I realized that I never introduced myself or posted my Lyme story. I think I joined the forum in September 2014, but never introduced myself. I just began blabbing away like a typical New Yorker. Lol.
I grew up in Buffalo, NY. Moved to Utah after getting married, and then we decided to move back to Upstate NY about
10 yrs ago.
I had always been healthy. My dog, Mulligan the Hooligan (a mischievous boxer) came down with Lyme disease. We treated him with abx and never thought anything of it.
a year later, we were preparing to move again. It was stressful packing the house up, but nothing that I hadn't already done 4 times before. I went to bed fine one night and literally woke up with a massive panic attack early the next morning! The adrenaline was so bad that I had to run laps around the house to try to burn it off. I was stuck in fight or flight mode for 24/7. It wouldn't let up.
I went to my pcp who said it was anxiety from the move. He gave me Xanax. But the Xanax didn't touch it! I was severely suffering for 2 weeks before I finally wound up in the ER. They gave me intravenous Ativan and geodon (an antipsychotic drug). It worked like a charm! I felt soooo much better.
Over a few days the anxiety came back, but to a much lesser degree. I was referred to a psychiatrist and was diagnosed with Anxiety Disorder. For the next 2 yrs I tried all sorts of psych meds. None really took away the anxiety. I also worked with a psychologist during those 2 yrs to try to find a reason for the anxiety. I had never had any anxiety my entire life! Not even when my mom died of cancer years before! And THAT was stressful! It just didn't make sense.
After these 2 yrs of anxiety, I began to develop more symptoms. Fatigue, weakness, hair loss, memory issues, insomnia. The psychologist finally sent me to her pcp because she felt my problem was medical not psychological. The pcp said I either had a thyroid problem or had Lyme disease. She ran tests and said both were negative. She then diagnosed me with Chronic Fatigue Syndrome. I knew that wasn't it either. Fatigue was the least of my problems.
I saw a bunch of other doctors for more opinions......all said I was healthy! It must be anxiety disorder. I requested copies of my labs and spent weeks examining all the info. My symptoms appeared to be hypothyroid to me. I googled "hypothyroid with normal labs" and found a site called Stop The Thyroid Madness. I learned that you can be hypo with a normal TSH. I spent another 2 yrs trying to find a doctor to give me armour thyroid.
I finally flew to Houston to The Hotze Health And Wellness Center. They are top thyroid doctors. They agreed that I was hypothyroid and hypo adrenal. .....and low progesterone. After 7 months under their care, I achieved optimal hormone levels. BUT..... I didn't feel better! They had a meeting about
my case and phoned me. They asked if I had ever been checked for Lyme? They said that I live in a hotbed area. I told them my western blot was negative. They said I needed to do an IGenex test. I was reluctant to spend another $200 (since I already spent $6,000 just to be their patient
). But, I went along with it and LO and behold...... I had a couple of positive bands and some IND bands). They told me that I definitely have some kind of tick illness and directed me to see an LLMD. I had never had heard of an LLMD!!!
My husband is a pcp, and thought No way I have Lyme! He said IGenex was unnecessary b/c my western blot was negative! He thought it was a scam! He said IGenex reps visited his office YEARS ago and tried to get him to use their Lyme test......but he refused! He said no way will patients be willing to pay out of pocket for their test, when insurance covers the typical western blot.....and he laughed them out of his office!
So, in September 2014 I had my first LLMD appt. She immediately confirmed a LD diagnosis because my band 31 was positive. She said since 6 yrs had passed, that I had late stage neurological Lyme. She was FURIOUS with the psychiatrists for missing the boat. (My psychiatrist actually told me that I was "just a bored housewife and needed a job"!). The severity of my anxiety wasn't even typical of someone with anxiety disorder! Nor was the lack of my response to all the ssri's and other psych drugs! Duh!! BUT.... My presentation of anxiety was VERY TYPICAL of Lyme disease. 12 doctors over 6 yrs missed that!!! Not counting the one I'm married to!
My LLMD immediately put me on minocycline and malarone for 1 month. I had no response. No herx. Nothing.
Next, she tried doxy and flagyl. I had the most severe herx ever. It lasted for weeks! I had to stop treatment as it was literally making me nuts! I never had any improvement.
Next, we tried mino and rifampin, and tindamax. I did herx on rifampin and had major anxiety and night sweats. Stuck that out for a month. Had no improvement.
Took a month off of meds and just took probiotics and probiotic enemas.
Still no improvement.
Now, currently, I have been on mepron for 2 weeks. I definitely herxed with severe fatigue, insomnia, and anxiety. Thankfully it only lasted 2 days. I'm about
to add Zithromax, hopefully tomorrow.
I should also add that I have been on Buhner herbs for the past month. I'm taking: arteminisin, jap knotweed, Hawthorne, houttuynia, teasel root, and sida. I also just ordered some CSA.
I haven't made any gains yet. Hopefully the mepron/zithro does something! It really is discouraging to have been down every path but not feel any better. I don't suffer with any pain, thankfully. But I feel like one of the zombies from The Walking Dead. I just have no life in me!
Well, that's the quick version of my Lyme story. Thanks for reading!
Post Edited (Utahgal) : 2/26/2015 2:02:46 PM (GMT-7)