May 20, 2009 at 9:32 pm (my-son, thoughts)
Tags: family, thoughts
I’ve been trying to think of the right way to say thank you to my mother for over two weeks now (ever since I realized mother’s day was coming up :). But it was only recently that I finally realized what I want to do. This post is for her.
Let me start by describing some of the things she and my dad have done for me this year. Perhaps the most important, to me, is the fact that they seem to have cured my children of a series of immune dysfunction. The children started having colds that they could not lick, ear infections, and even a sinus infection once, the same year that I became symptomatic. For many months of each year they were sick more days than they were healthy. Doctors all told me not to worry, they were in the range of normal. I of course continually fought with the fear that they had Lyme disease like me. My mother felt that our basement smelt moldy, and offered to buy us a device she had found, called a Wave/Humidex. I was skeptical, but she insisted (and paid) so I had it installed. The same month it was installed, my children went back to normal (this was October) and they have been fine ever since. My interpretation is that the mold bloom we had got all of us sick, and in their case, continued exposure to mold kept them symptomatic up until this device was installed. Perhaps it gave me a boost too.
Then my mother-in-law developed extreme pain severe enough to put her in the emergency room. Five days later, the hospital was still flumoxed. My mother suggested a fairly obscure possibility that she was familiar with because it sometimes affects pregnant women. She also knew a diagnostic test for it. No one here had heard of the test, and they mostly ignored the suggestion … but in the end, with no other ideas, they tried the test (walking backwards relieved her pain) and ended up giving the diagnosis my mom had suggested days before. Thanks to her help, my mother-in-law left the hospital with the correct support in terms of physical therapists. Read the rest of this entry »
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March 31, 2008 at 2:30 pm (my story, my-son)
False positive! I will be double checking this with the local lyme expert on Friday, but it was his *IGm* not IGg that was positive, which would indicate an infection in the last month or so. Since he couldn’t have gotten sick in the last month, it’s probably a false positive. Not only that, every single lab other than the IGm was normal, so he doesn’t seem to be sick at least according to his bloodwork. He doesn’t even have any allergies.
This still leaves open questions, like whether he’s got something else that’s making him tired and sick a lot. On the other hand, he’s 4 and in school, and likely to pick lots of things up. I wish it were easier to know when to worry and when not to.
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March 31, 2008 at 11:40 am (diagnosis, my-son)
Tags: fatigue, lyme-wars, kids, children, immune, integrative, alternative
I’ve been worried about it since I got my diagnosis… but it was only recently that those worries turned into action. I brought my son in to see his doctor last week because he had another ear infection, and we sat down and talked about how often he’d been sick in the last year and a half … and I was shocked to discover a pattern similar to my own — sicknesses of various sorts monthly almost the entire time. Sometimes even more frequent, and for one two month period less frequent. This is a child who had never had an ear infection until the year he turned 3, and was not frequently sick. I was also concerned because he seemed fatigued more frequently than I’d expect — in fact, his teacher told me that he often appeared glassy eyed by snack time.
I decided that I couldn’t wait any longer and asked his pediatrician to test him for lyme. If I was right, and didn’t find out for another year or longer, I’d be so angry with myself. If I was wrong, I’d feel bad that I made a child who is scared of needles get blood drawn, but it seemed like much less of an issue. Luckily (and of course) my pediatrician was able to take a less biased view of the whole situation. She pointed out that we needed to test for other causes, so we did allergy tests, blood work, and a Western Blot. We skipped the ELIZA and some other tests that he might need, but even so he had 8 vials of blood drawn. Needless to say, this was very traumatic and I’ve been feeling guilty all week. Until today.
Today I called his pediatrician, and the office said the blood work had come in. I requested that they have a doctor look at it, and my heart sunk when an hour later the doctor called to tell me that his IGg was positive (this means that he may have been exposed, but not recently). My first reaction was to imagine him going through everything I’d been through. Logic was completely absent, and so was self control. Since then 3 hours or so have passed, and I will have even more information after I’ve seen the test results (I’ll probably post an update then). In the meantime, I contacted a very special pediatrician who is based in Pittsburgh and is a leading researcher on pediatric lyme disease. He’s been a great help to me in interpreting my illness and he also helped me see my son’s situation more clearly. I also spoke with a doctor in Ohio who specializes in integrative medicine and will talk later today with my homeopath/MD. Here are the results of my conversations so far:
- The Western Blot, especially in absence of an ELIZA could indicate that he has a disease other than lyme (such as CMV or Epstein-Barr). This is because it tests for antibodies, some of which are not specific only to Lyme. When I see it, I’ll know much more about how likely it is that he really has lyme disease. Everyone I spoke with wants to see our results to interpret them more carefully and we will be faxing them around later today.
- It is expected that he would have an IGg but not IGm both because he’s had these symptoms for some time, and because (if this is lyme) he’s only been in Frick park once since my diagnosis and was likely exposed to it when I was
- Fatigue, as a symptom, is fairly rare in young kids with lyme, and might indicate other illnesses
- Children tend to respond very well to treatment. Oral antibiotics for about a month is not an uncommon treatment
- The lyme researching pediatrician will see us this Friday at his clinic at Children’s Hospital. If it is Lyme, he can help us with the treatment. If it is not, he will help us track down what it is. It’s great to have such a top hospital so close by.
I am also diligently looking into alternative options (still searching for them for myself, and of course would want to understand if they could help my son). I spoke with the folks in Ohio at the integrative medicine center in Columbus. They seem actually willing to work in the context of multiple treatments and not as solo silo-type doctors. They specialize in helping folks who seem to have gotten sicker than one would expect from something, by adjusting diet and other things to try to make the immune system work better. By looking at bloodwork, they can tell if they are likely to be able to be of help. They are willing to take a look at both my bloodwork and my son’s if we want. In addition, I have a friend who’s nephew has lyme disease. He is being treated with ongoing antibiotics and has been on them for 3 years because his symptoms recur when he goes off them. I truly hope that my son doesn’t need that sort of treatment, but I asked her for this doctor’s phone number so I can find out more about when that sort of approach is recommended and used. It is very scary to be in the position of deciding which side of the lyme wars I believe in not only to guide my own future but that of a child who is just at the start of his life. I don’t want to screw this up!
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