My treatment plan

I have been meaning to blog about my treatment plan for a while but kept putting it off.

Currently I am being treated for Lyme, Babesia, and Bartonella along with a very sick gut (worst my doctor has ever seen) plus adrenal failure.

On Monday I saw my LLMD and he changed my medicine. For my antibiotics I am on a three week on, one week off schedule.

Here is my current protocol:

Rifampin 300mg- Monday, Wednesday, and Friday, 1 in the morning and one in the evening, three weeks on, 1 week off

Zithromax 500mg- Monday, Wednesday, and Friday, 1 in the morning and one in the evening, three weeks on one week off

Minocyclin 100mg- Monday-Friday, 1 in the morning and 1 in the evening, three weeks on one week off

Tinidazole 500mg-Thursday and Friday, 1 in the morning and 1 in the evening, three weeks on one week off

Diflucan 100mg- Monday and Wednesday, 1 in the morning all weeks

Nystatin 500,000 units- three in the morning everyday all weeks

IV Clindamycin 900mg- IV twice a day Monday, Wednesday, and Friday, 3 weeks on, 1 week off

IV Meropenem 1Gm- IV twice a day Monday, Wednesday, and Friday, 3 weeks on, 1 week off

Bioenzymes- take 3 on an empty stomach between lunch and dinner all days

Immune Prebiotic Formula- take 4 in the morning everyday all weeks

Complete formula- take 1 in the morning everyday all weeks

Detox formula- take 1 in the evening everyday all weeks

Vitamin D3 5000- take 3 in the morning everyday all weeks

Magnesium- 1 in the morning, 1 at noon, 1 at dinner, 2 at bed, everyday all weeks

Curaphen- 1 in the morning, 2 at lunch, 1 at dinner, everyday all weeks

Zinc 50mg- take 1 at bed, everyday all weeks

EPA/DHA- take 1 tsp three times a day everyday all weeks

Primrose Oil 1300mg- 1 in the morning, 1 at lunch, 1 at dinner, everyday all weeks

Basic Nutrients IV with Copper and Iron- 3 in the morning, 3 at dinner, everyday all weeks

DHEA 25mg- 1 in the morning every other day all weeks

Saccharomyces boulardii- 2 in the morning, 2 at lunch, 2 at dinner, everyday all weeks

Microbotics Super Concentrate- 2 at bed everyday all weeks

Adrenal Advantage- 1 in the morning, 1 at lunch, 1 at dinner, everyday all weeks

CoQ10 300mg- 1 in the morning, 1 at lunch, 1 at dinner, everyday all weeks

Niacinamide- 1 in the morning, 1 at lunch, 1 at dinner, everyday all weeks

Pancreatic Digestive Enzymes- 1 in the morning, 1 at lunch, 2 at dinner, everyday all weeks

Naltrexone 0.5 mg- take 2 at bed everyday all weeks

Hydrocortisone 5mg- 1 in the morning, 1 at lunch,  everyday all weeks

Methylcobalamine 25mg- Inject 0.2 ml intramuscularly everyday all weeks

Allithiamine 50mg- 2 in the morning, 2 at dinner, everyday all weeks

Plus I am on a pain medication.

Let’s hope that this starts to help me see some results!!

Lyme…it sucks the juice out of you!

Lyme disease takes an average healthy person and sucks them dry!! The disease make your once vibrant life shrivel up and eventually just a shell remains. All the good stuff gets infected and disappears.

Before LYME:

You feel whole and fresh!

After you get Lyme you feel sliced in half! You slowly show signs that something is wrong, you just can’t figure out what it is!

After years of being sick, seeing countless doctors, getting invasive test after test, suffering through painful surgeries you are left feeling juiced!

Then you find a Lyme Literate Doctor and start to believe that maybe you can get better! You start medication and supplements to try to repair your sick body. You hope that this will do the trick and that you can somehow eradicate the bacteria and become whole again.

The process of healing sometimes seems impossible. The disease has taken over and NOW is the time to fight!

FIGHT WITH…

EVERYTHING YOU GOT!

BECAUSE THERE IS NO OTHER OPTION!

KILL THE LYME AND TAKE BACK YOUR LIFE!

Low Dose Naltrexone

I take many different medications on a daily basis but one that really interests me is the low dose naltrexone. Typically, naltrexone is used in the ER when someone is having a drug overdose from heroine or opium. Naltrexone blocks the effects of those drugs.

My doctor has studied using low dose naltrexone in lyme patients and believes that there is a large benefit from the drug. Since I take narcotic pain medication I was started on a very small dose of naltrexone. I started out taking 0.5MG at bedtime and this last month was increased to 1MG at bedtime. Before increasing my dose I would wake up from the pain every night at about 2am. Since I have increased the dose to 1MG I sleep almost every night until about 5am. That’s 7-8 hours of sleep for my sick body!! I think that this drug is helping me get an uninterrupted night sleep!

Low dose naltrexone starting to be used with many chronically ill patients. If you are interested in reading more about the drug here is a great website:

http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone

My medical insurance does not cover this drug but it is not overly expensive. I also have to get it from a special compounding pharmacy that my lyme literate doctor works with.

If you are fighting lyme disease I encourage you to talk to your doctor about low dose naltrexone. Maybe it will help you too! Be well!

Finding a doctor

The first struggle with this disease is finding a doctor who is Lyme literate. This may seem easy but in reality is really hard. You see because of the controversy over the disease these doctor don’t advertise as being Lyme literate. You almost need to be a detective to find a doctor! My search started with my state Lyme association. They gave me a list of doctors to try. The problem was, most doctors on the list either were not taking new patients or had a crazy long wait time for a new patient. I became very frustrated and started looking to neighboring states. I was lucky enough to find a doctor in a neighboring state that I only had to wait a month to see. Yes, it is a 5 hour drive but I was desperate. Thankfully I think I have found a great doctor!

But this needs to change. Doctors are scared to advertise that they treat Lyme and that is just wrong! Plus there needs to be more Lyme literate doctors! If only I wasn’t sick, maybe I’d go to medical school 🙂

When you are so sick, it takes every bit of energy just to do a simple thing like an internet search for a doctor. It has to be made easier.

Then challenge number two is paying to see the Lyme doctor. Most Lyme doctors do not take insurance because of the politics of the disease. My first doctor visit cost $3000.00 that I had to pay at the time of the appointment. My second doctor visit cost me $1500.00. That is a lot of money!!

What happens to the person who can’t afford to pay this to see the doctor? What is their fate? I have hope that I will get better because I can get the medication, supplements, and pay for the appointments (thanks to my wonderful husband) but what about those who can’t do that. Is this a life sentence for these people to be miserable. To my knowledge there is no foundation to help those who can not afford treatment. Maybe that will be my calling when I get well. There is always HOPE!