I do want to make one disclaimer....this is my own experience. Unfortunately a one size fits all approach does not apply to lyme, so what may work for me might not for you. Whatever you are experiencing, keep going-keep researching-keep fighting.
I knew in my gut she was wrong. I began researching my symptoms online. As I was doing so, my symptoms progressed once again. I was sleeping up to 20 hours a day, I was having trouble walking, twitching, blurred vision, brain fog, and trouble driving. It would take me about 60-120 minutes to get out of bed due to joint pain and stiffness. I had to use a chair in the shower. Website after website kept mentioning Lyme disease. I thought lyme disease was kind of like a virus (I know, it is called a disease for a reason) and it would just go away quickly. I was getting more frightened by the day knowing as a mom of a 4 year old, I needed to figure out something quick or else I couldn't do much to be a good mom.
I was not bit by a tick though. I had no rash. These thoughts kept replaying over and over again. Sure our dog had ticks on him here and there, but I didn't. I had enough though so I asked for a blood test at the PCP. I received a phone call...I was positive. I was relieved in a way because I finally had an answer but little did I know a whole lot more was coming my way.
I took doxycycline for 2 weeks with no relief. During that time the PCP gets a 2nd result back from the Western Blot blood test called a long term result. It was negative. When I called back to make another appt. since I was still experiencing severe symptoms, I was told I was not in fact positive but negative and that there was nothing else they could do. I need to see a chronic fatigue specialist or look into fibromayalgia specialists. Back to the drawing board I went.
I learned that Western Blot blood tests are extremely inaccurate and can often give false negative. It is imperative for doctors to diagnose by looking at symptoms vs. results. I knew I had to keep searching for answers. I started looking for a lyme literate doctor thinking they would be a dime a dozen since I was coming across so many people in the region with lyme. WRONG! 2. Two llmds came up in my area and both were more than an hour away. I called the first and was put on a 3 month wait list. Desperate for something faster I found another doctor of osteopathic medicine near the border of the neighboring state. I called and left a plea for help on their voicemail. When they called back I was in tears to hear that they would get me in the following week. The only downfall....they do not take insurance.
No one tells you when you are diagnosed with lyme that it can become chronic if not discovered immediately. No one tells you that insurance does not recognize lyme disease as a chronic condition. I had absolutely no idea how I was going to pay for my first visit. The first visit to the office was $250 and now $150 each month and the igenex blood test (not 100% accurate but the most accurate test on the market) was $275. Luckily, by the kindness of their hearts, a group of fitness friends raised money for me behind me back. It brought me to my knees. I will forever be grateful for that.
Statuses from that time:
"Sounds about right. I do not advocate taking antibiotics for everything but I could tell 14 days for me was not enough.
Quick update: pcp can't do anything else for me because long term test came back as cdc negative. A lot of people get this answer because the cdc requires 4 bands and I'm only 3 bands. I'm extremely high in levels of lyme on 1st test (they do various tests). cdc has not yet recognized chronic lyme as a "thing" so insurance companies don't either which makes doctors weary of it too (sidenote- i feel so terrible for people who have this worse than i do. I have read so many stories of people fighting to even walk after battling with Doctors for years). ...Sooooo next steps since my symptoms have not left...
1. Call Infectious Disease Specialist
2. Get on wait list to see 82 year old doctor in Hermitage, PA who is supposed to be the king in treating all this and has people fly in to see him apparently.
3. Plan on spending $$$$$ on figuring this all out"
"OH MY GOD! I'M GONNA FLIP!! I have an appt with a lyme literate doctor on monday!!!!!! I'm in tears. I've never been more excited to pay out of pocket for medical care in my life."
|My 1st appt went well. It was truly overwhelming and I left with 21 days of minocycline antibiotic and a lyme herbal tincture to try to detox the disease out. I was so happy with my doctor. He did not treat me like I was dumb, he did not negate my symptoms. He listened, he understood, he explained, and most importantly....he took his time. Paying out of pocket was definitely worth it in this case.|
Here is my status update from fb that was written shortly after my 2nd appt. 1 month later:
I am posting this for any of my new lyme friends who may have advice, those of you who have been so kind in being interested in my story, and for myself basically as a journal entry as my fb has turned more into my record. Hang in there. This will be a long one.
As you can see in the picture below, I am going to be taking a lot of shit. 16 pills in the morning, along with shakeology and/or "energize" also from beachbody, and 8 pills at night. 0 of these are for pain.
When I visited my doc, who is a doctor of osteopathic medicine located about 90 minutes south of Pittsburgh for those who have been asking, last week he first presented copies of all of my results. He thoroughly explained each blood test and result one by one. I couldn't tell you if I ever have had a doctor sit with me that long and go over my results in detail let alone was prepared with copies for me.
He went over a result he tested me for that I had no idea was even an issue. He suspected I was undermethylated (which I had no idea what that meant) and my test came back that I was. If you have never heard of undermethylation, I suggest you take a peak at this article. I also highly suggest reading it if you have ever dealt with anxiety, depression, inner tension, self motivation, competitiveness. http://mentalhealthdaily.com/2015/03/21/
It felt great to know that my doctor was being proactive in treating me as a whole instead of being reactive to the lyme only. To treat this I will be taking a combination of different amounts of the following vitamins along with ensuring I drink Shakeology (because of all of the superfoods and vitamins/minerals/antioxidants):
Now onto the other tests before I get into the lyme plan:
-My chemistry levels were normal except for vitamin d (which many people are vit d deficient). These levels include everything from magnesium to glucose to Potassium, etc.
-Zinc Level= normal
-Thyroid Antithyroglobulin antibody= normal
-Reverse T3= normal
-Homocystine Total= normal
-Antimicrosomal Abs= normal
-Igenex-IGG (lyme test that is not covered by insurance, $275 and 75% accurate)= positive
-Western Blot (lyme test covered by insurance and guidelines are set by Center for Disease Control, covered like a standard blood test, 35-40% accurate)= positive
-Titer for B. Burgdorferi= positive ( this detects antibodies against b. burgdorferi which stay elevated in persistent disease cases).
Lyme Plan:So far 14 days of doxycycline did not work (prescribed in very beginning from PCP)
21 days of Minocyclin did not work (1st attempt from D.O.) w/ lyme tincture drops
3rd course of treatment started this week. I will be doing what is called a "pulsing method." I had Wed-Sunday of last week med free.
This week onward until my next appt. I will be doing the following:
Zithromax and Omnicet (antibiotics) on all weekdays for next two weeks (weekends off)
Flagyl only for the third week
5 drops of lyme herbal tincture everyday
I need to guarantee I take my probiotics to help prevent getting C-Dif. I also need to keep myself as healthy as possible in terms of anything else that can compromise my immune system since my risk of pneumonia is higher when immune system is compromised. How will I remember all of this? I have no idea. How will I keep affording this? I have no idea. Will I get better? I have no idea.All I know, is that I am open and willing to try anything and all. Apparently eating healthy and already being in the habit of taking the probiotics and drinking the shakes really was on my side in this case. Hope this helps anyone new to lyme. Remember, everyone is different and this is my treatment tailored to my situation.
During appt 2 he found a rash inside my hair right at the hairline base of my neck. I often thought I got pimples back there so if I was bit by tick in that spot, I would have assumed it was just a pimple.
*The picture of me in the gown is from an ER visit after having a 10 day panic attack due to babesia I thought I needed my heart tested. Everything came back fine but I still felt a lot of discomfort in my chest when I left hospital.
"Home from the dr. appt but crawling under the covers for a bit as today's visit did not go so well. Thank you to you guys who texted or msged. I promise I'll get back tonight."
It didn't go well because I was frustrated. I was frustrated with my progress and how long everything was taking. It was also discovered during this appt. that I in fact did have a co-infection in the form of babesia. In addition to lyme, ticks can also carry other things such as babesia. A full definite of babesia....
For current statuses and to interact daily please find me on facebook.com/jessica.piole (remember that dot)!
You can find my full treatment schedule over on the treatment tab.
I also apologize for some holes in my story. With the brain fog I tend to forget some then remember some, etc. etc. I was also relying on facebook for my old statuses but apparently not all are there. Feel free to ask any questions!