Brain Lesions possible neuro lyme

New member so sorry its so long. Wondering if anyone else had similar starting symptoms or lesion's.

Four months ago out of the blue I had chest pain and a vasovagal episode that sent me to the hospital (both new for me). Released and felt good, but soon found resting chest pain in my future. All tests came back great (blood, EKG, Echo, nuclear treadmill stress test), but a odd fogginess and unexplained anxiety added itself to the picture. Soon: insomnia, heart palpitations, adrenal type rushes/racing heart, odd fatigue, weakness. I went from being able to run 15 minutes on the treadmill for their test to barely being able to walk around the yard without getting out of breath and weak (within 1-2 months).

Eventually the fatigue and weakness became so pronounced, my limbs always feel tired and heavy even after sleep and I cant do much right now. I have had off and on eye strain, head pressure, occasional itching hot skin, tremors, migrating joint pain (fingers and toes), and dizziness. I had NONE of these symptoms prior to the first chest pain and no medical problems my whole life (so far I was lucky I guess).

Tests for RA and Lyme came back negative through Quest labs about half way through. Within the same month I had another Quest labs western blot come back ALL negative in every band for both IGG and IGM, but I chose to have a third test drawn the same week through IGENEX (western blot). The Igenex IGM bands came back positive for 31, 39, 41, and 83-93 (IND for 23-25 & 34). The kicker was at the same time I had a head MRI come back showing a bunch of white matter lesions which were non specific but could be due to such things as MS, Vasculitis, Lyme, or other etiologies, etc. That's when Dr's started taking my symptoms seriously. A follow up Lumbar came back negative for Lyme by PCR and negative for bands for MS (still some tests to go though for MS).

I did find a LLMD in my area suggested from ILADS and after over a month so far of oral (Doxy 400mg), I continue to decline. I have started the second month using Doxy and Zithromax, waiting to start a week of Flagyl, but so far feeling a steady decline (not feeling any herx I believe). I had an incident where my knees got weak and ended up going to the hospital this week where my Neurologist (referred from the MRI) gave me cortisone steroids for one day which had no effect on me. I'm now stuck between being treated for LYME by the LLMD and my other Dr's who think Steroids is the better treatment for what sounds like some undiagnosed autoimmune disease. I was also told that my positive Igenex test could be from cross reactivity by the NON LLMD. More MRI's, and a Lyme test by the University of Michigan pending.. I'm particularly concerned about the unknown lesions and if any other confirmed Lyme cases have them. Any thoughts?

When I was confirmed this week through Igenex for Lyme, we did draw blood for co-infections and CD57, although the results are not in yet.

I guess skeptical just like the non LLMD's that I have seen and maybe in denial since I don't recall being bitten. The University I went to this week for a second opinion didn't say much yet as they want more "OTHER" tests as they also do not treat lyme, but they did draw more blood for Lyme (after one month of Lyme treatment). I'm not holding my breath that their Lyme test will be any different than my other three NON Igenex lab draws, but with each negative one it makes arguing the positive one more difficult.

hi joey, I do agree you have lots o neurological involvement much like I do. I have lyme and I know I have bartonella, not sure yet about babesia or erlichia. my igenex test was the one that showed I had lyme. several others were negative. before my treatment last october really started I was having all kinds of neuro symptoms burning chest back bottom of feet on my skin, headaches, big rash on my arm, insomnia anxiety, brain fog, rage attacks. etc. a lesion was also found in my spine pet scan no cancer. my llmd started me in october on azithromycin and rifampin, and buhner protocol and other supplements. I slowly started to improve but herxxed so bad for 8 months of different antibiotics I was in bed a lot. the one drug that has helped me drug wise the most is azithromycin. i can tolerate it and function.

in may of this year, I was desperate and started Iv hydrogen peroxide which put me into remission until I stopped due to financial difficulties pending divorce. off for almost 2 months many symptoms are back but lucky for me our health food lady sells oral food grade peroxide and has used it and many others in the area come to her to get it. only food grade can be taken orally. I have also learned today from my lyme that hyperbaric oxygen chamber is just as affective, another form of oxidative medicine for killing lyme and there is a pain md in my town that has one. I totally have researched oxidative medicine and feel it is one of the primary ways of killing and beating lyme. google it and research.

I had been pushing doctors and one neurologist I saw to do a MRI of my head and a spinal tap without success until I got here to my new town and home. I have a MRI of my head scheduled and my cervical spine in october and I pretty sure I will have some white matter lesions I will be shocked if I don't.

also, i have had over the last month had to take two rounds of steroids for acute bronchitis due to a leaky unit in my historic home I recently bought. I don't recommend long term steroids but small rounds should be ok. any long term use of steroids will immunosuppress any healthy person and esp would be hard on a lyme patient. be your own advocate and don't give up learn all you can. I am so sorry you have lyme but it sure looks as tho you do. it took 3 different lyme specialists to tell me I had it before I would even get serious and compliant with my treatment. I prayed it was something else. I am an outdoor person lots of horses cats dogs gardening it seems so many of us that get it are all nature lovers. and I don't remember a specific bite, but I did come down with a unknown fever high in 1994 terrible pain etc and we think that is when I got it. I had it 20 yrs before being diagnosed. I am thankful you are getting it diagnosed early and do not go thru the pain and hell I did being misdiagnosed with all kinds of diseases, polydrugged, and told I was crazy.

my llmd says my best treatment plan should include oxidative medicine, herbal protocols, rife machine, colloidal silver jackie

Are you getting copies of all these negative tests? They told me my WB was neg but when I looked at it bands 23 and 41 were positive. 23 is specific to lyme. I also had a picture of a bulls-eye rash on my back which I thought was a spider bite.
Anyway, with all those symptoms and an Igenex positive I'd spend my money on treatment rather than testing. Best of luck!

The vector borne diseases often cause oxidative stress and this can cause lesions on neurons. You need to focus on a diet filled with antioxidants and start reducing the free radicals you have been producing.

I have copies of most, the first was an ELISA that never made it to a WB (through Quest), the second (two months later) was a Western Blot with all negatives (although it was through Quest so only three IGM bands could be evaluated), the third was a PCR for DNA on spinal fluid and it just says "negative". The Last after one month of Doxy was the University of Michigans, however, I can only see "negative" online as I have not went back to see the actual paper records. U of M had all of my records, including my recent IGENEX positive test at the time of the blood draw. I would be disappointed if they only ordered the ELISA and I never made it past that one....

I'm taking the zith, doxy, flagyl combo anyways starting this month, but my fatigue, joint pain, and muscle weakness is getting progressively worse to the point where I cant walk too much. It's getting to the point where (like many) I may have to decide next week to take any MS type meds (modulators, steroids) as my local Neuro will probably recommend. When you have a bunch of lesions it makes me worry that I'm getting more each day without the right intervention, basically making the right choice harder to pick.....

I would like to know as well? I'm waiting for my cervical and thoracic MRI reviews to come back this week.

Keep in mind, the coinfection tests aren't accurate, even through Igenex. I was negative for everything, except erlichia through LabCorp. I've been clinically diagnosed with bartonella and babesia.

An LLMD will help you figure it out.