Does my story sound like Lyme disease. Need help finding a doctor to diagnose me!

Hello Everyone.
Here in my story. I have always been a fun loving person who just enjoyed living life. I moved to Nashville after receiving a big promotion with my job and I was on top of the world. I moved to an apartment complex that were surrounded by trees and bushes but never once thought that I may have contracted Lyme from my area.

I met a wonderful guy and gave birth to my first child in July 2012 and shortly after giving birth my life changed. A few days after giving birth, I came down with a fever and was given antibiotics after the doctor suggested it was from my recent C-section. A few days later my life changed forever. I woke up in my first of many panic attacks and felt like I was dying. I immediately told my boyfriend to take me to the er because not only did I have a sense of death but I felt like I was literally outside of my body and did not feel normal.

When arriving at the ER, my doctor admitted me for a couple of days because he stated my bloodwork was totally out of control and he didn’t know why so I was treated as if I had post-partum preeclampsia. I was given magnesium and blood pressure medicines and had to rest for 3 days before I was sent home. When I stood up to leave the hospital, my heart rate would go up to 140 just walking to the bathroom.

I finally was having a panic attack episode in the ER when I was diagnosed with a heart arrhythmia and had a cardiac ablation done. The procedure did not fully fix my issues and I was placed on beta blockers to control my heart rate and still take the pill today. After telling my doctor about all of my symptoms, he stated I just had post partum depression and prescribed me some anti-depressants. I knew something wasn’t right with my heart and new symptoms started happening each day.

Long story short, I had panic attacks at least 5 times a day and was afraid to sleep because I would wake up each time in a panic and did not know what was wrong. I had an MRI done that was normal, sinus checkups and told I only only severe sinus problems and was steady given antidepressants that were not helping. My body had a numb feeling and I was also emotionally numb and could not bond with my newborn so my mom and his dad took care of him while I was trying to figure out what was wrong with me.

Many trips to a Physiatrist and ER still no answer to what was happening to my body. I was always told it was just depression and sent home. I had facial dropping, floaters that came out of no where, loss of sensation in my body, sensitivity to light, pins and needles feeling in my feet, sharp pains throughout my body, dermatographia , frequent skin rashes constant head pressure which I still have today.

During the first week of my symptoms, I could not drive a car due to not being able to focus my eyes at all and it scared me. I received an eye exam and everything was normal and the floaters were just there now and I basically had to deal with it. I still have a feeling of depersonalization and emotional numbness till this day and it has affected my life including my relationship.

I have had night sweats where I would wake up and the bed would be soaking wet as if I poured water in the bed under me. I have low grade fevers sometimes and other times I have low body temperature. I have also constant sinus pressure, numbness in my face, hands, feet sometime that come and go. Lately, I have also had terrible pain in my hands and feet that are only getting worse. I have not felt well since 2012 when all this occurred and knew that something was wrong so here it is 2016 and I’m finally realizing that I may have lyme disease.

I want to feel normal again and not feel like I am living outside of my body. I try to put on a smile but inside I know something is wrong. I stopped telling my doctors what symptoms I was having because they did not believe that anything was wrong. The way I feel each day is not normal and if only I can get a diagnosis and test, it will help me move on so I can maybe live a normal life again.

I have two boys now and cannot do a lot of things with them because of the symptoms that now included nausea, upset stomach, joint pain and fatigue. A lot of my symptoms come and go so it makes living each day manageable but it is hard not having a definite answer as to why I am feeling this way. I now live in Memphis, TN but all of my symptoms started in Nashville. If anyone on this site knows of any Lyme doctors in the Memphis, TN area or close please contact me.

Post Edited By Moderator (Traveler) : 11/5/2016 9:40:32 AM (GMT-6)

LK16,

I want to welcome you to the forum. It has saved my sanity.

I am so very sorry that you have enduring so very much and at a time in your life when so much of your energy needs to be given to your newborn (congrats). It sounds like you may have had chronic/dormant lyme. The rapid plummet in hormones probably woke it up. I have heard several women with fibromyalgia and MS (both are usually undiagnosed lyme) say that when pregnant their symptoms all went into remission). It may have been similar for you. Please know you are very sane and all/most of your symptoms are shared by many of us. The good news is that you can now get yourself treated and go on to have a happy, full life.

I would change diet, start detoxing and building up your immune system. Find a lyme literate doctor and get tested. The tests take over a month and this is not a quick fix. But fixable.

Come on here as much as you need to and ask as many questions as you need to, we're here. The moderators on here (I'm not one) are the kindest, smartest and well versed people on lyme you will ever find.

Sending prayers to you and your family.

Huddy,

Thank you for your response. Yes, I have questioned my sanity for 4 years now and am glad to have found this site. I really don't know if I contracted it before or after giving birth to my first born but now I am concerned that If I do have Lyme, that I passed it to my smaller son because he has had a few symptoms that could be lyme as well. The first step for me is getting diagnosed so I can get treatment and someone to test both of my children to make sure I did not pass it on to them. It was the worst feeling in the world when I was a new mother and had not emotional connection to my newborn or any other person in my life. I felt like I had not emotions and was just there. I felt alone but now I am ready to do something about it. I will definitely look into a different diet and detoxing. Why does lyme testing take so long if you don't mind me asking. I thought it was just a simple blood test but regardless of how long it will take, i'm willing to wait.

Huddie said...
LK16,

I want to welcome you to the forum. It has saved my sanity.

I am so very sorry that you have enduring so very much and at a time in your life when so much of your energy needs to be given to your newborn (congrats). It sounds like you may have had chronic/dormant lyme. The rapid plummet in hormones probably woke it up. I have heard several women with fibromyalgia and MS (both are usually undiagnosed lyme) say that when pregnant their symptoms all went into remission). It may have been similar for you. Please know you are very sane and all/most of your symptoms are shared by many of us. The good news is that you can now get yourself treated and go on to have a happy, full life.

I would change diet, start detoxing and building up your immune system. Find a lyme literate doctor and get tested. The tests take over a month and this is not a quick fix. But fixable.

Come on here as much as you need to and ask as many questions as you need to, we're here. The moderators on here (I'm not one) are the kindest, smartest and well versed people on lyme you will ever find.

Sending prayers to you and your family.

So far, every symptom you have mentioned (even the disconnected from life feeling) can be explained by these infections, and the issues they create in the body. Hang in there, and find a doctor that knows more than the average one for helping you heal. Your GP, Infectious Disease docs and others rarely know enough to be of help, so I would encourage you to find a LLMD/LLND in your area to start seeing.

Serious night sweats are usually caused by Babesia, but the co-infection testing is about as poor as the Lyme testing, so you need to have clinical diagnoses, and not rely on the tests alone.

Igenex will take the time required for proper Lyme testing, allowing that this is a very slow growing bacteria that only replicates every 3 - 6 weeks, whereas other bacteria will replicate in a number of minutes or hours. So proper testing for Lyme should take a long time.

---

Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

LK16,

Try to just focus on yourself right now. Like the old airplane adage - get your oxygen mask on first then help the kids. Can you get them tested at the same time you get tested? The tests take a long time and it may ease your mind.

This is a different story but my mom was ill when pregnant with me. I was born two month premature and stayed in an incubator in the hospital for three months. She also couldn't take care of me so my grandmother and aunt took care of me for over a year. I don't remember any of it and my mom and I had a wonderful relationship. She went on to have other illnesses and operations but I remember the simple things: her singing to me, walking around holding my hand, reading to me, lying of sofa and cuddling. There is so much you can do with little energy. I have gone through mourning over not being the Mom I used to be, and my kid is 14 now (and just diagnosed). Kids love their moms - it's that simple and that powerful.

You will heal and build great memories with your family.

Thank you for all of your helpful information Traveler and your geniune concern. I am researching a LLMD in my area so I can begin the necessary testing for Lyme disease. Yes, I already know that most GP's dismiss lyme so I want to find a doctor who is willing to do all of the necessary testing and at the same time, I will find ways to help myself as well by detoxing and etc. I am so happy to have found this forum!

Traveler said...
So far, every symptom you have mentioned (even the disconnected from life feeling) can be explained by these infections, and the issues they create in the body. Hang in there, and find a doctor that knows more than the average one for helping you heal. Your GP, Infectious Disease docs and others rarely know enough to be of help, so I would encourage you to find a LLMD/LLND in your area to start seeing.

Serious night sweats are usually caused by Babesia, but the co-infection testing is about as poor as the Lyme testing, so you need to have clinical diagnoses, and not rely on the tests alone.

Igenex will take the time required for proper Lyme testing, allowing that this is a very slow growing bacteria that only replicates every 3 - 6 weeks, whereas other bacteria will replicate in a number of minutes or hours. So proper testing for Lyme should take a long time.

Huddie said...
Dacarte,

I loved reading that you feel normal 90% of the time. I live for these hopeful posts. I'm sharing with my son. Thank you!

When people write Buhner protocol what does that mean? He offers alot of choices? Does that mean you just did the major three: JK, forget the other two?

Yes. I have a bad few days every few months, but in between I feel fine, physically and mentally. I just take it easy on those few bad days. So I really take a advantage of those stretches of feeling normal.

I don't know if I'll ever be 100% symptom free and this is as good as it gets. But if it is as good as it gets, I'll take it because I know it could be much worse.

Buhner does recommend a lot of choices. So what I did is read all his newest books like 3 times and really studied the herbs, what they do, why they do it and how they do it. How they interact with each other. How they may synergize. Then I took that knowledge and created a my "own" Buhner protocol based on my symptoms. Sort of a more advance way of doing it but, doing any of his pre-made protocols that fits your infection should be helpful by itself.

---

Lyme: Igenex IFA positive and Igenex Westernblot band 31 and 41
Ehrlichia: Positive (Igenex)
Mycoplasma: Positive (Labcorp)

ABX Treatment: 03/2016-04/2016
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Present

LK,

The CNS symptoms went away first for me. Which was great because, it's one thing to have weird, unpleasant physical symptoms, but it's much worse to have Lyme mess with your mind.

So I hope it's the same for you.

As far as visual symptoms, yes I experienced looking at a dimly lit wall and seeing dark tiny spots that made it look like a spider or bug was on the wall (of course it wasn't).

I also experienced a shawdowy figure in my peripheral vision. I read why lyme causes this particular symptom but can't remember off the top of my head. Also comet tails, like when you look a street lamp or your phone and move your eyes and the light will have a comet trail.

---

Lyme: Igenex IFA positive and Igenex Westernblot band 31 and 41
Ehrlichia: Positive (Igenex)
Mycoplasma: Positive (Labcorp)

ABX Treatment: 03/2016-04/2016
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Present