Friday, August 14, 2009

Back from the doctor

This morning I had an appointment with my LLMD. I've been fretting about this for weeks now because my overall condition has been backsliding. I'd gotten a little better in May/June--up to 30% of pre-Lyme normal--but I've slid back down to about 20% of normal in terms of energy. Cognition and neuro symptoms have been really bad a few times, but overall I'd say that I'm still averaging about 30%.

Because the May/June improvement trend didn't continue, I wasn't sure what we'd be doing next. Plus there was the babesia test. Too much for my brain to handle at once. So I'll break down the appointment into little numbered bits:

1) Babesia FISH test came back negative. This is good. I don't have many of the classic babs symptoms, so this is pretty much affirmation that I don't have babesia.

2) Yeast. Pesky yeast. I don't have many of the typical yeast overgrowth symptoms, but I have had more sugar cravings than usual. And given the antibiotics I'm taking, it's possible that I've got yeast overgrowth...again. I'm currently taking Nystatin daily to prevent this, but it might not have been enough.

So to combat yeast, I'm going to start a round of Diflucan. At the same time, I'm going to stop the Flagyl. Diflucan goes after yeast, as well as attacking the cyst form of Lyme. (I had been taking Flagyl for the cyst form.) There is also a theory that Diflucan impairs the borrelia bacteria's detox system, making it more vulnerable to attack from other antibiotics.

To summarize, we're hoping that the Diflucan will help with yeast overgrowth, attack the cyst form of the Lyme bacteria, as well as weakening the bacteria's detox system so we can hit it with other stuff.

3) I am continuing on IM Bicillin to fight the spirochete form of the Lyme bacteria.

4) I am going to start a new antibiotic to fight the third form that the Lyme bacteria can take. (The three forms are spirochete, cyst, and intracellular or L-form or cell-wall-deficient, whatever name you want to use.) I'm going to start Biaxin (500 mg twice per day) to treat the intracellular Lyme.

5) Looking at longterm possibilities: If I don't start showing some improvment in the next one to two months, we'll look at using ceftriaxone (brand name: Rocephin). Dr. R said that you can use IM ceftriaxone (butt muscle injection, like the Bicillin), or you can go with the IV option. There are pros and cons for each--the injections hurt a lot, but the IV is more expensive and has better penetration in the brain. But I'm not going to worry about that right now, because I've got plenty of changes going on with my meds.

I'm going back to see Dr. R in a month, and that's when I can start fretting about IV antibiotics again.

6) Given that I'm still not sleeping particularly well, I'm going to consult with the psychiatrist (Dr. M) who handles my psych meds to see if adding in Ambien would be an OK idea. I've asked her about this in the past and she wasn't too keen on the idea. And then I started sleeping better, but now I'm not so it's time to reevaluate.

And that pretty much wraps it all up. I'll leave you, my dear reader, with the new Updated and Complete Medication List, because I know it's just so fascinating.

Early AM:
Levothyroxine

Breakfast:
Sertraline, 175 mg
Diflucan, 200 mg
Biaxin, 500 mg
Nystatin
Vitamin C
Multi-B
Fibroboost
Quercetin
Glutathione precursors
Ashwagandha
Acetyl-l-carnitine
Monolaurin (600 mg)

Mid-morning:
Lumbrokinaise
Multivitamin
Ashwagandha

Mid-afternoon:
Calcium
Vitamin D
Quercetin
Omega-3/DHA

Dinner:
Biaxin, 500 mg
Nystatin
Vitamin C
Fibroboost
Quercetin
Glutathione precursors
Acetyl-l-carnitine
Monolaurin (600 mg x2)

Bedtime:
Clonazapam
Lumbrokinaise
Sublingual B12

Additional:
1.2 MU IM Bicillin, 3 injections per week
Vicodin, as needed for pain, typically 1 pill before bed

6 comments:

  1. Yeast also contributes to fatigue. Clearing this up may help you with that. Five Lac http://fivelac.com has beat diflucan for me and a friend of mine hands down for yeast. (I don't sell it or receive any compensation)...
    and they state you don't have to change your eating habits... although I did. Hope this helps!

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  2. Rocephin IM bioavailabilty really sucks vs IV. Like in IV it is 4 times more bioavailable than same dosage IM

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  3. Ohh yeah and my pure imho - you seem to only take macrolide and penicillin. Penicillin doesnt hit CWD and cysts .macrolide does not seem to be effective vs cysts either

    Have you considered adding another abx for cyst form (flagyl for example, fluorquinolones seems work too but they are dangerous)

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  4. Max--I have been on Flagyl. I just stopped and replaced it with Diflucan, which is in the same general family as Flagyl. Diflucan isn't as effective against cysts as Flagyl, I think, but it will combat the nasty yeasties.

    So with the Diflucan, Biaxin, and IM Bicillin, I'll be hitting all three forms of the bacteria for the first time. (I've only ever attacked one or two of the three at a time before.) We'll see how it goes.

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  5. I thought I had a complicated routine. I take the enzymes (lumbro-serapeatase-natto) about 30-45 minutes before my abx. the symptoms that alerted me to babesia was a cycle of dark yellow urnine (4-6 wks), swelled veins in hands/arms, and a spacey feeling like you're floating on a cloud when walking. I really didn't herx until i started mepron. Here's my current routine: ketek/mepron daily m-w-f flagyl 500 mg twice T-TH-Sa-Su artesimin (super from allergy research). Ketek is the best oral abx in vitro, but it has risks so I'm cautious to avoid alcohol and take milk thistle.

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  6. I've also had some nasty thrush this time around. What has worked for me is taking Grapefruit Seed Extract (125 mg) - 2 pills - 4 times a day for about a week. And, I need to not do too many sweets - it seems to live off of them!

    Good luck! (I also did OTC Fluconazole - but it did nothing for me.) :(

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