My formal introduction......

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.

about 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)

Utahgal,

Has your husband altered some of his thinking on lyme? And thanks for the introduction.

Thanks for sharing your story Utahgal! I enjoyed reading it and can relate to your struggles and symptoms, especially the major anxiety issues, which can be so hard. I'm so sorry you're going through this. It is sad that we have had to fight so hard to figure out what is wrong with us and get a proper diagnosis-that most doctors are brainwashed into believing that Lyme is not a problem.

I hope that your husband is now supportive and that your other family members come around! I also hope that you start seeing gains soon!

The zith might whoop you girl!! It didn't hit me at first but once it built up paired with the rifampin it does some serious damage. It stays in your body for 10 days, so if you start herxing know that it will get worse and worse. Listen to your body and know when to take breaks. If you wait until you can't stand it anymore you might be in for some real hurt. Just remember how long it stays in you after you take the pills.

I love love loved reading your story thank you so much for sharing!! You sound like you're in a good place right now that makes me really happy!

Does your husband believe in Lyme now?

I'm going to answer some questions and add a few things. But I think I will post each topic separately on this thread to avoid too much info on one post.


about my dog.....

I became ill about 6 months after his Lyme diagnosis. My only symptom was severe anxiety. Since it all started while selling my house, packing, and moving......it was immediately chalked up to stress. It seemed ridiculous to me, since my husband served in the US Airforce and I was accustomed to moving. I even enjoyed staging a house and selling it! I had done it many times and I didn't consider it stressful. However, this time we had a scheduled vacation in the middle of the move that made it more stressful than need be. I have since learned that one can have Lyme and be asymptomatic and not develop symptoms until a stressor triggers it. So, I wonder if the perceived stress from the move triggered the Lyme and all heck broke loose.

My husband never connected the anxiety as a Lyme symptom and he never connected it back to the dog.

We never saw any ticks on the dog ever. And we did do random tick checks. He was an older dog and didn't go out much except for our yard. So I think he got the tick from my yard, but I can't be certain as I did board him a few times when we vacationed and he did accompany us a few times to the family camp in the Adirondack Mountains.

One of the first 10 questions that my LLMD asked me was, "Do you have any pets"? When I mentioned the dog, her next question was, "Does he ever sleep with you"? Although my answer to that was, "No", I did often snuggle with him on his dog bed. Or I would lay on the floor and watch tv and use him as my pillow. Lol. The LLMD looked mortified when I mentioned this. Ha! Then, I had the AHA moment........."OMG! The dog had Lyme disease"! The LLMD scribbled feverishly in her notes and gave me the biggest DUH look ever! My face was bright red and I shot my husband the meanest look ever! Why didn't HE ever connect the dots?

Now, I don't know if the same tick that got my dog also got me, or if both me and The Hooligan walked into the same "nest" of ticks? But I will tell you that the dog was never anywhere that I wasn't. (Except the kennel)

My property was not "wooded" but we did have several large trees that dropped a ton of leaves in the fall. The LLMD asked if I did any raking. Yes! I did a ton of raking! AND the kids and I loved to jump and roll and hide in the huge leaf piles. Well, I got yet another shameful look from the LLMD.

So, Lord only knows where my tick bite came from. But I saw 12 doctors and not one thought to ask about the dog!

Post Edited (Utahgal) : 2/26/2015 5:46:07 PM (GMT-7)

Anxiety meds........

I played around with a ton of anxiety meds. None really did much. I tried: lexapro, Prozac, Cymbalta, Zoloft, Effexor, geodon, buspar, zyprexa, perphe****ne, and the typical benzos.

2 have worked somewhat for me.

The first was gabapentin. I had read that gabapentin can be used off label for anxiety. So I asked hubby if I could try some of his. He was on it for neck pain. Within DAYS I felt so much better. The anxiety was all but gone! A miracle! I stayed on this for 2 yrs.

In the meantime, I developed more symptoms......fatigue, hair loss, weight loss, brain fog, weakness. Although I suspected low thyroid, my new psychiatrist thought that maybe it was side effects from the gabapentin. I didn't have anxiety anymore, so he suggested that I stop the gabapentin.

I was taking 300 mgs at night. He directed me to lower to 200 mgs for 1 week, then 100 mgs for 1 week and then stop.

When I dropped to 100 mgs, I was off the charts psycho sick! The WORST anxiety and burning pain throughout my body ever! I felt like I was being skinned alive! I immediately realized that I was suffering severe withdrawal! So, I popped more gabapentin. But it didn't help! It got so bad that I ended up in the psych ward!

They finally stabilized me with doxepin, an older antidepressant. It worked! It helped my anxiety about 80%, helped me eat! and allowed me to sleep at night. I'm still on it now.

I found a website called Surviving Antidepressants and they confirmed that gabapentin can cause severe withdrawal in some people. Neither my husband nor the psychiatrist knew this! The group directed me to get gabapentin in liquid form and to decrease by no more than 10 mgs every 2 weeks! Not 100 mgs every week like my doctor said! It took me over 1 year, but I was able to wean off gabapentin without a glitch!

So anyone taking gabapentin, please use caution when you wean off! I actually spoke to someone on the forum who was addicted to heroin. They successfully weaned off, and it was HORRIBLE! But they were clean. Next, they tried to come off gabapentin. They said their withdrawals were so bad, that they had to go back on the heroin to get off the gabapentin!!! And I believe it! And Lyrica is supposed to be worse than gabapentin! So be careful!

Post Edited (Utahgal) : 2/26/2015 6:15:00 PM (GMT-7)

Utalgal awesome intro and so glad hubby has converted. We need more open minded doctors to treat Lyme and chronic Lyme especially.

Hi, Utahgal
Thanks for sharing. Sorry you had to go through 12 doctors at least you are getting answers and treatment now. Definitely realizing how important it is to see an llmd.

And im glad to hear your husband understands!