A Happy Accident

[crowchez]

I had been suffering with fatigue, brain fog & the occasional carpal tunnel flare-up for a few years. I also had a swollen big toe joint & a knuckle joint but they were transitory. I thought it was all menopause related. A TSH test in Feb 2009 came back high but my doctor wanted to retest in 6 months. By the time I crawled back to him 6 months later (Sept 09), I could add wicked carpal tunnel in my left wrist, plantar fasciitis in my right foot & TMJ. After a month on levothryoxine, I added achilles tendonitis in my left heel & a weird knee pain (not tendonitis or joint related). My brain fog had cleared but not the fatigue & now I had neck pain. I supplemented with vit D3, gave up gluten & tried raising my thyroid supp. A dust-up with him over synthetic vs. natural thyroid hormone sent me to a new doctor.

Insert —>happy accident. 😀 in February 2010, my new doc got me immediately on natural thyroid (erfa from Canada). I whinged to him about my pains & instead of cutting me off after 3 problems 👿 he decided to test me for Lyme. I came back reactive to Band 41 IGG. Since he feels any reactivity in this part of the country should be treated, he put me on doxycycline 100mg BID for 30 days starting in late March 2010. 😎 I didn’t think any of this would do any good & in fact my journal reveals that things got worse. I could feel the inflammation building in my wrists. 🙁 Retested after 30 days, same result, back on doxy & within a week (early May) I could hardly use my hands. My finger joints, wrists & feet were swollen & painful. My right pinky looked like the joint had a camel’s hump. One toe was 3 times its normal size & bright red. Since my liver function tests were now out all out of range, I stopped taking daily aleve (slowly, because there was some muscle pain & anxiety with stopping it). Just showing the doctor my hands got me sent to a rheumatologist & a script for prednisone. By this time, I knew it wasn’t thyroid, gluten or vit D. All signs pointed to RA except for the soft tissue pain & swelling. All RA tests came back normal, negative or low. Rheumie diagnosed seronegative spondyloarthropathy & wanted me first on prednisone & then sulfasalazine (I didn’t take either).

I had been obsessively reading about RA & getting very depressed. The topic came up on another board I’m on with the suggestion to look into LDN. Reading the archives of the RA-LDN board, I saw a couple of mentions of an antibiotic protocol. Because it was outside the scope of the group, it wasn’t discussed at length but that was all I needed. I quickly found the Roadback Forum & started reading the archives here (I think it was at 232 pages of topics when I started reading 😆 ). I read “The New Arthritis Breakthrough”. I got the list of AP docs & made an appointment with Dr. W. I talked to both my PCP & the rheumie about AP but they were dubious (& frankly scared). But very quickly, I was no longer scared.

I had reduced my doxy dose (which my PCP was willing to have me continue with) to 200mg BID MWF. Ever so gradually through the months of June & July, the pain eased. Every day, just a teeny bit more. By mid-July, my fatigue was finally gone. That’s when it clicked – it is infectious, it was a herx! I started the lemon/olive oil drink, added MSM, tweaked my diet. I was able to start walking again, something I enjoyed & craved but had to stop because of the pain.

In August, Dr. W switched my morning abx to minocycline continiung with doxy in the evening. He diagnosed psoriatic arthrits based on my test results, sausage toe & minor bout of Ps 15 years ago. He tested me for HLA B27 & it is present. So I pay close attention to DragonSlayer’s posts & have further reduced my starch consumption. I had the Lyme testing done at Igenex & I’ll find out those results this week. My LFTs were elevated again & the only changes were the switch to mino & relatively high amounts of MSM. I cut back on the MSM & I’ll find out if that was the problem. I had my neck xrayed in Sept & didn’t hear from Dr. W about it so I’m guessing it was OK but I’ll find that out at the end of the month.

So although I was furious with my old family doctor, he did me a tremendous favor by forcing me to find a competent one. I owe a huge debt to my PCP who thinks outside the box, listens to his patients & started me on a treatment virtually no one else would have. Without that, I think I’d have been a walking time bomb. I owe debts to the person who sent me on an LDN quest (which I ordered but never started); the people who mentioned AP on the RA-LDN board (I’m sure they’re here somewhere – xoxoxo); every single person on the RoadBack Forum who has asked a question or answered it – the education I’ve received these past 6 months is astonishing & all because of ALL of you, & of course, Dr. Brown. Wow. I’m in a lot of debt! 😆

I’m not 100% yet but I will be.

Deirdre

[crowchez]

My Igenex results are negative: Band 41: IGM IND, IGG +. Everything thing else negative (but who really knows 🙄 ).
My liver values are back within range so Dr. W. is fine with continuing on my current abx dose. Hepatitis B & C tests negative.
He suggested sulfasalazine but I want to just stay on the abx unless something very bad happens. All other markers still normal. Vit D3 level is 82 & he’d prefer it at 40-60. I’m not sure what the right level is so I’ll stay at 5-10k iu/day.
He is concerned about my TSH being so low (osteoporosis) – my free T4 & free T3 are fine. I need to reread the thyroid stuff because I think it’s not that worrisome. But no one has the thyroid figured out yet & what a supressed TSH affects beside reducing the antibody attack on the thyroid.
He tracked down the missing neck xray report & it showed some vertebral fusing but no spondylosis (I think that’s what it said), so Dr. W wasn’t worried.

Still feeling pretty good. Pain for the most part increases with activity (fingers & toes). Must stop all that housework. 😆

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