my story, my-daughter

The energizer bunny

I’m starting to feel like chronic illness just keeps going and going and going …

I know that’s the definition of chronic, but I keep getting my hopes up. I suppose the right thing to focus on is that life goes on too. And for the most part, I do. But this is my space to talk about other things. Like my daughter, who is continuing to complain of daily belly pain even after the constipation treatment. We’re waiting on the results of an x-ray to see if constipation is still the cause, but she’s complaining of headaches now too and I am not hopeful.

While she is obviously a focus of my concern, my own situation is also not so great right now. I’ve experienced a lot of pain, fatigue and brain fog recently, some temperature regulation problems, ear ringing is back, and so is napping and a little dizziness. I am ramping up the yoga again and taking frequent salt baths. I am also trying to get my sleep patterns back under control. My homeopath/MD suspects yeast, and gave me a bunch of supplements and diet change (low carbs/sugar) to help with that, but I’m also going to see the endocrinologist because my appetite has been out of control, which happened the last time I was hyperthyroid. Tomorrow bloodwork, then we’ll see.

Anyway, I’m surprisingly cheerful despite all this, and I’m still hopeful it’s a temporary symptom uptick. As I said: my bigger concerns are with how to help my daughter. But I wanted to give an update nonetheless. No interesting stories or major insights today, just the realities of ongoing chronic illness.

my story, tests, treatment

Drawn in by false hope

I was hesitant to even write about this experience, because who wants to admit it, but I wasted a lot of time and hope on something that I shouldn’t have. The reason I am telling you this is that if you are ill you have probably faced the same temptations I do, and maybe we can all learn something from my experience.

What exactly happened? I desparately want a cure, and I fell for the promise of one…

Continue reading “Drawn in by false hope”

treatments

Alternatives?

I’ve been forced to accept the fact in the last two weeks that, despite the great recovery that I had in October, I’m still not better. In fact, at this point, it appears that I have simply gotten back to where I was when I first started antibiotic therapy. In other words, while on antibiotics, I got very, very sick … and then I recovered from that. Who knows whether or not I would have gotten just as sick if I’d never started the antibiotics, but I certainly find it difficult to believe that my current treatment course is getting me where I want to go. At my last LLMD visit, my doctor called me an “antibiotic veteran” — and this is after just one year of antibiotics (but four different types + mepron).

Based on this realization, I have started once again to think about alternatives to antibiotics, such as those described in The Top 10 Treatments for Lyme Disease, Healing Lyme, and Lyme Info’s page on alternatives to antibiotics. I don’t know where this will lead me yet, but I do know that I will consider both techniques that are complementary to and substitutes for traditional antibiotics. This will be the first in a series of posts where I explore different alternative techniques. Disclaimer: I am no doctor, and I cannot speak to the ability for these techniques to cure anyone. What I will document is what sources of information I found about different techniques, and what evidence I used to make my own personal decision to try or not to try something. I encourage you to research these techniques and make your own decisions about them.

Note: this post used to go on to discuss theĀ  Marshall Protocol, but instead I decided to step back and think about how to evaluate different treatment approaches. I will discuss the Marshall Protocol in a future post once I’ve had time to collect my thoughts on it in a way that addresses the full set of issues that I think should go in to such a serious decision.

diagnosis, kids, my-son

A mom’s worst fear

ADDENDUM 11/24/2010: I’ve modified this post to reflect some of my more current understanding about Lyme disease. Mods are marked with the word ADDENDUM below.

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 — ADDENDUM 11/24/2010: I have since learned that this over simplifies the situation and really is only believed by folks on one side of the lyme wars. In my son’s case, this interpretation turned out to be incorrect.
  • Fatigue, as a symptom, is fairly rare in young kids with lyme, and might indicate other illnesses — ADDENDUM 11/24/2010: This is also disputed.
  • Children tend to respond very well to treatment. Oral antibiotics for about a month is not an uncommon treatment — ADDENDUM 11/24/2010: This is a very short amount of treatment, especially for a chronic case of Lyme disease
  • 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!