I’m the last person on earth you would expect to get Lyme Disease. I walk the dogs only in my own yard. My idea of a hike is going from the car to the mall entrance. Nonetheless, Lyme, a tick-borne disease, has been plaguing me for 15 years.
I was first diagnosed in 1999, after struggling with knee pain and intense fatigue for quite a while. I went to a million doctors, none of whom even mentioned Lyme. “Oh, you’re stressed out being a single mom, working full time.” I’ve learned this is what docs like to say to women – even women doctors say it!
I mentioned my symptoms to a colleague at work. She recommended her Lyme literate doctor, whom I will call Dr. S. He was very helpful, had me tested by one of the few labs in the country that actually has an accurate Lyme-detecting test, and put me on a lot of antibiotics. I felt better!
But here’s the mean part of Lyme. It hides. Once those little spirochetes realize the antibiotics are attacking, they burrow into muscle so they won’t be killed. So after I felt better and the doc said I could stop taking the antibiotics, the Lyme spirochetes came out again.
A common symptom of Lyme is “brain fog.” It makes you feel as though you are walking through quicksand, struggling to stay upright, and you feel that way both physically and mentally. I had debilitating fatigue and joint pains, but I forgot about the Lyme doc, and went to a rheumatologist. She diagnosed me with rheumatoid arthritis, and gave me medicine. It didn’t help. She finally got disgusted with me and told me I didn’t have rheumatoid arthritis. I flunked out of her specialty, I guess.
I went to a party where that colleague who had first recommended Dr. S. was present. Here’s what Lyme does to one’s mind: we had a lovely reunion (she retired several years earlier because of the effects of Lyme) and started talking about our Lyme experiences. I mentioned my doctor and she said, “Oh, I went to him too! Isn’t he great?” and we both agreed he was. Neither of us remembered our earlier discussion in which she recommended this doctor to me.
Symptoms returned, especially the fatigue. I was napping all weekend. My kids were concerned. I went to a physiatrist, who prescribed aquatherapy (exercising in the pool), which was great for my joints, especially because the pool was heated. But nothing was helping the fatigue.
Then my little Shih Tzu bit my finger. He didn’t mean it, but there was bleeding. I called my internist, who said it could be dangerous. She prescribed an antibiotic to make sure the dog bite didn’t get infected. Once I started taking the antibiotic, I suddenly experienced mental clarity! It was astounding, as though a window had opened. I remembered the previous diagnosis of Lyme, and the amazing Dr. S. I returned to him and started an extended course of antibiotics. The joint pain abated and the fatigue was manageable.
I started reading about Lyme. There’s a cadre of doctors, many of them in New Haven, who vehemently oppose the concept of chronic Lyme. They insist Lyme can be cured with 2 weeks of antibiotics. Former Attorney General, now Senator, Richard Blumenthal investigated the Lyme controversy, heard many speakers (doctors and patients) and discovered there was some sort of financial benefit that these opposing doctors stood to glean if they could discredit chronic Lyme. They were invested in a vaccine of some kind. I’ve never really understood why anyone would care so much if a doctor prescribed antibiotics. However, some doctors have actually been investigated and fined for being Lyme sympathizers. It’s unbelievable – like the Salem witch trials.
I learned that Lyme imitates lots of other conditions. My kids make fun of me, saying that if I have a zit on my chin or a cavity in my tooth, then “It must be Lyme!” But I’m living with it, and I know it’s real. A couple of years ago, I suddenly developed scary high pressure in my eyes, with no family history of glaucoma. I’ve had a chronic cough for over 18 months, and no medical person can figure out why. The joints in my thumbs scream with pain some days, yet other days they are fine. Sometimes I can walk around NYC without a problem, and other times, I can’t even push down on the clutch when I’m driving. Or I’ll take a step, my knee gives out and I end up on the floor. I feel as though bugs are crawling on my legs (they aren’t). All of these are known symptoms of Lyme Disease.
But I AM LUCKY! There are people who are bedridden from Lyme, who have lost their independence, mobility, and mental faculties. Dr. S. has told me about people diagnosed with multiple sclerosis or congestive heart failure, who miraculously recover after a long-term course of antibiotics, because it was actually Lyme Disease causing their problems. So although some days I wake up only to have to crawl back into bed and sleep for 8 or 10 hours, I’m still a functioning human being who can work full time and play with my grandson.
One last thing: 50% of Lyme patients never develop the famous bull’s eye rash. The damn ticks are everywhere and almost impossible to see. Do not let anyone tell you that you don’t feel what you are feeling!
If anyone has chronic symptoms that are making them feel elderly before their time, confused, disorganized, tired beyond belief, or other stuff that no one can explain or fix, I recommend you go to http://ilads.org/ and wander around the site. You will learn a lot, and maybe you will find an answer to why you feel so crummy. This applies to your children, too. Lyme can be devastating to kids.
I would be happy to share what I have learned – just ask me.
CT Working Moms 
I think the reason why it is so controversial amongst doctors is due to the fact that there is no evidence based medicine (i.e. gold standard double blind, placebo controlled trials) supporting the practice of long term antibiotic treatment in lyme disease or with symptoms that aren’t even due to lyme. We are trained to be academic and base our treatments on medicine that is supported by studies. Unfortunately, just because a patient “feels better” on medicine than off is not sufficient, particularly because there is a very well known placebo effect with any treatment (which has been shown in these patients as well-patients who got placebo vs patients who got antibiotics felt the same at the end of the study). Add to that many “lyme literate” doctors do not take insurance and charge significant amounts of money for these treatments (all of which have risks). I agree that there is a lot more research to be done but I am uncomfortable calling everything lyme disease when there are many other conditions that share similar symptoms. I know I’ll probably get a lot of angry responses on this one but just want to share the “other” view.
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I understand your point of view. I truly hope that neither you nor anyone you love and care about gets Lyme. There were times that I would have taken arsenic if I thought it would help. It is very, very debilitating and has affected every aspect of my life, including my career. Antibiotics helped me, and they still do. I notice a difference when I am off them (my doctor has me take them for 3 weeks on, 3 weeks off). But I do appreciate your viewpoint.
I recently went to a new pulmonologist for my never-ending cough (after the old one said, “Tut, tut, it’s not THAT bad”). I had coughed up some pink sputum and that scared the living shit out of me. He said, “Would a CAT scan reassure you?” I said, “Yes, I am all about ruling out scary things.” He said, “My job is to make my patients feel better, and if having a CAT scan alleviates your anxiety about the cause of the cough, I will order it.” I was ECSTATIC to have found a doc who understands that worry & anxiety are all part of the whole medical picture. The happy ending is that the CAT scan was normal, and 18 months of worrying about lung cancer is now behind me. I’m still coughing, but I’m no longer anxious (about that, anyway). Probably the academic medical way of thinking would have scorned him for ordering this test (especially since it involves a lot of radiation) but it meant the world to me and I will forever be grateful. There is more to health than just academic reasoning and double-blind studies. Just my opinion!
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Hi Randy,
I can relate to your story And even more. I’m so sorry to hear Of your pain And suffering…myself And My daughter also have Lyme as well as Co-Infections And its horrible. I was wondering if i could e-mail you regarding a list Of LLMD’s that i have. Let me know your e-mail, i have a great one For infants/children/adolescents as well as For adults. I live very close to you And we can share our information.
Chris
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Thanks Randi! A friend of mine also struggles with chronic lyme, and definitely not being diagnosed for years and then being dismissed were so difficult for her. She felt so alone. I’m sharing this piece with her.
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Randi, what a freakin’ bummer! And I can sympathize! I got Lyme disease REALLY bad a couple of years ago (complete with rash)….and well, I really don’t want to give any more energy to my symptoms so I’m not gonna talk about it, lol! But yes, I get it.
And to those Mamas who are afraid of Lyme, someone told me this summer that Vitamin B repels ticks. I was interested in this because I had picked 5 ticks off two of my boys in the course of two days! So I got a Vitamin B complex, gave my boys ONE DOSE and I’m serious, we have NOT seen one tick since. Get your Vitamin B and fear not!
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Randi this piece was so educational. Like the others, I have always been afraid of lyme and now that I have a kid worry every time she plays outside or anytime we go for a family hike. I try to do tick checks on her as best I can. I actually got a tick-borne disease in college and had to go the ER because of it but even though I was violently ill, it wasn’t lyme, thank goodness. It did go away with medication. Hugs to you. xo
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I am so sorry that you are chronically suffering with this. I am terrified of me or my son getting Lyme Disease. If you are interested, I know there are some naturopathic docs (one specifically in the New Haven area) who do a lot of work in this area. Let me know and I will pass along her name.
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Ann,
Would you be able to e-mail me the name Of the Naturopathic Doctor? O have Two, but would like to see where your Dr. Is?
Thanks
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I have two names in CT…one in Trumbull & New Canaan, CT. They are Naturopathic Doctors.
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Lyme terrifies me. I think the best course of action to start is not to second guess symptoms, but to GO GET TESTED. I don’t get why more doctors don’t go this route?? Is it not detectable in all cases?
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The usual test doctors use (ELISA and/or Western Blot) does NOT detect it all the time. It’s more of a clinical diagnosis, which means the combination of symptoms tells the doctor it’s Lyme. But if the usual blood tests are negative, that’s good enough for most doctors. Thus, you will be tested and dismissed, left on your own with your debilitating symptoms and no answers.
Not all doctors are well-versed in diagnosing Lyme. The ones that are are called LLMDs, or Lyme Literate MDs.
There are other markers, such as elevated rheumatoid factor and/or elevated CRP (C-Reactive Protein), both of which indicate there is inflammation in the body, but not exclusively Lyme. The main thing is an aggregate of symptoms, and then if the antibiotics make you feel better, that’s another indicator! There are many antibiotics that work differently on different people, though, so sometimes you have to try a few combinations until you get the right one.
That’s why I posted the link to ILADS. I am so concerned about people having symptoms and the typical doctor just dismissing them or saying they are stress-related. Not being heard by so many doctors was very distressing for me. This link shows some of the other conditions that Lyme mimics. http://www.lymedisease.org/lyme101/lyme_disease/lyme_diagnosis.html
It’s starting to be taken more seriously, and even considered an epidemic by some. We do live in a high risk area (all of CT). But as I said, there is this band of naysayers who are SO adamant about the fact that chronic Lyme does not exist and that long-term use of antibiotics is a terrible idea. No one really knows why this is so controversial (except for that possible financial link discovered by AG Blumenthal), but trust me, IT IS.
I didn’t mean to scare you even more — sorry, Vivian!
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I’m not really scared more…I just HATE the idea of insect borne illnesses. My kids are outdoors ALL.THE.TIME and between West Nile Virus and Lyme Disease, I sometimes just want to wrap them up in saran wrap and lock them in a plastic bubble! My dog brings in ticks all the time. I often find them on the floor; thankfully, with all hard floors (wood and tile), they are pretty easy to spot.
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Wow, Randi, that’s scary. I was already paranoid about ticks just because they are horrifying! It must be so frustrating to have a condition that is so difficult to diagnose yet wreaks so much havoc. You had better bookmark this post so that you don’t forget again about Dr. S!!
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I was thinking of getting his name tattooed on my arm. Do you think that’s over the top?
Seriously, it’s the unpredictability that is the hardest. It’s hard to make expensive plans (travel, theater tix) when I’m not sure how I’m going to feel. I do it anyway and hope for the best.
Now that the kids are all grown up, though, I can nap with impunity!
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