Just left my appointment with my LLMD.. So unbelievably confused

It will be better to hit it hard now rather than drag it out the rest of your life like I have. I only had the minimal treatment in the beginning so every few months needed a couple of weeks of Doxycycline. Others here will give you a better idea of taking this combo, but I would say give each one a few days before you start the next to make sure if you have a problem with any of them you will know which one caused it.

Taking the antibiotics will probably cause a problem with yeast buildup so the Diflucan will be necessary to keep it down, but taking probiotics will help with that. Definitely take your probiotics, they are good for everyone. Some pharmacies give discounts on medications, you can check with the ones near you. Some of mine are less expensive than what I would pay with the insurance discount. It is worth the initial expense to knock the Lyme down asap. I have only needed Diflucan occasionally, so you might be able to stretch that one out.

I have not been to an LLMD, only read the different protocols so do not have the amount of knowledge some on the community has. It is really good that you have been able to see an LLMD, most ID doctors will not be of much help to you and may give you conflicting information. I can't begin to say how hard it has been over the years just to get a prescription for just one antibiotic. I would have done so much better with a comprehensive regimen in the beginning. I was fortunate enough to get 3 weeks of Rocephin after being sick for 2 years, though.

You may feel worse before you feel better, and this is normal also, just the process of kicking the Lyme out of your body. May you heal and be back in good health soon!

Hi Alyrose,

I tried to respond a bit earlier but had problems with the site. Anyway, I am going to say things that most people will not like.

First of all please follow your gut instinct! I also think that all those antibiotics are not good for you, personally, I don't think abx are good for anyone with one exception: those who caught it and were diagnosed early.

I know too many people that are so sick from abx yet they keep taking them for years and years. I suggest looking into herbal protocols as they as just as effective if not more effective, less side effects, less damage to one's body, etc. There are so many video's, radio shows, blogs by doctors, etc. online they you can learn so much. I always suggest buying some books such as Buhner's "Healing Lyme", Jernigan's "Beating Lyme Disease", etc. Educating oneself is empowering yourself! There is a wealth of information on the internet and if you want some links just let me know.

I'll tell you a story about me. I have been healed for 9 years and last year I had major surgery, guess what? The doctor prescribed abx for me (yeah, I took the prescription but never had it filled). Instead I ordered a botanical and I healed from that surgery fantastically! Yes, without any abx. I believe abx weaken the immune system which was the last thing I wanted.

Many people are of the mindset that if a doctor prescribes abx the doctor is right and know what he or she is doing. I strongly disagree. Most doctors don't know about herbs, detoxing, healthy diet, etc. They write scripts and feel they did their service.

I always wonder how come the ingredients of each antibiotic are not listed on the internet? Why the secrecy? The truth is abx are poisons and cause havoc to one's body. People are already sick from the lyme bacteria so why add more poisons? It doesn't make sense to me. There are better ways and better protocols.

I have a friend who had lyme for over 25 years and here are some of her words from years ago:


"I'm happy to say that I'm done with antibiotics. I have been off them for a month now, and I'm never taking them again. I am taking Dr. Jernigan's borrelogen and neuro antitox three times a day, and I am eating right and taking care of myself. I finally have my life back.

I feel pretty good, a few minor things that I have to address once in a while, but nothing I can't live with. I am definitely living my life fully and doing the things that I need to do. I can work, exercise, garden, golf, read, sing with the worship team, survive my piano lessons with my meticulous teacher, drive the kids around all day and walk the whole mall if I have to, etc.

There are two things I can't do anymore, but I don't care. One is run (jogging) I just can't do that right now because it makes my heart pound like mad, and the other is eat junk, but I don't miss that at all.

I realize now that I will likely always have lyme in my body, but I don't have to have lyme disease. I don't have to have pain and fatigue and brain fog if I regulate a few important things. The things I regulate are: my pH, my body temperature, and my diet.

Taking antibiotics for so long made my body into a war zone, and it is a battle I can't completely win. The die off and the toxins were killing me and wrecking my quality of life because of the pain. The yeast was getting a hold on me finally too, and I definitely don't want a chronic candida problem on top of everything else. Bye bye antibiotics.

I have to supplement the thyroid and adrenals because they are too beat up from 25 years of lyme having its way with me. I also take a liquid multivitamin, hemp oil, and wobenzyme. And the borrelogen and neuro antitox.

Every morning I exercise, I go in my sauna and every morning I pray to God to guide me and show me what to do to be well. That's how I start my day. Every night I have a detox bath and I use essential oils to address any aches or troubles. Oregano is my favorite oil, but it's caustic if used straight so I have to dilute it with a carrier oil like almond or jojoba. Essential oils are amazing! I have about forty of them and I use them all.

I eat live raw fruits and veggies, nuts and grains throughout the day. Uncooked means lots of enzymes and that is a great thing for staying healthy. I have some really good recipes, the food is not boring and now that I've been eating this way, I love it. I drink ginger tea, green tea, cinnamon tea, and lemon water. I eat organic foods and I don't eat white sugar or white flour. At night I eat a cooked meal with my family, but no pork and no shellfish because they are not really clean foods and I don't want to subject my body to them. No deep fried foods either.

The things I eat that I probably shouldn't but I don't really care are: organic black coffee in the morning, organic sulfite-free wine on the weekends, and organic dark chocolate (orange flavored is the best) whenever I want a treat. I know caffiene and alcohol are not so good for me, but I have these things anyway. I take extra molybdenum on the weekends when I know I'm going to have a drink. It helps get rid of the amaldehydes that are created.

This is my story, this is what's working for me right now. Everyone has to follow their own path and find out what they need and what they want to do."

Hope this sheds some light!
Denise

Alyrose, you keep talking about what others are saying to you. In your quiet times, what do you really want to do to heal from these infections? Do you feel more confident with taking the abx or treating with herbs/natural protocols? That's what counts the most. You will be doing this for YOU and not anyone else, so it's your choice.

Take a few days if you need to in order to discover what YOU really want to do to heal from these infections.

As a matter of fact, I should have said you can actually use abx and many of the natural protocols at the same time. Many here do.

and you can change your mind at any time - even if you have started using one of the protocols.

As Deejavu said - nothing is set in stone - except your need to heal.

Hi Aly,

For whatever it's worth, the four antibiotics you were given are very similar to the ones I was initially prescribed about two months ago: minocycline, biaxin, bactrim, and flagyl (every third weekend only for flagyl).

I had a serious immune system reaction to the minocycline and discontinued it after two weeks at my dermatologist's suggestion and my LLMD's consent--basically, I broke out in a very serious rash in my abdominal and pelvic area that was thick, bright red, and very bubbly and itchy. The skin texture improved completely within two days of stopping minocycline, but six weeks later the area is still a little discolored.

I was just given rifampin as a replacement for minocycline.

I understand every case of Lyme and Lyme coinfections is different, and unfortunately the best doctors can do is play the guessing game about what exactly someone has and how to treat it. It seems bartonella is my greatest problem, and the treatment is targeting it along with Lyme and babesia.

The week I began antibiotics, I immediately began to cycle through all my worst symptoms over the past years. The worst were skin rashes and skin pain, nerve pain and numbness in my feet and legs, and when those died down in about a week and a half, cognitive problems became pretty much disabling. As a professional editor, I had to fake my way through about two weeks of work. I also went semi-crazy, or felt I did, and I was in an absolute panic and paranoid ALL the time. I ended up going back on a low dose of Zoloft, as well, because both my LLMD and my psychiatrist told me that Zoloft actually works by reducing physical inflammation of the brain, thereby reducing nerve aggravation that results in anxiety--it's a physiological reaction more than an emotional one.

And the point in all of this is that two months in, all the symptoms above have improved significantly for the most part. Last week was my week-long break from the antibiotics (to give my system a rest), and by Thursday and Friday, I had extreme pain in my neck, head, shoulder, and arms, and the telltale bartonella tenderness/pressure pain in the soles of my feet as well as the palms of my hand (when walking on a hard surface barefoot, opening doors, turning on faucets, etc.).

I believe that the antibiotics are helping me, although the initial reactions were really daunting and it took a long time to start to realize I am feeling a lot better overall, albeit with good days and bad days.

People have said you should follow your instincts...I can't help but agree with that because my instincts (plus advice from some informed friends) are what got me through the labyrinth of unknowledgeable/doubting doctors. The only reason I am sharing my experiences is because our doctors prescribed similar cocktails and I am beginning to see some improvement as a result.

If you question your doctor's competence or his/her interest in your well being, then you really should follow your instinct. I was inclined to do exactly as my doctor prescribed because 1) she reviewed every single lab I've had over the past five years and asked me to tell her *everything* that I've been through; 2) when I did, she actually listened and asked questions; 3) she speaks to me as if I understand what she is talking about rather than speaking down to me; 4) she encourages me to email her, including photos of my skin rashes, and she keeps copies of these messages in my records and factors them in when maintaining therapy; 5) I have absolutely no question that she is as well informed and as competent as any doctor could be given the complexities and ambiguities of Lyme+ and 6) most importantly, she has one clear goal: to get her patients back to wellness. That's it. I've trusted her and done exactly what she has told me, and at this point I am finally feeling better than I have been for at least five years.

I also had reached "rock bottom" and have been at times truly disabled from this insane constellation of neurological, cognitive, and arthritic symptoms--so I had to take a leap of faith and trust someone. At this point, I felt like I was out of options and if taking four antibiotics and 10, 20, or 30 supplements stands a chance of getting my life back, then I was willing to try it--despite feeling essentially like an AIDS patient in the early 80s, given a bunch of drugs and a "good luck" prognosis.

So in the end, I guess all I am saying is, definitely go with your instincts about your doctor's goals and competence. IF your instincts tell you the doctor knows what s/he is talking about and has your interests in mind, then also consider whether fear or a lack of trust could be influencing your trepidation. Almost all of us have been "screwed over" in some way, either intentionally or out of ignorance, by a number of doctors before we got to this point, and it is reasonable that we second-, third- and seventeenth-guess everything every doctor says and does. Not all are quacks, though, and some really do care.

Thank you for your feedback!!! I'm looking into getting a second opinion from another LLMD. I just didn't feel connected to my LLMD. He barely payed attention to me during my appointment. He didn't ask for any of my previous labs. He made my dad feel uncomfortable, he's kind of unorganized and sloppy and that's why I'm doubting his word. It seemed like I was just another number or patient. I didn't feel like he was interested at all. So I'm looking into seeing dr. B or dr. M in Waukesha, wi for a second opinion.