Misdiagnosed with Rheumatoid Arthritis (RA): My Lyme Disease Story

As some of you may have heard, I just recently found that I was misdiagnosed with rheumatoid arthritis (RA). I have Lyme Disease.

Anyone who has followed this blog probably knows that I thought that I had Rheumatoid Arthritis (RA) for over 9 years. I have always had some doubt about what was going on with my body and the effectiveness of the treatments the doctors were prescribing. But I trusted my doctors more than I trusted my instincts. My story is a cautionary tale for anyone who has been diagnosed with an autoimmune disease.

Let me start by saying that we live in rural Rhode Island. We have a small 3/4 acre wooded lot. All sorts of wild life can be found in our yard at any given time and there is no shortage of deer that visit our property. We moved out here to raise our family in a quiet, serene place with good schools and friendly neighbors. Unfortunately, with the good comes the bad, and the deer carry ticks that carry Lyme Disease.

Each member of my family at one time or another has had Lyme Disease. It is not uncommon to be outside for only a few moments and pick up one of the poppy seed-sized ticks. For the most part we have all either tested positive with Lyme Disease or the tick if we were able to keep it tested positive with the disease.

9 years ago I had been bitten by a tick. At the time, I was tending to my newborn son, and had two older boys to watch over as well. In prior exposures to the disease, I had felt “flu like symptoms” and that was my cue to get tested. I don’t know if it was adjusting to three boys and 2 jobs or if I was just too busy to notice, but I really don’t remember any “flu like symptoms”.

It started with my ankle. It hurt and was swollen so I went to the urgent care center where they X-rayed it and told me they could find nothing wrong with me. The doctor prescribed an anti-inflammatory and gave me and air-cast. We were going with the assumption that I must have sprained my ankle even though I couldn’t remember doing anything out of the ordinary.

The swelling did eventually go down on my ankle but shortly after my knee on the opposite side started swelling. Ice, rest, and ibuprofen seemed to help with the swelling in my knee. Then, my wrist on my left hand began to swell. My husband and I were discussing the weird joint issues I had had over the previous few months when he suggested that I go get a Lyme test. I thought that it couldn’t hurt, so off I went back to urgent care for a Lyme test. The Lyme test came back positive and the doctor gave me zythromax.

Unfortunately I did not get better after taking the antibiotics, so I went back to the same doctor who gave me another course of the same antibiotic. When after finishing the second course of medication and I was not improving, the doctor said to me that this was beyond his level of expertise and I needed to see either an infectious disease specialist or a rheumatologist. He felt that I should start with a rheumatologist because if it was Lyme or something joint related a rheumatologist would be the best choice. He gave me the name of a rheumatologist and sent me on my way.

The rheumatologist seemed nice; he listened to my story and took a medical history. It may be my perception of what happened next, but it seemed to me that the minute he heard that my mother had rheumatoid arthritis (RA) his mind was made up. He told me that more than likely it was RA. He examined me and put me on prednisone immediately. When I asked about the Lyme he said that it was very unlikely that I had Lyme and that he was fairly certain it was RA. He told me the steroids should get the inflammation under control and ordered some blood work.

The blood work came back and showed that I was positive for RA. What I did not know then that I know now is that an active infection like Lyme Disease can affect the test results for RA.  He gave me a prescription for methotrexate, talked to me about Enbrel, and sent me home with a handful of pamphlets.

To be completely honest, I never felt comfortable with the diagnosis, but I somehow talked myself out of trusting my instincts by comparing his knowledge on the subject with mine. His practice was a teaching practice with Brown Medical School and I felt like he should know more than me on the subject. I really trusted that he knew what he was talking about. I have beat myself up for not going with my gut many times over the years on this topic.

Over the next several years I just seemed to get worse. Every time I brought up the fact that I was not really improving he would tell  me that the first several years with the disease are the worse, when the most damage occurs and that we needed to increase the medication. For a while he really had me scared. He would say things like “We don’t want to see you in a wheelchair, do we?”. After way too long I decided to find a new rheumatologist.

I took my time looking for a new doctor. One I went to yelled at me when I told him why I was looking for a new rheumy. Turns out he was friends with the one I left. I finally decided on a rheumatologist who I was told was well versed in Lyme disease.  She had plenty of posters on the walls of the office with picture of both damaged joints and Lyme disease bulls-eyes. I discussed my story with her and she felt I had rheumatoid arthritis as well. She decided to add Plaquenil to the cocktail and that did seem to improve how I felt. The disease seemed to ebb and flow with the increased mtx and plaquenil combination. There was never a time when I didn’t feel sick.

Over the years I have had some symptoms that no doctor has been able to  explain. I have had extreme sensitivity to light and sound. It’s like having a migraine without the headache. I have ear pressure so it feels like I am in an airplane all the time. I have also had other more traditional RA symptoms (i.e.  joint swelling, pain, fatigue)

Last summer everything came to head when Kevin had a bout of the swine flu and I had to go off the methotrexate. I had to take antiviral medication for 3 weeks, and immediately following that I got bronchitis and was on antibiotics for two weeks, followed by 3 more weeks of antiviral medication because Nathan got H1N1, and finally 6 weeks of antibiotics because I got bit by another tick. I tested positive for an active Lyme infection and stayed off the mtx for another 6 weeks. After 14 weeks off methotrexate I felt surprisingly good.

The doctor told me to start back on the methotrexate, and being the dutiful patient I did what I was told. After 2 doses of the methotrexate I felt like I was back in Lyme hell. I went to the doctor and I told her I was not going to take any more mtx. She order more tests, including a new Lyme test. A few days later my primary care doctor’s office called to tell me that I tested positive for Lyme and I needed to start antibiotics. I was surprised that I had not heard from the doctor that ordered the test, so I called my rheumatologist office to find out what was going on.

She told me I did not have Lyme disease. She said that it was a cross reactive protein and ordered more tests. I again brought up the long ago Lyme test that started this RA nightmare and the look on her face scared me.  She looked frightened. She claimed that there was nothing from the previous doctor that mentioned Lyme disease. ( I know now that this was untrue because when I requested copies of my medical records from her office the previous rheumatologist did sent his notes on the Lyme and that he felt it was a false positive.) Over the next several weeks as I felt worse she ordered more and more tests, she managed to rule out quite a few different ailments and still could not explain the Lyme results. Finally, I got tired of being poked and went to see my primary care physician and asked her to put me on antibiotics. She agreed that there was no harm in trying antibiotics and if I felt better than it must be Lyme.

After 2 weeks on the antibiotics I started to feel normal again. After 3 weeks I felt better than I had in years.  The inflammation was almost gone. I walked with a spring in my step. I felt really really good. One day I was going about my daily routine and I stopped myself in mid-stride because it was as if I had been in the situation before. It was the most beautiful deja vu that I have ever experienced. As it occurred to me what I was reliving I began to cry. I felt the way that I did BEFORE. Before the rheumatoid arthritis diagnosis. It was as if time had melted away and that I was the old me, the healthy me. That moment will stay with me forever.

In that moment everything changed for me. I decided that I was going to investigate Lyme disease. I wanted to find out if this had happened to anyone else. What I found was that everyday people are diagnosed with chronic autoimmune diseases that really have Lyme disease because of the ignorance of some of the medical community about what Lyme Disease is and what it can do.

I took my time and thoroughly investigated several doctors. I knew after doing my research that I needed to find a Lyme Literate MD (LLMD). I got references and asked questions about each one. I decided that I wanted the opinion of someone who was respected in dealing with Lyme not only by his colleagues, but also by his patients. After quite a lot of research I found the doctor I felt comfortable with. It took me 2 1/2 hours to get to his office but I didn’t  mind the drive if it meant that I would get some answers. I figured if he told me that I did not have Lyme disease, I would believe him, and I would move on from there. I needed to know once and for all if I had Lyme disease or something else.

I spent 90 minutes with this doctor discussing the past nine years of my life. Every tick bite, every treatment, everything. When all was said and done, he said to me that it was no surprise that I did not feel better after the original doctor put me on a Z pack for 5 days and then repeated the process; it would not have done anything to fight Lyme Disease.  He felt very strongly that after I described all of my symptoms and heard all my treatments that I have Lyme Disease and never had Rheumatoid Arthritis.

I left the LLMD’s office overwhelmed. I could not hold back the tears. 9 years. 9 years that could have been so different. 2 of my children don’t even know what I was like before all this happened. I am angry and sad. I want as many people as possible to know my story because it could be there’s as well. I am not the first person to be diagnosed with Rheumatoid Arthritis that has Lyme disease and I am certain not to be the last.

My new doctor offered no guarantees. He told me that this is going to be a long, hard battle. The very last thing you want to do to treat Lyme disease is to weaken the immune system. We have a lot of work to do. I was prepared for that.

Today I have something now that I did not have 10 days ago.

Hope.

My final thought to anyone that ever had any doubt about whether or not they had been “cured” from Lyme disease,  or had concerns about their current autoimmune disease diagnosis is to trust yourself, trust your instincts, and if it feels wrong it probably is.

As a side note, as of this writing I have been on antibiotic therapy for ten days. The results are that at least half the inflammation if gone from my joints. I don’t need any more proof than that.

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198 thoughts on “Misdiagnosed with Rheumatoid Arthritis (RA): My Lyme Disease Story

  1. Michael T-smith

    Whilst reading this I felt as though this has been my story. We are constantly giving in to the idea that all these Doctors and ‘Specialists’ hold the full story. My instincts have always been counter to my numerous diagnosis. I have felt that Lyme Disease is the underlying cause of my malady with all its autoimmune issues. I would very much like to discuss this with other people who have gone or going through similar experience.

  2. Megan

    THANK YOU!! Your story gives me hope. I’ve had pain and fatigue and what doctors say is RA for more than 3 years. None of the medicines (including Humira and Enbrel) really help me. I’ve always thought I’d contracted some kind of virus that is living in my body. I tested negative for Lyme 2 years ago but I want to get tested again. Please keep spreading the word, I think so many Rheumatologists just want to prescribe their usual meds and be done with the appointment.

  3. Jo-Ann Colburn Post author

    I’m so glad you found us Megan. Please know that you can test negative for Lyme disease and still have the disease. The test is less than 50% accurate. I would strongly recommend seeing a LLMD so that they can make a clinical assessment.
    Good Luck!
    Jo-Ann

  4. Diane Geldmacher

    I was diagnosed with RA last November. I ave been on many offering meds and nothing seems to help. Right now I am Taking Enbrel and 20 mg of methotrexate per week. The pain is constant and I am to the point of dispair. Each time I go to the Dr. He increases the dosage. My daughter is a veterianian and insists that my symptoms mimick lime disease. After reading your story, I am going to insist upon being tested for Lyme.

  5. Jo-Ann Colburn Post author

    That sounds like a good idea Diane. Just keep in mind the best Lyme test is less than 50% accurate. So you can have a negative Western Blot and still have Lyme disease. It needs to be a clinical diagnosis from a LLMD. My best advice is trust your gut. Nobody knows your body better than you do.

    Good luck! If I can help in any way you can send me an email at jcolburn@livingrheum.com

    Jo-Ann

  6. Joan

    Would you be willing to share your doctor’s name with me? My good friend’s story might as well be yours. In any case, good luck to you as the old you slowly emerges!

  7. Jennifer

    My son is 14 years old and has been suffering for almost a year from joint pain. It only hits one joint at a time and last 2-6 days. He has had it in his knees, ankles, wrist, fingers, jaw, elbow, shoulders, groin, and toes. He has severe fatigue with it and has been diagnosed with abdominal migraines a year prior to the onset of the joint pain. He has tested negative for RA and for Lyme disease. He does not have much swelling with it. Mostly pain and stiffness. We do live in a rural area with woods behind our house and have found ticks on him before. We have been to several different doctors and they all just tell me he does not fit into any category of one diagnosis. He takes Naproxen when he is having the pain and the rheumatologist had him taking 1000mg a day to prevent symptoms. As soon as he had us lower the dose, the pain came back within a couple of days. Searching for answers and feeling helpless…..

  8. Jo-Ann Colburn Post author

    Jennifer,
    As a mother I know that there is nothing worse than seeing your child in pain.The best Lyme tests available are less than 50% accurate. It is possible to have Lyme disease and not test positive. There are other tick borne illnesses that have similar symptoms as well. Migrating joint pain is very typical for Lyme disease. I would recommend consulting a LLMD. There is no harm in getting the opinion from someone who specialized in tick borne infectious diseases. The two best places I know to find a LLMD is http://www.ilads.org and TBDA (here is a link to the right page http://tbdalliance.org/diagnosing-tbds/find-a-medical-professional ) In both cases you’ll have to email a request and they will email you back the information. Both organizations are well respected and can be trusted. I would also recommend watching Under Our Skin. It is a documentary about Lyme disease. You can watch it on hulu for free here is a link http://www.hulu.com/search?q=Under+Our+Skin or you can buy it by clicking on the image on this site. Good luck. I hope that you are able to find some answers.

    Jo-Ann

  9. JOHN

    Sadly your story is typical for many people that suffer with chronic Lyme Disease, , Lyme disease is called the great pretender because it can mimic over 300 diseases

    I have met people who were misdiagnosed for years who went from Doctor to Doctor trying to figure out what was wrong with them, Some were told they had MS , Lupus, RA, ALS, Heart Disease Dementia Crohn’s, Chronic Fatigue ,Fibromylagia and a never ending list of other diseases

    Lyme Disease is a multisystemic disease it can effect every organ and system in the body manifesting itself differently in everyone . There are typical first stage symptoms , but symptoms can be as different as night and day in the chronic stages of the disease

    Sadly most main stream doctors are clueless about Lyme Disease and even when you have a diagnosis they under treat their patients . There is no excuse for this ignorance in the year 2013 concerning Lyme disease. People lives are being devastated and ruined by Tick borne diseases as the medical community remains ignorant . As many people know Lyme disease is a very political disease .

    Lyme disease is only one of many diseases you can get being bit by one tick, Many People with LD are Co infected with more then one pathogen like Babeisa, Bartonella , Ehrlichia Mycoplasma Rocky mountain spotted fever ect. Here is a small list of symptoms http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html

    I wish your story was rare but I have heard this same story 1000 times and will probably hear it again. Things need to change , Good luck on your Lyme disease treatment and your journey back to health, Thanks for sharing your story,

    John

  10. Coulson

    Jo Ann,
    I am so glad I found your site! I was diagnosed with R.A. over 12 years ago, then Psoriatic Arthritis (despite never developing psoriasis), and finally Dermatomyositis and possible M.S.! The infuriating part is that I lived in CT and had been bitten by ticks numerous times! Sadly, my daughter, who just turned six, has never known me to be well.

    Fortunately, I had bad reactions to all rheumatological drugs you mention, so I have gone without meds for the most part. While I have been in considerable pain and disability for the past 6 years, I have always felt that my pain would lead me to an answer. Like you, I never believed I had R.A. and al of these other autoimmune diseases. Finally, in September I lost vision suddenly (and temporarily) in one eye while getting my daughter ready for school. An “equivocal” lyme test (from the ophthalmologist!) led me to an infectious disease specialist who dx probable neuro lyme. (I had been dx with lyme while living in Washington, DC in 2001, but told I was cured despite continuing and worsening symptoms over the years, so I now believe that lyme has caused all of my problems for the past 12 years!)

    I have yet to find an LLMD (we moved to GA and they don’t believe in chronic lyme here.) But, I would love to hear how you chose your LLMD, how you are being treated, and what progress you are making.

    Kind regards,
    Coulson

  11. Kim

    Thank you so much for your story. I tested positive for Lyme disease in 2009 and have not been the same since even though I was VERY healthy all my life before and in very good physical shape up to that point. My doctor just told me last month he suspects RA & I have a family history that supports that idea, but I am so sick of doctors and no answers that I haven’t gone back in again for the rest of the tests even though it is very bothersome every day now.

    After reading this I will go in with both eyes wide open. Thank you for your story…… I have a feeling it will be very helpful in my near future….

  12. Leslie

    I was diagnosed with RA almost 9 years ago. Lyme Disease was ruled out after testing negative.
    After going through a few medications, I ended up taking Enbrel which I am still self injecting weekly.
    I’ve always been a little unsure been have known that something has been wrong with my joints. The Enbrel significantly helped the pain and fatigue.
    But NOW…..due to another health issue I have to handle, I had to get a lot if blood work.
    The blood work included Rhuematoid Factor and Lyme Disease. Both being High!
    ANA being normal and a couple other tests showing that I more than likely had the Lyme Disease first, but it just hadn’t shown yet.
    So all thus time….treating the wrong thing!
    Now…starting over!
    I’m so upset.
    I haven’t been to the rheumatologist to find out where we go with this yet.
    I can only imagine that it won’t be easy.

  13. Heather

    After 1.5 years I will be seeing a fourth RA doc but now I am thinking about an LLMD. I have told each doctor I am convinced this is not RA that I have a “brain fog” and can no longer write my thesis, something is terribly wrong here- they all go mad, indignant, condescending, they don’t need a Lyme test they can just LOOK at me and SEE I have RA. I live in Palm Springs, CA and even though I insist I spend summers in Montana sleeping on the ground or in a tipi they always ask well did you see a bullseye? And I reply no, but if it was on my head or back how would I notice it?? Recently out of the blue one ankle swelled up to 2X normal and felt as if someone was sawing my foot off with a dull hand saw. Disgusted with AMA right now. Heather

  14. Mary Beth Johnson, RN

    Hi Jo-Ann!

    I quickly read your story and will go back over it as soon as I can but on first review, it sounds so much like some of what I almost went through. I’m Questioning my RA diagnosis.
    I was bitten by a tick almost 4 years ago, and became so sick I ended up in the hospital 3 months after the bite. I had some sort of brain inflammation from the Lyme and ended up in the hospital for a week (on round the clock IV Dilaudid, for the intense pain.) Fortunately they did all sorts of testing in the ER (CT scan, MRI, Western blot for lyme) so at least I had a diagnosis, and they inserted a PICC line for iV rocephin with I was on for a month. It took months for me to feel better and I had several relapses treated with Doxycycline.
    Fast forward a year or so and I developed a Trigger finger in my left hand and went on to have mysterious joint “blowouts” where the joint would swell up, get VERY painful to touch, remain that way for a few days then settle down. My primary clinic did some tests and my RA factor was incredibly elevated so they packed me off to a Rheumatologist who did more tests and pronounced me with RA. Then he wanted to start me on Methotrexate (I asked him if he had read about the side effects. ) and of course he wanted to give me PREDNISONE which is highly contraindicated for LYME.
    While my RA factor was REALLY high, my Sed rate, which is almost always elevated in RA, was very low.
    Plus, I’ve never had symmetrical joint involvement (thank goodness…if one side hurts, I can usually use the other side of my body) so that is odd.
    So HERE’S MY QUESTION to you and I realize you are not an MD but you have a lot of experience with this stuff…have you seen LYME , cause things like the RA factor and Sedrate to act odd?
    It seems entirely possible that Lyme can lead to Rheumatoid like symptoms.
    Would love to chat with you or write if you are willing. Too many things don’t add up and I really think I have Lyme lurking.
    I recently read a study on monkeys. They had two groups. Both had lyme. Group A–they treated with the “standard” treatment of Rocephin for a month (IV) and the other, Group B, they also treated with a month of IV Rocephin (which is what I received) FOLLOWED by a month of Doxycycline, by mouth.
    Results…in Group A, 100% of the monkeys STILL had LYME at the end of the treatment. group B- 75% of the monkeys had lingering LYME !!! so that tells me that most of us treated for Lyme, are chronically under treated! Maybe what I really have is a lyme arthritis. of course, Testing is somewhat unreliable. Makes me thing the doctors like Mercola, and Brownstein and others are on the right track with the antibiotics.

    i’ve refused treatment altho have seen a chiropractor who is working on overall wellness. I’ve eliminated wheat and dairy and nightshades from my diet (My Rheumatologist (who shall remain nameless to protect the guilty) said to me…”well you can try that diet stuff, but it won’t work” . I should say he is my EX-Rheumatologist. It is ok for them to poison us, but when it comes to working with us to find a healthy option they are not interested. Phooey.
    I hope your blog will bring all sorts of people out of the woodwork, who have found great solutions which when combined with others ideas, will lead many to greater outcomes. I was just on the phone with a woman who called me for a survey of women’s health care in the VA system. Turns out she also has RA and is treating it with Homeopathy, quite successfully.
    I”m blessed to only have a few joints that really are problematic and look forward to the day when I am totally fine.
    Wising that for all! We can do it!
    be well
    mary beth

  15. Ingrid

    Hi Jo-Ann, after reading your story, I wonder if I have been treated for years for the wrong disease. I was diagnosed in 1999 with Lyme Disease, went to a Lyme specialist in Connecticut. He treated me for 6 months with 6 different antibiotics. When that didn’t help he decided I have RA and should see a rheumatologist. That doctor stopped the antibiotics immediately and started with various RA medications, until we found a combination that seem to work for me. I am now living in Florida and have seen a Rheumatologist here for 8 years. She never changed my medications until last year when I complained about increased joint pains all over my body, specially over night. Nothing seems to work. Should I look for another doctor? Are there any Lyme specialists in the Daytona Beach/Jacksonville area of Florida?
    What is your treatment now that you know it is Lyme D. rather than RA?
    Thanks for sharing your story.
    Looking forward to hear from you,
    Ingrid

  16. Jodi

    Jo-Ann,
    I was diagnosed 7 /12 years ago with RA and now have severe neuropathy as well.
    In addition, I have been on prednisone the entire time at higher than normal doses so there have been side effects with that as well.
    I have some questions for you, could you please email me?
    Thank you, Jodi

  17. Patrick

    You arent alone. Mine wasnt RA…it was IC, and seeing Ruth Kriz is what helped me. She fould bartonella and babesia where other docs told me to just accept that i would never feel better and all i could do was manage my symptoms. Like you, It didnt sit well with me. I even did a 45 day green juice fast like in Fat, sick and nearly dead which seemed to really help me a lot..i dropped like 60 lbs! Oh, and ive been on lots of antibiotics and liposomal vitamin c. I had a protozoal infection too called protozoa rheumetica (fl-1953), so I am on plaquinil and byron white formulas herbal drops too. What a difference! Now, i feel 95% back to normal in two years….after 14 years of feeling worse every single day. Its nothing short of miraculous for my primary care doctor (who is convinced IC isnt treatable as 99% of doctors) and just good medicine practiced by Ruth Kriz.

  18. Vicki

    To the author,
    Did you ever take RA meds like enbel, humira, Actemra, etc…and if so, did you feel any relief from those meds? I have been diagnosed with RA but have my doubts. I do get some relief from the RA meds but have never felt great.

  19. Jo-Ann Colburn Post author

    Hi Vicki,
    I avoided the biologics. To be honest, they just scared me. The only drug besides prednisone that helped me feel any better was plaquenil. They do not know why it helps some people with RA but they do know why people with Lyme disease respond to it. If you have doubts, it can’t hurt to get an opinion from a LLMD. Lyme is spread not only through tick bites. It can be transmitted from mother to child during pregnancy, sexually, through blood transfusions and mosquitoes as well. I hope that I have been able to help and that you start to feel better.

    Jo-Ann

  20. Caroline

    Thank you for sharing your story. I’m UK based and my nurse removed a tiny tick from my arm and dismissed my issue, “That’s not a tick as it’s too small … blah blah blah … ticks are very different.” I knew different but when I started to speak up, she brushed off all I said, patted me on the head and sent me on my way – no antibiotics or tests as my opinion was worthless to her.

    That was the mid 1990s. During the 1990s I began experiencing periods of fatigue which wiped me out completely – sometimes for months but I didn’t go to my GP. By 1998 (aged 34) I was told I have RA – psoriatic arthritis and I’ve had bouts of swelling ankles, aching tendons and joints, Meniere’s Syndrome (tinnitus, aural fullness, balance issues, sensitivity to sound and hearing loss), chronic fatigue and low mood. I know you don’t mention low mood, but I have all the other issues. During 2005/6 I spent the best part of two months sleeping all but 2/3 hours a day as I was completely shattered – my GP sent me to a psychiatrist but he said I am ‘normal’ – LOL, I fooled him! Joking aside, I’ve had lots of energy issues and joint/balance issues since the mid 1990s.

    Since 2012 I’ve been diagnosed with low Vit B12 and chronic fatigue syndrome. I’ve been scanned for MS as the symptoms have been so similar but my brain looked great. The nerve issues feel like I’m being brushed with nettles and it made sleeping impossible.

    I’m on Duloxetine and a strong antihistamine which help but, guess what, they cause drowsiness. The Vit B12 injections now have my levels acceptable but still, I have crippling chronic fatigue which isn’t great for my relationship with my husband.

    Thank you for describing your issues so well. I am going to ask for a test for Lyme Disease – I don’t want it but it would be good to know what on earth is wrong with me and get the right treatments. My GPs are writing off my issues as psychosomatic. I’m very sorry to hear about all your issues and that it is confirmed as Lyme Disease.

    All the best to you and your loved ones xxx

  21. Jo-Ann Colburn Post author

    Hi Carline,
    I am sorry that you have had to go through so much. After talking with a friend in the UK that has dealt with Lyme disease I learned that it is much harder to get a diagnosis in the UK. This is what she said “Jo-Ann the best place in the UK is private clinic breakspear Hemel hempstead – there is no UK NHS specialist in Lyme who accept chronic lyme and have a clue how to treat it – get her to join Lyme Disease UK Discussion group on Facebook and if she wants to friend me that’s ok
    I think we arte worse in UK than most other countries for help although some doctors will be led by patient as mine was.” After reading your story all that I could think of is that your story sounds so much like most Lyme suffers that I know. I hope that this information can help you.
    All the best.
    Jo-Ann

  22. rebecca warnecke

    I tested positive for lyme 11 years ago was treared with oral antibiotics for three weeks. 9 years ago I was diagnosed with RA. My story is your story. Last week tested positive for lyme again but dr is on vacation and has decided to wait two weeks to retest because he is sure it is a false positive. I live in the south and feel I will never get help here could you possibly give me the name of your llmd? Thank you for your time and I am very happy for you.

  23. Jo-Ann Colburn Post author

    Hi Rebecca,
    I would be concerned if I were you. If you were diagnosed positive for any other bacterial infection, would the doctor say let’s wait and see? And would you be ok with that? The good news is that you tested positive. The test is only less that 50% accurate, so many people have tested negative and actually have Lyme disease. If you test positive, you’ve got it. I know that it is difficult in the south to find a LLMD. I will email you my LLMD’s information and hopefully we can find you some help closer to where you live. Many Lyme patient travel many hours to find competent help, some have even moved to be closer to a good doctor. I am so glad that you found my story.

    All the best,

    Jo-Ann

  24. Kristina B

    It’s been about 25 years of misdiagnosis for me. My lyme tests have always been all over the place, positive, negative, inconclusive, even though I had a bullseye rash at 10mo old. I fought so hard against the RA medication, and EVERY single time I was put on antibiotics my symptoms dramatically improved.

    For the past 6 years or so I have been seeing a new Rheumatologist (my old one was terrible) and he refused to believe the lyme had anything to do with it. Finally when the symptoms just got unbearable, persistent knee and elbow swelling, after about a year of begging he finally gave me a lyme blood test. Negative. I was heart broken, I have had lyme at least one more time since I was a baby, and at this point I know what it feels like. My body was screaming at me. I spent a lot of time out in the field the summer before the test and it’s very likely that that’s when I got reinfected, as that’s just about when everything went to hell again. I had been nearly symptom free WITHOUT medication for about 4 years before everything flared. The rheumatic drugs weren’t helping. I reluctantly agreed to yet another harmful cortisone injection, god knows how many I’ve had at this point in my life. It seemed like it was helping for the first two days after and then my symptoms flared even worse than before! The doctor put me on prednisone, and everything seemed to be getting a little better for about 3 days, then on the 4th day the swelling, which had never completely gone away, got even worse! I started to taper of the prednisone. I was at my wits end when my mother suggested I go see a internist who had treated one of her friends who had lyme very successfully. He was progressive in his treatment and diagnosis, and he was one of only a handful of doctors using the new blood culture lyme test. I looked up the study online (a 94% accuracy rate, what?), and the controversy surrounding it, and the cost. I decided that the study seemed sound to me, and questioned the CDC’s ruling on it, and decided that I would go for it. I would have paid anything to see what was wrong with me. And what do you know, it came back, POSITIVE, within the first time period.

    I should mention that the internist, as soon as I shared my story with him, my reactions to medications, my history, and some of the online bloodwork I had access to, said that he thought I had been misdiagnosed with RA and put me on doxycycline before I even got the result back. He said that he wanted to start treating me as soon as possible, before my rheumatologist did any more harm to my joints. It was hard to hold back the tears in his office, finally a medical practitioner, the first one in 25 flipping years told me what I had been thinking for so long, but hadn’t had the guts to fight for. It felt so good to hear that, and made me so incredibly upset at the pain I had been in, the frustrations of the disease I had dealt with, the doctors, and the terrible harm I had done to my body within the first quarter of my life simply because of a persistent misdiagnosis.

    Let me tell you, the day after I started on the doxy I could bend my left arm straight again, I cried. Can I mention that I hadn’t been able to do that for OVER A YEAR?? It had been drained and injected with cortisone, iced, heated, wrapped, immobilized, exercised, nothing helped. My rheumatologist looked at it, saw that it wasn’t improving and told me matter of factly that it was scar tissue, and that’s why it didn’t improve with RA medication. Even I could tell that was bs, but like a good little patient I did not question him. On the doxy my knee stopped getting bigger, and started shrinking after being swollen for months! It was as big as a small coconut, and now there’s just a little bit of fluid left to go. I have most of my mobility back, when none of the RA meds could touch it!

    Now that I’m on the doxy and my old RA medication at the same time, although at different times during the day, I’ve noticed some interesting things. A little over an hour or so after I take my RA meds my elbow starts to flare, and my knee swells a bit more, and my wrist swells. But when I take my doxy a few hours later everything improves again. It’s not very useful to be on immunosuppressant drugs while taking antibiotics, and I suspect that’s what’s causing these mini flare ups. I have to call my Rheumatologist and let him know that I’m tapering myself off of the sulfasalazine, but I know he’s just going to fight me about the lyme diagnosis. But I have to find strength, because for the first time in so many years I can finally feel myself getting the motivation to persevere back! There’s finally some hope for my future. I need to fight the good hard fight, against the doctors, against the disease, and take my life back into my own control!

    I wish more doctors were lyme literate so that so many people could be spared from such an unnecessary story like ours. Good luck!

  25. Jo-Ann Colburn Post author

    Thanks so much for sharing your story. I really believe that in sharing our stories that someone else who is struggling will see that there is hope.

  26. Ingrid elmorsi

    Hi Jo-Ann’
    I told you my story on 2/18/14. For my last bloodwork I requested a Lyme test. And yesterday I got a call from my Rheumatologist that I tested positive for Lyme. She sounded very surprised and asked: If I had been bitten lately by a tick. I reminded her that I had been diagnosed with Lyme in 1999. Her response”oh no, this has to be a new infection, the way it shows on the blood test.” She suggests to see an infectious disease specialist. Do you think that to be the right way to go? We don’t have any LLMD close to where I live.

  27. Christine

    Hi Jo-Ann,

    Reading your blog had literally saved my life and years of suffering. I too was told I had RA after having all the diagnostic blood tests. My gut instinct told me something wasn’t right, I kept mentioning that I had numerous tick bits over the past two years but never thought much of it. Of course I was told I was crazy and “it’s only a tick bite”. I was given Methotrexate which I took twice, it made me worse!! I dumped the pills as well as the MD that prescribed them.

    I then decided to do some research after reading your blog and found an MD that tests and treats Lyme. I tested positive on the Western Blot and am now being treated (antibiotics). I will be going on one year since this whole ordeal began, I still have a way to go but I have a life again.

    Thank You Jo-Ann! I hope others can find hope through you blog.

    ~Christine

  28. Sarah

    Good morning JoAnn! I am another person with a similar story to yours, and am awaiting test results for lyme as we speak. I wonder though, do you know if lyme can actually cause bone erosion? I have a little bit and for that reason suspect that it’s actually RA still, but I am curious if you happen to know anything about that…for instance did you experience any bone erosion at all?

    Thank you for sharing your story!

  29. Jo-Ann Colburn Post author

    Hi Ingrid,
    I think that you should do whatever it takes to get to a LLMd. I know that they are hard to find and that you’ll probably have to travel, but your health is worth it. I travel over 3 hours one way to get to my LLMD. There are people that travel from Europe to see mt LLMD. Infectious disease specialist may be LLMDs and they may not be. Do your homework your health is worth the effort

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