DISCLAIMER: PLEASE SEE YOUR OWN LLMD FOR YOUR OWN SPECIFIC TREATMENT. DO NOT GO ON ANY LYME PROTOCOL WITHOUT FIRST SEEING AN LLMD.
Don’t ask me how I am finding the time to write this post. Today included a whole lot of running around and much of 4 hours were dedicated to waiting rooms, blood tests, medication refills and the like. If I added up how much time I have wasted due to this nonsense, I would have been able sew a quilt the size of a football field.
Saturday morning started with us driving up to Montreal, forgetting our passports for the NY Border crossing, turning back, but we eventually made it. Tuesday I was scheduled to see LLMD. Husband and 5 year old dropped me off and headed to the mall. I was 15 minutes early. The clinic was awfully quiet. The nurse took my vitals. She mentioned to me that the wait list now is up until January 2013.
Height: 60 in
Weight: 100lb (YIKES!!!!!)
Blood Pressure: 122/88 mmHg
Temp: 98.4 F
Pulse: 78 bpm
Resp Rate: 13 rpm
As the LLMD was in with a new patient, it went on longer than usual and I waited another 25 minutes. But I was welcomed with the biggest open arms. I asked if I can record the conversation on my phone because I will most likely forget what anybody said. The conversation started with me describing the second worst herx of my life (which actually ended on the Sunday). So as we speak, I’ve been about 4 days symptom free.
We went over my symptoms:
- Burning Fingers, nausea, vertigo, drunk, head pressure, night terrors, anxiety, not hungry until moving around, all symptoms of underlying Babesia.
- Metal taste – can be due to the Clarithromycin. Also due to heavy metal exposure. I asked if I should get the (3) silver fillings removed in my teeth. I was advised this was a wise idea but to make sure it’s done with a biological dentist. Even if you have an oral dam, you will still need to have oxygen, a mask on, air expeller etc. Since you are getting better, you will minimize the risk of mercury exposure by going to the right dentist. They will also give you IV Vitamin C after the treatment. If you do it, do it right.
- Math is the first thing to go with adults and children. Even an accountant who can balance something in minutes will now take 20 minutes.
- Hormones can change because of Lyme
- Beware of drinking from plastic bottles, lotions, petroleum as they have plastics in them. Use extra virgin coconut oil.
- Colon hydrotherapy and coffee enemas. Highly recommended.
- Beware with GMO. No canola oil. Stay on a healthy organic diet.
I also typed up a list of questions for our visit which are summarized below:
Q: On the 1st and 2nd round of Pulse A and B, I did really well. On the 3rd round of Pulse B, things started to get a little worse. More cotton head, vertigo that lasted 2 weeks. One night had the shakes really badly, cold clammy, hot and cold. Was this a herx or candida flare up?
A: Symptoms get worse in the spring and fall. Was a possible herx. If it were candida, it would persist. With a herx, you will feel all these symptoms that are horrible, but they will get better. Hasn’t seen that with candida. If it were candida, they wouldn’t really get over the herx, newer symptoms would persist such as abdominal distension, trouble digesting food, coated tongue, sore throat, lots more joint pain, peri-anal itching. Yeast makes acetaldehyde, a chemical not good for the body and the liver will turn that into alcohol. As my symptoms went away, it probably wasn’t a yeast issue.
Q: Can I mix 50% alcohol teasel root, Kombucha with tinidazole.
A: No. You shouldn’t mix. Even if you dine in a restaurant, make sure you are aware of what they are marinating the meats with. Even a wine marinade will cause a bad reaction. Remember this rule applies to Metronidizole (Flagyl). Kombucha is a fermented tea, however it may not make enough alchohol to warrant a reaction. But do a quick google search just in case.
Q: How to bring up WBC levels. Should I be concerned with blood labs at all? Mine has been a steady 3.7.
A: Be happy with a 3.7. Sometimes they will come up on their own after treatment. If they fall below a 3.0, patients are taken off meds immediately. If it goes below 3, patients are required to skip a day of medication per week. Choose the same day every week (Monday) to skip. Another way to bring up WBC levels is Cordyceps, a mushroom that can support the WBC. Low WBC means chronic infection. It can be toxins or mercury, which would bring me back to the silver fillings issue.
Q: Wanting to testing 5 year old at appointment / recent Spider Bite in Sept 1 / No symptoms but diarrhea.
A: Symptoms of children are hyperactivity, but hard to diagnose because boys are hyperactive to begin with. Other signs are “my tummy hurts, “I’m tired, carry me” (on a constant basis). Treating children with Cowden Condensed Protocol and they usually do well with it. Diarreah is not typically a sign of lyme, it just means his immune system is in overdrive.
Q: Do any of your patients relapse? And if so, what is the treatment and is it quick to “bounce back”?
A: Patients do relapse. They are treated with Doxycycline and Clarithromycin and a pulse of Metronidazole just to prevent a cyst form of Lyme from popping back up. Within 4 – 6 weeks, patients improve. It’s not going to be like starting over from square one.
Q: What if I get bitten again?
A: You have no immunity. None. Nada. Be careful where you choose to vacation. It is not all about Lyme. Sandfleas can spread infection. People are coming from all over the world, they are bringing their infections and there is a greater exposure. They are getting bit my mosquitoes and sandfleas. Sandfleas are notorious for giving the bartonella infection. Beware of Cuba and Dominican Republic. Do not allow yourself be bitten. Sandfleas look like tiny grains of sand jumping. Be inquisitive. Keep watch on the beaches. Do not sit on sand. If there are not enough chairs, sit by the pool. Or better yet, sit on concrete! When on a resort, some have private beaches where there are grass. Don’t sit on the grass. Get Samento which really helps.
Q: What is the CD57 test?
A: At first when it was published, CD57 was diagnostic of Lyme. And only people with Lyme had a low CD57. However in recent discussions, patients who have low CD57 have improved, others who have high CD57 were the sickest people ever received. It doesn’t look like a fool proof answer to anything. If you want to measure it before you off antibiotic you can. Gamma Dynacare offers it in Toronto. Or you get it through Igenex.
Q: When I can think about getting pregnant?
A: Would like to prescribe Cefuroxime and Zithromax a few months before hand. And take it during pregnancy.
The best sentence of the day said by LLMD.
Be weary about trusting tests. It is not about proving it on a piece of paper. It’s about how you feel.
Treatment Plan: September – December 2012
I will be on the exact same treatment plan as I have been for the last 3 months because I’m doing really well on it. We may change it up in December 2012 or March 2013.
TREATMENT PROTOCOL #3
October 2012 – December 2012
- PULSE A: for 10 days
Clindamycin 150 mg (1 pills 4x a day)
Quinine 200 mg (2 pills a day)
Bab2 (by Beyond Balance): 23-50 drops (2x a day)
- PULSE B: for 10 days
Plaquenil 200 mg (1 pill 2x a day)
Tinidazole 500 mg (1 pill 2x a day) – Due to my intolerance of Flagyl, I’m taking this instead. Say hi to Flagyl’s sister.
Clarithromycin 500mg (1 pill 2x a day)
Rotate these 2 pulses every 10 days for 3 months.
I got my little buddy the #188 and #189 Western Blot with Igenex. LLMD’s nurse drew the blood. He was a trooper and didn’t cry at all. I will get the results in 3 weeks. If he is negative, I won’t look at the $200 as a waste of money. I will have peace of mind and also that may be a good sign for me to gauge how long I’ve had it. If he’s positive, that’s another story and a whole other can of worms.
I was also concerned about the white thrush on my tongue. I was prescribed with Diflucan, or I can go on Grapefruit Seed Extract, Fiji Tea, adding fresh organic garlic to food (raw and crushed). Garlic also stimulates the immune system, improves circulation, kills intestinal parasites and lowers blood pressure. It is a powerful antioxidant. I can also use Caprylic Acid, a fatty acid supplement derived from coconut oil and is specifically effective for killing candida overgrowth in the intestines. (should not be taken by people who have ulcerative colitis). I can also optionally start on InterFase by Klaire Lab for the treatment of biofilm.
However as LLMD prescribed me with the Diflucan, my Canadian doc thought that this was too harsh on my system so prescribed me with Oral Nystatin (shown above) for 10 days. I am not sure what to do with this so I have to read up.
I also inquired about B12 injections and so I was prescribed with syringes and stuff that needs to be purchased through a compounding pharmacy. It is for 3 times a week. I hear that a normal person would do it once a month. Great. More questions from the pharmacy. I am not exactly sure what to do with it all, but my good friend over at Lyme Maze has sent me lots of info on where and how to properly inject this stuff into your buttocks. Getting the stuff is another story.
What I did today.
We are heading to Orlando Disney tomorrow! Even though I should have been packing, I was busy for most of the day as mentioned trying to get the above prescription re-written and filled. I didn’t go to Costco this time, I went to a pharmacy beside the clinic and the pharmacist asked out of curiosity why I’m taking all these meds. I said Lyme. She nodded her head. She knew it. She had another person have the exact same thing with the US Prescriptions. She said that Lyme is very rare. I said it’s often misdiagnosed as something else and we got into the whole politics of it. She was very interested.
And I also did my monthly blood labs. I did manage to get a requisition for the CD57 blood test even with everyone scratching their heads as to what this test was about, not only the doctor, but the nurse and the medical lab person who draws the blood. They all know about the CD4 which is the HIV test. They don’t offer the CD57 it at CML Health Care, so I will need to go to Gamma Dynacare.
This past weekend out of town, my husband and I also celebrated our 12 year anniversary. Well that’s officially on paper. I have known him since I was 12 years old, which means we have been in each others lives for about 26 years. As I was sitting down about to type this post, I see a little card stuck underneath my keyboard. I opened it and the last paragraph was this. 🙂
Ok, this was a very long winded post, I will end this for now. I survived our 11 hour drive total and about $1000 gouge into my pocket in total for this round trip of meds, tests, gas, consult fees, herbs, meals. UGH!
I will reconnect with you after we have oodles of fun with Cinderella and her step sisters! There will be lots of walking, and food challenges I’m sure. Hope I survive!