Been away a long time…

[spacehoppa]

Hi everyone, Sorry I’ve been away from the board for so long. I’ve been living my life and getting around pretty well, even swimming with my kids and walking the dog, just being happy and mostly well!

But now I’m in a flare again. It all began when I spoke with my Lyme Dr, Dr D and he told me that he was retiring in December. From that moment on I’ve been flaring, seemingly getting worse not better. I know that my arthritis/Lyme is heavily influenced by stress, but this took even me by surprise.

I don’t think it’s just this news, although it is bad enough given that he’s the only rheumatologist treating Lyme in the UK, I think that reducing my steroids down to 5mg has also triggered the flare. Unfortunately, I take my steroids morning and night, (I had to take them this way whilst trying to get pregnant with my sons as it was the only drug I was allowed to take). Consequently, I think I have suppressed my adrenal gland into total inactivity. So it seems that when I reduce my steroids to 5mg, I am simply taking too little to cope with the stresses of my daily life. I ended up pretty much a crying gibbering wreck before my husband took 10 days off work to help me recover. Steroids are such a hard, hard thing to get off.

Anyway, I am just hoping that my GP is prepared to continue prescribing the abx without Dr D’s direction. I can see why he would not want to do that. Ugh! Life doesn’t get any simpler does it. Sorry for the whine!

I am horribly out touch with everyone on the forum, I’m sorry. Just to top it off our family business is also struggling, so finances are tight as well. If I have to pay for my drugs out of my own pocket that would be extremely hard to do right now. I guess stress is the main enemy right now. I have an appointment with my GP this week to discuss all this, so wish me luck. I’ll be glad once it’s past.

I hope everyone is doing well. I was doing so well myself, until I had to admit defeat and re-increase the steroids back up to 6mg again. Love to all.

[Trudi]

Hi Ruth–
So happy to see your post; not happy to hear about your setback.

I think you are correct in that reducing the steroids is causing you grief. I’ve often been tempted to go back on steroids to be a bit more mobile, but do remember all too well the rebound effect when going off.

Without a doubt stress does play a HUGE part in this disease. Hopefully, things will settle down for you.

Will keep 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?

[nspiker]

Hi Ruth,

Good to hear from you again, but sorry you are having a few challenges 🙁 . Stress is a terrible thing, and probably the precursor to most of us getting sick. It”s probably the last thing you needed was to hear your LLMD was retiring. Did he have any recommendations as to who might be able to handle his patients? Would he consider consulting with your GP when he retires? 6mg. prednisone is a very low dose. I wouldn’t worry about upping your dosage with such a small amount.

Since you have been feeling so well, could it be possible that you have not been as diligent at detoxing or binding toxins? Maybe with all the added stress, your inflammation has increased. I’ve found Omega 3 Fish Oil and Tumeric to be a powerful combination for inflammation.

Let us know how things go with your doctor. Take time for yourself, and be sure to do things that make you happy 😀 .
nancy

[lynnie_sydney]

Ruth – sorry to hear about your setback, but nice to hear from you. Nancy has made some very good suggestions – in terms of how to view the small amount of pred to get you through, about Dr D possibly consulting with your GP (like Dr S in Iowa I guess), about de-toxing diligently (any chance of a far infrared sauna there?) and, importantly, taking time for yourself to breathe and centre. Some of the American East coasters are not around at the momemnt, some bunkering down and others having evacuated etc due to the hurricane. Am sure Maz and others will add their wisdom to the thread when they re-surface. Take care, 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)

[spacehoppa]

Thanks guys,

Dr D is suggesting handing over to my GP, but my GP may well not want to take it on. An alternative route would be to go back to Breakspear, but even then my GP might be reluctant to keep prescribing me these meds on the NHS. He has always surprised me with his generosity so far, though, so I’ll just keep my fingers crossed.

Nancy, you may be right about detoxing and such. Reducing the steroids to the 5mg mark does always seem to make me flare. I keep saying to my husband that perhaps I should put off trying to get off them altogether until both kids are in school. As odd as it sounds, I do find being with my kids all day pretty stressful, especially when my knees are too bad for me to take them out anywhere.

On the upside, I didn’t mention that the flare is *only* in my knees, which in itself is a HUGE win because previously if I flared, my whole body would be involved. It’s just a shame that the knee joints are so necessary for looking after small kids 🙄 .

Also, I should mention that I bought an infrared sauna ‘bag’ for my birthday this year and I use it pretty regularly, though perhaps not often enough. Probably about once every two weeks at the moment. I did notice my arthritis was better when I was using it 2-3 times per week, but then my steroids were higher too. It’s so difficult to unpick it all isn’t it. But you’re right, diligence may be key.

I think once James is back at school and I get my morning nap back again (usually I nap when my youngest son does) I will get back my previous gains. I think I’ve been prone to trying to do too much too soon, as usual. Lowering the steroids below 5.5mg seemed to give me nervous exhaustion more than joint pain, so I think it may be a lack of cortisol issue as much as anything. It makes me realise just how important cortisol is in our daily lives!

OK, enough waffling. I’m just trying to catch up with the forum a bit, but you’re right Lynnie, it is quiet since the hurricane at the weekend. I hope everyone’s safe. Thanks for taking time to reply everyone!

[lynnie_sydney]

Ruth – you may have seen this before By Thomas Cowan MD re coming off steroid drugs, the adrenal gland and ways to help/hinder this difficult process. Thought it worth re-posting anyway for others and in case there’s something in here that may help. Here’s to your knees settling down – aren’t they just the classic Lyme-affected part of the body? Lynnie

http://fourfoldhealing.com/2007/11/08/getting-off-steroids/

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]

Lynnie, That’s an amazing article, and so true! Thank you. It really struck a chord with me, especially the last bit. My diet has been a bit lax lately, and I’ve definitely been under more stress than usual. But more importantly, I’ve just been pushing myself too hard, and whenever I do, I crash. Thank you for reminding me of this fundamental lesson. It’s just so annoying to have to think this way. I guess everyone is subject to this to some extent, just we are more prone to it than most.

The Biologics adrenal supplement is perhaps something I should look into as well! What a great article.

And yes, my knees were my first joints to swell when I was 15. Maybe they’ll also be the last to get better?

Thanks so much Lynnie, your advice is always timely and a comfort.

[Trudi]

@lynnie_sydney wrote:

Thought it worth re-posting anyway for others and in case there’s something in here that may help. Here’s to your knees settling down – aren’t they just the classic Lyme-affected part of the body? Lynnie

http://fourfoldhealing.com/2007/11/08/getting-off-steroids/

Hi Lynnie–
Thanks for this repost. Haven’t read it for awhile–it sure has some good suggestions!

And yes, my knees were my first joints to swell when I was 15. Maybe they’ll also be the last to get better?

Hi Ruth–
This is what I hear all the time. Your body is going in reverse getting rid of everything until finally it does away with what bothered it first! Since your knees were the first and now the last–it sounds like wonderful news for you–being at the tail end.

Take care,
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?

[lynnie_sydney]

Ruth – just had a look at the Breakspear site for something and saw that Dr C.Y. is a member of ILADS. Is she worth consideration? Lynnie

http://www.breakspearmedical.com/files/staff.html

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)

[lynnie_sydney]

Ruth – also came across this regarding high incidence of continued synovial swelling for some time after bb infection cleared and need for anti-inflammatory treatment which may be of interest. Lynnie

http://www.mskreport.com/articles.cfm?articleID=1302

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 Lynnie, Thanks for both of those links. I spoke to my GP the day before yesterday and he said that although he’s not pulling the plug on my treatment, I will need to go back to Breakspear and find a new doctor, so she’s a great suggestion, thank you. I’ll also contact Eurolyme for more opinions.

I am mightily relieved. Hopefully my flare will abate now. I’m sure stress is a huge factor. Now I just need to get the problems with the business sorted!

I’m mad busy with an urgent job, so will have to read the link about synovitis later on, but thank you, thank you, thank you!

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