To Rheumy or not to Rheumy…that is the question.

[Spiffy]

I saw my internist/integrative physician today, Dr. AW in Annapolis. He has ordered an MRI of my elbow without contrast dye. I am thrilled because I did not want the dye! My rheumy who I am going to see May 9th wanted contrast. He is starting me back on AP on Minocin after a three week break of doxy. I told him that my rheumy will suggest Plaquenil. He felt like there was maybe no reason to keep her. I do not know how I feel about this. He is an hour from me. She is around the corner. I pay him, and she is in my insurance plan. If I quit seeing her, it might be hard to get back in. As much as I do not want the medicines she can offer, they may be necessary. Please give me your thoughts on this.

She is not in to AP therapy by the way.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[BellaB]

Even though I have gone off my methotrexate (with improvement on Minocycline this is my 3rd month on MWF 100mg) I am staying with both my AP doc (that is 2 states away) and my Rheumy who is 10 blocks away, because my Rheumy is noticing the difference in my hands and commending me and telling me it’s ok to go off Metho (but she will still prescribe me more if I need it.) She is also the dr. that knows all of my blood history for the last 8 years, and will be able to run more blood tests and tell me if my antinuclear antibodies start to improve on Mino (same test run at the same lab for 8 years which means less variation in the test result). She is going to run my blood again when I hit the 3 month mark on Mino, I think it’s good to keep your options open, at least that’s what I’m doing.

This Rheumy also seems curious and open to the idea that something else is improving me, and if she will then consider incorporating some AP into her own treatment of her other patients (?) – – then in an inadvertent way I may be helping other patients too by staying with her (and my insurance covers her as well…)

BellaB

[richie]

Plaquenil is a failed drug for RA –while you mentioned you have been doing well previously on doxy or minocin –seems to me the decision is a no brainer —when I was seeing the doctor up at Harvard –it was a 5 1/2 hour drive —time to make a decision and a committment to doing all you can to get better !!!!!!!!!!!!!!!!!!!!
richie

[lynnie_sydney]

She is going to run my blood again when I hit the 3 month mark on Mino, I think it’s good to keep your options open, at least that’s what I’m doing.

Bella, it’s a good idea to bear in mind that blood work can sometimes worsen before it gets better (part of the herxheimer response). Whilst my clinical signs were excellent, all my blood markers went substantially UP at around the 3 month mark. For instance my RF went up from 511 to just under 700. My RF then plunged to half that at around the 6 month mark. All responses are individual, but good to know this can be the case, as most rheumies will take this as a sign that the disease is progressing

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]

spiffy – only you can make this decision. You will likely get a lot of very different responses so you need to decide what is best for you in your particular situation.

Either way, the very best you can do is to educate yourself as much as possible about the treatment and what to expect. Your rheumy will interpret your results according to the paradigm she works from, which won’t include infectious theory (see my response to Bella).

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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