Saturday, January 31, 2015
Search for the RIGHT Doctor
The doctor who found my Lyme disease is unfortunately not the doctor I want to treat me. Although I'll be thankful for him forever for being one of 20-30 medical professionals to look into Lyme for me, he's a little off putting as far as bedside manner. He takes my insurance and is local, but I'm not entirely sure he's Lyme Literate. He literally googled treatment for Babesia right in front of me. He also casually brushed off my Herx questions (horrible episodes experienced when Lyme bacteria die). He said, "Uh, yeah. You'll want to call us, and we'll probably have to walk you through that". Sure pal. Herxing is TERRIFYING. So, he wrote up 3 prescriptions for me. 2 antibiotics and 1 probiotic. He said I could do those orally 3 times a day for 10 days, come in every day for antibiotic IVs, or get shots. I told him I would think about it, but the truth is, I believe short term antibiotics are a recipe for failure. It's everywhere in all my research. So, I am going to search for other options.
Friday, January 30, 2015
Lab Results
These lab results are so complicated, but I wanted to share what they look like. Mine show "Borrelia surface proteins" (evidence of spirochetes hiding in my tissues), and flat out positive, active Babesia infection. So, two different kinds of tick bite bacteria. Babesia is a malaria-like parasite that infects red blood cells. Also, a spirochete is a cork-screw like organism that digs into whatever it wants in the body, and wreaks complete havoc. The LAST thing I would want to study is microbiology. Unfortunately, I HAD to in this case because evidently, the majority of doctors just don't with this disease. I also studied the complete anatomy of the pelvis, which is not something I would be interested in doing, either.
IGENEX
When my doctor told me I sounded Lymey, he said there is a test we can do, but it's expensive, and takes weeks to get the results. I said I would think about it, and give him a call.
So, I went home a researched more on Lyme disease and everything started coming together. Everything started to make sense, and I kept finding stories of more and more people just like me! So I called my doctor, and told him I wanted to do the test. So, he said I could come in anytime and get my blood drawn. I literally showed up at his office within the hour.
I wanted to mention a little miracle that happened (one of many) as I went to get my blood drawn. The MA brought in the needle, viles, and paperwork to get my blood for the test. She put the paper in front of me and said, "Ok, it's going to be $1,140.00 UP FRONT". My eyes bugged because I expected to get a bill, and do a payment plan. She said if I didn't put my bank info down, the lab would refuse to run the test. Now, the ONLY reason I was able to put my bank info down was because we were generously given cash on Christmas from people who knew we were struggling with medical bills, and the amount that was given to us (not even a week earlier) was the EXACT amount needed to run the test. #ibelieveinmiracles
So, the test was sent off, and I spent the next four weeks with no plan, no treatment, no doctor's orders, no nothing. I just sat in limbo, and researched Lyme disease. I also learned the only lab you should use for Lyme testing is a lab in California called Igenex. I got really worried that mine was sent elsewhere but my fears went away when I looked at my online bank account and saw IGENEX pending charge. That also helped me to know that they did receive my blood, and they did run the test.
There are other unreliable tests that most doctors do at their offices. One is called the ELISA. I did have one done but it came up negative. I have learned that almost all of those tests come up negative 'cause Lyme disease hides from those tests. IGENEX is much more thorough.
As I continued to wait for my results, I learned so much on the internet every day. I believed more and more that I had Lyme disease. I went from 50% sure, to 75% sure, clear up to 95% sure. I wanted to tell everyone, but I have announced so many things on Facebook so many times when I thought I finally had my answers and then I didn't. I'm pretty sure people have unfollowed me because I've been annoying about my health or just started flat out bumming people out.
Finally, after lots of issues at the doctor's office (faxing problems, phone number problems, etc), my results were in and I miraculously snagged an appointment to go over them in less than 24hrs (the doctor was booked out a week but they had a cancellation RIGHT before I called).
So I go in and said a prayer and in came the doctor with my long awaited, life changing results:
"Well, your results show that you DO have active Lyme bacteria".
So, I went home a researched more on Lyme disease and everything started coming together. Everything started to make sense, and I kept finding stories of more and more people just like me! So I called my doctor, and told him I wanted to do the test. So, he said I could come in anytime and get my blood drawn. I literally showed up at his office within the hour.
I wanted to mention a little miracle that happened (one of many) as I went to get my blood drawn. The MA brought in the needle, viles, and paperwork to get my blood for the test. She put the paper in front of me and said, "Ok, it's going to be $1,140.00 UP FRONT". My eyes bugged because I expected to get a bill, and do a payment plan. She said if I didn't put my bank info down, the lab would refuse to run the test. Now, the ONLY reason I was able to put my bank info down was because we were generously given cash on Christmas from people who knew we were struggling with medical bills, and the amount that was given to us (not even a week earlier) was the EXACT amount needed to run the test. #ibelieveinmiracles
So, the test was sent off, and I spent the next four weeks with no plan, no treatment, no doctor's orders, no nothing. I just sat in limbo, and researched Lyme disease. I also learned the only lab you should use for Lyme testing is a lab in California called Igenex. I got really worried that mine was sent elsewhere but my fears went away when I looked at my online bank account and saw IGENEX pending charge. That also helped me to know that they did receive my blood, and they did run the test.
There are other unreliable tests that most doctors do at their offices. One is called the ELISA. I did have one done but it came up negative. I have learned that almost all of those tests come up negative 'cause Lyme disease hides from those tests. IGENEX is much more thorough.
As I continued to wait for my results, I learned so much on the internet every day. I believed more and more that I had Lyme disease. I went from 50% sure, to 75% sure, clear up to 95% sure. I wanted to tell everyone, but I have announced so many things on Facebook so many times when I thought I finally had my answers and then I didn't. I'm pretty sure people have unfollowed me because I've been annoying about my health or just started flat out bumming people out.
Finally, after lots of issues at the doctor's office (faxing problems, phone number problems, etc), my results were in and I miraculously snagged an appointment to go over them in less than 24hrs (the doctor was booked out a week but they had a cancellation RIGHT before I called).
So I go in and said a prayer and in came the doctor with my long awaited, life changing results:
"Well, your results show that you DO have active Lyme bacteria".
100+ Symptoms
Most my friends and family think I have only been suffering from injury pain, but this is what I have really been going through. That's why I rarely leave my house, and if I do, I put on a happy face. I am a very positive person, but it's too hard to hide everything from everyone so I just stay in my room. I also don't want anyone to feel bad for me, and I really don't want to bum anyone out.
Anyway, I wanted to list EVERYTHING in hopes that someone suspecting Lyme disease will find this and get properly diagnosed and treated. I would have never, EVER known what was wrong with me without other people listing their symptoms on blogs and forums across the internet. Some days are worse than others, as Lyme symptoms come and go, change, overlap, etc. Lyme mimics hundreds of other conditions because it can hurt the body where ever it wants and however it wants. Only a couple of these symptoms can be attributed to my injury, but they could occur even without an injury. And yes, there have been times when I have felt every single one of these symptoms at the same time. Luckily that's rare and I'll only experience about 50 at a time. All of them wax and wane (come and go), which is such a classic symptom of Lyme Disease. I've literally had moments where I felt 60% healthy and moments where I felt 10% healthy. Usually I will see others in person like neighbors or go to church when I'm having an ok moment, but those moments never last. People would say, "You look like you're doing better!" and I try to just always say, "I'm ok". That's the safest word to use with all the horrible ups and downs that come and go at any moment. One day I was doing so well that I was able to take family pictures with my husband and son, and I looked like a totally healthy person. Nobody would have ever known I was chronically ill and injured.
100+ Symptoms
Burning toes
Cracking toes
Numb toes
Toes curling involuntarily
Spastic foot arch
Falling Arch
ACHILLES pain
Rolling, popping tendons in feet
Foot cramps
Freezing feet and hands
Popping, painful, burning knees
Sore heavy burning legs
Muscle twitching crawling spasms
Blotchy skin white purple red
Poor response to hot bath/shower
Poor circulation
Burning trochanteric
SEVERE SI JOINT DYSFUNCTION
Heavy hip pain
Sharp pelvic pains
L5 pain
Iliolumbar pain
Piriformis syndrome
Neuropathy
Swelling
Sacrotuberous ligament pain
DAILY DIARRHEA
GASTRITIS
No appetite
GAS
Liver, Gallbladder, Kidney, and Stomach Pain
EXCESSIVE burping
Mid back pain
Upper back pain
Left hand doesn't work right
Problems with dexterity
Finger tips sometimes white
Elbow issues, burning pain
Pain in old injuries in wrists
Popping wrists
Burning arms
AIR HUNGER
HEART PALPITATIONS, heart skipping beats, RHR 100+
Chest pain and pressure
Shoulder blade popping, pain
SEVERE STIFF NECK (could NOT move it for days at a time)
Left salivary gland issue
Left neck tendon issue
Pain at base of skull
Facial and scalp tingling
Head pressure
Head involuntarily shaking "no"
Head bobbing
Ear pain and pressure
TINNITUS
Cystic acne
JAW dysfunction and pain
Trouble swallowing
Crawling tingling burning tongue
Twitching numb tongue
Teeth marks in tongue
Stuttering speech
Word finding trouble
Brain fog
Panic attacks
Anxiety
Depression
Left eye feels weird, drooping, pain
Worsening vision
Burning eyes
Eye floaters
VERTIGO
Motion sickness
SENSORY OVERLOAD
Light/sound sensitivity
Bruising
Slow wound/injury healing
Full body tremors/vibrating/shaking
Flu symptoms
Extreme reaction to liver detox
React strangely or not at all to meds and supplements
Bad weather exasperates symptoms
Low blood pressure-Borderline hypotension
No coping mechanism for stress
FATIGUE
General weakness
No strength or stamina
WEIGHT LOSS
Nightmares
Insomnia
PMDD
Poor tolerance to heat/cold
Muscle atrophy
Bad temper (Lyme rage)
A burning, falling feeling upon waking
HASHIMOTOS
Food sensitivities
HIGH morning cortisol
Low iron storage
Low vitamin D
Thyroid on low end
Difficulty reading, writing, typing
Severe response to steroids
Symptoms of MS, Autism, Fibromyalgia, Adrenal Fatigue, etc
Timeline to Lyme
My Lyme story could have started when I was around 10 years old, when my mom found a swollen tick on the back of my neck as she was blowdrying my hair in the mid 90's. It could have started when I lived in Virginia with my husband in 2010 (we were surrounded by ticks and should have been more careful), but something definitely started in September of 2013 after I got home from a trip to Lake Powell. While we were there, being the rowdy goof that I am, I jumped off a picnic table and landed very hard and very awkwardly. It hurt at the moment, but didn't really hurt until 3 days later when I got up from my chair at work. Thus began my search for what was wrong, and how to fix it. Little did I know that soft tissue injury (and really any stressful, painful event) can trigger a dormant Lyme flare up (I believe the bacteria had been hibernating in my tissues and was released upon injury, and just spread).......
September 2013: Went to a chiropractor because I thought my leg was out of it's socket, but he failed to put it back in.
October 2013: Went to Urgent Care where I was given Prednisone for suspected inflammation, but was horrified at my reaction to it (I learned later you should NEVER EVER take steroids when you have Lyme, but I didn't know either at the time). I had a full blown panic attack, and thought I was going to pass out. It wasn't a panic of the mind, but a panic of the body. It was the strangest, scariest thing I've ever felt. Like a migraine aura. My legs went very weak, and I did not know what was happening to me.
November 2013: I started having horrific, searing pain on the sides of my hips and down my legs. If my baby boy (who was 1 at the time) put his hand on my leg, or if my 2 dogs ran across my lap, it caused this horrible feeling like after your leg has fallen asleep. Not the pins and needs feeling, but the twisting, sensitive muscle feeling. So I went to my family doctor and he ordered an MRI which found joint effusions (swelling in the sacrum joints), a minor bulge in my L5 disc, and neuritis on my L5 nerve root (inflammation). So I thought all this swelling from my injury was causing neuropathy and we just needed to get it under control. So I went to a spine specialist who injected cortisone into my nerve root and sent me on my way. I won't go into the horror of that experience but again, stay AWAY from steroids if you have Lyme. So the shot didn't help and actually made me worse, so they kicked me out and sent me to physical therapy where they found my pelvis was twisted. They had me do one tiny exercise and all hell broke loose. So, I left that place and did NOT go back. I went to another chiropractor who diagnosed me with trochanteric bursitis (swelling pillow things under my hips). He also said I had lumbar subluxation (rotated pelvis), so he gave me a classic chiropractic adjustment. That made the burning pain flare up so bad I didn't know what to do with myself. It was uncontrollable, indescribable, and unbearable. So next time he tried a little activator device to correct my pelvis, which made it so I could not walk for 3 days! Finally he resorted to me laying on blocks for 5 minutes plus heat, ice, and electrical stimulation therapy (EStim) where he put little electrodes all over me to try and help with pain and inflammation. When NONE of that helped, he gave me an SI belt to stabilize my joints, which actually did help. But after a month or 2 of going to him three times a week at $50 a visit and only 10% improvement, I was done. Pretty sure he was, too. He said my hypersensitivity was too unusual.
December 2013: So I decided to try heading down a more natural path and decided to pursue acupuncture. I did three sessions once a week for three weeks and of course, ZERO improvement. My pain got really bad AGAIN so I just decided to go to the ER where they did a second set of MRI's which showed ZERO inflammation! Everything that appeared on my first set was completely gone and yet I was worse?? They did a CT scan, too, and found nothing but a ruptured ovarian cysts which I guess I didn't feel because the rest of the pain was way worse. So I went to my family doctor and asked if he could just give me a prescription to calm me down and help my pain so I could go back to work. So he gave me Ativan and Tramadol (benzo and opiate) and sent me on my way.
January 2014: Being mildly medicated, I was able to go back to work, but had no idea what was wrong with me. I was a young, athletic, vibrant 27 year old and a co-worker actually saw me walking in front of our work and thought to herself, "Who is that old lady hobbling?".
February 2014: As I googled for answers as to what was wrong with me, I found a nerve pain treatment called Calmare, where they hook you up to electrodes 5 days a week in an attempt to scramble nerve pain signals being sent to the brain. So I was driven to that place every day except weekends for an entire month and it actually did work to an extent. I didn't realize I had neuropathy in my arms, hands, and face until the electrodes took it away. But unfortunately, toward the end of the treatment I started getting worse, which was strange and not supposed to happen. The doctor then tried homeopathic injections into my pain site, tried K laser treatments, homeopathic topical anti inflammatory creams, and even gave me orthotics to see if it would help stabilize my pelvis, which I guess it did to an extent, but nothing else helped. He tried a few chiropractic adjustments on me, too, but again, they did not help.
March 2014: At this point I decided to come off the Ativan and Tramadol because they just didn't really help and I heard bad things about them if you take them long term. So I started tapering my doses and then stopped them. That's when the worst of the worst happened. What I thought was full blown drug withdrawal (like what heroin addicts go through), was actually a Herx reaction (which I wouldn't learn about or realize until almost a year later). I have never experience such agony or torture in my life. It was similar to what the Prednisone did to me, but worse. My brain, my body, everything was affected. So, I had to leave my job and go on unofficial medical leave. I started researching detoxing and got together with an old friend who sold DoTerra essential oils. She helped me and coached me and gave me comfort and I did show a little improvement. I started taking Glucosamine, MSM, & Chondroitin in addition to the oils and was using a topical salve which helped a little, too.
April 2014: I showed minor improvement and was able to get through my son's 2nd birthday party, but was still pretty crippled and felt a little brain damaged. I found a chiropractor just behind my house (I don't know why I didn't notice them before), and started trigger point therapy and very minor chiropractic adjustments. They also gave me KT tape, but that caused a bizarre flare up of nerve pain, which, again, was unusual and unheard of (if only I had a nickel for every time a doctor called my response to pain unusual).
May 2014: I started taking Natural Calm Magnesium which helped me a little bit. I felt I was getting better. I had detoxed, and my new chiropractor was pretty good at getting my si joints to stay in place. But I really started to wonder why on earth a healthy, athletic girl would not heal! I started googling Thyroid and Adrenals and Hormones and decided to go see a Naturopathic Dr. I did a consultation with her but she asked for way too much money up front, so we found another doctor who was closer to our home and took our insurance. He dealt with thyroid/adrenals/hormones, etc. So we went to him and he suggested I try Prolotherapy to see if it would cure my supposed ligament damage (We thought the sacrotuberous and illiolumbar ligaments were the culprits). So we did one round and I literally thought I was going to DIE from pain. Every time I think I've felt level 10 pain, I was always proven wrong. It felt so unethical that someone would shove GIANT needles that deep into injured ligaments with ZERO pain meds, anesthesia, etc.
June 2014: After a couple weeks of "recovering" from prolotherapy, I returned to the doc to update him. I told him I was maybe 10% improved which, AGAIN, was UNUSUAL. So we decided to try it again because he thought maybe I needed something stronger. So he mixed my own blood into the injections and tried again. This was SO much worse and I thought I was going to have a stroke or a heart attack from the pain. I was screaming and I'm sure the whole building heard me. He literally had to stop in the middle because I thought my whole body was going to give out. So he sent me home and I threw up. I called him and asked him if this was typical because I rarely throw up. He said I had the flu because that was an unusual response so he didn't think it was from the injections.
July 2014: After I "recovered" from the second round of Prolo and it still did not help, the doc ran a bunch of blood tests and found I had low thryroid and put me on thyroid meds. You can guess what happened. I had another full blown episode! I just decided whenever my body freaks out, I would call it an "episode". A panic attack of the body. Not the mind because at this point I had pretty much become numb and apathetic and was anything but anxious. I'd been through so much torture, I just decided to turn my emotions off. I found another chiropractor who specialized in ART technique but after our consultation he flat out told me he could not help me.
August 2014: I decided to leave the prolo/thyroid doctor and went to an endocrinologist who told me I was not hypothyroid, but had Hashimoto's. I thought this was it. This was why my body wouldn't heal. So I went on a strict diet and started taking supplements to try and heal my body.
September 2014: As I dieted and took supplements, I googled some more about pelvis anatomy and thought maybe my c-section scar had something to do with the problem. So, I flew to Colorado to meet with a physical therapist who specialized in the pelvis. She was absolutely wonderful and did find some ailments and actually did push everything back where it went. BUT, unfortunately, it did not stick. I came back home and found a similar physical therapist but was only able to go to two sessions because my neuropathy was flaring so bad that we weren't able to accomplish anything.
October 2014: So my new Hashimoto's doctor had me do a liver detox, and you can guess what happened. Except this was even WORSE than all the other episodes! And AGAIN, he said this was a very unusual response to a liver detox. Especially since all the bloodwork he did was perfect besides Hashimoto's and a sluggish liver. It felt like supposed drug withdrawal all over again. It got so bad that I went to the ER AGAIN and OF COURSE, they found NOTHING. How can someone feel like they're dying, yet medical professionals can't find anything wrong? When I say episode, I mean full body symptoms of distress.
November 2014: Despite my horrible response to my new doctor's program, I wanted to persevere. He found Hashimoto's when nobody else did, and I invested a lot of money, and I was not a quitter. I also am very level headed with high pain tolerance but nobody would believe that considering my response to everything I try. I went to my gynecologist and another spine specialist just for kicks at this point and they found....you guessed it.....nothing.
December 2014: As I started to experience more and more horrible symptoms, my new doctor finally kicked me out of his program and gave me a refund. He refused to run any more tests and probably just labeled me as a hypochondriac. I just was not responding to his program, which was beyond strange because he had helped thousands of people just fine. I was just a black sheep problem child. So I went back to the Prolotherapy Naturopathic doctor and he ran a couple more tests which turned out normal and at this point I didn't know what to do. I could not drive. I could not take care of my son by myself. I could not work. I was useless.
Until that doctor said the words.........."Your presentation sounds very Lymey".
September 2013: Went to a chiropractor because I thought my leg was out of it's socket, but he failed to put it back in.
October 2013: Went to Urgent Care where I was given Prednisone for suspected inflammation, but was horrified at my reaction to it (I learned later you should NEVER EVER take steroids when you have Lyme, but I didn't know either at the time). I had a full blown panic attack, and thought I was going to pass out. It wasn't a panic of the mind, but a panic of the body. It was the strangest, scariest thing I've ever felt. Like a migraine aura. My legs went very weak, and I did not know what was happening to me.
November 2013: I started having horrific, searing pain on the sides of my hips and down my legs. If my baby boy (who was 1 at the time) put his hand on my leg, or if my 2 dogs ran across my lap, it caused this horrible feeling like after your leg has fallen asleep. Not the pins and needs feeling, but the twisting, sensitive muscle feeling. So I went to my family doctor and he ordered an MRI which found joint effusions (swelling in the sacrum joints), a minor bulge in my L5 disc, and neuritis on my L5 nerve root (inflammation). So I thought all this swelling from my injury was causing neuropathy and we just needed to get it under control. So I went to a spine specialist who injected cortisone into my nerve root and sent me on my way. I won't go into the horror of that experience but again, stay AWAY from steroids if you have Lyme. So the shot didn't help and actually made me worse, so they kicked me out and sent me to physical therapy where they found my pelvis was twisted. They had me do one tiny exercise and all hell broke loose. So, I left that place and did NOT go back. I went to another chiropractor who diagnosed me with trochanteric bursitis (swelling pillow things under my hips). He also said I had lumbar subluxation (rotated pelvis), so he gave me a classic chiropractic adjustment. That made the burning pain flare up so bad I didn't know what to do with myself. It was uncontrollable, indescribable, and unbearable. So next time he tried a little activator device to correct my pelvis, which made it so I could not walk for 3 days! Finally he resorted to me laying on blocks for 5 minutes plus heat, ice, and electrical stimulation therapy (EStim) where he put little electrodes all over me to try and help with pain and inflammation. When NONE of that helped, he gave me an SI belt to stabilize my joints, which actually did help. But after a month or 2 of going to him three times a week at $50 a visit and only 10% improvement, I was done. Pretty sure he was, too. He said my hypersensitivity was too unusual.
December 2013: So I decided to try heading down a more natural path and decided to pursue acupuncture. I did three sessions once a week for three weeks and of course, ZERO improvement. My pain got really bad AGAIN so I just decided to go to the ER where they did a second set of MRI's which showed ZERO inflammation! Everything that appeared on my first set was completely gone and yet I was worse?? They did a CT scan, too, and found nothing but a ruptured ovarian cysts which I guess I didn't feel because the rest of the pain was way worse. So I went to my family doctor and asked if he could just give me a prescription to calm me down and help my pain so I could go back to work. So he gave me Ativan and Tramadol (benzo and opiate) and sent me on my way.
January 2014: Being mildly medicated, I was able to go back to work, but had no idea what was wrong with me. I was a young, athletic, vibrant 27 year old and a co-worker actually saw me walking in front of our work and thought to herself, "Who is that old lady hobbling?".
February 2014: As I googled for answers as to what was wrong with me, I found a nerve pain treatment called Calmare, where they hook you up to electrodes 5 days a week in an attempt to scramble nerve pain signals being sent to the brain. So I was driven to that place every day except weekends for an entire month and it actually did work to an extent. I didn't realize I had neuropathy in my arms, hands, and face until the electrodes took it away. But unfortunately, toward the end of the treatment I started getting worse, which was strange and not supposed to happen. The doctor then tried homeopathic injections into my pain site, tried K laser treatments, homeopathic topical anti inflammatory creams, and even gave me orthotics to see if it would help stabilize my pelvis, which I guess it did to an extent, but nothing else helped. He tried a few chiropractic adjustments on me, too, but again, they did not help.
March 2014: At this point I decided to come off the Ativan and Tramadol because they just didn't really help and I heard bad things about them if you take them long term. So I started tapering my doses and then stopped them. That's when the worst of the worst happened. What I thought was full blown drug withdrawal (like what heroin addicts go through), was actually a Herx reaction (which I wouldn't learn about or realize until almost a year later). I have never experience such agony or torture in my life. It was similar to what the Prednisone did to me, but worse. My brain, my body, everything was affected. So, I had to leave my job and go on unofficial medical leave. I started researching detoxing and got together with an old friend who sold DoTerra essential oils. She helped me and coached me and gave me comfort and I did show a little improvement. I started taking Glucosamine, MSM, & Chondroitin in addition to the oils and was using a topical salve which helped a little, too.
April 2014: I showed minor improvement and was able to get through my son's 2nd birthday party, but was still pretty crippled and felt a little brain damaged. I found a chiropractor just behind my house (I don't know why I didn't notice them before), and started trigger point therapy and very minor chiropractic adjustments. They also gave me KT tape, but that caused a bizarre flare up of nerve pain, which, again, was unusual and unheard of (if only I had a nickel for every time a doctor called my response to pain unusual).
May 2014: I started taking Natural Calm Magnesium which helped me a little bit. I felt I was getting better. I had detoxed, and my new chiropractor was pretty good at getting my si joints to stay in place. But I really started to wonder why on earth a healthy, athletic girl would not heal! I started googling Thyroid and Adrenals and Hormones and decided to go see a Naturopathic Dr. I did a consultation with her but she asked for way too much money up front, so we found another doctor who was closer to our home and took our insurance. He dealt with thyroid/adrenals/hormones, etc. So we went to him and he suggested I try Prolotherapy to see if it would cure my supposed ligament damage (We thought the sacrotuberous and illiolumbar ligaments were the culprits). So we did one round and I literally thought I was going to DIE from pain. Every time I think I've felt level 10 pain, I was always proven wrong. It felt so unethical that someone would shove GIANT needles that deep into injured ligaments with ZERO pain meds, anesthesia, etc.
June 2014: After a couple weeks of "recovering" from prolotherapy, I returned to the doc to update him. I told him I was maybe 10% improved which, AGAIN, was UNUSUAL. So we decided to try it again because he thought maybe I needed something stronger. So he mixed my own blood into the injections and tried again. This was SO much worse and I thought I was going to have a stroke or a heart attack from the pain. I was screaming and I'm sure the whole building heard me. He literally had to stop in the middle because I thought my whole body was going to give out. So he sent me home and I threw up. I called him and asked him if this was typical because I rarely throw up. He said I had the flu because that was an unusual response so he didn't think it was from the injections.
July 2014: After I "recovered" from the second round of Prolo and it still did not help, the doc ran a bunch of blood tests and found I had low thryroid and put me on thyroid meds. You can guess what happened. I had another full blown episode! I just decided whenever my body freaks out, I would call it an "episode". A panic attack of the body. Not the mind because at this point I had pretty much become numb and apathetic and was anything but anxious. I'd been through so much torture, I just decided to turn my emotions off. I found another chiropractor who specialized in ART technique but after our consultation he flat out told me he could not help me.
August 2014: I decided to leave the prolo/thyroid doctor and went to an endocrinologist who told me I was not hypothyroid, but had Hashimoto's. I thought this was it. This was why my body wouldn't heal. So I went on a strict diet and started taking supplements to try and heal my body.
September 2014: As I dieted and took supplements, I googled some more about pelvis anatomy and thought maybe my c-section scar had something to do with the problem. So, I flew to Colorado to meet with a physical therapist who specialized in the pelvis. She was absolutely wonderful and did find some ailments and actually did push everything back where it went. BUT, unfortunately, it did not stick. I came back home and found a similar physical therapist but was only able to go to two sessions because my neuropathy was flaring so bad that we weren't able to accomplish anything.
October 2014: So my new Hashimoto's doctor had me do a liver detox, and you can guess what happened. Except this was even WORSE than all the other episodes! And AGAIN, he said this was a very unusual response to a liver detox. Especially since all the bloodwork he did was perfect besides Hashimoto's and a sluggish liver. It felt like supposed drug withdrawal all over again. It got so bad that I went to the ER AGAIN and OF COURSE, they found NOTHING. How can someone feel like they're dying, yet medical professionals can't find anything wrong? When I say episode, I mean full body symptoms of distress.
November 2014: Despite my horrible response to my new doctor's program, I wanted to persevere. He found Hashimoto's when nobody else did, and I invested a lot of money, and I was not a quitter. I also am very level headed with high pain tolerance but nobody would believe that considering my response to everything I try. I went to my gynecologist and another spine specialist just for kicks at this point and they found....you guessed it.....nothing.
December 2014: As I started to experience more and more horrible symptoms, my new doctor finally kicked me out of his program and gave me a refund. He refused to run any more tests and probably just labeled me as a hypochondriac. I just was not responding to his program, which was beyond strange because he had helped thousands of people just fine. I was just a black sheep problem child. So I went back to the Prolotherapy Naturopathic doctor and he ran a couple more tests which turned out normal and at this point I didn't know what to do. I could not drive. I could not take care of my son by myself. I could not work. I was useless.
Until that doctor said the words.........."Your presentation sounds very Lymey".
Thursday, January 29, 2015
Paying It Forward
After sixteen months of suffering and searching, I finally had my blood sent in for Lyme disease testing. During the entire four weeks that it took for the tests to be processed, I spent every single day researching the disease. What did I find? Blogs. Dozens of blogs of sufferers just like me. I thought I was completely alone in my condition and symptoms until I found these people. So, I promised myself that when I get diagnosed, I have to pay it forward. I hope somebody who is suffering from Lyme, whether they know it or not, will be helped like I was. I also wanted a place my friends and fam could go to see how I'm doing without me having to plaster health updates all over my Facebook page and forcefully bum people out in their newsfeeds.
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