My story

Hello,
I am new to this site. I actually stumbled into this forum when I was researching some of the weird symptoms I was experiencing before I was diagnosed. In fact, I attribute much of this site and the good advice to helping me get diagnosed relatively quickly.

Anyway, in the middle of June 2016 I started getting cold/flu-like symptoms; fatigue, clear post-nasal drip, sore throat, low-grade fever and headaches. A week or two after my initial symptoms I started getting anxiety, brain fog and blurry vision. I went to my doctor and she diagnosed me with a virus and sinus infection. She gave me some medicine but I never got better. My brain fog, which I later defined as derealization, was 24/7 and very uncomfortable, continued for weeks and weeks. I started having other symptoms pop up like sensitivity to light, feeling over stimulated, blurry vision/ double vision, eye floaters, eye sparks, tinnitus with increase and decrease in volume, awful headaches, face pain, eye pain, muscle twitching, anxiety, depression, continuous low-grade fevers, weight loss and fatigue.

I went to several different from June 2016 through September 2016.

During that time, because of my low-grade fever, I was given a round of amoxicillin and after a week I started to feel better but when I finished I immediately got bad again. That was my first clue.

I researched my symptoms, especially the derealization, and found out my symptoms were common with Lyme and co-infections. I found an LLMD in my area in the middle of September and she started me on a lot of supplements/herbs and sent my blood to Igenex for Lyme and co-infection testing. While I was waiting for my results I also had an MRI which showed lesions. My LLMD had me go to see a very good neurologist and he said my brain lesions did not look like MS lesions and were not in the correct place and were too “nonspecific.”

My LLMD had other bloodwork done which showed a low CD 57, reactivated EBV and HHV6. My LLMD also said I had POTS. My bloodwork came back from Igenex which only showed band 41 activated (which I know could mean a lot of things other than the Lyme bacteria) and I tested positive to Bartonella.

I have never had a cat scratch but I did go camping two weeks before my symptoms started. I am thinking if I got bit it was there. I never saw a tick or had a rash.

I have just finished my first two weeks of abx which consists of minocycline twice a day, mycobutin and azithromycin (pulse MWF). I am also on an anti-anxiety med.

I have also kept up my supplements including chlorella, pinella/burbur, Vitamin B, C and D, smilax, fish oil, zinc and a very good probiotic.
Since being on abx my muscle twitching has stopped and my fatigue has lessened.

My worst symptom is the brain fog/derealization.
To detox I do lemon water and foot bath 2-3 times a week.

Is it possible I could just have bart?

Does anyone know how long treatment can take?

This has been one of the most difficult experiences in my life (I am in my mid 20s) and I am hopeful I will get better one day.

PeteZa, I'm sorrry to hijack the thread but do you consider yourself healed from the two months of treatment?

Hi Jboy!
Welcome to our community! I'm so glad you found us!

In case 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. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

I would be very careful about assuming you don't have Lyme, based on testing and the symptoms you have listed. It's actually pretty common for people that have Lyme to not test positive for it, because Lyme lowers the immune function, and the testing is based on a well functioning immune system to produce those important antibodies that the tests look for.

As PeteZa said, treatment times vary widely, so no one can tell you how long it will take. Generally, Bart treatments take anywhere from 9 months to a couple of years, depending on what infections/conditions the person has, and how well they respond to treatments. It's really quite a complicated process healing from these infections.

How debilitating are your symptoms? I ask because you aren't doing much detoxing at all. If your symptoms aren't bad, then it's okay, but if you are still experiencing most of those symptoms, you definitely need to increase your detoxing.

While a sauna would be very effective, you can also use many of the suggestions on this site: www.tiredoflyme.com/detox-methods.html

You seem to have a body that detoxes fairly well, since you are doing minimal detoxing and still feeling relief of your symptoms, but you could likely benefit greatly from increasing your detoxing.

There are also some herbs you could add in if you were interested that will help.

I've been using Kudzu root and it's been helping with my brain pressure/brain fog. It's not completely cleared up by using it, but it has helped it. Buhner suggests 1/4 - 1/2 tsp of the tincture twice a day.

Buhner also says that Tryptophan will lower brain inflammation and decrease a number of psychological/physiological symptoms. The dose is 1500 mgs 3 times a day. I also use Tryptophan (and have been using Lidtke brand as they are supposed to have the most 'potent' formula/processing), and use it to help me sleep better, and it's been quite effective for that. I only take it an hour before bed though, not 3 times a day.

I would also encourage you to try Epsom salt/peroxide baths, as it's a very effect means of lowering toxin levels, but do be careful as it can move more toxins than your body can easily detox out and may cause a herx. We generally tell people to start off using only luke warm water and only stay in the water no longer than 10 minutes so you can judge how effective it may be for you.

The key is lowering your toxin levels.