Sunday, December 13, 2009

My Medical Protocol

I am posting the protocol that my LLMD (Lyme Literate Medical Doctor) has me on.  This is so that people know what my every day life is like, and so that I MAY be able to help someone else in some way.  Even if only minor. 

In my blog I will refer to my doctor as Dr. B to protect "their" identity.  I don't want to risk them losing their license for treating my Lyme.

It seems like everyone is on different treatments when it comes to Lyme Disease.  What works for some may not work for others.  At this time, the battle against Lyme Disease is an uphill one.  And everyone with Lyme Disease is a guinea pig.  Everyone has different co-infections. Yep, you don't just get the Lyme Disease bacteria, Borrelia burgdorferi, but you can get up to 4 other co-infections with different strains.  To learn more about co-infections please click here CALDA Coinfection Intro  I am posting this so that either I can help someone else that cannot afford a doctor (most everyone fighting Lyme Disease has to pay everything out of pocket).   Please keep in mind that this is MY protocol, I am not a doctor, nor am I recommending anyone treat themselves or follow my protocol (legal protection).

Antibiotic:

Bicillin LA (Penicillin G Benzathine) 1,200,000 units (2ml) Injected IM 2 times per week (may up to 3 times eventually)
For help in how to do Bicillin injections & more info, click here:  Bicillin Injection Info

Cost: $650 for 10 syringes

You can get generic from other countries, but it is a "pain" to inject & there can be a lot of error involved.  Someone with experience dealing with generic Bicillin talks about it in her blog so you can read about it here 

Supplements:

  • Ortho Biotic by Ortho Molecular Products (7 different pro-biotics, pharmaceutical grade): 1 capsule 3x/day 30 minutes before each meal.  $55 for 60 capsules
  • Digestzyme by Ortho Molecular Products (digest enzymes to aide in food digestion): 1 capsule 3x/day at first bite of each meal.  $30 for 90 capsules
  • NT Factor Energy by Researched Nutritionals (Mitochondrial Formula, helps with fatigue): 2 capsules after each meal (only I only take it twice a day to save money). $50 for 90 tablets
  • K-Pax by Ortho Molecular Prodcuts (pharmaceutical grade vitamins).  8 capsules total per day after meals  $38 for 120 caps
  • Orthomega Select DHA (DHA & EPA pharmceutical grade omega 3, etc) 1 capsule 2x/day after meals.  $35 for 60 capsules
  • Avipaxin by NeuroScience, Inc. (regulates proinflammatory Cytokines by supporting Acetylcholine) 2 capsules twice per day.  $60 for 60 capsules
  • Milk Thistle (supports liver function) I buy it wherever, Trader Joes.  I can't remember cost,  I think it was around $6 for 100 capsules
  • Methylcobalamin (Vitamin B12) 12 micrograms (I think it's micrograms, it's .12ml) Injected 3 times per week   $35 for 1 month supply.
Other Prescriptions:

Naltrexone HCL 3mg Capsule AKA: Low Dose Naltrexone or LND  (This is to improve my immune system)  To learn more about this little wonder drug, click here:  http://www.lowdosenaltrexone.org/
Here is what this particular website says about it: "FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders."

I have done research online about this drug & it is very promising for a lot of diseases.  I take 1 pill at night right before I fall asleep.  Cost $57   for 60 capsules (must get through compounding pharmacy).  The compounding pharmacy I use is McGuff's Compounding Pharmacy Services, Inc. http://www.mcguffpharmacy.com/  Clay knows my doc & is the ad pharmacist there.  They make my LDN & B12 (methylcobalamin) & they order my Bicillin shots for me.  He seems to be pretty knowledgeable about Lyme Disease.  They service all over the US.  Shipping is incredibly fast.  My LLMD says this is the best compounding pharmacy she's found.  Very clean, strict with regulation, etc.

**I take all the pills with a small glass of kefir.  My stomach doesn't get upset that way.  If I don't take it with kefir, there is a lot of pain involved.  Not sure why.  Kefir is also an excellent source of 10 different probiotics.  I am going to order my own kefir granules & make my own.  It is reportedly great for your immune system.

2 comments:

Max said...

Hey thanks for sharing!

I have lyme too and use bicillin as well. But I also use 2 other oral abx (Bactrim and Ketek) . I do use LDN , NTfactor milk thistle and EPA/DHA too.

I also use ALCAR, Quercetin and CoQ10

If you really pay $650 out of pocket you can get it much cheaper:

http://www.pharmacy1010.com/product_page.asp?id=1912


This one I think is premixed. I personally use this one (its powdered):

http://www.pharmacy1010.com/product_page.asp?id=66

It has shorter half life (which do not matter cause I inject 3 times a week- it only matter if you do once a week), but much bigger spike in blood concentration

It also is painless to inject (because it has some procaine in it ) only downside I have to use 18G needle cause my 21G gets clogged .

Sonya Fights Lyme said...

Hi Max,

Thanks for the links! I found one that is the Penicillin G but can't tell if it's pre-mixed or not. I will try to call & speak to someone (hopefully in english). I couldn't do the powder. 21g needle is big enough for me! Last 2 injections haven't hurt as badly though. I just can't imagine using an 18G! You are brave. I would like to talk more if possible about your supplements & other antibiotics. Think I need to start treating more agressively. Can you give me your email address? I promise to delete the comment right away.