Sunday, May 27, 2012

My Lyme follow-up doctor appointment

I just had my first doctor's visit with my CFS specialist since starting antibiotics for the Lyme 6 weeks ago. My blood work for the few tests came back at reasonable enough levels that he didn't want to run anything for my next visit in 2 months! That was a first.

  • My reverse T3 levels (thyroid) have gone down to 12 (from a whopping 55 when I first started seeing him 2.5 years ago) and he's happy with that; I still have to take 33 mcg bioidentical T3 hormone to get my reverse T3 levels down more, but he didn't increase the dosage like last time. 
  • My cortisol levels were within range (they have been too high recently). 
  • My vitamin D was super low (range is 30-110, and I was at 33!) so he told me to take 10000 IU per day. 
  • At the last visit, my natural killer cells were super low (though still higher than when I started with him) but he didn't test them this time.
He said he's happy that the zithromax antibiotic I'm taking is doing *something* so he's going to keep me on it but also add TWO other medications to the mix. Gah!! My poor body, I don't know how my sad little liver will handle processing all these meds. He told me to beef up my intake of probiotics for 3-4 days prior to starting these and then give 'em a try to see how I react. The two are:

  • Amantadine, 100mg  (an antiviral that has been shown to target the cystic form of the Lyme bacteria...Lyme is apparently very adaptive and has a cystic form! Who knew)
  • Suprax, 400 mg (an antibiotic, in case the Lyme has found ways to go around the Zithromax; again, it's super adaptive)
Some things I learned about Lyme from my barrage of questions:

  • There is some early evidence that it can be transmitted between people (from mother to baby in womb, between sexual partners).
  • He has a patient whose been on treatment for Lyme for a year and is now 100% better from her CFS. She's back to exercising and back in school. The story gave me hope :)
Anyway, we'll see how things go with all those extra meds! I'm feeling positive and hopeful, though. I will get better (one day); that's my mantra! Hope everyone's having a lovely Memorial Day Weekend if you're in the US :)

Tuesday, May 15, 2012

1 month into my antibiotic Lyme disease treatment

When my CFS specialist doctor and I were talking about Lyme when I first found out I had it, he said he can't predict the outcome of treatment with antibiotics. He mentioned some examples: one girl came to him after a few months and told him she was 80% better, another girl who was in worse shape than me has been sitting on IV antibiotics for 4 months with slow, minimal progress. So, I decided not to bet on anything and not to get my hopes up. Even if it didn't help at all, I've been ever so (painfully) slowly improving these last 2 years since seeing him and that's all that matters. So maybe in 10 years, I'll be all better ;) But either way, of course, secretly I've been hoping I'm going to be like that 80% better case :)

So, it's been almost exactly a month that I've been taking 500 mg of Zithromax (Azithromycin). Aside from it wreaking havoc on my digestive system (which has almost normalized anyway), I can confidently say that I'm a teeny tiny bit better than when I first started taking them. Am I running laps? No. Am I even able to work more hours at work? Ok, that's harder to say no to because I have in fact been working half an hour to an hour more per day (more out of necessity). Has my lifestyle changed at all? No. But, I do feel less sick from the things I'm already doing. We'll see how things go. No miracle cure, as I expected, but I am feeling a little something something which will hopefully continue and quicken in pace (knock on wood)!

I'm also halfway through this book called Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its CoinfectionsCan I be in love with a book? Because I think I'm in love with this one! The author goes through the more technical details of infection from Lyme in the first chapter (the bio nerd in me adores that). Then he describes a core herbal protocol and an expanded herbal protocol to target specific symptoms or stages of Lyme disease. But the way he does it is what the hardcore skeptic in me adores: he lists research studies that back up the claims that he's making. He especially notes the studies that are double-blind, placebo controlled studies (results are the most trust-worthy from these types of studies).  You can take the herbs he mentions with antibiotics, and some of these supplements actually act to help traditional drugs in their actions (backed up by studies). I will make a list of everything and discuss with my doc at my appointment next Friday where we check in on my progress with the antibiotics and discuss treatment options. I'll also make a post with that info once I get my act together. It seems too like the herbs he recommends are not just specific to Lyme, but chronic infection of any kind (which I'm convinced is the reason for a lot of cases of CFS). See below for more details on the book:

Tuesday, May 1, 2012

How to get the new Lyme culture test

(Had some issues, had to repost) Since I got a positive result on the new Lyme culture test that came out recently, I thought I'd share as much information as I can on getting it for others.  Again, this test is supposed to be a 100% conclusive test (it is a direct test) since they try to actually GROW the bacteria versus looking for indirect markers like with Western Blots or ELISA.

  • The lab that does this test is Advanced Laboratory Services. The basic version of the test is $600 and at the time is most likely not covered by insurance. (I got the basic version)
  • Their number is (855) 238-4949. I would recommend calling because of course they'll provide the best answers :)
While it's approved in 48 states and is approved by the CDC it is still in the process of getting vetted for insurance coverage I believe. Expensive as it is, might be a worthy investment (I believe so, anyway!). For example, I have no recollection of exposure, bites, anything like that, and I came up positive. AND my CFS started from a clear case of mononucleosis (or so I thought). Proves it never hurts to check!

  • I got the test done through my doctor's office (a clinic that specializes in CFS, Fibromyalgia, and a few other things called Holtorf Medical Group). They have a contract with the lab that does this culture test so it was very easy since I was able to get my blood drawn there. 
  • Most doctors and other blood draw labs (like Quest Diagnostics) don't have a contract with the lab (I assume). As I understand it, a contract means they can draw the blood for you and are legally responsible for sending it off to Advanced Labs to run the test.
  • From their FAQ page

    Who may order this test?

    Based on the laws of Pennsylvania where we are located, it must be ordered by a medical practitioner defined by them as an MD, DO, CRNP, PA-C, and Certified Nurse Midwife. If you are an ND, and even if you may order tests in the state in which you practice, you still will need to have the test ordered by the type of practitioner on Pennsylvania's approved list. Note that it also cannot be ordered directly by the patient. The practitioner must request a blood drawing kit from Advanced Labs, and once the specimen is drawn, it must be received by us within 24 hours. Please refer to the collection guidelines, below.
  • Also from their FAQ page:  

    What are the guidelines for blood collection to ensure the highest culture yield?

    • Patients should be antibiotic-free for at least 4 weeks prior to collection.
    • Have symptoms and/or signs of active disease at the time of blood draw
    • Patient samples MUST be drawn and shipped Monday - Thursday. Do NOT send any samples on Friday or Saturday as the lab is not open on weekends!
    • Blood must reach the lab within 24 hours of being drawn!!! Be sure to send the specimen out the same day it is collected, and use the FedEx overnight mailers we provide in the kits.
    • It is suggested that the blood draw be scheduled for the afternoons if possible because that is when spirochetemia is more likely. However, be sure that FedEx will do an afternoon pickup for you.
  • Once you have the kit, you will need to find someone who is willing to do the blood draw for you.
Hopefully the practitioner who ordered the test for you will be willing to do so because I had a heck of a time finding a blood draw lab who would do it (until I realized I could just do it at my doc's because of their contract). Hospitals may be willing to, but in all cases apparently it's a legal problem because if they give the sample back to you to FedEx to Advanced Labs the blood is considered "bio-hazardous material" and they are thus liable for it since they drew it for you. It's quite complicated, I can try explain more if anyone has any questions.

I also just bought a book on Amazon called Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections. It only costs ~$14, has 59 reviews and 4.5 stars! I browsed the reviews and what I loved about it is that 1) it's written for physicians, and 2) it's supposed to have references to actual research literature, 2) it references both alternative and traditional therapies/medicines which in my opinion is the optimum for wellness. Not for everybody probably, but I always ask my doc a million questions and want to know everything he knows. And I enjoy knowing the sources that information is coming from. There are so many websites online with information on Lyme, but do not cite any sources. I'm always left wondering if they just made this up on the spot or have any actual literature to back up their (sometimes very wild) claims. I will update with tidbits I find interesting!