue and less shortness of breath, though I’ve had very little of that to begin with.

    The only difference is that I started a dairy-free, gluten-free, sugar-free diet yesterday. My LLMD had recommended it when I started ABX 6 weeks ago, but I didn’t go through with it because I’m pregnant and have had issues gaining weight. Baby looks good and my weight is fine now, so I decided that maybe it was the kick in the pants I neeeded. Could it be causing me to feel worse? I’ve not been able to work the last 2 days and I’m starting to worry I need to take maternity leave 6 weeks early, which would mean less time after the baby is here. I can’t lose my job because of health insurance.

    Is this the herx I’ve heard so much about? How long will it last?

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #459071
    Airen
    Participant

    Hi Kat,

    I have RA so we may not have similar experiences. When I started AP I herxed for several months. The first 6 months were pure hell. I did have some good days and some small yet noticeable improvements. I too was on a very strict elimination diet at the time and I feel like my body was also detoxing all that junk out of my system. I was dizzy light headed nauseous, increased pain, depression, feeling like this treatment wasn’t going to work. All the while working full time with two young children. I had a significant turn around after the 6 month mark. I’m sure your situation will be different since you have SD and not RA but what you’re experiencing sure seems to be a herx. I’m now almost two years on AP and just about in remission…my RF is in the “negative” range which is below 14, but I’d like it lower. Good luck and stay strong. If you notice small improvements now then I would take that as a good sign!! There are so many amazingly informed fellow patients on this board so I’m sure someone else will chime in too.

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #459079
    whaleharbor
    Keymaster

    I also have RA so my herxing experience is also different. Plus we might all herx differently. For you and anyone else wondering, here is what herxing was for me: On the first “road back” when I went into remission for 9 years…I got better…fantastically better seemingly overnight only to be thrown into the worst pain, depression, suffering and anguish ever. This seesawed up and down with little breaks until I noticed that the breaks were longer and longer and then I hardly noticed the bad days and then it all just abated. I am going through a similar process now. For me it is like throwing a pebble in a pond. One big splash and lots of ripples that over time …ever so slowly…calm down and even out. That’s what the herxing/healing process has been for me. In the beginning it was just horrible violent waves…and then an evening out until calmness was reached. That’s the only way I can describe it.

    Of course, I was and am not pregnant so I never had that to worry about. I guess, what I’m getting at is, I’d be more concerned about making sure that there is nothing that you are doing, that you aren’t pushing so hard that you might stress the baby in any way. Were it me, I’d discuss it with my docs to see if you were trying to do too much too fast?

    200mg Celebrex 1 times per day.
    100 mg Minocycline every other day (Actavis Brand)

    #459080
    Kat0605
    Participant

    Thank you! This is good information to have. I should note that my symptoms arent debilitating. I seem to feel best in the morning and then as the day goes on, my symptoms worsen. I feel skin tightening, though none that anyone but I can see.

    I’m hoping some folks with SD will see this and weigh in as well.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #459081
    Lynne G.SD
    Participant

    Hi Kat;
    It sounds like SD only because of the Raynaud’s.I have SD and my kid sis has MCTD/Lupus,I have/had raynauds,sis has not but could eventually get it.A herx happens when bacteria die off,drugs or a diet that improves the immune system to do some killing could cause a herx in my opinion.You say “sudden Raynaud’s” heve you thought about using Nattokinase to break up the rouleaux that cause the tiny capillaries to break?It worked for me just as well as TPE can work.If you want info on Natto that is double blind/peer reviewed I have a lot.I do not think it would hurt the baby as we have tried it on animals at hundreds of times higher dosage than a human would use.If you want those links mail me at lynneandsantos@citenet.net as I don’t want to clog up this site with too many links

    #459082
    Kat0605
    Participant

    Thanks Lynne! Nattokinase sounds interesting. I’m worried about anything that thins blood before I deliver the baby in the next few weeks. I do think it looks promising. Can I order it online? I’m sticking up on the supplements I can start after delivering.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #459100
    Lynne G.SD
    Participant

    Kat,give me your email in answer to mine and I will send the info for you to look at.Don’t just believe what you see on Google as companies are trying to sell product.I have the real thing,double blind/placebo controled/peer reviewed

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