Up until now it’s been all about me and my #$%@ chronic illness. That wasn’t so bad, for me. Far tougher is the realization that someone you love — someone who’s been the rock of your existence — may not be so invincible after all. Although nothing truly catastrophic has happened, a little piece of my heart is breaking…
It happened while we were in Germany. My husband came home one day saying he thought he’d caught a “summer flu” and laid down. For the next few days, he felt feverish on and off, and simply exhausted. After we flew home, he kept complaining of “the worst case of jet lag ever.” He just couldn’t get his energy back. Then one morning, our six-year-old noticed a big red circle on his back.
Later that day, he felt poorly enough to see a doctor, who prescribed a run-of-the-mill antibiotic for his “infection.” The red spot grew larger.
Luckily, my brother-in-law is a physician in Germany, and after hearing about the symptoms, suggested we might be facing a case of Lyme disease. What the heck? That thing you get from ticks? We read up on it, and were not happy. Chronic fatigue, headaches, sleep disturbances, neurological and muscle joint troubles were on the list, along with long-term autoimmunity effects. But we were also told that early treatment with strong antibiotic called Doxycycline for three weeks could essentially cure the thing. Whew!
With some convincing of the local doctor, my husband scored a prescription. He started on those pills, and felt a lot better at first. He continued to recover for two weeks until one night last week, he suddenly felt very feverish and sick. He became so incoherent that I couldn’t get him to sit up. My hands were shaking as I dialed 9-1-1. So energetic. Such an athlete… I always thought he’d end up dialing Emergency for me first!
In the ER, they pumped him full of medications, which made him feel much better. Then the heavily-mascara’d doctor gave him a little lecture about taking his vitamins, and looked up his blood test for Lyme antibodies, which had been taken twelve days before. (No one had bothered to communicate the results to us, btw.)
“Well, the test is negative, so you don’t have Lyme. That’s good news,” she said, as she ushered us out with a few last tips about taking fish oil to stay healthy. If I weren’t so shook up by the whole ambulance scene, I would’ve been furious. We’re the healthiest eaters I know!
The very next morning I embarked on a Holy Internet Mission: I read everything I could find about Lyme, located the premiere specialist in the San Francisco Bay Area — by reading a discussion board from parents at UC Berkeley — and somehow managed to wrangle an appointment for that very same day. The guy was great. He knew everything about the different strains of Lyme bacteria in Europe vs. North America. He knew that this three-week slam routine with Doxycycline was common, but not always effective, and brutal on the stomach. Heck, even the various printed brochures in his waiting room talked all about how common it is to get a “false negative” on the antibody blood test. What the hell was that ER doctor thinking?! The thing about Lyme is, the longer you let it go, the more severe and chronic it gets.
As we walked out of the specialist’s office, both exhausted but hugely relieved, my husband said: “Geez, I saw four doctors in the last few weeks who all told me something different, and not one of them was right. That specialist had great information, he knows everything — it kind of renews my faith in the healthcare system here.”
“Not mine!” I snapped. “Because your Average Joe Patient would never get to that guy. We’re only here because we’re aggressive, we’re educated and we know how to research the heck out of stuff, and because we have the financial resources to pay his $650 fee up front. Most people would be hosed at this point!”
“Yeah, you’re right,” he said, giving me a sideways look that was both contemplative and grateful.
Right now, it’s mostly me who’s grateful, that we were able to pounce on this thing. My guy is now on a treatment track for three full months of dual antibiotics that will probably keep his energy level low for a while. But then we expect a full recovery, according to our expert.
So now we’ve both faced the prospect of a spouse with a chronic illness. Now we’re both ePatients. As noted, it breaks my heart a little, but Thank You, Internet, for helping us along.
NOTE: Ironically, I recalled this morning that this week is national Invisible Illness Awareness Week. And now we have two in the family.
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Glad you found/saw the specialist!
Hope your hubby is much better very soon!!
I’m sorry to hear about your husband. It’s great you had the tenacity to find the best doctor for your husband. Wishing him all the best. Ellen
So sorry to hear about your husband and hope he’s feeling better. It’s a terrible disease but sounds like you caught it early enough to prevent long term complications. Having a house in CT, where Lyme disease, and now two other tick borne diseases are rampant, about 50% of the population gets hit eventually. I’m a weekender and when I got hit, I called my primary care doctor in NYC and he brushed me off. Even though I had classic symptoms, except no bulls eye rash, and I told him emphatically that I thought I had lyme, this stupid ignorant doctor told me, ever so casually – “nah – you don’t, but if I didn’t feel better in three or four days come in to the office and we’ll run a test.” Well, I didn’t wait- I drove up to CT, sick as a dog and went to a local doctor in CT. She engaged immediately- ran tests and at 7AM called my home in CT, my cellphone and finally my home in NYC to tell me I really was sick and needed antibiotics right away. Bless her. But why are doctors, even those in NYC who are so close to areas of epidemic lyme so clueless? It is frightening – especially with T1D to contend with at the same time.
Oh, Amy! That’s dreadful – not just the diagnosis, but all that led up to seeing the specialist, and getting that definitive diagnosis! I hope the treatment course makes all of this a distant memory.
I know there must be good ER docs out there, but I have to say, I’ve lost count of the horror stories I’ve heard about ER physicians. As you mentioned, going to the ER is unnerving enough. No need to add a doctor who doesn’t know how to diagnose or treat a problem.
Amy, I’m sorry to hear about your hubbie getting this. I hope those antibiotics kick in and knock that Lyme disease out of the ballpark.
Oh how terrible. I’m so sorry you both had to go through this. But good for you for doing the research and getting your dear hubby the help that he needed. I hope he is feeling much better soon – and I’ll send good thoughts out to you both.
Sending lots of good wishes to you both.
Yikes Amy. What a nightmare!
I had a similarly faulty and well, not completely catastrophic, but kind of – experience with an ER doctor who didn’t hit the mark with me. My situation was much rarer (a spinal infection), but several weeks after my ER visit, I was hospitalized and in much worse shape than if the ER doc had considered doing some basic things (like blood tests) in the first place. Grrrrr!
As to Lymes, I know people who have had it. Some severely. The good news is that my friend who had it worst, who lives in Seattle and got it in New England (read: her doctors didn’t really know much about it), is now *completely fine.* It was a tough period of living with the uncomfortable, unpleasant symptoms and the antibiotics, but her health eventually returned 100%. She considers herself totally cured. Your husband will spring back in due course.
In the meantime, you can comfort each other, and know you can both handle such things and survive, maybe a little more worn for wear, but maybe a little wise too? Sigh!!!!
Amy, all our good wishes. Probably the hardest part is feeling powerless, but you did the utmost to put the power back in your hands. riva
Lyme is one of those things that worries me occasionally (especially since most renfaire grounds and picnic grounds are rife with insects and arachnids of all sorts), but being allergic to insect bites in general, I tend to have a rough time of it in general… and insect repellents often seem to attract more bites than limit them.
What I don’t know, in that regards, is whether a tick bite would inflame more, or less, than “less insidious” insect and arachnid bites, what the pain parameters would be, and so on… so it’s hard to know when to worry and when to not-worry.
I’m so sorry you had to go through such a traumaztizing experience with your hubby
But I’m glad that he seems to be feeling better and that you were able to see a great specialist. Sending prayers for you both.
Sending best wishes for a speedy recovery.
I hope that all goes well in his recovery and that there are no lasting effects.
So sorry Amy! But I agree with you, if not for your aggressive research and resources, time and otherwise, you’d have been sunk. My best to your “rock”.
Stay persistent!
About ten years ago I contracted Lyme and it took three blood tests before I tested positive. That’s three weeks of IV treatment that the specialist put me on before we received a positive result. If we had waited I would have been sicker so much longer.
Also read the book “Bull’s Eye” if you haven’t already. It’s the BEST book about Lyme that I’ve found. Feel better!
This is Amy’s husband here. Thank you all so much for the get well wishes, here on DiabetesMine and via email. I do feel a lot better, thanks to the right medical care and Amy’s initiative. Cheers!
Best wishes to your husband, Amy. I am glad you finally found some competent medical care.
My goodness Amy! What a mess! I’m glad that he is doing alright. It sounds very frustrating, all the rigamorole you had to go through.
Wow, I’m so glad you were so pro-active. When I got to the part about having a huge red spot on his back I cringed. I had similar but it turned out to be an abscess that required emergency surgery and I’d gone septic (infection in the blood stream). It took over 2yrs to recover from that, so I can fully appreciate all the implications.
I hope his recovery is indeed 100% and thank goodness you pushed to see the right doctor!!
wow, Amy! that is something! so glad you ARE aggressive and getting the correct help. i guess diabetes is the reason we all are so aggressive in researching and asking and writing and demanding and…we have to be!…so, score one for the big D.
As much as you dont want to hear it. There are rules of nature that are hard to stop. The most important being “survival of the fittest.” Nature wants the smartest and most clever to survive to improve the gene pool. Obviously you and your husband are very smart and savvy and quickly learned how to work the system and not give up. Weaker individuals dont care and dont want to learn how to do that. We can help up to a point. Even with Obamacare, there might be a government official that would help a weaker individual to find out who the best dr is, etc. But it’s very time and labor intensive. I would like to see funds going to establish schools and classes where people learn how to navigate the medical world.
[...] Diabetes Mine – Another Diagnosis In The Family Up until now it’s been all about me and my #$%@ chronic illness. That wasn’t so bad, for me. Far tougher is the realization that someone you love — someone who’s been the rock of your existence — may not be so invincible after all. [...]
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I just took my 17 year old son to doctor today, I feel so foolish because I told him it was a heat rash and a pulled muscle. Know it turns out it could be Lyme disease and because of my own ignorance it has been left untreated for almost a month and know he is showing signs of muscle fatigue, back aches and other obvious symptoms according to this website. He was tested for this, but results won’t be back until Monday or Tuesday because of July 4th weekend. i think they should put a rush on it, but to them I am probably just a pain in their side. i am very worried about my son and I feel very guilty for not trusting my instincsts. I didnt want to rack up a huge medical bill when I was having surgery myself July 2nd and would be off work for 2 weeks at least. i thought I was being smart, but in the end I was very dumb and put my son’s life in serious danger!!!!! As a mother, I should have did better by him. I am hoping for the best, but i don’t have a good feeling about the outcome. i am very sorry Kori that I didnt do better by you. I am 90% positive that he has this from all the hours of internet browsing on lyme disease, maybe i shuld tell the doctor to do the same. i wish that i could do more for him, I feel so hopeless and frustrated. Can anybody help us Please. Thanks Kori and Shelly
i had lymes on my back also. your picture looks just like the one that was taken of me. from wisconsin