I feel so good then I feel so horrible!!?? whats up

[gordbentley]

ok, no doubt the mino is working. but seriously i go from feeling so dam good and then its like bam!!! now my knees are cracking again and feeling weak. they were so beautifully healed and now this. but im sure in a week or so im going to go on another long stint of feeling great!! is this up and down thing normal? i started ap and had a miserable 3 weeks. then 3 months of solitude (no pain) then three weeks of miserable pain again. then about just over a month of feeling great. then a small 1 week hiccup of not feeling as miserable but still achy. then a week of feeling greatish. today was the sorest day ive had in a long time and i had to suffer looking normal getting a tour of the police station at school. still though more good days then bad now which is a complete turn around considering before AP it would be 2 weeks of pain 3 days of bliss, 2 weeks of pain, 3 days of bliss. Im not even sure what question im asking here. just curious if anyone else gets this in the same fashion as me and any tips would be great. im a big suck and refuse pain killers so i guess thats my fault.

[maz.aust]

If you won’t take ‘pain killers’ why not anti-inflammatories .. at least they would help ! & are you detoxing ??

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[gordbentley]

i take inflamatrix and i drink green tea and take live co. liver detoxifiers. i also put flax seed and goji berry in my natural plain yogurt with cinnimon in the mornings. i drink two to three cups of green tea a day and lots and lots of water. i juice with mass veggies a few times a week as well. i eat a pretty balanced diet and only eat rye bread. i dont eat preserved foods much unless i find myself at a party and i dont wanna seam like a stiff lol. i also utilize my hottub every day to get my sweat on if im not running which im definitley not running today! lol if you got any hints on detoxing let me know 🙂 ive done the epsom salt baths but i only have so many hours in the day.

[gordbentley]

i thought anti inflammatories were pain killers? im just not one for drugs. ive been that way my whole life, not even for a headache. i cut my thumb in half once, broken bones and fell 12 feet off a ladder too. never took anti inflams or pain killers for any of that. everyone says i have the hugest threshold for pain they have ever seen. i never minded pain until i got this arthritis business.

[maz.aust]

My understanding is that anti-inflam’s take down the swelling & being that swelling causes pain it is a natural thought process for me to believe if I get the swelling down I won’t be in as much pain. Sorry I can’t help with any detox methods I generally don’t need them unless I am herxing really badly, am sure others will jump in here to tell you what they use.

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[gordbentley]

i understand that. but nothing is ever swollen that hurts on me. its very confusing. only once has one knee been swollen and that was the day before i started AP. it never happened again. im pretty skinny so if something is even slightly swollen i would see it. what anti inflams do you take maz.aust?

[Lynne G.SD]

Hi Gord;
This is the typical 2 steps forward,1 step back,1 step forward,2 steps backward dance that just about everyone goes through.In time it becomes 2 forward,1 backward and things slowly improve.This can go on for a year or even years.AP is super slow.
When talking about inflamation it is not inflamation as in swelling that you see.It is inflamation at the cellular level.Vascular inflamation can cause heart attacks and that sure is not visible.Hope this explains things a bit.
Lynne

[maz.aust]

I too don’t actually see any swelling but my doctor assures me it is internal so I take voltaren 50mg tablets, if I am really sore I pop a voltaren & within the hour feel a whole lot better; I tried celebrex etc but it didn’t work at all for me, however you need to check with your doctor if voltaren is ok for you ??

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Maz]

Hi Gord,

Yea, Lynne is right…it’s a back and fwd dance all the way to remission. This can be unnerving, so it’s the longterm trend you want to watch for…flares will still occur for a while, but these should be decreasing in intensity, duration and frequency with time until they gradually ‘burn out.’ Brown used this therapy to slowly “re-train” the immune system to function normally again without over-reacting to what he dubbed, “bacterial allergy.” It’s all in the book, if you have a copy…I’ve read mine 5 or 6 times now and get something new out of it every time. Think I’m about due for another read as a refresher, actually. 😆

Hope this flare passes soon. Have you tried any natural anti-inflams?

[gordbentley]

im allergic to almost everything I love now 😛 I smoked a joint after christmas and it put me in the hospital with hives head to toe and my throat closed up. I cant even use that to kill the pain 🙁 mind you with my new job on the fire department I cant smoke it anymore. but oh well, onward and upward I always say 🙂 soon my body will chill out

[motherbear]

Hi Gord,

I know you hate the idea of taking any meds but I thought I would let you know what works for my son the most.
He takes Voltarol suppositories. He swears they are the only thing that helps with the pain and stiffness associated with AS.
Also the tablets did nothing. By taking it in suppository form he doesn’t get any stomach upset.
All European countries except the UK give anti inflammatories by suppository for that reason.

Take care.

Caroline.

[Fkendall]

Hi Gord,

Haven’t visited website for a while but currently on oxytetracycline and more sore than I have been for a long time, so checking in for support! Like you I don’t swell and the pain comes and goes and moves around — hips, knees, ankles, thighs. Currently in left shin.
I just want to concur that it is a long hard struggle and sometimes I feel as if I’m going nowhere slowly — been on AP one week per month for 16 months. But before I began the pain was getting steadily worse and the fatigue was crippling. Now I have good weeks and sometimes there is almost no pain at all. I do use anti-inflammatories and paracetemal when the pain is bad. I guess we just have to hang in.

[lynnie_sydney]

Hey Frances, good to see you again though sorry it’s because you’re having some issues. Good that you can see a bigger picture trend because we do need that to keep us going. This sure aint a fast road we’re on and there are often lots of bumps in it. Seem to remember your protocol is kind of geared towards a Lyme-like trigger for your RA. 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)

[Fkendall]

Hi Lynnie,

Yes it does seem similar Lyme protocol, but it is the way my Doc treats all her patients for mycoplasma, rickettsia & chlamydia. I take a big dose for a week which knocks me to differing degrees – but then I do get a three week break which is nice!
Best wishes to you!

[lynnie_sydney]

Frances – just caught up with your Personal History and Progress thread. Funnily enough, I had severe lower back pain in kidney region on day before New Year’s Eve. No sleep all night, level of pain in the region was causing me severe nausea and unable to put pressure on my back or my abdomen, so awake all night. Ended up on NYE in a regional medical centre (I was away from home) and, given that I was doubled over, was administered a combo morphine & anti-nausea shot! Apart from initial high level of ketones found in my urine, no infection found. Subsequently, all urine and full bio-chemistry then ultrasound on kidneys and abdomen all NORMAL. I had initially thought definitely a kidney stone which I assumed I had managed to dissolve through buckets of lemon water and intermittent baking soda in water. Yet there was never any sign of passing any tiny particles, which I kind of expected. Now, having read your update and similar experience, am thinking that maybe it was yet another symptom of the still-mysterious bunch of pathogens inside. 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)

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