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Ok so I saw my rheumatologist for the first time yesturday. here are the results. I do not have an autoimmune disease now, and its either all in my head, or Im tall and skinny and this is causing me to have travelling joint pain that comes and goes in cycles. BUT! she also said that “the use of minocycline is a controversial treatment but if it makes you feel better then I do not see why you cannot take it.” so she is gunna tell my doctor that their is no issue with me taking it three days a week. all i have to say to this is…. WTF? ugh now because my father joined me during the appointment and the rheumy said she saw nothing wrong with my joints my family has regressed to the state of telling me im crazy and that its all in my head.
Well kid,We all could have told you that was coming as most of us have been in the same place.You are living in a high Lyme area. Have you been tested for that?If you ever have that these folks sure would have egg on their faces.
Gord, I am sorry you did’nt find out what you wanted too, but that should be good news to you finding you did not have a autoimmune disease, as would for a lot of people. The rheumy could have someting, I once knew a young woman who was 23 years old, 6foot 5 inches tall and 125 pounds in weight who had joint and muscle pain and she put on 25 pounds and started running & excercising and her pains went away. So I would gain some weight and weight train, 🙄 LOL if that don’t work, you can see a Shrink for all that stuff in your head . Meanwhile you can add two more possibles to you signature 😆 and maybe you can add one for, Lynne
ALL In Fun The best to all …Joe RA…Gord, I echo what Lynne said.
We have all heard varying stories, just like yours. Rheumatologists are trained to treat specific diseases, with specific blood-markers for that diagnosis. Those of us with infection-based illness know that the diagnosis really isn’t important. If the treatment is working for you, then clearly there is a bacterial component causing symptoms.
Gord, the fact that you’re experiencing migrating pain that comes and goes, is a symptom often associated with lyme. I’m just a fellow patient, but the fact that the pain is on the move sounds very much like what I experienced. I remember going to the orthopedic doctor for pain and stiffness in my knee, and that day my knee was fine, but the pain had moved to my ankle. I had to see a different doctor who specializes in “ankles”; they took x-rays, and of coarse all was normal. My MIL, who has scleroderma has migrating pain, and I all I can think of is lyme, lyme lyme. She has yet to be tested.
It is my experience that most rheumatologists want to put you in a box, and give you a cookie-cutter diagnosis, and then offer immune suppressing drugs. Just because this rheumatologist finds that you do not have an autoimmune disease, does not mean another would not come to a different conclusion. My MIL has been to four rheumatologists and she received differing diagnoses from scleroderma to lupus. When Maz first heard my MIL’s test results, her comment was that she had a mixed-bag of autoimmune stuff going on. So, my point is, who cares what the diagnosis – you already have the treatment, and benefited from it! The only additional thought would be to get tested to be sure the infectious component is not caused by lyme and co-infections, because they require different antibiotics and often anti-malarials. One of the most widely-used drugs for autoimmune disease is plaquenil, and it’s an anti-malarial. Is that a coincidence or what 😛 ???
For $200 you can get IGenex tested for lyme, unless you can get insurance to pay. The tests are #188 and #189 (http://www.igenex.com).
nancy
Nancy: said,
It is my experience that most rheumatologists want to put you in a box, and give you a cookie-cutter diagnosis, and then offer immune suppressing drugs.
Nancy, As I can agree with the above statement The rheumy did not offer Gord, immune suppressing drugs but did say she saw no issue in Gord Taking the minocyclne 3 days a week and she will tell that to gord’s doctor. This is a rare Rheumatologist but one that I would trust, because she did not put Gord In her box of long term patients as most would do, sorry to say but so so true. Lymes, and please this is only my thought, I believe there would be millions more in just the 8 states in and around CT. with a population of a guesstimated 55 million people living in the area ❓ 🙄 .
The best to all, …Joe RA…Hi Gord,
Not much to add to the great replies above, but thought you might enjoy watching Dr. F’s YouTube video. He explains both seropositivity and seronegativity – he speaks about RF not being present in some rheumatoid arthritis patients about 2 mins into the video:
http://www.youtube.com/watch?v=wI3La0F5wKY&NR=1
As Nancy wisely said above…physicians should treat patient symptoms (and infectious causes), not labs. Labs are useful in many instances, but if a patient is suffering, then getting to root causes (infections) and treating those is the goal….just as Dr. F mentions in his video. 🙂 As he is a rheumy, perhaps your nice lady rheumy would be interested in Dr. F’s video, too?
Gord,
The traveling and cyclical pains are just such classic Lyme – I would heartily second the idea of getting the Igenex test!!! For $200 you would have another piece of information – one which might very well give you the answer to your questions.
Regarding Joe’s thoughts on prevalence, I would respectfully point to the CDC’s surveillance data, which show steadily increasing numbers of new reported cases per year…in 2009 (last year data shown for) there were almost 40,000 new cases; from the beginning of the chart in 1995, it averages about 20,000 new cases per year. So up to 2009, there were 300,000 reported cases. However, the actual rate of infection is generally thought to be about 10 times higher than the surveillance data, for several reasons:
– Standard testing (which most people get) has a very poor rate of detection
– Lyme suppresses the very antibodies that the great majority of testing is based on
– The CDC criteria are incredibly restrictive because it was intended for surveillance, rather than diagnosis. As a result, it excludes a majority of patients even with confirmed Lyme antibodiesIf this is true, then it millions of people could indeed have Lyme! Here in Washington almost everyone I know has family members or friends with it. It is truly an epidemic in this area.
In my own case, I had a doctor literally yell at me in front of me and my husband that I should just accept that I had fibromyalgia. Others told me I was just anxious – i.e., it was all in my head. What, the severe and migrating pains, along with early scleroderma symptoms, weren’t suspicious to them?
Gord – oh boy do many of us relate to your story. In my own case, my blood markers were all normal for the first couple of years. That, coupled with the migrating pain and the coming and going of it (every 4 weeks or so), meant that, pretty well every time I sat in a rheumie’s office, there was absolutely nothing physically going on for me at the time. Very frustrating and very hard to convince anyone that something was indeed very wrong (except with my mind 🙄 ).
I’d give up hoping that a rheumie will completely come on board. With rare exceptions (such as Dr F) that is not going to happen. Whether or not you fall into the “autoimmune” basket is, frankly irrelevant. Rheumies in the main come from the position that autoimmune diseases are idiopathic and that there is nothing that will treat cause, so an autoimmune dx is not necessarily that great to have. At least your rheumie has given you the go ahead to keep on taking the mino, which YOU know is working. And that’s a good result. You will need to continue to be your own health care CEO and there will be frustrating and confusing times like these that happen. Lynnie
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)Gord,
I had a similar experience last July when my husband and I left our kids with their grandparents and drove over 500 miles north to see an esophageal specialist, after the modified barium swallow I did at our local hospital showed no peristalsis in lower 2/3 of my esophagus and the radiologist suggested scleroderma.
The esophageal specialist ran another barium swallow and did a transnasal esophagoscopy and pronounced that I had GERD, should take a PPI for the next two months, and then stay far away from doctors. He said he saw motility.
My husband was there for all of this and was FURIOUS with me for “scaring him unnecessarily”. He suggested that I had mental issues for believing the radiologist in the first place, and wondered why we had taken the time and expense to visit a specialist. It was a really tough time for me – I hadn’t eaten solid food in a month and my first actual meal was in the home of one of our amazing Road Back board volunteers who lived in the area.
I didn’t know what to believe – whether to distrust my own body, whether to think I was crazy. It was a really tough time.
A month later I went to the GI motility lab at Cedars-Sinai where a world famous motility expert ran a manometry test on me. This time my husband was not present. The result? Exactly the same as originally stated from the barium swallow study. No motility in lower 2/3 esophagus as seen in thyroid disease, collagen vascular disorders, diabetes and rare untreated cases of GERD.
Boy did I wish my husband could have been there with me for THAT appointment. I was officially diagnosed with Esophageal Motility Dysfunction and my GI in Sacramento, when he got the results, changed his diagnosis and decided that I needed to be on a PPI for life. Which, by the way, my GI here in town totally disagrees with.
What I learned from all of this is (a) trust your body first and foremost, and don’t expect a doctor to have all the answers; and (b) you may need to be proactive in finding your diagnosis and your care because unless you are in an extreme condition, many doctors will tell you nothing is wrong until suddenly something IS really wrong. I had a pulmonologist at the time say to me, “Your lungs are fine right now, but come back in a year… these things can take a while to develop.”
My reaction: Really? You want me to sit around and wait for A YEAR to see if I get worse? Not likely.
I did get the IgeneX testing. I did test positive for lyme and babesia. I’ve tested positive for mycoplasma three separate times, with high levels. I do have a LLMD and I do see Dr. F in Riverside who is the best doctor I have met in my entire life. I get to see him this week, I am so glad.
Thanks to my research and all of the support I have received here at Road Back I no longer live in fear of the other shoe dropping. I know if it drops, where to come and what to do. This doxycyline has already changed my life and my body for the better. I don’t need a doctor to tell me that – I can feel it.
My husband used to think I was crazy but now that I’m getting well he is starting to become a believer too.
Take care.
AHello Gord, I just want to add only you can feel whats going on in your body. Not to scare you, but early on in my disease my joint pain/swelling was migratory. I would wake up with a new swollen joint, then a day or weeks later it would resolve. (Each of us is unique) Years before my diagnosis. My GP for three years thought this was mostly in my head. Only after physical manifestations has she changed her mind. I believe doctors are like the rest of us to a degree, enjoying ignorance as bliss. It is very positive that you are getting the mino early on, (and reading and learning) I ignored many early signs. This may help you avoid some of the course of the process. The doctor that gave me my first year of mino told me he was on it for seven years. Hope this helps. BTW I ‘ve had five Rheumatologists, The most valuable tool I have found in this process is the knowledge/comfort gained from this site. jims 😀
@gordbentley wrote:
Ok so I saw my rheumatologist for the first time yesturday. here are the results. I do not have an autoimmune disease now, and its either all in my head, or Im tall and skinny and this is causing me to have travelling joint pain that comes and goes in cycles. BUT! she also said that “the use of minocycline is a controversial treatment but if it makes you feel better then I do not see why you cannot take it.” so she is gunna tell my doctor that their is no issue with me taking it three days a week. all i have to say to this is…. WTF? ugh now because my father joined me during the appointment and the rheumy said she saw nothing wrong with my joints my family has regressed to the state of telling me im crazy and that its all in my head.
Hi Gord,
Well what can I say, did you really expect this rheumie to admit that AP could be working ?? don’t think so, seems to me she has now pulled another white rabbit out of the hat by suggesting your tall slim stature & inferring that migratory growing pains is your problem .. puleeze, surely she could have thought of something a bit more plausible than that !!!
You have a head on your shoulders, you have search & researched for yourself as much as you can about your current health issues, you know it’s not in your head & you are not imagining this debilitating pain.
Your rheumie has however given you the green light to continue with AP which is fantastic news, good for her.
However, palindromic arthritis is exactly that, migratory pain that comes & goes, then the biggy in that it leaves no sign that the episode/flare even happened & even more important is that there is absolutely no residual damage! Then take into account what Lynnie has said previously about Lyme & add that to the mix.
As Lynnie said you need to continue with your own health care & continue on AP, simply because it is working; if and when it stops working you can revisit your decision.
My advice is to just keep doing what you know is working, keep learning all you can, keep your spirits up & remember where you were just a short time ago & how far you have come since going down the AP path!
Cheers,
Maz – AustDec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
hey folks! thanks for the support. sorry i havnt been on its been a long week. i think it turns out that the muscle pain ive been experiencing is from sitting in classes all day. the joint pain has been gone for a while now but my muscles and tendons must of been getting stiff from sitting all day. running three times a week wasnt enough to make em bounce back. now im working full time and walking all day they have cleared up pretty nice. so this muscle pain had nothing to do with missing doses and no regression of treatment. it was all from sitting mostly cuz once i got back to work it was gone by the first afternoon of working and it really hasnt come back, not even for a minute! just got my HLA B27 and CRP and anti-CCP? i think thats what the last one was, apparently ive never had these tests done so that might give me some answers. if they come back neg dr B says i can get the Igenex test done but he doubts I have lyme, said he did a wack load of reading and even from what I see i do not have many of the symptoms. the mino has been working pretty well on my joints so i get to stay on it so long as my liver and kidney tests remain swell (which they have). just got a nasty sunburn so i think i gotta start wearing sun screen. i never burn which is odd but oh well its a small price to pay. lol the only thing that hurts is the skin on my shoulders 😛 hope you are all having a good summer! ill pop in from time to time 😀
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