Home Forums General Discussion My herxing – or is it??

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  • #299829
    Manda
    Participant

    Hi everyone..

    On the old board, I wrote a list of my herxing about 3-4 weeks into it. Well, this is week 5 and things have gotten worse. 🙁

    Generally, I feel like the pain and hip issues are getting worse – but they don't last as long. More intense for a shorter period of time. Not sure if that's a good sign..

    BUT.. now I've got a Uninary Tract Infection. It's bringing me down pretty bad, considering:

    a. UTI's were the reason I went to this AP doctor in the first place (I didn't know she was one!). I was desperate. I'd had them since I was about 16, and I never got better. It was getting to the point where I just couldn't take it any longer.

    b. I didn't even have sex. This is the first time I've gotten a UTI without the “fun” bit..

    It all makes me feel like screaming WTF????? Makes me wonder if this is working at all this time around. (Yeah, I'm panicking a bit, aren't I..)

    Anyway.. thanks for listening.

    Manda.

    PS: I am wondering if the lemon/olive oil drink (I had it twice), possibly upset my bladder? I was getting terrible cramping when eating fatty food (home-made chips actually), and taking the drink worked clearing that up.. but maybe it upset something in my bladder?? What do you think of this idea?
    (Desperately seeking answers)

    #309152
    lynnie_sydney
    Participant

    Manda
    In my view, you are herxing. And you will get alot of suggestions from  people on this Board as to what to do about it. However, knowing the Doc that you are going to, why not go straight to the person who is prescribing and treating you and book a 15 min phone consult with Dr  D.  I so think that will be the bext option for you. She should be able to suggest ways you can best alleviate your symptoms. In herxing, it always tends to be the things that we have had problems with that are most affected in the die-off stage. However, your herx needs to be manageable. Dont be discouraged. But do ask for some help. Feel free to pm or email me privately also. Lyn

    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)

    #309153
    Manda
    Participant

    Thank you Lynnie. 🙂

    I didn't know Dr. D did phone consultations! I called the office, but they weren't sure if they did that either, and asked me to call them back in the morning. I felt this thing coming earlier in the week. I wish I had have done something about it then.

    In the meantime, it was easy enough to see my local Dr.. who I gave a sample to, and he gave me some Trimethoprim antibiotics to take (one a day). I'm a little nervous about taking these new antibiotics, but I have to take care of this infection now.

    Its scary. I thought herxing was just going to be joint pain and discomfort.. I can handle just about anything except more UTI's. :crying:

    #309154
    lynnie_sydney
    Participant

    Manda
    I've had a 15 min tel consult with her so I know she does. And, to me, it makes sense that, as those were your first symptoms originally, to check it out with your AP doc. I certainly would. Hopefully what you have will take care of it. Hope you are also drinking plenty of water (Dr D told me 3 lites a day purified). Trust you will be feeling better soon. Lyn

    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)

    #309155
    Bill
    Participant

    Hi Manda

     Have you ever heard of a product called d-mannose ( I believe) check it out. It is supposed to really help people to quit having recurrent uti's. I believe it is a sugar of some sort and it is supposed to be very effective. I Believe intergrative MD. Dr. Jonathin Wright of washington state has written some articles about it. It is also used by some vet's to help animals with the problem. My understanding is that it is  effective and essential for someone with recurring problems. It seems to prevent the ability of the bacteria bio-films from sticking to the bladder walls, thereby allowing them to be flushed out. Many times after treatment with an AB some of the bio-film remains settimg you up for the next infection. D- mannose seems to prevent that. It should help, please check it out.

    Hope your feeling better,
    Bill

    #309156
    Manda
    Participant

    Lynnie.. I have a big problem with drinking. I was also told 3 litres of pure water (or boiled) too, but I just cant. I'll try, but .. I always fail. Especially with the double-edged sword of a UTI.. you don't want to drink because it means going to the toilet. Going to the toilet means pain. Argh.

    Thanks for the suggestion Bill, but I'm limiting my sugars.. well.. I should be. I was naughty and ate a couple of bowls of sorbet last week during the 30+ weather day and night (we couldn't sleep and it was horrible).. We've since thrown the rest in the bin (more than half a 1 litre tub! ouch.. lol) but I can't help but think that could have been a contributer too.. :doh:

    I've tried cranberry juice and cranberry pills, with no success whatsoever. I've been tested via radioactive liquid to see if anything physical is causing this, and all was fine. I've used Ural and even drank bi-carb and water daily. I've taken antibiotics as a preventitive measure in the past, which worked really nice, until it didn't work at all anymore.. then it was worse than ever.
    There are 2 things that have worked for me: Either I give up sex 😯 (worked every time except for now), or be strict on the AP and diet changes.

    There were plenty of other reasons I should have seen a Doctor that cared before.. but UTI's were the most life-disturbing issue I had. I could live with stomach issues, bloating, constipation, pimple rash covering my back sholders and chest, period pain that hurt so much I thought I was going to die, waking up with back pain every day, foggy brain (literally living on auto-pilot), ear infections etc etc.. but I really really really hate UTI's. :angry:

    PS: Speaking of vets – I had a cat who had the same issue. The vets and I believed it was stress causing the issue. (We'd gotten a new kitten who was terrorising her something terrible.) She and I certainly had an understanding. She knew when I had another UTI and would lie on my tummy and keep it warm. She was certianly a sweet cat. I could tell when she got one, and got her onto the antibiotics as soon as I was able. I miss her terribly (especially at times like this..) 🙁

    #309157
    lynnie_sydney
    Participant

    Manda
    Hope you manage to talk to Dr D tomorrow – and maybe a call into Lynn (naturopath) would also be helpful.

    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)

    #309158
    Manda
    Participant

    I wasn't able to speak with her. 🙁 Can't book a phone consultation till March sometime, and she wasn't there today. I'll try Lyn. I put-off taking this new antibiotic, but it's probably for the best anyway since I was sick last night. I ate some chicken and rice with a little Tamari in it for dinner, and was up till 6am with killer stomach cramping and the associated running to the bathroom. I had, and still have, a taste of salt in my mouth. This has been the worst week of my life. :crying: I don't know if this is still considered herxing or if I've hit a wall. :headbang:

    #309159
    lynnie_sydney
    Participant

    So sorry Manda but hang tight.  I really do believe it is herxing.
    PS Have you tried the other clinic she works at? If you dont have the number I can e-m it to you

    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)

    #309160
    Manda
    Participant

    Hi Lynnie, I have the number, but my note says she's only there Tuesday and Thursday. Nothing about Fridays on my note.

    You're probably right. It's just me over-reacting and worrying myself to death. I'll just take the antibiotics and try and get through this phase of treatment.

    The printer ran out of ink, otherwise I would have faxed her an update by now. I've been too sick to get another one. I feel sorry for my husband. He's working every day, trying to keep up with a small amount of shopping, kept awake by me (especially last night)… I havn't been able to walk to the shop or do much around the house even. I can't wait till I feel better and can get back to work, go food shopping, cook, etc.

    I'm seriously considering a move back to Victoria. Living in SA, this far away from the Dr. really sucks. We've been here over a year now, and although Adelaide is a lovely little city, and the rents are cheaper, it's just too difficult to have a long-distance relationship with my Dr like this. 😉 We had considered moving back to the USA (my husband is American) this year, but with my health the way it is, it'd be a financial disaster with the cost of insurance and medical there.

    Anyway.. rambling there.. :blush: Thanks again. I appreciate the words of wisdom.

    Edit: Just got the results of my test – I don't have a UTI.. uhh what?! The local Dr said I can keep taking the antibiotics anyway. I'm confused.. but this isn't the first time I've got a negative test. (Once, I was literally peeing blood.. it was negative..) Most of the time, Doctors don't bother to test me anyway. I'm still too sick from last nights illness to tell if I am feeling better or worse. I still have a really salty mouth, too! Yuck.

    #309161
    John McDonald
    Participant

    Manda,

    UTI's since 16, some not diagnosible, now joint pain. And your UTI flares when you start AP but it isn't a UTI. Gosh it sure sounds like a herx. If it is a herx, or if you just want to find out, it should respond to dosing frequency. The idea is to kill the microbes, not the patient. What is your AP regimen? Would doc let you dose MWF? If you are dosing MWF would doc let you skip Friday? Would doc agree to trying half the dose? The effects of Minocycline last about 48 hours with a wee bit hanging on for another day. Most herxes are same day as dose or next day herxes. Some really nasty die offs last quite a bit longer, but most are same day or next day. So you can have a break if you need it but still kill the microbes that are causing the recurring UTI. However AP isn't fast; more like glacial. This takes patience which is all the more reason to find a sustainable dose.

    Good luck. 

    #309162
    Manda
    Participant

    Your post made me :), John. I havn't mentioned the antibiotics I'm on and the frequency before! But, as far as pulsing goes, I take them twice a week. Monday and Thursday. I find it so difficult to imagine why such low doses are knocking me around so much. So, every Monday and Thursday, I take the following:

    62.5mg (1/4 tablet) of Klacid (Clarithromycin)
    187.5mg (1/2 tablet) of Ceclor (Cefaclor Monohydrate)
    75mg (1/2 tablet) of Biaxsig (Roxithromycin)

    My doctor told me the bug replicates only twice a week. I'm not RA, so maybe my antibiotics are very different to others. Personally, I really think I have Lyme, but havn't brought it up with Dr yet.

    Another difference between last time was this time I don't have any drops from the naturopath to take. Last time, the Dr asked if they were making much difference (making me feel better), and I didn't think they were. Now, I think I see why.. they maybe took some of the edge off. 😉

    I think I'm feeling better .. mind you, I've slept on and off all day. Thanks for letting me get it all out. What a week!

    #309163
    casey
    Participant

    Hi Manda,

    I read your story about the UTI's and i will tell you mine.

    Last yr in Feb , i was diagnosed with mixed connective tissue disease which is overlapping symptoms of lupus, scleroderma, Ra and dermamyostosis. Blood tests showed tis however, i had only symptoms of rashes and hives that came and went constantly. I also had some protien and blood in the urine at that time but felt nothing. I searched for help and found this board. I then got Dr Browns book, printed abunch of info and took it to my GP who is not a AP doc but was  openminded to AP.

    I then began with low dose doxycycline, 50 mg mwf. Within 5 weeks, i developed a severe UTI which moved up to the kidneys and went on levaquin for that for 3 weeks. This is a floroquinolone which is used by some such as Prof Garth nocolson for mycoplasma infection.( I have it). Anyway the infection went away and i resumed doxy up to 100mg mwf and kept going slowly to 200mg mwd.UTI came back I then found a AP doc who put me on Zithromax 250 2x a weekand doxy 200mwf. In Jan , i had another UTI which was probably the same one hanging around and i went on levaquin again for a month. I then switched to doxy 200mg daily and zithromax 250 2x a week and have contiued this way.  I have been doing this for a month now and have normal kidney fiunction and urine tests now. And hives and rashes are still there but not near as bad.

    I also had to switch to a gluten/dairy free diet as we have sensitivity to those things that added to the inflammation.

    In my opinion and my docs, the low dose doxy set of the UTI which , in my case was a herx . A good thing but scarey as those organs are sacred.  you may have the bacteria in that area and as doc Brown said, mycoplasma has an affinity for the urinarygenital tract and lungs and joints though it can be anywhere.Probably all bacteria are capable of this.

    I think this may be a herx for you JMO and i do second the D-mannose as i used that too at the time. I always take d-mannose whevever i go now in case.   

    Levaquin is not broadly used in AP on this board but for me, i truly think i would have been in BIG trouble without it.

    Levaquin is bactericidal which kills bacteria and doxy, mino and so on are bacteriostaic. I needed a “kill-off” right away to avoid anymore UTI's heading up to the kidneys.Clarithromycin (biaxin) is bacteriacidal when used in high doses daily.

    I am in no way promoting or telling you what to do, just giving you my story as it may help you in some way.

    Casey

    #309164
    casey
    Participant

    Forgot to add, never was diagnosed with UTI or kidney infection, though i saw a kidney specialist who believed the mycoplasma was the culprit.

    Casey

    #309165
    casey
    Participant

    Manda,

    Ceclor is celphsporin which is similar to the penicillin family. I believe it works on cell-wall bacteria, not cell wall deficient bacteria.

    Casey

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