Thursday, July 08, 2010

A Double Lyme Update

Where to start?  I have so much to tell you  about our trip to New Jersey today to see the Lyme doctor (Craig wasn't happy he had to come along, but that's life).  I'll start with Jamie, my almost-16-year old son.

The doctor reviewed Jamie's test results with us.  He tested positive - indicating both old and current infection - for Lyme disease.  That wasn't too surprising, since we suspected it.  This could be the same Lyme infection that triggered his CFS to start back in 3rd grade or the Lyme infection he was treated for in 7th grade (he never fully regained his stamina after that one) or this could be a newer infection he picked up in the last year or two.  No way to tell really.  Lyme is transmitted by a tick bite (many people -myself included - can't recall being bitten because the ticks that transmit it are tiny) and is caused by a spirochete (similar to the one that causes syphilis), something closely related to bacteria and treated with antibiotics.

Jamie also tested positive for babesiosis, another common tick-borne infection (often referred to as Lyme co-infections) that often accompanies Lyme.  Babesiosis is caused by a parasite, a paramecium, if I remember my AP Biology correctly!  It's helped by antibiotics but also needs some specialized medications.

You may remember that all this started a few months ago because we noticed several unusual symptoms in Jamie - including lines on his back - that are associated with bartonella, another tick-borne Lyme co-infection.  Jamie's bartonella test came back negative, but the test is often inaccurate, so the doctor will treat for that, too, since his symptoms match.  Bartonella is caused by a bacteria and treated with antibiotics, though it usually requires some different medications than Lyme.

The doctor's strategy is to begin with a broad-spectrum antibiotic that will work against the Lyme and will also begin to chip away at the other infections.  Doxycycline is often the first choice, but it causes extreme sun sensitivity (as I can attest!), so during the summer, he prefers to prescribe Bactrim (I'm allergic to sulfa drugs and can't take it).  So, Jamie will start on that tonight, and we go back for a follow-up visit in 4 weeks.  He also noted that Jamie shows signs of yeast overgrowth and recommended an herbal product that should greatly improve his GI symptoms.

We are all feeling both excited and a little scared!  The doctor did say to expect a fairly severe herx reaction (symptoms get worse before they get better) because he has three infections and has probably had them for a while (we first noticed the bartonella lines a year ago).  So, the rest of the summer could be rough for Jamie.  On the plus side, the doctor is very optimistic that Jamie will improve with treatment and most likely see an improvement to symptoms he's been living with for years.  In fact, the doctor - who is very mild-mannered and understated normally - said he finds Jamie's case very interesting and exciting.  Though he's not a CFS expert, he understands that many cases of CFS begin with some sort of triggering infection.  We've always known Jamie's began with Lyme in 3rd grade, so he's interested to see how much Jamie will improve with treatment, especially since he was never before tested for any of the co-infections.  Jamie is in very good spirits, with the same hopes and optimism as the doctor.

As for me, he wants me to try going off doxycycline!  Though it's very hard to differentiate CFS symptoms from Lyme symptoms (as is obvious from Jamie's case), I knew when I got Lyme because of new symptoms - mainly nausea and knee pain - and I haven't had any of those symptoms in months.  His general rule of thumb is to treat until the patient has gone 6-8 weeks without symptoms, but my case is special!  The CFS has made it harder to get rid of Lyme, and I've tried stopping antibiotics twice before, and each time, my symptoms returned within a week.  So, he wanted me to be symptom-free for 2-3 months before stopping.

As much as I can't wait to get off these high-dose antibiotics, I'm scared!  The previous two times I tried, I had to go through another 2-month herx reaction each time I restarted.  I don't want to go through that again!  He told me it's up to me whether I stop today or when I run out of pills in a couple of weeks, so I think I'll wait.  I also need to go off my birth control pills (I take 90-day pills) and get my period soon, and that always makes all my symptoms worse, so I think I'll do that next week - I don't want to have multiple changes at once so I can accurately assess the effect of stopping the doxy.  I kept asking the doctor about "what if" my symptoms return, and he just smiled and said, "You'd go back on the doxycycline, but I'm optimistic."  I like that about him.

So, lots of news in our family today and lots of mixed emotions.  Nothing to do now but wait and see - for both of us.

P.S. Renee - The doctor recommended the very same supplements you did to counter the effects of the herx!  Thanks for the great advice - I'll order them tonight!

9 comments:

  1. Hi Sue
    I am so sorry Jamie is dealing with the Lyme, Bart and Babs....three nasties that are too smart for our own good! So glad you have a good doctor you can rely on to help you through it.... Going off Doxy is scary, I know. i felt so good off of it and during that time ~ for me~ the lyme was slowly activating again....so that when i went back on my neuropathy went out of control...just like you said. It is challenging, but there is also the knowledge that Burrascano shares ~ that pulsing like that actually brings Lyme bacteria out of hiding so you kill more each time. It is just so hard to go through. Glad that you can get those supplements.....Detoxing is when you use support methods like castor oil packs for the liver, sauna for the skin, supplements, etc. that help remove the dead bacteria toxins from your body. It does not come out on its own from what I have been told. I take Phytostan for the yeast, and also at least 5 probiotics a day....especially before bed. As you know, this journey is not easy, but it is possible!
    You will continue to be in my prayers.
    PS I good book for ideas on supplements, detoxing, etc. is Insights For Treating Lyme Disease by Connie Strasheim.

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  2. Thank you, thank you, Renee, once again, for your wonderful advice! It's all much appreciated. I hadn't heard that pulsing abx helps get rid of Lyme - I thought I had set myself back each time. That makes me feel better about trying again!

    Jamie already takes probiotic - but just once a day. Now we'll go up to 4 a day (I take 4 a day while on doxy and haven't had any problems with yeast). Our doctor is in love with a newish herbal product called ADP - it's emulsified oregano (I know, weird!), and it's a strong anti-fungal, anti-viral, and anti-biotic. he wants me to take it too to help with Lyme. I tried straight oregano supplements before for herxing but they upset my stomach - he says this won't. He says it's much gentler option than prescription anti-fungals and works within a month for most of his patients to get rid of yeast. E-mail me from my profile page if you want details on how to order it.

    Sue

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  3. Wow, Sue. You've got a lot to "digest" from that doctor's visit. A lot of it is positive though. For one thing, addressing the lyme and related infections may well lead to a reduction or even recovery from CFS for Jamie since he's still young.

    As for your situation, your doctor seems confident that you'll do okay off the doxy. He's been very careful about leaving you on it longer because of the CFS. And if the symptoms do come back, now you've got feedback from Renee indicating that you'll be "pulsing," -- bring out more bacteria each time you go off and then back on.

    I think you're right to not do everything at once to your body -- a kind of pacing (a word we know so well!).

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  4. I deeply regret that this happens friend, maybe it needs most is support from a friend, so I say that in these difficult times we are all here with you, good luck ...

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  5. Wow! A lot to take in. This doc sounds great, really positive. I wish you all the best with it . . . .

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  6. Sue, I'm glad Jamie's getting the treatment he needs and, while being sick in the summer sucks, it's better than the school year, I guess :) I hate that he has to go through this so young! But maybe being young will help his recovery.

    I know going off the antbx is scary -- I hate herxing more than anybody I think! -- but it really is amazing how much you can learn by going off them. When my doc first had me pulse my meds, I was really nervous, but we found out that things were better than before & not as good as thought. Thus time for a new med so push through the plateau. I hope you find out something useful, too! And before it's long enough to cause a month-long herx when/if you start back up!

    Adam is pulling me out of my chair so ....

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  7. Hi Sue, Just wanted to drop in and say hi! Just read your last post, gosh lots to digest for you and the boys there.

    Sounds like you're a foodie and bookworm like me so really looking forward to reading your older posts x

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  8. I know this is all good news as it means moving forward toward getting well, but I'm sad Jamie (and you) are having to go through it at all. Tell Jamie he will be in my thoughts and prayers for a quick herbx (?) process.

    You always do such a good job sorting through all the details and finding the best way to navigate through it. I am really hoping that this time is it for you!

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  9. Sue...this is my 1st time reading this blog of yours. You and your poor family...gezz.

    I was diagnosed with Lyme's Disease about 4 years ago, after tick bites that year and the previous year. I was very sick after the first sick bite, but after heavy doses of antib's, I have been pretty much symptom free now, except for some joint pain.

    I hope all of you can find some treatment to work :)

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