When The System Works/ Infectious Disease Doctor

I called an Infectious Disease doctor group Friday to look at getting an appointment. The reason being — my cardio electrophysiologist really encouraged me during my last appointment to give the specialty of infectious disease one last shot at identifying the cause of my chronic swollen lymph nodes, fevers, fatigue, and post exertion malaise. Compared to two years ago when I last gave the infectious disease specialty a shot (twice), we have a lot more information on my body showing what is going wrong (whereas before we just had pages of tests saying everything was working great), and two more diagnoses. These symptoms are what started this whole mess and what often cause setbacks, and I still don’t know their cause. It is frustrating, but I have to say, after 6 years, I sort of just have accepted their inevitability and mysteriousness. There’s only one disease I have in mind that hasn’t been tested for, but maybe should have been (Toxoplasmosis).

When you have a mysterious illness such as mine, and you’ve had all the testing I’ve had, most doctors don’t have an infectious disease doctor they are sure would be a good fit off the top of their head. My cardio electrophysiologist won me over when he said, “Look into doctors and find one you think is a good fit.” While there was one center he’d heard good things about for pediatric patients (which I am not), he realized not just any infectious disease doctor is going to do the trick and he was playing to my need to be in control of my health care.

I chose this office because most of the doctors had at least two raving reviews online and it was only 45 minutes away. I figured the reviews give me slightly better odds than going by random. I had a doctor in mind when I called. However, I was told prior to allowing me to make an appointment, they required a referral explaining the situation in order to put me with the doctor best fit for my case. I think this could be a good sign. It’s also a good sign that I’ve spoken with two receptionists there and both were patient and friendly. There is one doctor’s office I go to where I am actually afraid of the receptionist, but I keep going because the doctor is great. I rehearse what I need prior to calling so I don’t mess up and test her patience. I know another patient who goes to this particular doctor who feels the same way. She also admitted to rehearsing prior to calling the office! 😛

This is getting way to long for a simple little story. Sorry guys.

So, back to the point! Late afternoon on Friday, I worked on getting in a word with the cardio electrophysiologist and my general practitioner about needing a referral and where to send it. At one today (Monday), the infectious disease doctor’s office called saying they’d gotten my two referrals and would like me to come in tomorrow! Yes, I have an appointment for tomorrow morning. If you’ve had experience with specialists, you know that is crazy fast to get into one (unless you’re dying). Talk about fast action! You often hear a lot of negatives about dealing with doctor’s office staff… but sometimes, the system works, everyone does what they are supposed to, and they do it quickly. In my case, THREE offices did all of these things.

I’d be surprised if they actually figured out why my lymph nodes swell and I get fevers… I’d actually be shocked…. but I am still hopeful for this final answer.

22 thoughts on “When The System Works/ Infectious Disease Doctor

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  1. I still think you should look into tick borne diseases and for that you need a Lyme disease specialist, infectious disease doctors just don’t understand chronic infectious diseases, it’s bizarre but true! I’m going here next month – http://www.gordonmedical.com/

    I hope the ID doc helps you, but if they don’t, don’t rule out infectious disease, 🙂

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    1. I will mention Lyme and confections tomorrow but I know what you said is true; infectious disease doctors almost always do not understand the treatment of chronic infections like Lyme or infections that weren’t treated right away. Someday, maybe I will finally listen to you (and others) and fork over the money to an LLMD, and you’ll sigh of relief that I finally listened! For some reason, I just don’t think I have it and usually I have a gut feeling (I know that’s not sound logic). If I could find an insurance covered LLMD, I’d be there in a heartbeat. I really do appreciate your persistence — you’ve been patiently after me for about a year and a half!

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      1. I feel the same way about LLMDs and the quest for diagnoses, Jackie! Also the fact that I probably wouldn’t be willing to subject my body to long term antibiotics. One day maybe I’ll go there. Good luck with the ID doc! Please keep us posted.
        Btw, I was watching Monsters Inside Me last night trying to figure out if i could have worms/rabies/some crazy meningitis. My husband insisted on stopping the fun marathon. 🙂

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      2. So, the appointment has gone done. The doctor was caring, empathetic, and seemed like she truly wanted to help. However…. I definitely notice more now that I am educated compared to two years ago how the infectious disease doctor doesn’t really believe in many infectious diseases/viruses/parasites causing problems after the acute stage… I brought up the ideas of chronic EBV or chronic Lyme. She didn’t say it was impossible, but she didn’t jump on the idea of testing. She basically said she hasn’t personally handled (or seen) that in her career and if I decide want a referral to someone who might be better able to help, she’d give me one. Fair enough.

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      3. Definitely go for your instinct! I trust mine a lot. If you say you don’t have Lyme, maybe you don’t, but maybe you have some other chronic infection that a lyme doc will know about, they don’t just treat lyme, they look at all kinds of chronic infection, both viral, bacterial and parasitic. It’s expensive, but then can you put a price on your health? If you get better sooner rather than later, you could work and earn back the money easily… and actually live the life you want while doing it.

        I didn’t know if what I was doing was for the best when I first paid out of pocket for healthcare, but then I started making such huge improvements that I never made with the UK’s normal healthcare system that I knew it was worth it. I think it’s worth a shot. People tend to regret things they don’t do, rather than things they do.

        Thank you for being so patient with me while I nag you to death!

        I still read your blog and like to see how you’re doing. I’m cheering you on from across the pond! 🙂

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        1. I’ve been thinking about that quite a bit — that although I may not have Lyme, and LLMD would be better equipped than the doctors I’ve seen to identify any “bugs” hiding out in my body. I remember how when you went to that German clinic, they did more than test for Lyme and co-infections. Reading that was a bit of an “ah-ha” moment for me.

          You’ll probably get a laugh out of this — At least three doctors have heard, “This woman who I know through my blog, she badgers me about Lyme disease, so I thought I’d ask…..” as way of introduction to the topic!! 🙂

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          1. Hahahahaaha. But yes, unlike other specialists, Lyme doctors aren’t really specialists, a good one will look at your whole body and identify loads of stuff that could be causing problems. Check out Gordon Medical and you’ll see what I mean. There are all kinds of issues that could be holding you back, that are completely under the radar of mainstream doctors.

            Anyway, good luck in your treatments and stuff at the moment. I’m on the big 4 week countdown to going to Gordon Medical myself. I know of someone who got completely better there and 2 others on the road to recovery. They’re properly complex cases, like me, so fingers crossed!

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            1. I will be keeping my fingers crossed for you!! Have you ever been to California?

              I’ve been to an integrative medicine doctor and we did the wholistic view of my body where we tested every hormone, vitamin, nutrient, neurotransmitter, gut bacteria, food intolerance, etc. and the information I learned was helpful for learning how to support my body and allow it to try and heal…. she just failed at thinking to test me for chronic virus/parasite/whatever. Fail!

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  2. my husband needed one of these specialists and now 10 yrs later he is still the best thing that ever happened to us. please don’t give up hope, hope is not always static, it changes with us and our needs. looking forward to hearing how it all goes:)

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    1. Aww thank you for this! I will update whenever I know anything. I’m thinking my cardio electrophysiologist is a huge, ginormous blessing for encouraging me to continue to search for answers even though they’re hard to find.

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    1. I can’t wait either. I don’t expect answers, but answers are of course more than welcome after 6 years of fevers and throat pain.

      I’m thankful for my cardio electrophysiologist for giving me the push. So many POTS specialists had no clue and, although they cared, they didn’t push me beyond saying “Have you seen an infectious disease doctor?” and then leaving it alone when I said yes.

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  3. Hoping you get to the bottom of things soon. The ID doc that treated me for my Lyme didn’t test me for any co-infections. He felt it wasn’t needed. I beg to differ, but have still not found a way to convince him (even though I’m still ill). I’m tired of being brushed off by some of my doctors to continue the search for a cause versus just trying to medicate me to treat the symptoms. All we can do is stay positive and keep pushing until we get the answers we deserve!

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  4. Hey thanks for your comments / advice. Work got crazy busy and this food detox kicked my butt, but I will get back to writing soon. I’m also looking forward to reading your blog…looks very interesting! Thanks again.

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