lynnie_sydney:from PRA dx/mino to combo abx

[lynnie_sydney]

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html
Above is a link to my testimonial which details the course of my Palindromic RA and my great success with AP over 5 years. Below is the continuation of my story.
Whilst I have had really good symptomatic results from 5 years of mino, my RF – which fell from a high of 692 to around 300/mid 300 on AP – it is still too high for my liking. And, whilst I never get unbearably painful attacks anymore, I can feel the condition still lurking in my joints/tissues. My Mother’s condition exploded in her mid 60’s. So I decided 2008 is the year I look further than my GP to simply prescribe mino to see what else I can learn and do for myself. I chose a highly experienced AP doc in a regional area of another State, who keeps a relatively low profile here in Oz but who has had great success working in tandem with the naturopath who first introduced her to Dr Brown’s protocol well over 20 years ago. This Doc is a member of an international community of like minded docs in this area and is in regular contact with people like Garth Nicholson.
I have journalled everything down that I remember about the appointments. Some of the principles I still don’t fully understand. However, having had her describe me in a nutshell within 10 minutes of meeting her and having a very strong gut feeling that she knew what she was talking about, I decided to accept what I was told during this visit and find out more about the mechanics further down the track. I already had felt benefits from the dietary changes I had made after the initial phone consultation, so I decided to go with the flow and not question every single thing I was told (which was a great deal).
Day 1 – 1 hour appointment with the doc
She got from me a whole history of my disease from when symptoms first started, what they were like etc, whom I saw and what I took. I wont repeat that here, it’s all in my testimonial. She told me that I most definitely would have leaky gut after 20 years of this condition and gave me a diagrammatic explanation of what happens to the body with leaky gut. She then said the result of long-term leaky gut is:
You get anxious quite often. You don’t sleep well, you sometimes wake with anxiety during the night and you never or rarely feel like you have had enough sleep. On the other hand, if I waved a wand and gave you 20 hours of sleep, you’d still wake up tired to some degree. Physiologically, your body is permanently in fight or flight mode, which puts a good deal of strain on your adrenals and your overall physical, psychological and emotional state. It means that you don’t respond well to accumulated stress. With too much stress, you find it hard to make decisions, become overwhelmed, become extremely irritable or just shut down. Wow, this is me to a tee!!!!).She said that she could tell from dark circles under my eyes that dairy is likely a problem for me and that it would be putting strain on my kidneys.
From my history and described symptoms, she doubted my Palindromic RA diagnosis and was sure there were more connective tissue issues. She wanted the naturopath to do tests before she said more. She thought recurring tonsillitis as a child, pneumonia at 13 both likely candidates for the original pathogens and a severe urinary tract infection in late 1980’s as possibly the trigger for the symtoms.

She wasn’t surprised with my good results from sulfasalazine because of its antibiotic properties but said that the amino salicylic acid portion of it may have done me more harm than good and she was pleased I had taken myself off it.

She wasn’t pleased that I had upped my dose of mino in May 2007 from 100mg MWF to 200mg MWF and believed that dose may be harmful to my system longterm. (Not sure exactly why). She would wait until after I had seen the naturopath the following day and been tested for my body’s responses before recommending a way forward. She urged me to take with me everything I put on or into my body so that it could be tested for my body’s response to it.

The naturopath
She tested me for everything I take supplement-wise and for a host of other things including food and chemicals and she also tested my organs, bones and connective tissue. This was via a machine which I think is called VEGA. I have copied a little from a website that explains VEGA testing below:
The VEGA test is an electronic acupuncture instrument, which measures the body’s electro-magnetic response to various testing substances. Through its use we can trace the reason for illness in energetic imbalances of the whole body.
This is particularly so in many cases of feeling not right but not having obvious symptoms, of vague symptoms that do not correspond with a clear medical diagnosis, of treatment-resistant conditions and complicated, long-standing or changing conditions of allergy, environmental poisoning and hidden infection.
The results of this testing were numerous and specific to me. I showed sensitivity to gluten, wheat, rye, dairy, sulphur, fermented products, sugar and salicylates (note: I have posted on the Board before a link to good info about salicylates). I am okay with red meat (which is recommended for me at least 3 times a week), corn and occasional goat’s cheese (but not goat’s milk). This was generally no big surprise for me, because I have noticed the difference with changes I’ve already made to my diet: I have lost about 10pounds in weight, my stomach no longer bloats or gets gassy, the background achey pain in my knees has gone and the area between my ankle and calf is no longer painful to touch.

The supplements I take all showed up as beneficial for me, at this time. They are: Vitamin C (500mg), Caltrate, Fish Oil, Mega B, combination vitamin A,C,E, probiotic (Aussie brand Herron), L-Glutamine (immune and gut support) -though she advised reducing my dose to

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]

First 4 weeks on new AP regime and dietary changes

Week 1 onwards
Biaxig (roxithromycin 150mg MWF
Mino 100mg bid

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]

2nd month
Bloodwork
RF

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]

June/July update – some symptoms that are concerning me

Late June
I have had a few strange symptoms.

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]

Visit to AP Doc and Naturopath 25th July 08

This was a flying day trip to see them while they were both working out of the same office. Much testing on the VEGA machine, to check my physiology and my body

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]

September Update
Went for some acupuncture 3 weeks ago – a well known and respected practitioner who also practises kinesiology. I went for a pre-vacation immune boosting session primarily but he also told me I have a parasite in the gut (muscle testing and state of my tongue apparently gave that info!) So, he prescribed a parasite buster (which I decided to take). And boy, did my gut respond big time for about 5 days. Diarrhoea

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]

I left feeling well physically, as reported before and having added 50mg mino to my twice weekly regime for extra insurance.

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]

Christmas and New Year celebrations over. I did try to stick to my diet as far as possible, except for wine. Interestingly, on the two occasions when I consumed gluten, I noticed the physical response within an hour. My stomach bloated so that I felt like sticking a pin in it – like the feeling you get when you’ve really overeaten (but I hadnt). And I think I may have consumed too much sugar, yeast and/or sulphites from the wine. Had an annoying background pain develop right on the tip of my right knee. That usually will develop into

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]

Have been going through a flare – or more likely a herx – for over two weeks now. Symptoms have moved around and ranged from the front side of both wrists, left and then right knee, single wrist, aching tendons, lower back spasm

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]

The last symptom of this seemingly endless episode was heavy pain and stiffness across the back of the shoulders and down either side of my spine like someone had poured two blocks of concrete in there. Couldn’t even lie down on Sunday night and, for the next two days, was only able to turn my head if I turned my whole body. Then, awoke on Wednesday morning and realised that it was over, even before moving, after 19 unrelenting days. My osteo/body work guy later on Wednesday confirmed nothing mechanical all tissues affected were part of the inflammatory progression.

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]

It’s always so hard to describe this kind of episode

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]

Sat 21st March 09 – I had a phone consult with my AP doc 10 days ago, who believes my 19 day saga was the result of the bugs being chased out of my tooth and into my joints etc. She suggested that, if I get problems again, to take a 3-day course of the biaxsig (roxithromycin) and ceclor (cefaclor) instead of the amoxicillin. I had one more 'episode' last weekend. Woke at 1.30a.m. with an excruciatingly painful and swollen left elbow. Spent the rest of the night wrapping it in ice packs. The pain eventually spread all the way up to my shoulder and down to my fingers. At around 2pm, it just went away. I've had no more episodes since then.   

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]

Copies of my latest bloodwork arrived Tues 28 April.

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]

Very long overdue update!

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]

My Health Philosophy – thought this worth recording so I can remind myself when I need to:

When I first came to AP, I kind of thought it was a rather straight road – slow maybe, but straight nevertheless.

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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