September 13, 2022 at 8:32 pm #467016eliParticipant
I tried using the website but have been unable to get to the doctor lists. May I have a list of AP Docs in Washington State?
I’m a fit 43 year old male. Back in May of this year my right ankle swelled up to the point I thought it was broken. There was no trauma that caused the inflammation but it is an ankle that had been severely sprained several times in the past. The blood work ran by my GP only showed slightly elevated CRP and Sed Rate. ANA and RA factor were negative and everything else was normal. Fast forward to August and in addition to my inflamed right ankle my left knee started to swell, then my left ankle and now my right knee. There has been no real ebb or flow. The joints just flare up and have stayed that way. I’m no longer able to walk very well. My GP is totally stumped as there’s been no change in my blood work and my symptoms don’t check the boxes of normal labels we put on these things. I’ve been referred to a rheumatologist but there are no appointments available until June of next year for docs in the area covered by my insurance. I am able and willing to pay cash but I’m not sure where to start in finding a good doctor. My main concern is finding someone who thinks outside-the-box and considers drivers of joint inflammation beyond the CDC approved flow-chart. If there is a doctor in my area (Olympia, WA) that could help me get this diagnosed I would prefer to stay local. However, I can travel, even internationally, if I need to.
To relieve inflammation I’ve done two 10-day rounds of Naproxen. It helps a bit but I don’t want to tear up my gut so I’m no longer using it. I’ve also tried several natural anti-inflammatories from a Naturopath I’ve started seeing but the fish oil, tumeric, CBD, etc. have yet to make a difference for me.
Any suggestions and the doctor list will be greatly appreciated.September 13, 2022 at 8:37 pm #467018MazKeymaster
First posts are moderated to filter out the potential for spam, so you should now be now able to post here whenever you want. I’ve just seen your PM and will fwd you the requested lists as requested.
Very sorry to hear about your pain – sounds very similar to how I started out. Did your GP run an HLA B27 test by any chance?September 14, 2022 at 1:29 pm #467019eliParticipant
Thank you for the doctor list. I’ve decided to travel to California to the expert Rheumy you mentioned. However, it looks like I won’t be able to get in until January of next year.
My GP has not run an HLA B27 test. Is that something I should request? Are there other tests that I should request while waiting to see a specialist?
My naturopath has also done some blood work. My Iron level is slightly low which is strange since I have have adopted a high-fat ketogenic diet (lots of nose-to-tail ruminant animal foods) for the past 3 1/2 months. The dietary change didn’t stop the original inflammation in my right ankle, but the additional joints didn’t begin to flare up until I started to re-incorporate some carbs into my diet about six weeks ago. At the time I had become convinced that I was just dealing with an injury (not something systemic) since beyond my ankle I had no other inflammation – unfortunately I was wrong. I’ve since quit the carbs again but have noticed no improvement in my joints though overall seasonal allergies are drastically improved while carb free.
The bloodwork from my naturopath also revealed some lead in my blood: 2 ug/dL. I tested negative for Lyme and Babesia but from the reading I’ve done the Lab Corp tests I took don’t actually rule out Lyme.
How important is a definitive diagnosis before starting an antibiotic protocol? Should I just patiently wait to see the expert Rheumy, or should I seek out someone to prescribe antibiotics while I wait? I’m curious what others who have walked through this would choose to do. I have a wife, five kids and farm so crippling joint pain has been inconvenient…September 15, 2022 at 3:40 pm #467020MazKeymaster
Sorry for my delayed reply. Were you able to be put on a canceled appt standby list with Dr. F? If folk can travel at short notice, sometimes they can get in sooner and it’s not remiss to inquire in situations where patients are in a lot of pain. Although receiving a firm diagnosis is useful in terms of treatment approach, it shouldn’t stop a rheumatic patient from seeking treatment as soon as possible, although sometimes infection testing can be abrogated by antibiotic therapy and it can be helpful to know what infections one is dealing with so that treatment can be more targeted, if necessary. LLMDs use an array of anti- microbials and Dr. Brown (the rheumy for whom this site is dedicated) also tested and treated infections accordingly (e.g., strep would be treated with a bactericidal whereas a cell-wall deficient microbe, like mycoplasma, would be treated with a bacteriostatic).
In meantime, if you think you should pursue the tickborne infections route, I can send you the LLMD list for your state. They can also be busy (particularly in fall) as new patients require much longer time slots for initial workups. The experienced docs tend to do extensive infection testing and will do what they can to rule out other potentials first. The rheumy in CA may not use specialty labs for Lyme testing or test for tickborne coinfections). On the west coast, Babesia Duncani tends to be more prevalent than Babesia microti, so distinguishing one from the other may need specialized testing. Ticks pass a multitude of nasty bugs, like bartonella and it’s numerous strains are are receiving intense study due to the chronic inflammatory cascade it can initiate.
The HLA B27 haplotype test can help in diagnosis if someone is positive, but has joint pain and otherwise seronegative. It points to reactive arthritides in those who are symptomatic. Others here have found the blood test helpful, especially in early cases where not all symptoms are initially apparent or they’ve been given a nebulous “inflammatory arthritis of some type” diagnosis.
Anemia can have many causes – do you know which type? According to Dr. Brown in the Henry Scammell book, the anemia of chronic disease tends to reverse once the patient begins to respond to therapy. You might find the book helps yo keep you going – I read it 5 or 6 times in my first year. Not sure if you keep farm animals but brucellosis arthritis is discussed in the book, for example.
People with ReA tend to find starch and nightshade veg elimination helpful. Have you tried this? The http://www.kickas.org site has info, if interested.
The forum has been quiet of late, but hoping others will chime in with additional helpful info for you from their personal experience.
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