Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Wednesday, October 03, 2012

My Medications and Supplements

I've been on treatment for 16 months now.  One common question I am asked is what medications and supplements I have been prescribed during this time, so I will list them for you here.  I have often found it helpful to see what medications and supplements other people have been on.

Please note that I am not endorsing any particular treatment for any particular individual.  You need to have your health monitored by a Lyme-literate medical doctor. 

Different doctors have different philosophies.  Some are more aggressive in their treatments than others.  The first LLMD I saw prescribed 5 antibiotics for me at one time.  My next LLMD preferred to go the 'slow and steady' route by prescribing one antibiotic at a time.  Other LLMDs add herbals into the mix. 

If there is anything I've learned, it's that there is no one 'recipe' for treating Lyme disease.  Oh, wouldn't it be GREAT if there were?  Perhaps one day.  For now, everyone's situation is different, and everyone responds differently to the current treatment options.  Some people do just fine on oral antibiotics, whereas a small percentage do need the stronger IV meds to see improvement.  Thankfully, I believe that doctors are favouring oral meds over the IV, and are finding that the oral meds can be just as effective in many cases.

My Medications (This list will be updated regularly.)


1. June - Aug. 2011 (2.5 months)

- Doxycycline (100 mg, 3 times daily)
- Nystatin 500 000 unit, 1 tablet once daily (To control yeast)
 
2. Aug. - Sept. 2011 (1 month)
 
- Cefdinir 600 mg, once daily
- Nystatin
 
3. Sept. - Nov. 2011 (2.5 months)
 
- Suprax 800 mg, once daily (This is a 3rd generation cephalosporin just like Cefdinir.  I switched because my insurance wouldn't cover Cefdinir.  Suprax is not available in the U.S. but is available in Canada.)
- Nystatin 500 000 unit, 2 twice daily
 
4. Dec. 2011 - Mar. 2012 (3.5 months)
 
- Suprax 800 mg, once daily
- Flagyl 250 mg, twice daily
- Nystatin
*At some point during your treatment, you may be prescribed Flagyl.  It is an antibiotic that can treat Borrelia (the Lyme bacteria) in the 'cyst' form.  Other antibiotics can't kill it in this form.  Expect to experience a herxheimer reaction on this med. 
*I started with a very small dosage of Flagyl and slowly worked up to the full dosage.
*I had some intestinal issues and had to go off Flagyl for a time in Dec., but started up again in Jan.
*In Jan., Suprax was reduced to 400 mg once daily due to slightly elevated liver enzymes.
*In mid-Feb., I stopped the Suprax due to increasing liver enzymes, but remained on the Flagyl.
*It turned out that it was the Flagyl that was causing the elevated liver enzymes, so I discontinued that in March.  It took a few months for my enzymes to return to the normal range.
 
5. Mar. - Apr. 2012 (1 month)
 
- Minocycline 100 mg, once daily
- Nystatin
 
6. Apr. - July 2012 (3 months)
 
- Minocycline 200 mg, once daily
- Nystatin
 
7. July - Oct. 2012 (3 months)
 
- Zithromax 250 mg, twice daily
- Plaquenil 200 mg, once daily (It was reduced from twice daily because I was getting tingling in my foot.)
- Diflucan 200 mg, once weekly (To control yeast)

8. Jan. - June 2013 (6 months)

- Zithromax 250 mg, twice daily
- Nystatin
- Banderol and Samento (starting in March 2013)

9. July - August (2 months)

- Minocycline 200 mg, twice daily
- Nystatin
- Banderol and Samento

10. Sept. 2013 - ???

- Minocycline 200 mg, once daily
- Nystatin
- Banderol and Samento

I plan to stop the antibiotics by the end of October 2013, but stay on the Banderol and Samento as a preventative measure.
 
 Other Medications
 
- I took Lyrica for the vibrations in my head, from March - Sept. 2011.  It was a HORRIBLE drug, and I will NEVER take it again!!!  Obviously it is a great help to many, especially those with fibromyalgia, but it does list depression as a side-effect.  That is what happened to me.  I became so out-of-control emotional while on this drug.  I had uncontrollable crying spells that I couldn't understand.  I finally decided to go off the drug and the depression and crying spells stopped.  So....do watch out for this side-effect.
- I also took Imovane for sleep for over a year.  I was so concerned that I would never get off of it, but I was able to by cutting back my dosage very slowly, over many months. 
 
Supplements
 
Here is what I take daily:
 
- Digestive enzymes with each meal
- B6 (200 mg daily, in a divided dose)
- CoQ10 (150 mg daily)
- Vitamin D (4000 mg daily, in a divided dose)
- Vitamin E (400 mg daily)
- Omega 3 (1 capsule with each meal)
- Alpha lipoic acid (600 mg daily, in a divided dose)
- Green tea capsule (300 mg)
- 1 Multivitamin
- 1 B Complex
- Vitamin A (10 000 mg)
- Zinc (25 mg)
- Vitamin C (2000 mg daily, in a divided dose)
- Magnesium (250 mg daily)
- Iron (high dose capsules, 1 twice daily)
- B12 shots (Can be done up to once daily for energy, but I've been doing it about once or twice a month lately.)
- Probiotics:  acidophilus, s. boulardii (the refrigerated kind) *So very important to take those probiotics, at least 2 hours after your antibiotics.  I take them at bedtime.  Please click on the 'Comments' below to learn more about the importance of probiotics.

And click here to see how I organize all of this stuff!

It seems very overwhelming at the start, but honestly, you do get accustomed to this.  It will just become part of your daily routine, because you have no choice.  I really hate having to take all of these pills every day, at every meal, but I suppose it's a small price to pay for my regained health!   

5 comments:

  1. Thanks for the list. I like to see what other people have taken.

    I hear ya about the Lyrica! HORRIBLE DRUG for me too!! I got suicidal on it, and my doc's reaction was to increase my antidepressant. I took myself off of it VERY slowly (I told my doc I was going too) and had really bad withdrawal symptoms, but got through it and felt better emotionally. I was able to get off my antidepressant after that too.

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    1. Yes, it's curious how some doctors just don't recognize the side-effects of some drugs. My GP decided to increase my antidepressant, too! My sleep doctor, whose background is psychiatry, knew immediately that depression/crying spells were a potential side-effect of Lyrica. Thankfully, I figured it out and got off it, and I then felt much more normal emotionally.

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  2. "Probiotics: acidophilus, s. boulardii (the refrigerated kind) *So very important to take those probiotics, at least 2 hours after your antibiotics. I take them at bedtime."

    Can you elaborate why we need to take probiotics when we tool antibiotics?

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    Replies
    1. The antibiotics kill ALL bacteria, even the GOOD kind that reside in your intestines. With the good bacteria gone, that can leave you susceptible to things like candida, and worst all, c. difficile (which can be deadly). The purpose of the probiotics is to replace the good bacteria and hopefully prevent these things from happening. It's important to get a really good quality, and high dose, probiotic. And s. boulardii is particularly important for warding off c. difficile. The acidophilus I take has 50 billion bacteria, and the s. boulardii has 10 billion. When I was experiencing diarrhea, my naturopath told me to double up on the probiotics - to 100 billion! They are expensive, but necessary. Hopefully, when I'm off the meds, I can cut back to a lower dosage and save some money.

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    2. Thanks for the great link, Christine! Dr. Mercola is great. To others reading this, be sure to click on the 'probiotics' link in Christine's comment.

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