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Long-Term Lyme: Were You Diagnosed With Lyme Disease First, or Something Else?

For millions of patients, like me and the dozens of other patients that shared varying degrees of their situations and stories here, still fighting Lyme Disease years after our initial infection, it is emotionally difficult to read or hear that our disease ‘does not exist’.  We need a larger percentage of doctors and the general public to understand that such statements are completely unfounded.  The science and the stories are all on our side, even if the politics so far are not.

Every bit of awareness we can spread is worth our time and energy, whenever we are well enough to try.  And if you are not sick, these accounts are worth your time to read and our efforts toward change are worth your time to help with.  Odds are you will know someone soon enough that will have to live through this if we don’t help fix the factors that are prolonging our illness.

Time will be on our side when the stories and the science are finally in the right hands and understood by enough people who aren’t yet sick.

Patient accounts of Chronic Lyme Disease, combined with science and the evolution of this debate, are a critical piece of the current battle over the persistence of this disease and in it’s diagnosis and care.

There are accounts and faces and stories of this illness spread by many means, but there will never be to many places and ways to share our stories.  The accounts here all include hallmark traits of our experiences that point to the specific problems and pitfalls patients are facing as a result of currently inadequate policy and guidelines that inhibit our care.

What You Can Do

If you are a patient new to Lyme, share what you have experienced and find ways to connect with others in the Lyme community. There are urgent needs and ongoing campaigns posted in tabs on this page, but there are also Lyme organizations linked to that you should visit.

If you are a politician, representative, or member of the media being asked for support, please read these stories and know that there are hundreds of thousands of us living this.

Please help in any way you can and watch for or make opportunities to do so.

There is further background on this debate and numerous links to related resources in the following post and articles therin:

Were you diagnosed with Lyme disease first, or something else?

I was one of a “lucky” few longer-term Lyme patients who was not told they weren’t sick. All of my doctors felt there was something seriuosly wrong with me.

I was, however, adamantly told it could not be lyme (based entirely on geography). I was diagnosed with Chronic Fatigue Syndrome, orthostatic hypotension, ADHD, sleep apnea, hyperflexion, TMD, a sinus infection, and Bell’s palsy.

It is still unbelievable to me that Lyme was decided to be impossible without adequate evaluation, but that it was considered perfectly reasonable to think that all of the above conditions could all suddenly arise after a tick bite, all coincidental to one another and the tick bite. Statistically feasible? Yep, really.

So, If you are in the ‘long term’ Lyme disease boat, was your initial treatment not effective, or was your diagnosis delayed? Or wrong?How Long Did a Proper Diagnosis Take?

Any and all answers appreciated (anything from a few words to a detailed account, all show what patients are now routinely encountering, since the odds of a fast diagnosis are shockingly slim).

Answers are also desired regarding how many patients remember a rash in this related previous post.

I can add your comment myself if you’d rather give it to me directly for any reason, and will be adding answers given in direct response to this post question via Facebook or other Lyme discussion boards.  One way to give it to me directly is via my facebook page Invisibly Lyme Montana (either message me there, leave it as a post to the page, or find a thread with this post to comment on—in any of those instances, I will post your comment under your first name and last initial).

Have a tissue ready and remember that these all represent lives that have been abruptly halted and changed forever.  If you are a patient active in Lyme communities and support groups, you know already what your fellow sufferers have endured, and how common these scenarios are.  If you are a patient that is not yet active, this may help you see the value in becoming active.  We are largely telling each other’s stories within are own—illustrating how needless much of our suffering is, and how enormous is the need for change.

Please read the comments posted in the comments section below, and also these comments received so far via other means (facebook, private message, etc.):

From Katie W. in Georgia (Oct. 4, 2014):

I was fairly lucky I guess… Began feeling tired in early August of 2000. Doctor thought I had mono due to fatigue and swollen lymph nodes. Came back negative and he was stumped. Sent another blood test to CDC in GA. I was already away at college for my sophomore year and had to come home to get antibiotics… Pretty sure I was only on antibiotics for 7-10 days. Never had a rash, but never found a tick either….

That’s why I think I have chronic Lyme… Too short on antibiotics….

From Julie S.(Oct. 4, 2014):

Went undiagnosed for eight years in that time they acted like i was looking for pain meds. Then was told it was in my head. Also fibroid myalgia and MS. Finally diagnosed with lyme. Had to fight just to prove that i had it. And no i did not get rash either

From Alex L. (Oct. 4, 2014):

I’m still misdiagnosed despite having both Canadian and IGeneX positive labs and plenty of symptoms to warrant a clinical dx. My “favorite” dx: psychosomatic disorder aka “it’s all in your head, go home, have a glass of wine, be happy”

From Becky L.(Oct. 4, 2014):

My family doctor told me it was anxiety. I ditched her after leaving in tears. Found a LLMD and was dx’d on the spot clinically and later through Igenex.

From Lena M. (Oct. 4, 2014):

My daughter did not have the bullseye rash. Words like fibromyalgia, severe anxiety, major depressive disorder and bipolar disorder have been batted around, and those probably would have stuck if I hadn’t had a friend whose daughter has Lyme who encouraged me to have her tested. No CDC or IGenex positive results but had enough +’s and indeterminates on her IGenex that if one indeterminate had been positive she would have been considered positive for Lyme. She has all the classic symptoms of Lyme, Babesia and Bartonella.

From Jennifer G.(Oct. 4, 2014):

I, too, was fairly lucky as well. I first found a tick on me after an appointment with my client; I was a Mental health counselor such was why my boys and I moved from CA to VA (Eastern Shores) in March 2012. That first summer was when I started getting worse, especially serve leg pain. So, I went to my doctor and she did a blood test. It came back positive for Lyme Disease. But, it took so long to get on the right medication. I continued working (I needed the money to provide for my boys & have a place to live, food, etc). In Feb 2013, I was lying in bed and I started shaking really bad & it wasn’t stopping, so I called 911. The paramedics came and tried to move my legs and they were numb! She let go and they fell right over with no way I had control over them. At that time a previous bf was there to carry me downstairs onto the stretcher. And I am a big girl, 6’2″. When I arrived at the ER, the doctor was horrific! He told me it was all in my head! I wouldn’t leave without my nerve specialist saw me. The only thing that they attempted to find was my potassium was low which was a lame excuse for why my legs were numb! It felt like I had an epidural; I had 3 with 2 births so I know what they feel like. I had to put on FMLA until August because I was also having severe stomach pain. I couldn’t stand up straight for several months due to the pain. Unfortunately, I had to go back to work because I didn’t get pain for most of the time off so I was severely struggling financially. But, after a few weeks, I just couldn’t work anymore. So, I thought at that time, to move back to CA due to my health and to have “family support” (I didn’t have support except from my mom). In order to have gas money, I had to sell 95% of our stuff except what could fit in my car. It was extremely hard moving things due to the severe pain but I had to fight through it to get done & moved out of our home within a few days. Praise God that we sold everything except a few things that went to Goodwill. We headed out driving across the U.S. In severe pain. By the time we made it to CA, I was beyond exhausted and the drama didn’t stop due to unsupportive, no sympathy or support from “family.” I put quotes there because I don’t have family in my life except my mom. I now have really good doctors looking after me, but I FINALLY was approved for disability after a 2 years fight with 2 denials, which was ridiculous because the judge told he it was due to my age (I’m now 37). But what is ridiculous, my mom’s friend broke her arm & she was immediately put on disability. A friend of mine almost died in the hospital due to liver failer, he healed up just fine but he was immediately put on disability. I think the system is so messed up for applying for disability! I have records & documents of proof of my serve pain. I’m just thankful to God for bringing me through because I was ready to give up (living). But, my boys, church counselor, & small group had a HUGE impact on that decision. I wish you the best of luck! I will definitely pray for you. God bless you. Loving You

Jeannine B. (Jan. 22, 2015):

Never knew of a bite but had symptoms for years. Once I started looking for answers, it took over 5 years for a diagnosis. In and out of treatment since 2005

Ali S. (Jan. 22, 2015):

In 2000 I did not see the tick that bit me, but I clearly had a bulls eye rash. I was 8 years old and I was tested the same day I was bitten and it came back negative. My pediatrician treated me with 100mg doxy once daily for 7 days. As fas as any doctor for the next 13 years was concerned, I was lyme free. I spent that time in and out of hospitals, and specialist’s offices- all laughed at me and suggested psychiatric help. I thought I was going insane until a good friend of mine (with lyme) suggested I see a LLMD. I did and was a strong positive for Lyme and bartonella. I have been on antibiotics for over a year and a half and anytime I see any other doctor (even my gynecologist) they tell me to stop seeing my LLMD because with that many antibiotics I MUST be “cured” by now. My LLMD saved my life. I trust him with all if my being

Amanda S. (Jan. 22, 2015):

2009, got a tick bite, had a fever, migraine, and vomiting a few days later. Got a rash a few weeks later. Went to doc for the rash. He diagnosed it as ringworm and gave me cream, when rash didn’t clear, I gave up on it. Developed fainting and fast heart rate within a few months. Saw several cardiologists and my pcp all who said I needed an EP study. Electrophysiologist said I had SVT and did a cryo ablation. The story goes on and on… Point is I diagnosed myself and got the igenex which came back positive. I wasted thousands and thousands of dollars, years of suffering, and my daughter’s health will forever be impacted too. Thanks doctors for your ignorance! I’m screwed:( 

Betsy C. (Jan. 22, 2015):

Diagnosis was delayed. Never knew of a bite but have had various syptoms for at least 7 years. Had many negative ELISA tests (kept asking my PCP for Lyme tests because we have dealt with this beast in our family since the early 1990s). After every (false) negative test I was told I didn’t have Lyme. Finally, last fall, I demanded a western blot and that came back CDC positive. Was put on 100 mg. doxycycline twice a day for a month. So now I’m undertreated.

Dana A. (Jan. 22, 2015):

Tick bite infected 2011 Doxy 21 days got 80% better. Tick bite infected 2013 21 days doxy got half better. since then down hill to 20% of original

Julie C. (Jan. 22, 2015):

My diagnosis began with strange symptoms- numbness and tingling and pain in my right foot/toes. Then I had weird tingling and numbness on the right side of my body. It took almost two years to receive a Lyme diagnosis via Igenex testing and I saw almost 20 doctors

Robin J. (Jan. 22, 2015): Diagnosis delayed

Cheryll S. (Jan. 22, 2015):

Don’t recall a tick bite or bull’s eye rash, but went through 18 years of periodic bouts of debilitating vertigo before one year of extended severe stress causing not only the vertigo symptom to become more frequent and severe, but also brought out additional symptoms such as fatigue, tinnitus, migrating joint and muscle pain, and cognitive/neurological issues (memory and attention problems, difficulty learning new things, problems reading, etc.). Initial ELISA test came back negative – was diagnosed with Ménière’s Disease and put through vestibular therapy, which did not help. After 19 years, a Western Blot came back positive for Lyme (chronic) – also diagnosed with Bartonella and Babesia. Put on 8 weeks of Doxy, followed by a pulsing protocol of Omnicef, amoxicillin, and Flagyl, followed 5 months later with an herbal protocol. Symptoms improved and I was able to start a new job. Two months later symptoms started getting worse and continued to get worse for another 18 months until I was finally diagnosed with mycotoxin illness due to exposure to black mold in my workplace. My Lyme treatment was rendered ineffective during that time of exposure, advancing my Lyme & Co. I am now back on disability, trying to clear the mycotoxin illness before starting Lyme treatment again. Dealing with extreme fatigue, bad joint and muscle pain in my arms, and worsened neurological issues. Looking at IV antibiotics next.

Ginny D. (Jan. 22, 2015):

I had symptoms since I was 15… Migraines and clenching teeth at night. Insomnia and fatigue after first child born that I never got over. Three miscarriages. Daughter born, and my symptoms raged out of control. Finally diagnosed when she was 4 because my elbow and knee blew up so much so I could bend my arm or walk. Hadn’t slept more than 2-3 hrs a night for two years. 3 years on antibiotics. Turned away by top infectious disease doctor after one year of treatment bc “there’s no such thing as long term lyme” even though he admitted I was sicker than ever. Apologized and sent me on my way.

Laurie T. (Jan. 22, 2015):

I was diagnosed with MS first. It was not until we found a bullseye in my hair that they realized it was Lyme.

Andria J. (Jan. 22, 2015): 

Undiagnosed for 30+ years. I’d say that was delayed.

Lee S. (Jan. 22, 2015): 

Over the last five years I received many tick bites I got a round rash each time. I got sick each time but recovered. I never recovered fully though each time. The rash did not resemble the bulls eye it more resembled cirrhosis. I still wasn’t sure my doctor was right until I came on here and people sent me a picture of what their rash looked like and it was exactly like mine it was about three inches in diameter and looked a little like cirrhosis. Sometimes it would be a little oblong shaped. I went the whole five years with doctors telling me that is was stress and allergies. the last time I got bite must have been too much for my body to handle. I got bit four times in one day and I got three round cirrhosis like rashes and a few days later I got really sick. I did not realize they were ticks that were biting me though because all I ever seen was pictures of dog ticks. I thought all ticks looked like that. I thought the little black bugs that were biting me were some kind of mite or spider. Again after I went to a new doctor and she said I had lyme I came here ask about ticks on and some members sent me pictures of deer ticks and I couldn’t believe it they were the bugs that had been biting me. I still never see pictures of deer ticks on a lot of sites that talk about Lyme they always have an image of a dog tick. I no longer even look at those sites because if I see that it lets me know that they don’t know what they are talking about.

Laura H. (Jan. 22, 2015): 

First dx was MS, while following Dr. orders of steroids and imunosuppressants for 3 years I ended up in a wheelchair. I then sought the ideas of a NP and found out I had Lyme.

Teresa M. (Jan. 22, 2015): 

I was bit by ticks several times growing up in the 70’s and had never heard of Lyme back then. Some were in my scalp or lower body and I have no idea if I had a bulls eye rash. I don’t remember if I ever got sick. I was raised in a rural farming area where everything we had was non processed and organic. We either grew, raised or had neighbors that we got most all of our produce, fruit, meat, eggs and dairy from. I think this is what kept my immune system healthy and the Lyme in remission until I got sick 5 yrs ago and was diagnosed MS. I was put on the same immunosuppressant drugs and IV steroids as others have mentioned here and kept getting sicker. I had 3 negative Lyme tests but ordered my own IgeneX kit and was positive about one year ago

Laurie B. (Jan. 22, 2015):

I got sick in 1984 with a high fever, severe bone-breaking body aches, vertigo, nausea, and an itchy red round rash on my left thigh. It was not a bull’s-eye, by the way. I was 28 and so healthy I didn’t even have a doctor. My mom called around and got one to make a house call. He diagnosed Lyme, all right (I live in southeast CT) but he prescribed 7 days of Doxycycline. I threw up the first two pills so I got 6 days. Sure, I felt better…for awhile. And then began the nightmare. I’m now on disability for chronic Lyme…and decades of my life, wasted and gone.

Crystal D. (Jan. 22, 2015):

Diagnosed 2 years ago, Doctor figures I’ve been infected 15-20 years. Was on IV antibiotics daily for 7 months until my liver was affected badly. Now am going the Naturopathic route. Sad thing is I was searching for a diagnosis all those years and was told everything from virus to Lupus(then not Lupus), arthritis, anxiety, “it’s all in your head”, non-epileptic seizures…..the list goes on. If they had just tested me all those years ago, I wouldn’t be in the Chronic stage with neurological issues. I too am on disability.

Pam P. (Jan. 22, 2015):

I WAS NOT DIAGNOSED CORRECTLY FOR 50 YEARS.

Jan S. (Jan. 22, 2015):

No one would test me for years. Finally went to a very expensive clinic that did not take insurance. By that time I had Lyme, Babesia, Bartonella, Ehrlichia, 5 opportunistic infections, Hashimoto’s, a clotting disorder, and adrenal insufficiency. Am permanently disabled now.

Peg B. (Jan. 22, 2015):

I was diagnosed with PTSD and CFS after the first year of intensive study at a teaching hospital. All symptoms presented were fixable if I would just go to therapy. I have been ill with this for 50 years, became completely disabled in 2004.

Linda H. (Jan. 22, 2015):

I was diagnosed with MS in late 2000, but in June 2005 I was diagnosed with Lyme. I knew I had Lyme by 2003 but all of my tests were negative until 2005. I knew I did not have MS as I only had 4 symptoms verses 123 symptoms of Lyme. When I was diagnosed with Lyme in June I was also diagnosed with Melanoma the same week.

Katie E. (Jan. 22, 2015):

I was diagnosed with CFS, fibromyalgia, RA, dermatomyositis, scleroderma, anxiety, depression (I refused antidepressants every time they insisted) partial seizure disorder, dysautonomia, POTS, heart murmur, hypochondria, IBS, gastritis, colitis, gerd. My immune system was always compromised and I never knew why I had a chronic infection in my body in any given organ and why I’d turn septic when having routine surgery. My Lyme went undiagnosed for at least 27 years. Maybe longer. I was definitely bitten 27 years ago and that’s when the symptoms kicked in. But I was symptomatic since age 8 or so but I may have been born with autoimmune problems. Not sure though. I saw hundreds if drs. Never did one ever suggest Lyme. If I mentioned the Lyme word they immediately dismiss it.

Angela D. (me) (Jan. 22, 2015): 

I cry when I think of the five years I’ve lost smack in the middle of my kids’ childhoods. That feels like an eternity in childhood years. Losing my career has been devestating, but it is nothing compared to the chunk of their lives….I can’t even type the rest of the thought, I get so upset…

Linda L. (Jan. 22, 2015): Delayed

Julie C. (Jan. 22, 2015): 

Angela, me too! My symptoms began when my youngest was six months and my oldest was 3. I also was exposed to toxic mold and it’s been a frustrating battle to determine what is mold related and what is Lyme related

Elsie G. (Jan. 22, 2015): 

I got a rash in 1976 and no one knew what it was. I was diagnosed with Chronic Lyme Disease last year. I had to use a naturopath to send my bloodwork to IGenex since many of the doctors around here still think Fibro is a crock. If I say Lyme, everybody will think I’ve lost my mind.

Roxy M. (Jan. 22, 2015): Both

Shay F. (Jan. 22, 2015):

I was bite by a deer tick May 2013 (due to my job I was responding to an injured deer call). I went to my network doctor sick with flu symptoms 3 days after removing the tick. I was told it was a flu virus and ride it out. I did explain about the tick but was sent on my way. Within a week , I had the bullseye rash while again at the doctor. 13 doctors later in my network all refusing to test, dignose or treat for the tick bite. I was dignosed CFS, Fibromyalgia, Migraines, Celiac disease, IBS, allergies, platelet clotting disorder, and the list goes on…I was told over and over again Lyme Disease doesn’t exist in Texas. I was finally tested with the Elisa test, it came back negative. I was literally fading away. ..I lost over 50lbs that I couldn’t afford to lose. I couldn’t eat solid food with out vomiting. My final straw was completely forgetting when my home was as I was driving home from work. I sat in a parking lot crying because I couldn’t remember where I lived. It finally dawned on me to look at my Drivers license and to put the address in my phone. That scared me enough to quit trusting in the network and to get help. I went out of network was diagnosed by a LLMD using the Igenix and CD57 (was 32) with Lyme Disease, Bartonella and Babesia. I’m deficient IgA, deficient IgG and low IgM so I have no immune response = no immune system. I also lost my gallbladder due it turning septic due to all the toxins in my system. I’ve been in treatment for 5 months and I’m finally making progress. I am getting some of my life back!

Heidi-Lyn L. (Jan. 23, 2015):

Was told stress and eczema or that I was fine by several doctors despite having a list of 75 bizarre symptoms matching Lyme that is experience over several months.

Carole H. (Jan. 23, 2015):

We went through years of chasing symptoms. Even had positive Lyme test only to be told no way it could be Lyme

Audrey W. (Jan. 23, 2015):

Misdiagnosed with chronic fatigue and fibromyalgia for 15 years. Got diagnosed after pushing for answers after being hospitalized with endocrine and adrenal system failure

Wendy D. (Jan. 23, 2015):

Never saw a tick bite but after a severe illness i had constant waking though the night, fatigue, body pain/inflammation, heart murmur, etc for 25+ yrs, 4 sleep studies, echocardiograms, 100 thyroid tests seems like and 20+ doctors, finally met a doc that even thought to test me for Lyme! Previously told Fibromyalgia. Treated off and on for Lyme 3-4 yrs now. I get somewhat better for a while, and then downhill again. Now have leg pain most all the time, myasthenia gravis, immune deficiency that i get IVIG every 2 weeks for and have had c.pneumoniae and currently a persistant bladder infection. the list goes on and on and don’t know where it ends. it’s one thing after another. Am still working, but barely making it and think about going out on disability or retiring EVERY day!

Amy H(Jan. 23, 2015):

I had been sick most of childhood with asthma and allergies spending weeks at a time in hospitals on IV antibiotics…. My mom says she remembers a bullseye rash on me around the age of 8 but they dismissed it. I had knee surgery by the time I was 17… pain in shoulders but nothing too bad. Another knee surgery by the time I was 24… I slowly had began to “fall apart.” Always sick, always at the doctor. Allergies, anxiety, depression, gall bladder, meinere’s disease, IBS, and so on. I passed out about 5 years ago twice and was finally hospitalized for a week of testing (my husband said if they didn’t keep me he was punching someone in the face lol). They put me on a week of IV antibiotics just because and I felt great for about 8 months again…then sick so they said maybe I was allergic to gluten. Every time I would go gluten free I would get sick. (Probably because it was killing the disease). Anyway last year I started getting neuro symptoms. Heart issues as well. I woke up and the one side of my face wouldn’t move and the other was just ticking. Went to ER and they actually tested. I have been on and. Off antibiotics (doxy, mino, rifampin, biaxin and augmentin) but have horrible side effects with my heart so it’s been tricky. I had been on for about a year and a half. See lyme doc Saturday and probably taking fmla as I can’t work now either due to pain in my spine. I can’t drive, tie my shoes or do my hair….

Belinda M. (Jan. 23, 2015):
25 years of misdiagnosis and refusals to even test me for LYME.

Benjamin R. (Jan. 23, 2015):

Got Lyme first at 19, with a full flu, and it was correctly diagnosed. Got it again at 25 with arthritic pains and nerve pains, diagnosed as fibromyalgia. Then diagnosed as Ankylosing Spondylitis.

Brenda L. (Jan. 23, 2015): {delayed}

Jackie (Jan. 23, 2015):

I was diagnosed with Bartonella when I was 2. They didn’t treat it back then. They think I had lyme at the same time. No one could explain why I was sick so often my whole life. When I was 22 I was diagnosed with Non-Hodgkins Lymphoma. My lymphoma symptoms came back when I was 25. I was diagnosed with Lyme, Bartonella, and Babesia. They now think the lymphoma was a misdiagnosis and I went through months of chemo for no reason.

Teresa C. (Jan. 23, 2015):

My diagnosis has been delayed and wrong, like millions of others. Unfortunately, I never had any initial treatment. At the time that I got very ill 21 years ago, I lived in the hearts of all this madness, NEW JERSEY.

DiveGirl Deb (Jan. 23, 2015):

Undiagnosed for 7 years, misdiagnosed Fibromyalgia for 23-years, along the way we added CFS, intractable pain and more. Finally properly diagnosed April 2014 after 30-years! NO tick bite in my history. I’m very likely a congential patient. I’ve also got Babesia the West Coast version.   [And an informative addendum I hope she’s OK with me including….] Babesiosis is caused by an intraerythrocytic parasite, Babesia which is similar in effect to Plasmodium falciparum, the causative agent of malaria.36,43 At present, four main species of Babesia are known to infect human. They are Babesia microti, B. divergens,Babesia-MO1 and B.-duncani (WA-1). B. microti was thought to be present in NE Coastal regions of the US, but recently cases have been reported from Switzerland too. B. divergens is found in Europe. Babesia- MOI, which is very closely related to B. divergens, is found in Missouri, US. Several cases of B. duncani have been reported from the West Coastal regions of the US.The intermediate host for B. microti and WA1 is the same tick that transmits B. burgdorferi, the causative agent of Lyme disease. Symptoms of Babesiosis are similar to those of Lyme disease: fatigue, malaise, myalgia, arthralgia, chills, and fever. The disease is particularly life threatening in splenectomized patients. There are several diagnostic tests for Babesiosis.

Moira M. (Jan. 23, 2015):

(For my children)-Dan M and Heather D-wrong and delayed. 10+ years now for him and 5+ for her.

Christine G. (Jan. 23, 2015):
Diagnose was delayed. I don’t know why so many physicians fail to place a person on meds when I found the engorged tick on me after 3 it had been on me for 3 days! Insane

Jennifer S. (Jan. 23, 2015):

I had mono in 1987 as a kid- never the same afterwards- started doctor hopping that same year and had many many tests including Lyme (traditional lab testing not specialized lab). For 25 YEARS I doctor hopped with same symptoms and had same tests and each time a new DX -CFS, EBV, fibromyalgia, lupus, rheumatoid arthritis., sjogrens disease …. My second son started showing Lyme like symptoms when he was 5 and his PEDIATRICIAN ordered him AND me Lyme testing thru igenex- finally an answer- blew up the +++ with 3s and 4s… Too little too late for much hope though- and 5 years if treatments for kiddo with improvement but no resolution.

Stephanie A. (Jan. 23, 2015):

Diagnosis delayed by 9 years. Never saw a tick or the “classic” bullseye rash. Kept getting false negatives on the ELISA titer. Was told I had an unknown virus and Epstein Barr which meant I’d have chronic mono symptoms for life. At 25 I had to stop working and apply for SSDI. I couldn’t think, had aphasia,was bed bound and if I did go out I was in a wheelchair. Doc finally did a western blot and it was positive. I’ve done 6 months of oral doxycycline and 10 months of IV rocephine, antivirals and tygacil (those are probably spelled wrong and there were other meds too but I can’t remember what they were) along with oral meds. I was told that I have advanced neurological lyme (the most advanced stage), that I was going to be sickly, continue to get worse and the Lyme will kill me. I refuse to accept that. Right now I’m looking for a new doc to work with (I live in Sarasota, FL. If you know of a dr in my general area pls pm me). I’ve seen long term abx work (like two years of abx) and I’m tired of being held hostage by this. The periods of remission keep getting shorter and shorter and the relapses longer and longer. I have no real life. No social events, few friends and a lot of time in bed because I’m just too sick to do anything. I get daily severe headaches and migraines. My hair is falling out and is 1/3 as thick as it was. I work hard to make it look like I still have a full head of hair. I’m in so much pain that walking around the apartment is hard. I fall on a regular basis because I have balance issues. I almost died three weeks ago because of complications from a migraine and lyme. This is killing me and it seems that nobody cares how bad lyme can get and nobody is willing to take the steps to make more accurate tests and treatments. I got married a year ago and my husband spends a significant amount of time taking care of me, working and keeping the apartment somewhat organized. He’s my hero. 16 years of my life have been ripped away from me. I’ve missed out on so much. I will never have kids because I don’t want to pass it on. I worry that my husband might get it as an STI. Lyme has affected every system in my body. I try to stay positive and am hoping that more IV treatment will make a difference and I’ll be my real self again.

Dawn S. (Jan. 24, 2015):

I was diagnosed right away put on tetracycline for 2 weeks. I was ok for years, thought I was cured. Then I had a time of extreme stress in my life and whammo I started getting sick and lots of pain. I had no idea what it was. I went about 5 years before a dr suggested I get tested of course it was positive. (However, I lived in Lyme conn. And his was in 1985 when the disease was not heard of that much). I was treated again for about 6 years and currently showing not active.

Lee S. (Mar. 17, 2015):

I was told for the last five years that it was stress or my age even though not a month before the symptoms started I out worked to people in their twenties and had no signs of bad health. I didn’t get treated until I found a doctor who figured it out right away.

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24 comments on “Long-Term Lyme: Were You Diagnosed With Lyme Disease First, or Something Else?

  1. Sinus infection, CFIDS, Fibromyalgia, Hypermobility Syndrome then as go sicker told could find nothing wrong with me and said depression, needed antidepressants…didn’t take them , became bedridden and had neurological involvement, hyperascusis, photosensitivity, cognitive problems, peripheral neuropathy…found integrative MD, tested positive for Lyme

    Liked by 1 person

  2. From John P.:
    Misdiagnosed or undiagnosed with many other possibilities ruled out for 5 years. I had suggested Lyme from the beginning, was either told no or two times at least had a blood test that unfortunately were negative so again told no Lyme, not sure what you have, probably CFS or fibromyalgia. I kept pushing the issue and finally had a urine test PCR DNA that was positive.

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  3. From Teri B.:
    Went through many rotten ass clown doctors for three years. Was told it was MS, fibromyalgia or “all in my head”. Finally found a doc in Sacramento who tested for a lot of infections–which I had in abundance. ( but not Lyme–I already had a negative Elisa so he said the abx would also cover for Lyme. He was right but it took 3 concurrent abx taken for years) I’m good now but must watch for any infection and keep my immune system supported.

    Had testing through Igenex in 2011 and it was Lyme, Bartonella,etc.

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  4. From Sandra V.:
    I know I have L but have wrongly being diagnosed from yupply flu to fibromialgia and from there to MS after they spotted white lessions on my MRI.26 years on end.And a tick had bitten me in 1988.They onlydid the South African test on me!that was it.every dr told me that in South Africa you dont get Lyme.But here are hundreds of people who have Lyme

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  5. From BossyOldLady via Twitter:
    CFIDS, fibromyalgia, hypermobility syndrome, then told depression, all in my head till bedridden/neuro Sx

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  6. From Janet M.:
    in 1994 I removed 4 deer ticks after walking through some tall grass, and a month later I came down with a horrible flu like illness, but it was worse than any flu I’ve ever had. I lost 20 lbs in four days. I called the hospital twice, and saw the doctor three times over the course of ten months before I was diagnosed. All the while I asked “could this be lyme disease?” everyone poo poo’d the idea. It was not until the test came back positive 10 months into the infection, that I was taken seriously. Since then I have been much more pro active. If I develop symptoms after a tick bite I insist on being treated, and viola, I promptly get better. Out of 5 cases of lyme, (and two more for my husband and son), the ONLY time a doctor would have correctly diagnosed lyme disease is when a rash was involved. Otherwise they are very likely to miss it.

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  7. Yes, it took well over a year. They couldn’t figure out what was wrong with me. Then, tested CDC positive. Treated for 28 days oral abx. Tested positive again. IgG. Then, treated with a month of IV abx. Tests came back negative for IgG and IgM. Told I was cured or never had it to begin with. Symptoms progressed to neuro mostly, including severe balance problems, small fiber neuropothy, brain lesions, memory issues, fatigue, eye problems, migraines, total loss of ability to walk for short periods and seizures. They thought MS possibly, but those tests came back negative. 5 years later, I was treated with steroids for something and my lyme and co’s are worse than ever. Cured??? HA! What a joke.

    Liked by 1 person

  8. From Jeanne B.:
    My husband had peripheral neuropathy, MS and ALS as diagnoses before a new primary tested him for lyme

    Like

  9. From Elsie G.:
    Got a bullseye rash in 1976, doc didn’t know what it was, guessed ringworm, went to my cat’s vet, he checked both of us …not ringworm… but what was it? No one knew. Fibro hit in 2001 after diagnoses of chronic headache syndrome, ulcers, GERD, IBS, Raynauds, sinusitis, fibrocystic breasts, fibroids in uterus. I was put through so much testing, trying to find out why I was falling apart. I guessed Lyme and tried to get tested in 2006. Gave up until Pampe talked me into it. The sad part is that I think my cat carried the tick into the house. I got sick, she got sick, she died, I’m still here. I think of Michael Clark Duncan from Green Mile saying, “this place kills you with what you love”. I loved that cat and, if they’re right about Lyme being congenital and sexually transmitted, I’ve infected my husband and would have infected my children.

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  10. From Angelina A.:
    First thing Generalized Anxiety Disorder and Panic Disorder.

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  11. From Lulla M.:
    Constantly misdiagnosed for 21 yrs until a few months ago when I started testing for Lyme and co infections, I’m now in week three of treatment, felt amazing until the dose doubled now Im a mess again, although I always am leading up to a full moon…

    Like

  12. From Katie E.:
    I’ve been misdiagnosed my whole life. I probably have had Lyme since I’m a child. I’m 49. Just sent to LLMD the other day. Horrible experience

    Like

  13. From Pam P. in MONTANA:
    My story: MS, RA, Lupus, Fibro…it was Lyme all along…..50 years worth

    Like

  14. Mostly fibromyalgia and CFS/ME. But I was also tested for or suspected of having Sjogren’s syndrome, acromegaly, undifferentiated connective tissue disorder, Ehlers-Danlos syndrome, lupus, hemochromatosis, and my very favorite, “an autoimmune illness that only you have.” I live in one of the most endemic states in the country; it shouldn’t have been that hard.

    Like

    • That is definitely a first…I’ve never heard “an autoimmune illness that only you have.”

      Although Montana has it’s own “lyme-like illness from a related tick”. (But apparently no further information, investigation, or treatment options are needed.)

      Liked by 1 person

  15. From Elizabeth H.:
    I was diagnosed as being depressed three times years ago. My symptoms were, swollen lymph nodes, low grade fever, sore throat, horrible aches and fatigue, extreme sensitivity to light and sound. All three doctors ignored those symptoms and referred me to therapists. Each therapist told me (and the doc) that I didn’t have anything psychological that would cause those physical symptoms. Of course, the docs didn’t do anything. There was no diagnosis for lyme at that time. I fired them.

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  16. From Carol R. (Canada):
    I’ve been sick for over 8 years, haven’t been able to work since, was eventually diagnosed with fibromyalgia & CFS, was finally diagnosed with Lyme 2 months ago & am waiting for my first appt. to see a LLND, (I’m from Canada)

    Like

  17. I was bitten by hundreds of nymphs in my backyard in N. Carolina. Two week later I was running a fever of 103. Back pain prompted a CT scan and I got diagnosed with “probable lymphoma” and had a series of test to rule out cancer. Despite fevers and an enlarged spleen, an infectious condition was never considered.It took ten years to get diagnosed.

    Liked by 1 person

  18. I started with sun allergy….no explanation….then joint pain on and off….then Bells Palsy….that Dr treated me for Lyme….for 10 days….Steadily went down hill….everyone telling me there was nothing wrong….for 20 years……then I got a smart Dr who insisted on the western blot test even though all the elsa tests came back neg….finally got a positive….he treated me for 4 months…. As soon as I went off abx…bam sick again….then was misdiagnosed for several years til I went to a llmd….still sick….

    Liked by 1 person

  19. My husband was never aware of being bitten, but spent time outdoors and camping most his life. He was never really misdiagnosed, just undiagnosed, with his symptoms being blamed on other seemingly logical things, like the pain meds for his chronic back pain are what’s causing his drenching babesia night-sweats. He was finally tested by a LLMD to rule out Lyme, and of course was positive (IGenix Western blot). He improved over the next 2 years, but the Lyme came back when meds were stopped for 5 mos. He’s been on and off meds ever since then, but has gone increasingly down hill and now has at least 3 autoimmune problems on top of TBDs. Rheumatologists insisted on giving him a mega dose of prednisone, which has done nothing but make everything worse in the long run.

    My son had varied weird symptoms for years, starting with chronic sinus infections, then developed severe allergies. He did have an insect bite w/o a rash that looked like a mosquito bite except that it wouldn’t go away. Eventually we saw what looked like a little blood blister in the middle. In hindsight, I think it was an engorged nymph. It was close to 2 years later before I finally got him tested, and I should have known better (I don’t know why I waited so long!?!) One doc told us it couldn’t be Lyme and the only way to really test for it was a spinal tap (wrong). I opted to not argue with her, accepted the meds for his sinus infection, and got him piggy-backed onto our next visit to my husband’s LLMD. At age 10, he was CDC positive. 5 years later, he’s still fighting the hard fight. He had a good year 2 years ago, and then the doc took him off the meds (to cover her own arse) and he’s never been as good since, 2 LLMDs later.

    Liked by 1 person

  20. It began as what I thought was recurring flu at the beginning of 2013. After a couple months of it was only getting worse and went to the doctor and had it checked out. She ran a complete blood work up, including Lyme Disease, which came back “off the charts” positive. I was told that it is very treatable, 3 weeks of doxy and I would be as good as new. After 3 weeks of doxy, I was NOT as good as new. I went back to her, expecting to get more doxy, or a different antibiotic. Not the case. She could clearly see that was I wasn’t just not better, I was worse. I was told that there is no way Lyme disease can survive 3 weeks of doxy and that I must have something else. I spent the next 9 months watching the bottom drop on my health to the point that I could not get out of bed, talk or even follow a simple conversation. In the meantime, I was tested for everything under the sun. At one point my doctor convinced me and my family that I had Parkinson’s. Like everything else, that came back negative. The only test that ever came back positive was Lyme. Every time I asked my doctor why it couldn’t be Lyme Disease, she would just get hostile. I finally fired her and went to a doctor referred to me by a member of an online Lyme community. He looked at all my medical records and said that I have a textbook case of Lyme Disease. He said that I was diagnosed properly, treated properly, but was not treated long enough. With his help I began what ended up being a 6 month course of antibiotics. That was concluded four months ago. While I am not 100% where I was prior to Lyme disease, I am feeling far better than I was 10 months ago. 2 years from the date of infection, I am happy to be on my way back to good health. I still wonder how it would have went differently if that first doctor had kept an open mind to possibility of a persistent case of Lyme Disease.

    Liked by 1 person

  21. […] entire argument provided, and it is weak at best, negligent and arbitrary at worst.  Doctor and patient accounts are also part of the body of evidence in support of Chronic Lyme, which are appropriate to consider […]

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  22. I have been told for last five years that it was stress or may age. Even though a month before the symptoms started I out worked two twenty year olds and never suffer fromn health problems before that. I did not get treated until I found a doctor that would listen. Because I went so long fighting it I got other infections so I have to fight them to. I am doing better better becaue I did research and learned about naturals.

    Liked by 1 person

  23. […] overview was initially part of another post from September (with patient accounts of long-term Lyme), but there were just too many ideas there to be valuable. […]

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