now what?

[246bride]

Hi all,

I am experiencing some success with AP. In a much better place than I have been, although not completely pain free. I am functioning and back to exercising – running was a passion of mine and now I have been able to run up to 3-4 miles 3-4 times a week. I am so pleased with my progress! I have been on the AP since April ’13 after weaning my baby from breastfeeding. I wasn’t very aggressive with it came to the regime. at my highest dose, I was taking 100mg on MWF and the other days of the week was taking 50mg. I am now just taking 100mg on MWF. I have 2 questions.

1) I am doing well, but there is still room for improvement, especially in my wrists. Do I push for that improvement? If so, what would be your suggestions? I started tapering down as I was having some side effects – skin was getting hyperpigmentation. Dr said it was likely the combo of plaquenil and the mino.

2) although I am feeling much better in my joints, I still have terrible fatigue. Terrible. I get plenty of sleep at night. What can I do for that? Would ramping up the AP help with the fatigue in the long run or from your experience is there something else I could be doing?

I plan on taking some time to write a testimony or my story if you will. I do want to encourage those that are starting out or considering AP, I have had great success!! Oh yes, and I have integrated A LOT of coconut oil into my diet. I think it has been a big factor in my well being – keeping yeast away and also acting as an anti inflammatory.

Thanks all for taking the time to read this. I look forward to you advice!

[PhilC]

Hi,
@246bride wrote:

I started tapering down as I was having some side effects – skin was getting hyperpigmentation. Dr said it was likely the combo of plaquenil and the mino.

Do you take vitamin C? If so, how much?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[246bride]

Not regularly no

[lynnie_sydney]

1) I am doing well, but there is still room for improvement, especially in my wrists. Do I push for that improvement? If so, what would be your suggestions? I started tapering down as I was having some side effects – skin was getting hyperpigmentation. Dr said it was likely the combo of plaquenil and the mino.

2) although I am feeling much better in my joints, I still have terrible fatigue. Terrible. I get plenty of sleep at night. What can I do for that? Would ramping up the AP help with the fatigue in the long run or from your experience is there something else I could be doing?

1. Vitamin C is supposedly very good for hyper-pigmentation. There is some previous discussion on this – if you use the search function on first page of General Discussion and type in hyper-pigmentation, it will come up for you to look through.

2. Fatigue is part of the disease aetiology. The 3 things that made a very noticeable difference to my energy levels have been:
1. N-AC (N-acetyl cysteine) 250mg BID
2. CoQ10 (helps with energy on a cellular level). If you take with alpha lipoid acid, body absorbs it better
3. 3. Vit B12 sublingual drops- in addition to very good B Complex as a base

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)

[Anonymous]

Lynnie,

What does NaC do for you??

Thanks,

Roberta

[lynnie_sydney]

I take N-AC for 2 reasons – 1. to boost the production of glutathione in the liver and 2. to help keep the lungs clear. CPn has been picked up as one of my chronic pathogens (I had very bad pneumonia as a 13 year old and suspect that it was CPn)
N-AC is part of the CPn protocols (see http://www.cpnhelp.org). It is an amino acid and is used (IV) in hospitals for paracetamol overdose (liver) and for pulmonary fibrosis (lungs).

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)

[246bride]

Thanks Lynnie. What brands do you buy of the N-CA and CoQ10? Thanks!

[lynnie_sydney]

What brands do you buy of the N-CA and CoQ10?

As I live in Australia, this may not be much help to you. CoQ10 I buy Microgenics – simply because it has alpha lipoid acid i the formulation (that helps body to absorb CoQ10). NAC I have bought different brands of 600mg caps depending on availability/cost (you can’t buy OTC here) – don’t believe there’s much difference in that one.

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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