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

  1. Sue

    You can have auto immune and lyme. I have both. Psoriatic arthritis. My LLMD had me on 1 enbrel shit a week along with lyme meds otherwise I could not withstand lyme treatment. It’s not ideal but he talk to the former president of ILADS and decided this was best rout with the massive damage I have.

  2. Alison Cutler

    I have been feeling typical symptoms of Lyme but did not see a tick, have the rash or have a bull’s eye. I have been feeling achy, fatigued, and unmotivated and these symptoms come and go. I went to general practitioner who performed blood work. I was told I tested negative for Lyme but my autoimmune markers came back positive. I have been referred to a Rheumatoid Arthritis doc. I have no family history of RH, I am slim, and am not a smoker, so I don’t fit the typical rh patient. I do however do yard work in my heavily wooded yard frequently. Before I go to this RH doc I would like to first see an LLMD in my area to rule out, if possible, Lyme or other tick borne illnesses. Can you tell me where you live and if it is within driving distance I would love to know who your doc is. Also, you have any suggestions on how to find LLMD in my area? Thanks

  3. Angel B. Roberts

    7 yrs for me, I still feel I have Lymes but they keep saying RA, they even said I was in remission once but I still felt horrible.I still Feel horrible.You are right once they hear RA from a mother Thats what you have. I even had one RA dr. say “you might have Hep C” (?)After many many expensive labs later No I don’t.
    As a child I had RMSF so it still shows up in blood work. But I have pushed for the IV Antibiotics but to no avail.No one really seems to interested in trying that therapy. I too got the ‘ole “Lyme Disease is too rare”
    My husband is always saying “you are sick all the time” This whatever has aged me, The RA meds take what little bit of strenght I have left, and I am losing my hair.I see the Rheumatologist again on Monday but I just don’t know, I think I have lost my faith In their field.

  4. Jo-Ann Colburn Post author

    Yes I have. It’s also possible to have a negative Lyme test and actually be infected. There are other tick borne infectious diseases that can mimic the same symptoms. The best way to find out is to get a clinical diagnosis from a reputable LLMD. If you need help finding one, just email me and I’ll do what I can to help

  5. Bobby

    Hi,
    Thank you for putting your story out there. It has been so hard to find someone, anyone to talk with that might understand what this is like. I’m thankful for an opportunity to speak. I live on Cape Cod and I was biten by a tick in 2011 on the outside of my ear. The tick tested positive and and one week later my ear blew up like a balloon. My doctor from Boston was unimpressed and ultimately unworried. I went to a local doctor and he immediately diagnosed me with Lyme and started me on a 3 week course of doxycycline. I ultimately tested positive for Lyme. I was good for 2 1/2 years until my hand started to bother me. My Boston doc told me to take Advil. After it persisted, he checked my RA level and found a problem and sent me to a rheumatologist. The Rheumy told me the whole Lyme thing is an absolute farce and it is ridiculous. She’s also named several doctors on the Cape that I really need to stay away from. I’ve been on methotrexate and plaquenil for about a year. Honestly, I feel worse than ever and I completely suspect Lyme. Can we catch up and speak for a movement? I really would like to hear more about your situation? Thank you very much for your time.
    Bob

  6. Bobby

    Hi,
    Thank you for taking the time to post your story. It’s been so hard to find anyone that might understand what this feels like. I was infected by a tick that tested positive. I started 3 weeks of doxycycline and ultimately tested positive too. Felt ok for 2-1/2 years then developed pain in my hand and foot. Found a high RA number and was sent to a Rheumatologist. Rheumy informed me that this having anything to do was not possible and that the whole cronic Lyme discussion was a farce. What I do know is that a year of Methotrexate hasn’t helped and although plaquenil seem to help my fatigue, my symptoms seem to be progressing since starting it. I’d really like to speak with you if it all possible. I can be emailed at bmaff@aol.com.

    Thanks for your help and info.

    Bobby

  7. Karen

    My story sounds similar. I need to find a LLMD and I live in Massachusetts. Who did you see?

    Thanks,
    Karen

  8. Julie

    Bob,

    I live in Kansas where Lyme is not even considered in most cases. When I told my Rheumy about my Lyme diagnosis, he even stated to me, that “one day, research may show that a bacteria like Lyme, causes RA”. He has no problem with me being on long term Doxy, and said he would prescribe it if my LLMD didn’t want to anymore. Doxy is actually a drug that has shown to be an effective treatment for RA. I was on Methotrexate for several years, but not anymore. My C-RP test came back normal just recently.

  9. L.C.

    Thank you so much for this. I am crying tears of frustration but also of hope. After years of chronic neck pain and headaches, trying every therapy possible including cortisone injections, I have finally been diagnosed with Lyme by a naturopath here in California. Years ago, my PCP told me I had the rheumatoid factor, he concentrated on that, sent me to a rheumatologist who told me I have no RA symptoms. To think that all of this time I had Lyme, that I could have avoided years of pain, is so frustrating. But now I have hope that I can get better, and I have info whenever other people ask me, “well, are you SURE you have Lyme?” Thanks again, it’s such a relief to finally understand what’s going on in my body!

  10. Betsy

    I was just diagnosed with RA but have been dealing with problems for almost 4 yrs. like u say the rheumys say not Lyme disease. I’m also on methotrexate just for 6 weeks now. I can’t tell it helps yet. I’ve always wondered if I have Lyme disease. My symptoms have changed a lot. I started out flu like, then my connective tissue, tendons were inflamed. I was told that from Duke neuromuscular clinic. She sent me to rheumy and they put me on prednisone saying it possibly was autoimmune, Polymyalgia rheumatica. I was on it 1 1/2 yrs and had to come off. My symptoms now have changed to inflamed knees, wrist, aching neck and total leg aching. I just have a lot of inflammation. My walking is not good but it also hurts to walk, turn my neck, use hands etc. if anyone can tell me if their symptoms are different or like mine, I would love to hear. Like others I doubt these docs sometimes. I’m begging for a reply. Thank you.

  11. Rich Peckio

    I was diagnosed with “chronic untreated Lymes” disese by my doctor in 2014. She had just diagnoseed her husband who had similar symptoms. Her diagnosis was confirmed by some blood tests she ordered. She put me on a 3 week course of antibiotics (doxy). Didn’t have any real effect so she put me on for another 3 week course with the addition of hydroxychloroquine. I had a sever reaction (sunburn) and she stopped all meds. Unfortunately she moved her practice and I had to find another physician. In between I also had a visit with a rheumatologist. She did some blood work and told me I had osteoarthritis. Something to expect at my age 66. I am very active and still working full-time.

    My new infectious disease doctor also did some blood work and told me I did not have lyme disese but I had very high sugar level. I have never had this propblem before. I am not overweight, sedentary and have no family history of diabetises. He prescribed Metforman but gave me nothing for the pain I was experiencing in my hands, legs and feet. I also have a large swollen area near my right elbow. It was x-rayed with not definite diagnosis. I was told it was possibly a swollen bursa sac. Not to worry. I was not comfortable with the doctor who told me I didn’t have Lymes disease (with all my pains & sweeling) but rather I was diabetic with virtually NO SYMPTOMS. Needless to say I won’t be returning to see him anytime in the near future.
    I found a new rheumatoilogist who ordered 28 blood tests and x-raysof my hands not my feet which I also complained about. He told me it was proably RA and put me on Meloxicam and Tramadol daily. On my next visit I showed him my swollen ankels and feet which I had never had before. This got him quite nervous and immediately sent me for a sonagram of my veins to rule outa blood clot. The test came back negative. He now wants to send me for an MRI to see what is causing me pain in both my calfs. He also said I had some degeneration showing up in both my hand x-rays which points to RA. Does all this sound familiar? He prescribed Hydroxychlorquine. My first doctor put me on this to flush out dead cysts the antibotics were killing.
    At this point I don’t really feel anyonr knows what the heck is going on. I was an athelite in high school and collage and I am very in tune with my body. Something is wrong and I don’t know what. I have pain and swelling so I must have something. Unfortunately no one can give a clear answer. I am very reluctant to take any of these medications. I never have been on any meds long-term and I reaklly don’t want to start now. I need answers. Unfortunately my team of specialists can not provide me with any.

    I came across your blog researching my symptoms. It is amazing how similar many of the posts are to my conditions.

    Thank you for providing this forum for those of us with these problems. Of course I will be looking up a LLMD in my area.

  12. Therese

    Thanks so much for your story. I’m lucky- my RA doc asked me yesterday, since I’m not responding to methotrexate, do I live in the country? I do, in California, where Lyme is uncommon but present. When I got home I remembered I took a trip to Maine, walked in the woods, in January of 2013, and in June of 2013 is when my shooting pains started. No evidence of a tick bite, but one in the scalp wouldn’t show and not everyone gets a bull eye. I have the one large swollen knee typical of lyme, and no other joint problems, atypical of RA. I’m glad he’s going to test me for Lyme. He said he has treated two people with Lyme. His name is Hallegua, in Beverly Hills. Great doc.

  13. Elycia Henry

    If you have any information about doctors in Minneapolis, MN will you please send them to me? Thanks

  14. Lonnie

    I’m literally in tears right now….I don’t know what to think or do anymore. Your story gives me so much hope and resonates with me on so many levels. Thank you for posting your experience. I’ve always trusted my gut but test after test left me feeling defeated and unheard. Here’s my story: I’m a 32 year old female who lives in south jersey. I removed a lymes tick off my back a year ago. The doctor gave me 3 weeks of amoxicillin, to be taken 3 times daily, since I’m allergic to doxycycline. It wasn’t that bad for a few weeks, but then I started getting joint and muscle pain. I blamed it on how I slept because my primary assured me I was “cured.” Did I mention that he diagnosed me with the lymes just by my bulls eye? Yea, he refused to give me a western blot test or any other blood work until I became a regular at his office complaining of migrating, swollen, and throbbing joints. So he does the blood work and my RA rate was quite high and I was negative for lymes. What do you think happened next? He sent me to the rheumatologist who did a bone density test that came out normal; x-rays that also came out normal; and more blood work that once again showed RA. I couldn’t (and still can’t) get the feeling out of my gut that its lymes or another tick borne illness. But who am I to argue with specialists in their field? He put me on methotrexate and folic acid, today was my first 3 doses to be taken once weekly. I’m lost, I was in school, working, and living a normal life a few months ago. Now I’ve moved back into my parents house, and am no longer in school or reliable enough to keep my job as a vet tech. My parents have to bathe me, make my meals, stay up with me at nights as I scream and cry in agony, push me in a wheelchair when I have an unbearable flare etc… I feel like such a burden on them. I should be helping them, not the other way around sometimes. I was wondering what other tests you had had over the 9 years. I’m shocked that you tested positive for lymes and attributed it to something else. My lymes test have all been negative and I feel hopeless. I bet you have felt that none of the doctors were listening to you at sometime or another. That’s how I feel, like I have no voice. They see my mother with braces on her legs and using a walker (osteoarthritis) and assume that it must be arthritis. There is no history of RA in my family. I really need someone to talk to who understands. Sometimes I feel so alone. I know a tick bite can trigger something lying dormant inside of you, but my instincts say its not RA. I could be wrong….who knows. I’d love to talk to you through email or text. I’m in need of an understanding person with knowledge on the subject. I’ve done my own research too and has led me to a state of confusion. Love to hear from you!
    P.S. I too was put on antibiotics for an unrelated condition and had 3 weeks of feeling great….like myself again. As soon as the Meds ran out I had an awful flare up and was bedridden for 3 days. Anyways, I hope to hear from you and thank you again for posting you’re story.

  15. Lonnie

    Hello again Jo-Ann :)
    I don’t know if you received my comment or not from last night but can you give me the name of the Lyme literate MD you went to also? I’d really appreciate it and I’d love to talk to you some more. I know its only been a year for me and that I was just recently diagnosed with RA, but I kept challenging everything the doctors told me and it got me nowhere. I’m struggling both emotionally and physically everyday. I definitely try to laugh a lot and stay positive but its so hard. Anyone on here who has more experience with this than me please feel free to email me at iolanda26@ymail.com.

  16. Chuck sweiderk

    went to doctor got blood test nurse said high levels of rheumatoid doctor said Lymes which threw my rheumatoid no up. Went to infectious diseases doc they said rheumatoid and there is no sighs of Lymesi asked for antibiotics she said what for ? I said it can’t hurt to try . She gave me a ten day script. Pretty much told me I was wasting my time. I diagnosed my self with some kind of tick or mosquito born disease. Like you said if you think your right you probably are. Thank you for sharing this story. It’s going to save a lot of arguing. I copied the story and I’m going to bring it every time.im a triathlete and a bricklayer they told me today I would have to stop both. They better stop practicing medicine and start really learning it

  17. lisa murray

    My 15 year old daughter was diagnosed with chronic and acute Lyme Arthritis in her right knee a month ago after taking her to an orthopedic surgeon thinking her knee was swollen due to a lacrosse injury. He took one look at her knee and asked me if she was ever tested for Lyme. Four years ago she was treated with Amoxicillin after I pulled a tick off of her right shoulder (she developed the red raised rash with bull’s-eyes and a fever a week later). No bloodwork was done and no follow up by her pediatrician. I have since learned that blood work needed to be to done to establish a baseline. Sadly, four years later we now know that the treatment didn’t work. Now she has Late Lyme Arthritis and Acute Lyme in her right knee. Two weeks ago she had a Synovectomy, which is an arthroscopic orthopedic knee surgery usually performed on people over the age of 55 for chronic osteoporosis and or rheumatoid arthritis. Her knee joint(s) were severely damaged from the 4 years of active/chronic Lyme. She has been one Doxycyclene for a month and the blood and fluid and tissue samples show that her numbers have gone up not down. Her knee was just drained again of 80ccs of cloudy fluid (the Lyme infection) yesterday. I’m working with an Infectious Disease doctor who is battling with my insurance company to get approval for IV antibiotics. It’s a nightmare for my daughter. it has derailed her life, not only dealing with the knee pain but extreme fatigue. She’s a freshmen in high school who feels like an 80 year old. She can play any sports or participate in gym class. As her mother, I won’t stop until I get her the best treatment. Even if my insurance company denies the IV treatment, I will pay out of pocket for it – that’s how strongly I feel about it. It all comes down to $$$$ with the insurance companies which is a disgrace and liable as far as I’m concerned. But for now, I will get me daughter what she needs. I have learned very quickly to step over the doctors who would rather treat her with Doxycycline indefinitely. I’m the captain of my daughter’s life – get out of my way if your not on my team!!!

  18. Eric

    Hi Lisa,

    First, I want to say how sorry I am that your daughter has to go through this. I wish her a speedy recovery and good health. Please give her a hug for me and tell her that she is not alone and MANY people care for her deeply and wish her well.

    I am Jo-Ann’s husband and wanted to respond to your comment on her behalf. Sadly, she passed away a few weeks ago and had not been keeping up with comments for awhile, as she grew more ill. Who could blame her? BUT, I know it was important for her to get the word out about Lyme Disease so that it is recognized for the public health hazard it is and that people can get early and proper treatment.

    It sounds to me like you are doing everything you can do for your daughter and are a true Lyme Warrior! Jo-Ann would just add that a key aspect of getting better is to get a Lyme literate doctor, if she is not already seeing one.

  19. Lisa

    Hi Eric,

    Let me start by expressing my deepest sympathy. Jo-Ann was a warrior and inspiration. I can’t imagine the depth of your grief mixed with the frustration you and Jo-Ann shared about her misdiagnoses and treatments over the past years. God bless you for carrying on her fight Lyme Disease awareness and treatment. She was so right about finding a Lyme Disease doctor. They are not easy to find. No one should ever have to die from Lyme Disease again. I will do whatever I can to help carry her torch, just say the word.

    Aetna denied Molly IV antibiotics this past Friday but I have a warrior at Jefferson Infusion appealing their decision by supplying them a copy of Molly’s positive Western Blot in addition to the positive Lyme Diagnosis from the tissue pathology from her knee surgery. I’m confident that the IV antibiotic approval will come sooner than later. I wonder if Jo-Ann ever had IV antibiotic treatment?
    God bless,
    Lisa

  20. Pingback: In Memory of Our Partner Jo-Ann Colburn | Colburn Strategic Partners

  21. Patricia

    My husband went through similar situation. Major pain for 2 years. Who did you see? please advise.

  22. dee

    thaank you for sharing your story. could you be so kind to help me find a lyme disease doctor in the oklahoma city area?

  23. Laura

    Thank you for sharing your story, I’m currently battling symptoms of Lyme disease but doctors say I have RA. I have tested positive for borrelia but rheumatologists brush it off and want to put me on methotrexate; I’m 24. Would love to talk with you more and get a recommendation if possible.

  24. Jennifer

    Hi,
    Does anyone have experience with parvovirus b19 (fifth disease) being thrown into the mix? 10 years ago i was a preschool teacher and was infected with Fifths. I was finally diagnosed via blood test after i did research and demanded that test. The doctors did not initially believe the innocent child’s illness could make me have overnight complete body arthritis. It lasted 13 weeks then mostly went away.
    This year (after a long break from working with preschoolers) i was once again working in the schools at kindergarten level. I started to feel terrible. The arthritis was bad but not as bad as the first time. (At least i could Open my hands!) the overall fatigue was brutal! I could NOT get enough rest and everything hurt– muscles too. It did not feel like just joints. Soon, my own first grader became vaguely sick, then improved, then fever, fatigue again, then improved and the body rash showed up. Meanwhile, i still felt terrible. After 5 weeks of feeling badly, i asked the dr to test me for Fifth/ parvo. She said it was going around and another patient who had had it twice was also a teacher. The tests showed elevated RF and she said the parvo antibodies looked like they were from the first time 10 years ago. Frustrating! So, move along a month or so thinking i must have RA and retest. RF is much the same at just under 16. Not conclusive either way. Now waiting for a rheumatologist consult. Feeling mostly better, so not sure it is even worth the frustration. Suggestions of which tests i should insist on when i see the rheum? (I am in the South , so Lyme is not to common here, but the ‘vagueness’ of Lyme describes this perfectly.

  25. Shari

    I am so happy to find these stories. Today I found out from my primary that I have Lyme Disease and I was also diagnosed with RA 2 years ago. Now I have so many questions and I have an appointment with my Rhuemy Thursday. Primary doc put me on doyc for 2 weeks and then a follow up with him. I am so stressed about this because now I wonder if I ever had RA? I will keep you posted.

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