Is this Lyme?

Hey guys, I’m new here & new to Lyme disease. I have been dealing with symptoms for a year & a half & been tested for everything under then sun and nothing.

My story goes back years. Although I’ve only been sick for a year and a half I believe I’ve been slowly becoming what I am today. 3 or 4 years ago I was 16 when I first began to have issues. Minor issues at that.

I can’t remember exactly when it began or how it began but I just began having periods of brain fog. Most of the time at work. It seemed like when my brain was being challenged the most it would just stop working on me. It felt like mental exhaustion, like I’m not nearly as sharp.

Now this would kinda just come & go for a little while and I did go to the doctor about it but I wasn’t as concerned as I should have been. I seen a cardiologist and everything went fine. At this time I was transitioning into becoming a father, moving 2 hours away & starting a new job so I didn’t really have the time to do serious investigating. I really didn’t know it was a big deal anyways.

So, I guess I got this symptom on & off for a couple of years. A year in a half ago I finally got the call on the job I was hoping for & found a apartment quick. Things seemed to be looking great for me, I was about to start my own family & be on my own. This is when my life got turned upside down.

First day in the new apermemrt went great. I went to bed and woke up and havnt been the same since. I woke up getting this same exact foggy feeling. I wasn’t worried because I had kinds gotten use to it. But this time the symptom was chronic. From that point on my health has been decreasing quite a bit. A year and a half in & I feel like everything that could have went wrong has gone wrong.

Here’s my symptoms and abnormal tests.

Brain fog

Chronic fatigue

Daytime sleepiness

Insomnia

Unrefreshing sleep

Memory problems

Learning problems

Poor concentration

Blank stare

Word loss

Sweat very easily

Forgetful

Anxiety.. really really bad anxiety

Depression

Muscle pains, random sharp pains

Itchiness

Muscle twitch



Abnormal lab tests.

Low vitamin d

Low testosterone

High cortisol

Low vegf


I was tested for Lyme through quest and it came back negative. I did have the band 23 igg positive though.

What do you all think?

Have you spoken to a endocrinologist about the testosterone levels and high cortisol? Hormones can wreck havoc on the system if they are out of whack.

I also think that MOLD is likely what started your symptoms. That first job where you noticed the brain fog and again when you moved into that apartment.

Search the internet about CIRS. There are doctors certified in the Shoemaker protocol for CIRS. Those doctors also are knowledgeable about Lyme. The Shoemaker certified doctors are listed here: https://www.survivingmold.com/shoemaker-protocol/certified-physicians-shoemaker-protocol

There is a newer group of doctors, some of which were certified in the Shoemaker protocol, who use more than just that protocol for mold. They can be found here and are having a big conference this weekend. https://iseai.org/find-a-professional/. A good idea would be to find one near you who is going to the conference and book an appointment ASAP after the conference while new information is fresh in their minds.

This is a Lyme forum, and while most here are aware that mold and Lyme often go hand in hand, relatively few have seriously evaluated the possibility of CIRS with a qualified doctor. As a result, many are still struggling with Lyme. That is my opinion.

One thing that doctors knowledgeable about both Lyme AND mold seem to agree on is that if mold is part of the patient’s problem, it needs to be addressed and treated BEFORE trying to treat Lyme or coinfections.

I highly advise you to get an appointment with a doctor in one of those groups ASAP. I would not advise going down the Lyme road until CIRS and mold have been thoroughly accessed and addressed. Starting off on the right foot can save time, money, and loss of health in the long run. There are no quick fixes.

"It is not always Lyme, my experience with my older son is really weird, first my younger one got positive lyme but later my older son having really weird lyme kind of symptoms."

Band 23 is 'specific' to lyme - it is highly likely lyme is playing a role in the OP's issues...and probably mold.

lookingahead - we don't go by anything the CDC states.

Lots of incorrect info in that post.


IgM can remain positive much longer than 6-8 weeks after exposure.

I was positive 14 months after symptoms started...so...and my IgG was not positive.


Band 41 is the flagella of a spirochete. Lyme is likely if your son has symptoms.
Other things that have a flagella: syphillis, Pintas and Yaws, dental...(and a few more)

Lyme is a clinical diagnosis...with testing used just as a back-up to the clinical diagnosis.
Exposure, symptoms, whether or not there was a known tick bite and/or EM rash. etc.

Max01 said...
Thank you all for all the replies. What you’re saying defiantly makes sense. I am no longer living in the apartment that may have made me sick. Although, I still have the symptoms.

CIRS can be from past mold exposure. People who are susceptible are not able to clear the toxins even after getting away from the mold. It requires treatment not just removal from the contamination source. Very often, there’s also the issue of cross contamination of possessions, so you can still be exposed to the toxins from the contaminated environment if you still have possessions (including papers) that were exposed to that environment.

A knowledgeable doctor can help you sort through all that. It can be overwhelming.