This is were it gets very complicated. Lyme isn’t simple to treat. When you have cancer you see an oncologist and they may suggest chemotherapy, radiation and possibly surgery to remove a tumor and cancerous cells. But with Lyme Disease you can’t do that.
So what happen when you visit a Lyme Literate MD (LLMD) and test positive for Lyme Disease or one the co-infections?
Here is my experience:
When I finally decided that I did not agree with the diagnoses that I was given I asked my pain doctor about the possibility of Lyme Disease. Of course, since I already had the ELISA test that came back negative all the doctors assumed I did not have Lyme Disease. But since my pain doctor didn’t agree with the other diagnoses that I was given he suggested I see the LLMD in San Francisco. So October 9, 2015, I headed to San Francisco.
The Nurse Practitioner I saw suspected I had Lyme based on a her clinical diagnosis but ordered blood tests as well. She suggested I start on antibiotics before the blood tests came back. She had me start on certain antibiotics to get my body used to them and she would switch the antibiotics once the test results came back.
On November 9, 2015 the blood tests came back and I tested positive for Babesiosis, a co-infection of Lyme Disease. I tested negative for Borrelia Burgdorferi but testing positive for a co-infection basically meant I had Lyme Disease.
Antibiotics: I was on a few different antibiotics for 3 and 1/2 months and then additional blood test were run. However, after 3 1/2 months of antibiotics my stomach was ruined. Antibiotics kill the healthy bacteria in your intestines and allow an excessive growth of yeast or candida. According to Natural News “candida overgrowth can be at the bottom of headaches, acne, eczema, PMS, athlete’s foot, cancer, allergies, depression, chronic fatigue, vision problems, sinus problems, ear problems, rashes, hormonal imbalances, yeast infections, migraines, mood swings, symptoms of MS, irritable bowel symptom, constipation, poor memory, chronic pain, acid reflux and more.”
So after that I found a LLMD closer to my home and decided to get another opinion.
Early Spring of 2016, I saw another Lyme Literate Nurse Practitioner and more blood tests were run and over 10 different supplements/prescriptions/herbal formulas were recommended. Some I bought through the office and some I had to call specific companies to order. At the time I thought this new path would be great and liked the Nurse Practitioner and was told to come back in 3 months.
I tried my best to follow the protocol but it’s really overwhelming. And when you don’t feel good it makes if a hundred times worse. Then when you take stuff that kills off things in our body you get sick before you get better. I’ll explain that in another post. But when you get sicker you don’t want to continue taking so much stuff. I tried to take a lot of notes and make sure I was following everything correctly but it’s extremely difficult to manage. After a couple of visits I was really disappointed in my progress and felt I was getting worse. I ended up each visit buying more and more things and not really using them. I spent thousands of dollars with visits and “medicine” but wasn’t any better and 90% of it is not covered by insurance.
By June 2016, I realized my house might be making me sick so in August and September I decided to leave my house to test my theory. I was right. My house was making me sick and you can read more about that here.
So, once I thought I had a mold illness I searched online to see what to do. I realized that the other LLMD in my town was a mold illness specialist so I decided to see him. I went to his website and tried to follow what he recommended before the appointment. He was booked 4 months out but I got on the cancellation list and got in quickly.
By September 2016, I was following the protocol of the new doctor. He advised me to stop doing ozone which to this day I regret. Ozone has been my favorite treatment so far. Ozone (MAH) helped get rid of my Babesia symptoms not the antibiotics. But I decided that if he was going to help me I needed to follow exactly what he said.
So here I was on my third LLMD. This doctor seemed to have a better plan than the last two but still after several months I found myself worse, overwhelmed and out a lot more money. By this time, due to my declining health my husband had to drive me to the appointments. We both would take a lot of notes and ask questions only to get home and still be confused. LLMD’s are not easy to get ahold of if you have questions either. I had to fax them and then they may eventually respond. They don’t have any after hours numbers if you need to talk to someone. I find that really frustrating. When you have reactions to stuff they give you you have no one to contact to ask a question.
At the next visits he changed most everything I was taking and wanted me to buy more of his recommended stuff. It’s so frustrating! I can really see why some people think LLMD’s are a scam and quacks. They don’t take insurance and constantly run what I believe are unnecessary tests and have you buy a millions different things every time. So by fall 2016, I had a HUGE bag of stuff I had purchased but hadn’t taken. What a complete waste. I really felt that the LLMD’s were not my path to getting better. He also wanted me to do this ART testing, which I did. But once again I felt it was a waste of money. He also wanted me to do some sort of desensitizing treatment with another practitioner but because of my implant I couldn’t do it. I’m glad I didn’t spend money on that.
At my last visit with him, I was really upset when he told me several times my brain is not working and my husband needs to take over for me. And, he kinda laughed and said sometimes I have couples and both of them have Lyme and neither one can follow all of this. Let me tell you, even people with a clear mind and no brain fog would have a hard time following these protocols.
Here’s a sample of what they do:
- Take 5 drops in water from bottle A in the morning
- 15 minutes later take 4 pills from bottle B
- 30 minutes later take your XYZ medication
- 30 minutes after that take 1 drop of Bottle C
- 1 hour after that take 4 pills from bottle D
- Eat Breakfast
- 2 hours after eating take ABC supplement
That’s just the morning stuff. Then add in detoxing treatments like epsom salt baths and coffee enemas. And don’t forget to exercise too.
Healing from Lyme Disease is a full-time job
After 3 different LLMD’s I was worse and decided I needed more care and a different approach so I went to the Fach Klinik in Germany. You can read more about that here.