I was recently diagnosed with lyme disease a few weeks ago through a routine blood test. My doctor noticed that my c-reactive protein was elevated to a 31 and went into further testing of autoimmune disorders to see where the inflammation was in the body. After completing a CD57 test, my results were 21 and she diagnosed me with what she thinks is chronic lyme disease. She stated that since my number is so low (normal is in the 300's) that I was bitten by a tick many years ago. However, I have only experienced mild symptoms such as joint pain, chronic fatigue, migraines/headaches, tingling in hands and back pain. She started me on a antibiotic protocol consisting of 6 different antibiotics: flagyl, biaxin, malarone, zithromax, diflucan, and septra. Each day the medicine schedule is different but I am usually taking 5-6 pills a day (some meds are twice a day) for 3 months. I have a 4 day break after every week of meds. My first week I was very nauseous and couldn't keep anything down, so I was prescribed zofran. I am on my second week of medicine and having really bad side effects from either lyme or the antibiotics including: blurry/cloudy vision, stomach pain/bloating, fast heartbeat, headaches, chronic fatigue, and dark-colored urine. Just wondering if anyone else has even been on a protocol like this or if anyone has any tips/suggestions on how to get past the side effects.

BritniMBC92 - Hi, and welcome to our community!

Is it a regular Dr. that has you on that protocol? Not a Lyme Literate MD?

First of all, great that you have been diagnosed...but the protocol you are on is harsh! I am concerned that you will be taxing your body too much too soon!

Biaxin and zithromax are both macrolides - the same class of antibiotics...most protocols do not have someone taking two macrolides together.
the flagyl is for the cysts
The malarone for babesia. So, did your Dr. say he/she suspects you also have babesia?
Septra with the macrolide(s) is a protocol for bartonella. Again, is it suspected you have bartonella?

So, what I'm deducing is that your Dr. is trying to treat all three at once. That is a lot to start off with.

Could you type out your medication schedule?

Also, please read through the thread titled "New to Lyme?...Start Here!" and pay particular attention to the section on detox.
You need to detox for your body to flush out the toxins that are created from the die-off of bacteria during treatment.
This is essential. Many of us do the epsom salt baths, dry brushing, drinking 8 glasses of water, plus fresh squeezed lemon in some of the glasses.

I don't want to bombard you with too much information in one post....

I was thinking the same.....Biaxin and Zith together? It sounds like a lot of meds altogether. I have a hard time with 2 at the same time. That would take it's toll on a fragile system. The dark urine is usually indicative of liver toxicity.

Brit,please see your MD again and have your liver enzymes drawn and a reevaluation of the meds. Sounds like you were started on too much, too fast. Take care.

Hi everyone!
Thank you so much for all of the helpful information. I am currently seeing a lyme literate nurse practitioner who says she treats individuals with lyme disease all over the state. An example of my schedule is this: MONDAY AM: septra, flagyl, biaxin PM: Septra, biaxin, flagyl
TUESDAY AM: septra, flagyl, biaxin PM: Septra, flagyl, biaxin, diflucan
WEDNESDAY AM: Septra, flagyl, biaxin PM: Septra, flagyl, biaxin
THURSDAY AM: Septra, flagyl, biaxin PM: Septra, flagyl, biaxin
FRIDAY AM: zithromax, malarone, biaxin PM: biaxin, diflucan
SATURDAY AM: zithromax, malarone, biaxin PM: Biaxin
SUNDAY AM: Zithromax, malarone, biaxin PM: Biaxin
I then have a 4 day break free of all medicine and start back on the monday schedule after the break.

I emailed my NP and she said the dark colored urine was common to have with antibiotics and stated the blurry vision is also common and may be a part of herxing. I am almost done with my second full week of antibiotics aside from the breaks and still not feeling great. I think getting a second opinion might be helpful! My NP was wanting to re-check my CD57 level at the end of a full month of treatment to see if there is any progress.
She didn't tell me if i had bartonella or babesia but thinks I may have had lyme disease for many years without knowing since my CD57 was at a 21.

I will definitely give detoxing a try and drink plenty of water! The dark-urine is a brown color and is typically only in the mornings.
Thanks so much!!

Britni - I am just concerned about you taking biaxin and zithromax together, as I have never seen that in any of the protocols I have read. And, you are actually taking them at the same time (a.m.)

I wouldn't be as worried, if I knew you were being treated by a LLMD. I'm not saying the nurse practitioner isn't knowledgeable - but is she ILADS trained?

I may be worrying for nothing - so I hope others chime in on that in particular (biaxin and zithro together).

I'm not concerned about the break, as many LLMD's are using the 'pulse' approach.

Also, switching the antibiotics, I think is okay, too.

I'm just wondering about: the zithro and biaxin together on the same day; and also treating lyme, babesia, and bartonella all at once.

Again, I tend to be a worry wart - so hoping others will offer their advice on that.

Hi Britni,
I too am concerned about the amount of abx that you are taking. I was infected for 40 yrs and when I tried to start treatment on full doses of meds, I herxed really badly. It was quite scary and most people stop treatments because of this. The other thing you need to be aware of is that herxing can get life threatening for some people, so we always encourage members to start off on very low doses - especially if they suspect they have been infected for a long while and leave time in between starting new meds or supplements. Usually those that have had these infections for a long while also have compromised detoxing pathways in the body - did your doc cover this with you? There are tests that you can have done to determine if you have the gene mutations that make it hard for your body to detox.

Also, did your doc cover the need for good probiotics at high doses as well? This is very important to help keep you from getting systemic candida which can stop your healing, not to mention making you feel even more miserable.

We really just want to help you make it through treatments with as little discomfort and distress as possible.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

Yes, the doctor did mention that I have the Gene mutation MTHFR C667t. That is the reason I got my blood done in the first place because my sister found out she had it. She recommended the probiotic Ultra flora balance, so I have been taking that as well. After some research I noticed that you need to take it an hour or two after taking antibiotics so the antibiotics don't kill that as well. It is hard because I am taking an antibiotic once every three hours since I couldn't tolerate taking all 3 in the morning and all 3 in the afternoon.

I appreciate everyone's advice and concerns! Sounds like I need to make an appointment with my doctor to talk about the protocol that I am on.

Yes I have been looking at several detox methods and just took an epsom salt bath. I need to go out and get a dry brush and have been trying to drink a lot of water. Is there anything specific that has really helped you? Ill look at that thread now.

No I haven't noticed an odor and haven't appeared to have any symptoms of cognitive issues or anything like that! I saw that dark-colored urine can be a side effects of many of the meds and think it might just be that. When I switched my med schedule or go on my 4 day break it is back to a normal color I've noticed.