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  • #302727
    spacehoppa
    Participant

    Hi guys, Just a quick one as I think I'm having myself a herx! I had to ask my husband to stay at home today as I've felt just plain awful. Near constant feverish feeling, feel like I've been hit by a truck and bruised all over, bad arthritis flare, all over weakness and nausea here and there too. Does this sound right? I've been on the mino at 100mg for about 4 weeks now. I guess I'm due, right! :roll-laugh:

    Anyway, back to the point. Someone, ah if only I could remember their name, or the subject of their post… Sorry, the brainfog is shocking today…. said a few days ago that they knew that pustular eruptions on the hands and feet were a sign of reactive arthritis.

    This rang a bell for me as I had these pustular eruptions on the palms of my hands and soles of my feet a few years ago, when I was in the process of moving house. I never did get to the bottom of what it was, but fortunately, after a while it went away.

    Anyhow, I thought I'd google it and get an image up, and it is the exact thing I had. I remember what it looked like very well and this is it.

    http://www.std-gov.org/std_picture/chlamydia__________.htm

    So then I see an image showing all the symptoms of reactive arthritis (below), and I realise I've had them all, every last one – apart from the one that affects the male parts :roll-laugh: (ahem!).

    http://www.salmonellablog.com/6219-0550×0350.jpg

    The first symptom I had before ever getting the RA was that my achilles tendons swelled up like a golf ball. It was totally weird seeing my heels swollen up like that, but I was about 14 at the time and I didn't go to the doctor or do anything about it and it went away.

    I also have had bad conjunctivitis that lasts for 4-5 months at a time, and also uveitis, that went on for two to three years (until I took the MMS).

    I've also had longlasting urinary tract infections, low back pain and so on.

    This page shows a photo of the tongue problems it can cause. I have this right now, and have had it for a whole year now, since just after getting pregnant with George.

    http://emedicine.medscape.com/article/1107206-overview

    It's actually quite reassuring to see what the tongue problem is as I've been worrying about the fact that no amount of mouth hygiene seems to make it go away.

    The reason I write this is because I was surprised to see that I have had all the symptoms of reactive arthritis over the years but not all at the same time.

    Whilst I believe that all autoimmune diseases have an underlying infectious cause, so none of this should surprise me, I was still interested to see that I had the classic signs and symptoms of reactive arthritis/reiter's.

    It's way too late now of course, but a few of the right questions at the time of diagnosis, might have meant quite a different course for my disease, and therefore my life!

    I know I have Lyme too, which adds to the confusion, but it still intrigued me to see this symptom list that so closely matches my own experience.

    My question to you guys is, how many of you have also had these symptoms: swollen heels, low back pain, conjunctivitis, urinary tract infections, pustular rash on hands and feet, and so on. Is it just me, or is this really common?

    Thanks for listening to my ramblings everyone!

    ruth

    #334238
    Maz
    Keymaster

    [user=415]spacehoppa[/user] wrote:

    So then I see an image showing all the symptoms of reactive arthritis (below), and I realise I've had them all, every last one – apart from the one that affects the male parts :roll-laugh: (ahem!).

    Hi Ruth,

    I think it might have been Rene in the Netherlands who was having this discussion a couple weeks ago?

    I'm including some studies on reactive arthritis in the next eBulletin that might be interesting to you. Should be going out within about a week. Here is one describing the pustular lesions of chlamydia trachomatis, appearing on the soles and palms, that are called, “Keratoderma blenorrhagicum.” It's sometimes confused with pustular psoriasis, but this study says that pustular psoriasis should not be confused with an eruption of this infection that is common when one is on immunosuppressive therapy. http://ard.bmj.com/cgi/content/abstract/67/8/1181

    There's another brand new study of Tunisian patients where a broad spectrum of pathogens was found in ReA patients that weren'e even commonly attributed to this form of arthritis.

    http://arthritis-research.com/content/11/4/R102

    You might find it intersting that my Lyme doc called my seropositive RA, “reactive arthritis.” I was fascinated that he called it this, because RA has never been given that name, as far as I know, being one of those idopathic diseases of “unknown” cause. In his frame of reference, however, his belief is that chronic persistent infection causes RA, so it makes sense to call it “reactive,” as in reactive to infections, just as in Reiter's.

    In one of the articles you posted, right at the end, it mentions ureaplamsa, which is a type of mycoplasma. Mycoplasma are common coinfections of Lyme disease, so I guess it's within the realsm of possibility that it's this organism and not c. trachomatis, but you'd probably have to be tested to figure it out. Either way, your Lyme combos are likely going to hit whatever is the cause. This is the wonder of Lyme docs…they use the full artillery! 😉 

    You might want to take the above study to your doc who is prescribing you the Humira, Ruth, because this will be further evidence that you are fighting an infection that is commonly attributed to reactive arthritis. He/she may not be so resistant to your taking the antibiotic route with physicial evidence like this to share! I hope so!

    Many congrats on your herx! Just hope it's tolerable and if it doesn't improve in the next day or two, you might want to ask your doc if you can lower your dose and work up. Just surmise on my part, but I wonder if your delayed herx might be the result of being on immunuosuppressive therapy? Although, Lyme is a funny critter – it replicates about every 4 weeks, so (my LLMD has shared) many chronic Lyme patients find a monthly pattern to their herxing, because this is when the organism is most vulnerable to antibiotics. I've also wondered if this could be why women with Lyme find a pattern of feeling worse around their periods while on antibiotic therapy, too. Hormones crash, spirochetes come out to play and antibiotics hit 'em.

    You're a great researcher, Ruth! I know if anyone can get to the bottom of this mystery, you will! Way to go!!!

    Peace, Maz

    PS. What are you doing to detox?

     

    #334239
    nspiker
    Participant

    Ruth,

    I was diagnosed with Reactive Arthritis and have some of the symptoms.  I have the swollen ankle and knee, as well as the heel pain.  Also have uti-like symptoms with lower back pain and urgency to urinate.  However, there are no rashes or sores or anything like that. 

    You're not alone….

    #334240
    spacehoppa
    Participant

    Hi Maz, Thanks for the reply!

    I don't think this is my first herx, strictly speaking, but we've all had colds lately so it's hard to tell a lot of the time. Also, I get these sort of symptoms every two weeks when I take the humira, for about a day and half or so. I also get this when I take the lower dose of estrogen in my contraceptive pill pack. (I haven't dared to take the 2 sugar pills yet as the accompanying flare is too horrible to contemplate – the 1mg estrogen pills are bad enough – so I just skip on to the next pack.) So I think your theory about women flaring when their estrogen drops low at their period and the extra bug killing is quite correct.

    Those links are very interesting as always, thank you! And yes, I've printed out those pages and written the symptoms I've had down in a document that I'll give to my GP at my appointment tomorrow. It has finally come around! I had to wait for him to get back off holiday and I feel like I've been waiting forever. In fact, it wouldn't surprise me if today's flare is partly due to stress. I am very anxious that this appointment goes well. I have literally been having this conversation with my doc for weeks now, at night, and not sleeping! *Rolls eyes*!

    I actually had a test for Chlamydia Trach. along with my tests at Breakspear and it came back negative. Although saying that, it was part of the same battery of tests that gave my only negative result for Lyme, so it might not be that sensitive.

    Anyway, must go and bath the kids. The flare seems to be lifting slightly, thank goodness. I could barely lift my head off the pillow until 2.30pm this afternoon, which is not like me.

    Oh, and TMI I know sorry, but I've been peeing loads the past few days, especially at night, loads and loads. Is that my body trying to get rid of the toxins? I'm not actually doing anything for detox at the moment. I know I should do the olive oil and lemon drink, but I seem to react badly to lemon, it makes my joints flare. I could happily drink the olive oil in water though – and will probably do that later. Do you think that would work too?

    Thanks guys!

    #334241
    Trudi
    Participant

    [user=415]spacehoppa[/user] wrote:

    Near constant feverish feeling, feel like I've been hit by a truck and bruised all over, bad arthritis flare, all over weakness and nausea here and there too. Does this sound right?

    Ruth–

    Except for the nausea this is how my herxes are, so, yes, this sounds right.  I think Maz suggested backing off on the some of the abx–I'd agree.  I was started on a new homeopathic extract that targets parasites, mold, fungus, etc. and when it kicked in I hurt big time.  Today, after two weeks, was the first day out.  I should have reduced the dose right away. 

    It's been mentioned many times, you want to kill the pathogen, not the patient!!

    Wishing you all the best–

    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?

    #334242
    Maz
    Keymaster

    [user=415]spacehoppa[/user] wrote:

    In fact, it wouldn't surprise me if today's flare is partly due to stress. I am very anxious that this appointment goes well. I have literally been having this conversation with my doc for weeks now, at night, and not sleeping! *Rolls eyes*!

    I actually had a test for Chlamydia Trach. along with my tests at Breakspear and it came back negative. Although saying that, it was part of the same battery of tests that gave my only negative result for Lyme, so it might not be that sensitive.

    Anyway, must go and bath the kids. The flare seems to be lifting slightly, thank goodness. I could barely lift my head off the pillow until 2.30pm this afternoon, which is not like me.

    Oh, and TMI I know sorry, but I've been peeing loads the past few days, especially at night, loads and loads. Is that my body trying to get rid of the toxins? I'm not actually doing anything for detox at the moment. I know I should do the olive oil and lemon drink, but I seem to react badly to lemon, it makes my joints flare. I could happily drink the olive oil in water though – and will probably do that later. Do you think that would work too?

     

    No worries, Ruth….we've been talking about poo a lot lately, so why not wee, too? Heck you're changing George's nappies all day, so you're living it day in and day out. 🙂 

    Are you on the sugar pill component of your BCPs now? If so, this might account for the extra weeing. This also happens to me when my hormones take a dive and I'm getting rid of all the water retention. Just an alternative thought…maybe worth noting during your next cycle to see if the same thing happens?

    As for the detox drink, probably best not to take it if you're sensitive to lemons…the idea of combining olive oil with lemon is for the lemon's antioxidative and alkaline props (the olive oil causes the liver to contact and expel toxins). Rather than this, have you tried the perioxide/epsoms baths? Also, know you're weeing a lot, but having a bottle of water with you to sip on all day might not be a bad idea, too…keep flushing things out that way. Also, NAC (N-acetyl cystiene) is a supp that promotes glutathione production, the liver's master detoxifier. Dr S in GA recommends this in combo with Alpha Lipoic Acid and Grapeseed to help the body detox and reduce inflamm. Milk thistle is another great liver detoxifer. I also found Tri-salts helped when herxing. Sorry if you're doing these things already (I know you have a lot of expertise in supps), but just thought to mention them in case the brain fog gets in the way.

    Hope your doc appt goes okay tomorrow, Ruth. Please come back and let us know how it goes for you. I know how you feel about getting 'geared up' before a doc appt, but you'll be okay. You're so clever and I'm sure you'll put your case to your doc in a very reasonable and well-thought out way. Your possible reaction to humira should give him enough pause to think, anyway.;) I've been known to use the “perhaps you would humor me, doc” angle.

    Peace, Maz

    #334243
    spacehoppa
    Participant

    Sorry to be a pain and repeat what everyone before me has no doubt already said, but I am herxing like crazy and I'm worried because I haven't even started the full dose, or the other two antibiotics yet.

    One good thing though, is that I notice that when I don't take the minocin my herx subsides, so it's definitely the mino that's doing it…. which is great really… just hard to function with on a daily basis.

    My herx seems to be consisting of increased inflammation all over, flu-like feelings, very tender rib cage (the slightest touch is agony, which is always the case actually, but worse right now) and unbelievable fatigue.

    It wouldn't be so bad but I've got the little ones to look after and unfortunately no relatives (apart from my husband who has to work) who are well enough to help.

    I'm wondering about taking the other two antibiotics at full dose (chloroquine and clarithromycin) and taking the mino at 200mg M-W-F, rather than 200mg every day as prescribed. I need to run this past Dr D obviously, but unless this herx eases up a bit, I'm almost bedridden, which is no good for my family.

    I know loads of you have been here before me. I think I'm mainly just venting! I feel very fortunate at least to know what is happening and what to do about it.

    I took some of my calcium/magnesium orotate last night and it helped quite a bit, so I'll be doing that regularly for the forseeable future. I can't actually get in and out of the bath unfortunately, so I can't do the epsom salt bath – wish I could! And I think I'll try the olive oil drink today. So at least there are things I can try.

    Ugh, I think I've just been knocked sideways by how bad the herx actually is. I don't think you quite believe it until you experience it do you!

    Anyway, thanks for all the continued support, it's making all the difference!

    #334244
    lynnie_sydney
    Participant

    Ruth- sorry you're having such a bad time. Remind me, what kind of doc is Dr D? 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)

    #334245
    spacehoppa
    Participant

    Dr D is a rheumatologist, but one who is also Lyme literate – a rare combination, especially in the UK!

    #334246
    lynnie_sydney
    Participant

    Ruth – maybe Maz and Kim can jump in here being more au fait with Lyme protocols. However, daily dosing to start with does seem alot to me…..perhaps you could talk to Dr D about dialling it back to a pulse? You not only need to function, you are entitled to. I do know that Maz couldnt take the herxing from daily dosing of mino and her LLMD did agree to her dropping to a MWF regime back in 07. Take a look at her Progress thread. 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)

    #334247
    Susan LymeRA
    Participant

    Hi Spacehoppa,

    Like Maz, my LLMD who is also a rheumatologist, always list reactive arthritis, polyarthritis, rheum arthritis, CFS, etc on my insurance sheets.  I always thought she did it so the insurance company would keep paying for my treatments.  But, I share some of your symptoms too.  Low back ache, pressure to urinate, sore heels (just learned the back ache and sore heels are bartonella symptoms).  So you are not alone.

    Herxing is a sure sign you are on the right course but it is also a cry from your body to slow down the attack.  It does you no good to kill the pathogen if you can't effectively eliminate the toxic die off.  The die off itself can cause you great harm.

    I agree with others to please lower the dose and take extra measures to help your body detoxify.

    I hope you feel much better soon.

    Susan

    #334248
    Trudi
    Participant

    [user=415]spacehoppa[/user] wrote:

    Ugh, I think I've just been knocked sideways by how bad the herx actually is. I don't think you quite believe it until you experience it do you!

    Hi Ruth–

    Exactly!!!!!

    I am so sorry to hear about your herxing especially since you have a family to take care of.  I would ask your doctor to give you the absolute least amount of abx as possible.  Die-off of bacteria causes inflammation.  Mine got so high that we had to discontinue and went to botanicals and homeopathics.  The herxing is still there but not anywhere near to what it was on the full abx.

    Wishing you all the best and keeping you in my prayers,

    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?

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