posted
Hey everyone. I'm pretty certain that I have Lyme Disease, but I'm having trouble getting through to "my doctor" (who I have never actually met, despite having been to her office five times in recent months).
They want to give me antidepressants and benzos and send me on my way as if nothing is wrong, meanwhile I am barely able to walk most days and getting worse!
I live in an endemic area and my profession puts me at higher risk for insect-borne illnesses. I also tend to be careless and not take precautions because I didn't realize how serious a problem Lyme and other tick-related diseases are.
My memory isn't so hot these days but I remember having some funky bug bite looking rashes. Not a week goes by that I don't see a tick either on my body or in my immediate surroundings.
I remember Googling pictures and thinking it couldn't be Lyme because it wasn't a classic bullseye and I didn't have any other symptoms at the time.
At some point after this, I had a "flu" and what I now believe to be a borrelial lymphocytoma in my groin area.
After that, an outbreak of candida under my breast (sorry for the TMI!!)
I sought treatment in early February of this year for panic attacks that initially began in January of 2010 and subsided during my pregnancy with my 3rd child, born on September 15, 2010.
The panic attacks came back in January of this year with a vengeance. Suddenly I became afraid of the dark and existing phobias intensified. I became extremely jumpy and very easily startled.
I was dizzy all the time, had stabbing chest pains, numbness and tingling in my hands and feet. I'd wake up twice every hour and be completely exhausted in the morning like I hadn't even slept.
They put me on Zoloft and lorazepam. The dizziness subsided but none of the other symptoms went away.
I began having severe night sweats. Paranoia set in and I see flashes of light and shadows zipping across my peripheral vision. Sometimes I hear music playing when there is none.
The zoloft gave me horrible GI side effects and completely squashed my libido so I quit taking it.
The lorazepam had no refills and I skipped the one month "follow up" appointment that the doctor had set for me.
Immediately the dizziness returned. It's been so bad that I had to call my husband home from work because I couldn't drive to pick up the kids from school.
About four weeks ago I started having widespread pain and weakness that I attributed to overworking myself in the garden (yay, springtime!).
A week later it had transformed into excruciating joint pain (mainly ankles but also elbows, wrists, jaw).
I started searching the internet for anything that matched my symptoms and kept coming up with Lyme Disease.
One Saturday morning I woke up with severe pain and immobility of my left knee. I had not injured it because I'd been hobbling around on my swollen ankles.
I decided it was time to get some medical attention so I went to the ER. They did xrays, told me I probably had arthritis and prescribed narcotics and NSAIDs.
I asked about Lyme disease and told the doctor I remembered having a bite and some of the other symptoms I was having and he prescribed two weeks worth of doxy, "just in case".
I felt great after taking the hydrocodone (shocking!) the first day, but it was all downhill from there. By the third day I was feeling like death.
I went back to the ER where they did an EKG? to make sure there were no heart problems, then stuck me in the waiting room for over three hours where I began to feel better.
I went home without seeing a doctor or the results of the test. The rest of the week was touch and go with some days being ok and other days being very bad.
I followed up with "my" doctor (read: some intern) the following Monday. They did some blood tests (including a test for Lyme), gave me more antidepressants and lorazepam and sent me on my way with orders to follow up in one month.
The test results came back "normal". I think it notes a slightly elevated wbc count but that's expected when a person is on antibiotics. Lyme test (igG and IgM antibody serum) came back "negative" but from what I've read the antibiotics can register a false positive.
My doctor won't let me schedule an appointment prior to the already scheduled follow up, which is a month away.
I'm out of antibiotics and I don't feel any better. I can't find anything that matches my symptoms quite as perfectly as Lyme (and possibly a coinfection or two).
Does this sound like Lyme to anyone? I'm sure there are sypmtoms I'm having that I have left out (the list is very long and sometimes I feel like my mind is slipping away). I'm not crazy, right?!
Posts: 156 | From Virginia | Registered: May 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
You are not crazy. Your symptoms are consistant with Lyme/coinfections but we cannot diagnose you because we are not doctors.
Correct - a negative test does NOT rule out Lyme.
You should post in Seeking A Doctor to find a Lyme-Literate MD (LLMD) because 2 weeks of Doxy is nowhere near enough to treat Lyme.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Oh, the pain is also in my neck, the base of my skull, my fingers, toes, hips, wrists and lower back.
Sometimes I have trouble findng the right word, writing has become difficult. Typing, too. There's a mental fog that rarely goes away.
I'm overly sensitive, physically and emotionally. Sometimes the lightest touch feels like a red hot poker on my skin.
I'm irritable practically all the time and have crying jags almost daily.
Sometimes my arms and legs feel so heavy like they're made out of lead.
There's probably more but I can't feel my hands to type anymore.
Posts: 156 | From Virginia | Registered: May 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I think you have put the pieces together for yourself already...sounds suspiciously like Lyme and you have tick interaction and rashes to back you up on your thought process.
My suggestion is to post on the thread Seeking a doctor to find a LLMD (Lyme literate doctor).
You are already experiencing the "Lyme runaround" and I don't need to convince you of something you are already aware of...you need a doctor who knows their stuff and can cut to the chase.
Unless you were tested through the lab Igenex, your Lyme test that you have already taken is not a good indicator of Lyme infection or not.
You are not crazy...unfortunately your story is ditto for a great majority of folks on here.
I am glad you found Lymenet...we are all here to help you get better.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Thank you, Razzle. I guess what I'm looking for is some kind of reassurance from someone who has been diagnosed with Lyme who may have gone through a similar series of events but eventually got the treatment they needed.
I have already posted a request for a doctor referral and had a response. I'm going to call first thing Tuesday. Thanks again!
Posts: 156 | From Virginia | Registered: May 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
anonymiss...Lymetoo replied to you on Searching for a doctor thread...do you see a flashing envelope at the top of your screen? She probably sent you a private message.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Thank you, Sue! I am glad I found it, too. There seems to be a lot of conflicting information out there about Lyme disease which is undoubtedly why so many cases go undiagnosed.
Posts: 156 | From Virginia | Registered: May 2011
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posted
definitely sounds eerily similar to the things that plagued me early in Lyme, now after a few months of ABX they are subsiding. I defintely agree you need to get to a LLMD and get a test too. As many stress with lyme time is important, the longer you wait the worse it will get.
Posts: 72 | From chico, ca | Registered: May 2011
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posted
Yes, yes, I found it! Good stuff. I was hoping I wouldn't have to drive so far for a lyme literate doctor but ya gotta do what ya gotta do, right?
I appreciate all the help, I wish our meeting was under happier circumstances =)
Posts: 156 | From Virginia | Registered: May 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Anonymiss,
You're welcome. Yes, there are many with similar stories to yours - tick exposure, doctor run-around, and then finally diagnosis and treatment.
Those who have gotten better usually no longer post here because they've been able to get on with their lives.
But there are some who come to encourage the rest of us who are still on the diagnosis and treatment journey, and these individuals are much appreciated by the rest of us.
You should also know there is an ongoing controversy between the CDC & IDSA vs. the ILADS (see www.ilads.org) over whether or not Lyme can exist as a persistant, chronic infection. This controversy is why we get such a royal run-around from regular doctors about Lyme, even when we do have known tick exposure and obvious Lyme symptoms (such as the bull's eye rash, joint pain, etc.). The controversy has created a situation in which many doctors who do know more about Lyme Disease are persecuted by the Medical Boards and other such "powers that be" just for treating patients adequately according to each patent's need rather than according to the one-size-fits-all methodology of the CDC/IDSA.
In any event, this controversy is why we must seek out Lyme-Literate MD's because otherwise we would likely never get well.
I hope this helps with understanding a little more about the run-around you've been getting.
There also is an excellent movie called, "Under Our Skin" - this movie is available through Amazon.com, Netflix, some public libraries, and also will be shown on some PBS stations. See http://www.underourskin.com/tv for a list of stations and times when the movie will be shown.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
You're story sounds similar to mine. I was given benzos and put on SSRI drugs for my out of control panic attacks and severe anxiety.
The SSRI's....the different ones that I tried...made me crazy. I couldn't tolerate any of them and it made my anxiety 100 times worse. I actually drove to work one day and called out while sitting in my car out front because I was hallucinating. This was from Celexa.
MY PCP insisted I was just under too much stress and that all my symptoms were stress related. My symptoms included.....dizziness, anxiety, panic attacks, intense fear and feelings of impending doom, paranoia, 30 lb weight loss, memory problems, trouble focusing, difficulty swallowing, generalized weakness and feeling like my body weighed a thousand pounds, intermittent chest pains with palpitations, GI issues, seeing black spots in my vision... I think I've covered most of my symptoms.
Anyway, I was at work and got really pale and almost passed out. My coworkers insisted I be seen by the doctor and when put on the monitor I had a pretty fast heart rate, low blood pressure and some of my electrolytes were off. I followed up with my PCP a week later. At this point I had a new symptom....unrelenting fatigue. I just couldn't get out of bed and do anything. It seemed like way too much work.
Now, I live in an endemic area as well and my PCP actually suggested to send off a lyme test. Mind you, I had been in his office for various complaints over the course of the previous 3-4 years. I had been to the cardiologist, had a stress test done....been to the GI doctor and had tests done....had several rounds of blood work done. All came back "normal".
Anyway, at my next follow up....to go over the blood work my doc said the lyme test was negative. But I had my test results prior to seeing hi for the follow up. I had had the test done at Quest and always get my results through an app on my phone. So I researched as best I could the results of my western blot which showed reactive for bands 23IGM and 23IGG.
In my search for answers, I found this board and someone linked me to an excellent explanation of the WB. I tried to discuss my results with my doctor at my visit but he just dismissed my concerns.
Anyway, I found myself an LLMD after posting in Seeking a doctor on here, had my first appointment the first week in April and have been on abx since.
I'm actually feeling better after starting the abx and supplements he put me on. Not back to my old self of course but that is going to take time. the supplements have made a major difference in some of my symptoms. I suggest you get yourself to an LLMD quick!
There are some really wonderful people on this board who know a heck of a lot more about this disease than most of the doctors out there. If I listened to my doc and not those on this board, I would still be going downhill.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I agree with the others that it sounds like you are on the right track to consider tick-borne diseases. Some of your symptoms can be attributed to the co-infection Babesiosis.
If your rash comes back, get photos of it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition.
If you think you may have been infected when you were pregnant, you may want to have your child evaluated. Lyme can be passed through pregnancy and breastfeeding.
I hope you can get answers soon.
Posts: 4681 | Registered: Oct 2000
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