Update from AP_Lynnie please read

[Sydnie]

[lynnie_sydney]

Sydnie – am not quite sure what was exchanged between you and your AP doc. If it is Dr H then he is very knowledgeable and experienced and he is the one to be giving you advice. It is not uncommon for a very short course of steroids to be rxd to bring unrelenting inflammation under control and also sounds like Dr H wants you to get your symptoms checked out with your local GP. Traditional AP regimes do allow for short courses of small doses of pred to bring inflammation under control if necessary. 

I seem to remember you've had quite a run with things that may have upset your wellbeing in the last several months – an op, IUD and some possible candida issues? Doesnt sound as if Lyme is in your mix (generally immuno-suppression is not recommended by Lyme docs). It may be that, with everything that's been going on for you, Dr H. believes a short course of steroids may help calm things. However, I'd be emailing him back and asking those questions of him. 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)

[Sydnie]

[Sydnie]

 

 

[lynnie_sydney]

[user=289]Sydnie[/user] wrote:

Lynnie

Im not convinced re the Steriod option.  I dont know if Im that unwell.  some of my symptoms have returned but others have now abated since the start of the flare-is that not a good sign.  Mebbe I should wait another couple of weeks before I think steriod…..I think its a huge step…The other part of me says get it done and then let Mino takeover again  as I know it works so well for me!

you seem so knowlegible and Im not…would it be poss to speak in person.I understand if thats not appropriate. Happy to call you as its sometimes difficult by writing..

Many Thanks

 
Sx

 

Sydnie – I dont think I can give you any more than I have done in these responses. I dont have a history of steroid use so cannot use my own experience here, can only tell you what has been done historically and short-term on some Antibiotic Protocols.

Steroid use in the short term is a different kettle of fish to steroids (such as pred) used in a longterm treatment regime, which can produce a number of side effects and cause people to have great difficulty in coming off them, due to the fact that the adrenals stop producing their own steroids. 

However, perhaps you need to listen to your own intuition here and wait to see how things go. Ultimately we are the ones who need to make the decisions about our own health care. If your gut is telling you to wait, then maybe you have your answer. 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)

[Sydnie]

Hi Lynnie

Im very grateful for your generous time.  To be honest I think I gave my AP doc wrong impression of how bad things were and he was concerned for me and suggested I see my own doctor and that my own doc may consider steriods if required.  This now is not the case as his original advice of upping the mino is working well.  Of course I would never question my AP docs advice .  He is a wonderful , caring and experienced doctor.

Many many Thanks

Sx

[lynnie_sydney]

[user=289]Sydnie[/user] wrote:

Of course I would never question my AP docs advice .  He is a wonderful , caring and experienced doctor.

Many many Thanks

Sx

Sydnie – I think it is in our own interest to be prepared to question – even docs who are wonderful and caring. No one has all the answers. My personal belief is that we need to be the CEO of our own wellbeing, gathering the best expertise we can find  around us. But ultimately, it is our life, our health and our decision. Just my personal view. 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)

[Alli]

Hi Sydnie,

I read your email and want to share with you my last experience.  A few weeks back I found myself being extremely tired and out of breath at the slightest exertion of any kind.  Walking a few steps and even talking felt like it was a pretty big strain.  And on top of that my joints were achey.  At first it was my knees and I told myself it was because I had gained about 5 pounds over the summer (I know, WHO gains weight in the summer, right??).  As time went on, it was my elbows, shoulders, wrists and hips.  Plus, I was having an even harder time sleeping, there were many nights when I was only able to get 3, maybe 4 hours of rest.  I was exhausted by the time I finally decided to go to my GP. 

They checked my blood pressure and it was pretty high for me (168/94) – mine consistently runs 90/60.  I have never had high blood pressure before.  I was a little bit nervous as to what was going on.  My oxygen sat was 91, which is a little low for me.  Dr. came in and I told her of my symptoms and also told her I didn't think it was a lung issue, which is usually the case.  She listened anyway, thankfully. She told me there was no air moving in my lungs.  No wonder my breathing was labored.  She said that I had inflammation in my body and put me on prednisone taper starting at 60 mg for 2 days and reducing by 10 mg every 2 days.  I also was prescriped Larazapan(?) to help me sleep.  I was instructed to come back down in the morning to have my blood pressure rechecked. 

But for those of you who remember my first post – my mom has a blood pressure cup machine.  So, she brought it over to me and I took my own bp at home throughout the evening and the next morning.  It steadily dropped and by the next morning I was 127/77.  Now, I am back to 100ish/70ish, normal;). 

Apparently, I did have an inflammation of some kind that was causing my entire body to ache.  By the next morning, I felt 80% better.  No achey joints (that prednisone is definately a 2 edged sword).  It worked it's magic on my joints and in my lungs.  I am done with my taper now but when I went to see my lung dr. on 9/14 he diagnosed me with asthma!  So, since 9/14 – I have been using Advil 2x/day along with 2/3 treatments a day with Xopenex and Albutural puff as needed.  I do feel better so maybe I do have asthma on top of everything else.

I know I sort of got away from my reply to your issue.  What I wanted to tell you is that I continued with my minocylcine 100 mg. 2x/day during the course of prednisone and I didn't have any problems at all.

Hope this helps.

Take care……Alli

 

[Sydnie]

[user=30]lynnie_sydney[/user] wrote:

[Sydnie]

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