My rheumatologist said yes!

[lynnie_sydney]

Well, there you go, Simon – a range of views and things that have worked/not worked. Responses can be very individualistic so you may need some AP expertise to assist with tweaking as you go. As a footnote to my previous post, my first RB contact some years back had PsA and he went into remission on a MWF 100mg mino regime (plus I think some dietary changes). 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)

[hotspur2904]

Thanks again everyone for your feedback and comments. They have been really useful.

I guess I was concerned about taking 2 x 100mg Minocycline daily but it's interesting to see how many of you (particularly with PsA!) that are on that dose.

I've decided to start on 200mg a day to begin with plus a daily probiotic together with my diclofenac and lansoprasol.  I'm not going to take any supplements but based on how things go I can add them as I need to. 

I'm seeing my family doctor on Friday who I can get an NHS prescription from (That's c

[katieb]

Hi Simon,

Just noticed all this good news and wanted to add my congratulations too ! Well done on managing to persuade the rheumy. :dude::dude:

I haven't time to read all the replies right now, (I will later on), but I wish you all the very best on the AP – just wanted to say how pleased I am for you. I do hope it kicks in fast, like it did for me (5 months to start turning around – but that's RA of course).

Dr H has just put me down from 100mg Mon-Fri to 100mg Mon,Wed, Fri (don't know the rationale for this).

Also I found Arcoxia to be a very good NSAID which didn't give me stomach problems though I took it daily for 6 mos or so – stopped it completely now.

And I take 1000mg 'Ester C' to ward off the skin discolouration.

Here's to a bit of herxing (good sign) but not too much !!!

Katie :roll-laugh::roll-laugh:

[spacehoppa]

Hi Simon,

Just wanted to add my congratulations as well on persuading your rheumie on the antibiotics – quite a feat!

I too have the pits in my nails and so have been diagnosed with juvenile rheumatoid arthritis (as I got it as a child) and psoriatic arthritis, and just to confuse things, recently I got a diagnosis of Lyme disease – just for kicks 😉 .

I'm about to start on a regime of 200mg daily minocycline, as well as clarithromycin 500mg twice daily, and hydroxychloroquine 200mg twice daily 😯 , which kind of scares me, so I sympathise with you!! (The big doses of multiple antibiotics are to treat the Lyme disease, which needs more aggressive treatment.)

I also take arcoxia, prednisolone and humira, so quite the cocktail. Hopefully we'll both be able to report huge improvement within a few months!

I'm rooting for you… and so impressed that you managed to find the AP so fast. It took me 20 years :headbang: .

Well done again, and I shall be tracking your progress with interest! I'm also in the UK by the way, so if you ever want a chat just let me know.

Katie – Way to go on getting off the Arcoxia – wow!! 😯 You must be doing well! That's terrific news!

[Kim]

Well done, Simon! 🙂  You're off to a great start and should have excellent results.

Wishing you the best…….kim

[maz.aust]

Whooo Hoo Simon,

A patient persuading a Rheumatologist — Wow !!

Wishing you all the best,
Maz – Aust

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]

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

I'm about to start on a regime of 200mg daily minocycline, as well as clarithromycin 500mg twice daily, and hydroxychloroquine 200mg twice daily 😯 , which kind of scares me, so I sympathise with you!! (The big doses of multiple antibiotics are to treat the Lyme disease, which needs more aggressive treatment.)

Ruth, thanks for sharing your new Lyme protocol…just stopping by to let you know it's pretty darn close to the protocol I started on, too. Only diff was that I took tetracycline 750mg bid instead of mino. About 6 months in my doc added bicillin shots and I dropped the plaquenil the month before. Things sometimes need tweaking along the way, but I do find it interesting that your new doc is following pretty much the same protocol my LLMD here used for me in my first year. I did very well on this combination….you can check out my bloodwork chart (thanks to Tom 'TBird' Scott). Would be great if you could get monthly labs, too, to compare notes…sort of a little science experiment to see if you follow the same pattern in your progress.

All the best, Ruth…I will keep you in my thoughts as you get going…stay in touch with us, okay? We're all rooting for your here, you know!

Peace, Maz

PS Katie….you know we're going to be hounding you for your testimonial soon! 😉 So happy to hear you're progressing so beautifully.

 

[spacehoppa]

Hi Maz,

Thanks for the encouragement! To be honest, I've begun to wonder recently whether I should quit the Humira whilst on these antibiotics. I can just about manage without it, though it's tough, and may require me to up the steroids a bit again.

The reason I say that is because I have to stop the Humira whenever I get an infection, such as recently, when I had swine flu. And Lyme disease is obviously a pretty bad infection in comparison to most things you can catch, so these thoughts are whirring around my brain now. Dr D copied my rheumatologist into his most recent letter to my GP, so they will be aware of the diagnosis. So, anyway, I'll bring it up next time I go to collect the humira.

Plus, to be honest, these new warnings about humira et al causing cancer in children has gone into my psyche. It reminds me just how little is known about the effects longterm.

Anyway, I'd love to get my monthly blood results for you so I can track my progress, but getting blood results out of my hospital is like trying to get blood out of a stone, they don't even like me to see them on the computer screen, so we'll see how I go. They're going to be so mad that I went out of their jurisdiction to get the Lyme disease test done that I'll be well and truly in the doghouse as it is!

I'm glad my protocol resembles yours. That gives me some comfort and hope! These bicillin shots you talk about – were they in your joints or just intramuscular? Just wondering… it's not something I've heard of before. And did they help?

Sorry for hijacking your thread Simon – didn't mean to!! Can I just say again how impressed I am with your tough stance. You are far braver than me! I've got another rheumatologist with some blood test results to do my persuading for me, and I still think I'm going to be in for a fight. *Sigh* Hopefully it'll all come good, and soon!

[lynnie_sydney]

Ruth – I wish you the very best on this new protocol. I really feel for you, with everything that's going on in your body, plus two little ones to take care of, that you also have to fight the system and the rheumie. Just not fair:headbang:. You are one very strong woman.:dude: 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)

[Maz]

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

Thanks for the encouragement! To be honest, I've begun to wonder recently whether I should quit the Humira whilst on these antibiotics. I can just about manage without it, though it's tough, and may require me to up the steroids a bit again.

Anyway, I'd love to get my monthly blood results for you so I can track my progress, but getting blood results out of my hospital is like trying to get blood out of a stone, they don't even like me to see them on the computer screen, so we'll see how I go. They're going to be so mad that I went out of their jurisdiction to get the Lyme disease test done that I'll be well and truly in the doghouse as it is!

I'm glad my protocol resembles yours. That gives me some comfort and hope! These bicillin shots you talk about – were they in your joints or just intramuscular? Just wondering… it's not something I've heard of before. And did they help?

 

Hi Ruth,

Lyme (in its cell-walled form) seems to respond really well to penicillins. The Bicillin IM shots I had were intramuscular and given weekly into the hip. Doc ordered me 4 at a time, which I kept in the fridge in their pre-filled syringes and then a nurse friend of mine gave them to me every week. It's a form of long-acting penicillin, which bypasses the gut and doc said he found was very good for those with arthritic manifestations of Lyme. I did quite well on them for about 5 or 6 months, though I had to keep an epi-pen on hand in case I suddenly developed a penicillin allergy. That sort of unnerved me, I will admit, but I was fine and it was never a problem. Some Lymies have repeated rounds of bicillin shots, usually in time periods of 5 or 6 months at a time. I started to do really well after that in my second year, so never went back on them. I was quite pleased to be doing the shots as I used to suffer alot from strep, so figured it was killing two birds with one stone…lowering strep titers and going after Lyme. My doc added these shots in at about the 6 or 7 month mark in my first year of treatment.

I really empathize about your fears with humira, but in all honesty, IMHO I think the pred is worse. 🙁 Lyme loves pred. If you can get that down first, you'll be better off in the longrun. The humira you are likely going to have to wean really slowly, too, but I'd be hesitant to stop it cold-turkey right at the beginning when you're likely to be herxing in a big way and it may save you some further joint damage. Would be awful for you to have to stop your abx when you've come this far now.

Does Breaspear do anything like IV glutathione? Just wonder if this is worth looking into to boost your immune function and help your liver clear those die-off toxins faster. If not, you might be able to substitute the glutathione suppositories….Susan Lyme/RA found these to be really good for detoxing. Btw, anyone seen Susan lately???

No worries about the bloodwork…it was just a thought, Ruth. 😉 It's appalling that you can't get copies of your own bloodwork, but you don't need that stress now, fighting for them. Just thought that the Breakspear people might have given you a monthly bloodwork requisition to follow your progress. They seem to be very conversant with all things Lyme, so wondered if they would also work like the LLMDs over here in that regard.

 Simon….sorry to change the subject on your thread, too. Hope you don't mind we women-folk nattering!

Peace, Maz

PS Something must have gone iright over my head…you had swine flu???

 

[spacehoppa]

Hi Maz,

(Sorry again Simon!)

Thanks for the reply. As ever, you're making a lot of sense. The side effects of the pred are pretty bad now, lots of weight gain around the tummy and face and top of neck, I await my bone scan results next week with dread, and my mum has had two cataracts removed because of pred. So, so far anyway, the side effects of the humira do seem less overall.

Plus, I just need to know that I *can* reduce them. I have been on a fairly high dose for so long now that I fear that I may have an Addison's type problem if I ever try to get off them altogether. At the moment I'm on 12mg/day, which is about 5mg too high for my liking.

I was hoping the humira would have kicked in more to help me reduce the dose, but so far (as I have found in the past) I get a two day flare after taking the humira, probably due (in my old rheumatologist's words) to an 'occult infection'. Boy, if only he knew, huh!

Anyway, thanks for the wise words as usual. I think you're probably right actually, thinking about it more. But the trouble is the decision may be out of my hands, as they are always telling me when I have an infection to stop the humira (and never say anything about the pred). We'll see I guess.

Thanks, as ever, for your considered replies. They always make me think a little bit more, which is good 🙂 .

Oh, and the swine flu. Yes, we had it for 4 whole weeks! I was the most ill, although we did take little George into hospital with laboured breathing, but he was okay. I was just being a little overanxious probably. We were all very ill for weeks though, so don't believe the bunk about it being a mild flu – for some maybe – but for the likes of us, it's long and very draining.

[Maz]

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

I was hoping the humira would have kicked in more to help me reduce the dose, but so far (as I have found in the past) I get a two day flare after taking the humira, probably due (in my old rheumatologist's words) to an 'occult infection'. Boy, if only he knew, huh!

Ruth, now that you're starting your antibiotic protocol proper, you may even find you get fewer infections with the Humira. You're going to need your immune system to get those bugs, so ultimately, weaning off both and strengthening immune function will be the goal, but getting off that horrible (I know, but oh sooo wonderful!) pred reaaaalllly slowly in your first year will be a great milestone. Just go slowly and don't push weaning off too fast even if the temptation is overwhelming. Poor Linda has been through such wars with all this, but her goal now is to get on the Simponi (new biologic drug here) and then get back on abx when her gut is back on track. It might feel a bit like walking a very fine line for a while, but it will be worth it in the long run. Lynnie posted a very good pred weaning guide link a while back….I lost the link in my crash, but maybe she will see this and repost for you.

I think I already sent you the Columbia link with the Finnish mice studies that demonstrated that biologics force Lyme out of its cystic form…the form that is so resistant to abx. So, you may well be able to hit more spirochetes while on your biologic…just a Maz theory, but it's that darn cystic form of Lyme that is what causes such damnable persistence.

You poor things…I can't believe you all got hit with swine flu. I was wondering where you'd disappeared recently and how things were going…I guess that exlains that. :doh: I'm so glad you're through the worst now. Poor baby George…I don't blame you in your reactions…I'd have done the same. Just not worth the risk with our tiny ones.

Ruth, you know where we are if you need some cheerleaders as you get going with all this.

Peace, Maz

PS Sorry from me, too, Simon! 😉

[lynnie_sydney]

Ruth – here is a link to what I posted a while back on prednisone weaning and also a link to a post from Randy on weaning off the last 5mg pred.  Lynnie

(http://www.rbfbb.org/view_topic.php?id=2004&forum_id
The article is: Ask the Doctor About Getting Off Steroid Drugs
http://www.westonaprice.org/askdoctor/steroids.html#cowan#cowan

http://www.rbfbb.org/view_topic.php?id=2168&forum_id=1&highlight=prednisone+weaning

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)

[spacehoppa]

Hi Maz and Lynnie,

Can I just say I love you guys! Every time I think 'Can I do this?' your helpful replies make me think 'yes, I can!'.

I had (already) forgotten about the Finnish study until you reminded me Maz, and although I remember having read about weaning from pred before (splitting the dose, reducing the nighttime dose to nil and then splitting again), I had forgotten the exact details.

So thank you both of you! I just need to get the damn docs around to my way of thinking now!

Oh, and as for the swine flu, I was just glad to have it in Summer rather than Winter to be honest, when we'll probably be sick for many months in a row. And you're right Maz, I had forgotten that the abx will give me some protection against bugs and colds and such. Lots to be thankful for and to look forward to! Getting off the pred should really be my number one goal. I had stopped even believing it was possible. Thanks for reminding me it might be!

[lynnie_sydney]

Ruth – you have a very special place in my heart. You are such a trooper, have had this for so long and yet you never seem to give up or give in to anything. Even with having the swine flu – family wide no less – you've been able to find something positive to say about it! Wish there was a blow-a-kiss emoticon in our selection cos I'd send you one. Lynnie xo 

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)

[Author]

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