Progress! and Lab Help

[kater]

Hi all,
I have been on AP just over 3 months and making some really good progress! I still have tight skin in my body but my hands are looking and working much better. You can see the collagen is less and so my circulation is better. My muscle pain and weakness is gone and I have returned to working out, though nothing too crazy. Most amazingly it feels like that awful veil of fatigue is lifting and many days I don’t even nap (used to be 2 or 3 hours). I tried to reintroduce hot spice (but not all nightshade) so I could love my food again, but sadly I think it makes my hands swell so I am off it again to see what happens. 🙁 I am still waiting on my Lyme tests from Igenex, but today I got back my bloodwork after my rheumy visit. It is good news! My ENA is still negative, even though I was “assured” that it would soon be positive. My ANA dropped from 1:640 to 1:320. Only puzzling thing, my c3 comp fell from 1.0 to .08. ( range 1.0 to 2.0). I looked on labtests online and it mentions immune function, liver and bone issues. Also my alkaline phosphatase, while still in range, went from 62 6 months ago to 103 (range 42-116). Any thoughts if my liver is being stressed or is this something to do with immune function? Generally I am thrilled with my progress to date. Maybe i can’t slay this beast but perhaps I can give it a sleeping pill, warm fuzzy blanket, and a goodnight kiss. 😆
thanks for being on this ride with me
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[lynnie_sydney]

Kate – those results look pretty good to me. And I wouldnt worry about the ALT – it is well within normal range. The complement test also doesnt seem too way off – what does your doc say about this? One thing to remember is that lab tests can also herx initially – mine all went substantially up before coming down (paricularly my RF). If I were you, I’d be doing as much as I can to detox (whatever your results) help the body flush toxins from cell die-off. The lemon/olive oil drink is great for liver cleansing, a far infrared sauna (working up from a few mins) is also great, drink as much (bottled or filtered) water as possible and perhaps consider milk thistle, good for keeping liver enzymes normal or normalising them. You might also want to type ‘detox’ into the search box on front page to look at other detox methods. Overall, sounds like you are doing great!

http://www.keephopealive.org/lemondrk.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)

[kater]

Thanks Lynnie
I was really happy that the labs reflected what I am feeling as I understand it doesn’t always go that way. Not sure about the c3 wrinkle but hopefully a blip on the radar–maybe herx or something. I had thought about Milk Thistle and maybe will try that soon. I have used that back when 😀 for pms and it was very effective. I haven’t tried the olive oil and lemon drink but I will do that too. I don’t seem to be troubled much by adding things. I am doing a lot of detox things. I am on Immunopro, RA diet which is of course gluten/dairy free (except for the Immunopro which made my naturopath wrinkle his nose), seal oil, plant sterolins and tons of supplements, oil pulling and do far infrared sauna, yoga, acupuncture weekly, waterfit, regular sauna and vibration fitness several times weekly, and myofascial release biweekly. Booking in for lympathic soon. I am doing a cleanse right now and have been doing them for years. So why did I get sick eh? I love all the great new ideas on this forum. Thanks for taking the time to write to me!
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[notabene]

Hi Kater and everyone,

Your progress after three months is heartening to hear. I have been on AP for the same length of time, and have no appreciable fatigue. the best gift of all. The collagen

[kater]

Hi Nancy
great to hear you are seeing some improvements too!! When you say herxing, are you referring to your face peeling or some other symptom? I looked at your test results and while I understand what they are, I am not sure why the ranges are different in both sets of your tests and they are very different than the ranges in my tests.(Canada) I understand what you meaning about being an ophan. I feel the same way without a doctor who knows what they are doing–if it weren’t for all my brothers and sisters in this ophanage I surely would be lost. 😆 Even if you don’t have a doctor who knows what they are doing with AP and SD, any doc should be able to decipher blood test results I should think. Even if you don’t get a full workup for a few months I would recommend you get basic bloodwork done at least every 6 months or more often as I understand that organ involvement can be quite insidious and needs to be monitored. I hadn’t had a full screening for 6 months and requested one–the rheumy thought it was a very good idea. Would have been good if it was his I think!
I am still curious if anyone has any thoughts about what might be causing my c3 complement to drop out of range .08 (range 1.0-2.0) when it was ok 6 months ago. Could this be liver stress due to mino? Just plain old immune dysfunction? Maybe a herx that will self-correct? I have queried my naturopath about liver support but haven’t heard back from him.
Thanks to all!
be well
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[hopefulmama]

Kate,

First, huge congratulations on your progress! The fact that you feel better AND your labs are improving is so encouraging! Really wonderful.

Complement C3 from my research relates to kidney function. It can predict future kidney disease, and is often used as a marker for lupus nephritis. My C3 has been low 3? out of the last 6 times, but it does seem to fluctuate. I read on another post that as long as your metabolic panel comes back normal the rheumatologists will not send you to a nephrologist or recommend ACE inhibitors. It’s just something they watch to determine disease progression.

SD is known for kidney involvement, especially early, and AP can take a little while to really kick in. So my best recommendation to you as a fellow patient would be to get some of those little urine test strips where you can check yourself to make sure you aren’t spilling protein (which would indicate progressive kidney problems) and also maybe keep track of your blood pressure. But as long as the metabolic panel looks consistently good, I don’t think it is something to worry too much about at this point.

If your kidneys do end up needing some help, thankfully ACE inhibitors seem to have resolved much of that problem and for SD folks it is probably more crucial to work on keeping up the lung health with N-AC and azithromycin. If you enter those terms into the search box on this forum you will find a lot of discussion on the benefit of N-AC and zith for pulmonary fibrosis (and to prevent it).

Take care and I hope any of this has helped you!

Warmly,
A

[kater]

Dear Andrea
thanks for taking time out of your busy life to write to me. I truly appreciate it. I enjoy your posts and all your great research!
I connected with the liver function with the c3 comp, but somehow missed the kidney connection so thanks for that. I will watch for the protein in the urine. My metabolic panel is good. My ggt and creatinine are both out of range on the low end but the doc is reassuring me that this is good news, not bad. I hope he is right, but I have trust issues. 🙁 He hasn’t contacted me about the c3 so far so I am hoping it is just a little speed bump. Bottom line, I am feeling quite a bit better lately. I was very weak and tired and so much muscle pain before. I have returned to working out and feeling in better shape than I have in a long time. A few months ago I had pain on walking up from my downstairs. Yesterday I did four flights in the parkade and didn’t feel it until 3 and a half! I am on leave from work and so have time for things. Going back to work will be another matter entirely
gratitude
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[michaelbarring]

Hey there..!!
Thank you for sharing this with us..!!

[Author]

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