Seizures, Cushings Disease, Epilepsy... I think it's just Lyme!

Hi Babstastic, welcome to our community!

I'm sorry for your horrible symptoms for the past 4 + years, but I'm glad you found us here.

If you're GP isn't lyme literate...don't be surprised...if he doesn't accept that you might have lyme disease.

I was happy when I got my positive lyme test...because I had been searching for 15 months for something to explain my multi-systemic symptoms that came on so fast - it was so overwhelming.

Have you thought about having an Igenex Lyme WB Igm and IgG done? It costs $210. You can order the test kit from Igenex...and get a Dr. to sign the lab req.

Also, it would be a good idea to find a LLMD and schedule an appointment. It often takes many weeks to months to get in to see one. You could have your Igenex test results in hand when you go to the initial consult.


We encourage all new members to take a look through the "New to Lyme?..Start Here!" thread (sits at the top of the page) - if you haven't already done so.

We can help you find a LLMD ...if you choose to go that route: Just start a new thread titled: "Looking for LLMD in/near__________" and fill in the blank.

I thought maybe you are Canadian. You mentioned your "GP" and I don't see that often from the U.S. members...they usually say "PCP"

I am on the West coast of Canada. We don't have any practicing LLMD's here.
There is a lyme 'friendly' GP in Ontario...if you email me I will provide you with the information.
I will also give you information on LLND's who although are unable to prescribe antibiotics, they can support you while treating herbally.

In BC there are several LLND's that can prescribe antibiotics. My LLND is in Richmond (outskirts of Vancouver).
There are a few in Victoria, as well.

How are you treating the pituitary adenoma?
Are you hypothyroid?

Did you travel to Ontario to see a LLMD? Also yay for fellow Canadian!

Hey babtastic! I am so sorry to hear about your experience since 2012 with seizures. It's not often how Lyme and it's co-infectors (which it sounds like you may have some from your symptoms) presents itself, but they do call Lyme the great imitator. I am like you - mine presented with seizures. It also began in 2012.

Just a quick summary - because you probably don't want to read more long stories. On Christmas Eve, 2012 I was at my parent's house in small town Texas. I had been sick with what I thought was a flu virus for several weeks. I was getting ready for family celebration and suddenly my head felt strange. I then started having a involuntary muscle movements (which I now know to be a Lyme seizure). I couldn't see straight, I couldn't talk, but I didn't black out or wet myself (that will become important later). It scared everyone and my husband and family wisked me off to the ER. There a doctor xray'd me for pneumonia, gave me a z-pac and sent me home. He told me it was a strange reaction to the flu or some other infection.

Fast forward to 03.19.13. I'm at work. I feel that weird feeling in my head again like I did on Christmas Eve. I call my PCP to make an appointment for that afternoon. I had messaged my husband that I didn't feel stable enough to drive and asked if he could come get me and take me. I never made it to that appointment. I get on a conference call for work - then I start having seizures again. Before my husband could arrive my boss called 911 and I was taken by ambulance to the hospital. I was admitted to the neurological ward. I was there for three days - all the while shaking involuntarily. It would start and stop over 65 times a day. Doctors and nurses would walk in, look at me. They would ask me if I lost consciousness or wet the bed. I said no to both. They would say 'its not epilepsy then or a true seizure' and walk out. I heard this over and over. I was sent for a CAT scan and an EEG. I would shake in response to flashing lights (still do although it's better). They did this during the EEG and had a lot of shaking to analyze. Nope, still nothing wrong with my nervous system or brain. They discharged me with a diagnosis of 'conversion disorder' and sent me to a psychiatrist. The dx, it's all in your head. Go to therapy like a good little patient, work through your crap, take these three psych meds, and you will get better. Well I didn't.

Three months later it settled enough I was able to go back to work, from home. I was advised not to drive. My independent life was over. I went to therapy. I got addicted to the psych meds. Still shaking. I went to energy healers. Still shaking. I meditated. Still shaking. I went to a different neurologist for a 2nd opinion. I begged her to test me for Lyme. She sent me for a MRI. Response, no issues. No need to follow up. Lyme tested negative. Not MS. That was September 2013. My energy healer (which was great by the way, just not the right healer for my problem) referred me to a doctor she saw that was different from other doctors. So I went to see him. Of course he was 'out of network' and I had to pay in full up front, and he wasn't cheap. But I was desperate for an answer. By now it's December 2014. He ran all kinds of tests, not not for Lyme. We mostly treated with supplements and nutrition. He was still looking for a dx that made sense. I worked on weaning myself off the psych meds. Was able to get completely off 1, cut the other in half and take the third as needed or seizures. (xanax helps settle mine) In January 2016, nearly a year of working with this doctor, he sent me to see someone who uses a Bio-Meridian machine for health testing.

See, my blood test for Lyme was in September 2013. I now know I was bitten by a tick on 4/1/12. A friend reminded me (after diagnosis) that we'd all had ticks after being at a camp site at a local lake. She had texts from that day telling my husband and I to check each other because they found some on them. We did, pulled 6 off of me. But we must have missed one. By September 2013 I had been infected for 18 months. At that point of course the blood test was going to be negative - my body had stopped building antibodies and that's what the blood test was looking for. The one they used is only 60% accurate and that's within the first few weeks of infection.

So - off to see the Bio-Meridian test lady we go. (if you google it you'll find it's a machine that looks for the energy signature of disease and organ health, emotions, etc inside your body. It's a cross of german engineering with chinese medicine. Very fascinating) Anyhow - this machine detected Lyme plus 12 co-infectors. All of a sudden everything made sense. I took the lab work to my doctor and he was like 'yes, this makes total sense now.' He also apologized for taking so long to think of this test or checking me for Lyme. I just cried. I finally had a diagnosis. At this point we were 3 years from the first seizure. I had been infected nearly 4 years. So - my body was a mess. But I had a dx! It wasn't all in my head! We could make a treatment plan!

We are coming up on the 1 year anniversary of that fateful test. I did have to take three months off work over the summer of 2016 to hit this thing with everything I had. Taking all the antibiotics made me terribly sick, so sick I couldn't work. I tried to work for 2 months while in treatment, but then had to throw in the towel. At the end of my short term medical leave, I was doing much better. The seizures were starting to get better. I went back to work on September 1st - which was harder on me than I'd planned. I was still in treatment, I'd just gotten through the worst of it. November and December were my best months having only 2 or 3 days with seizures! I went back to see the gal who did the Bio-Meridian test again. Now she only picked up Babesia and Tularemia. 11 of the 13 infections/bacterias/parasites/buttheads were gone! I was so relieved I cried. But - I also know that my fight is not over. Babesia is really hard to get rid of. I have taken every recommended abx for it - and I still have it. I now think it's the major cause of my seizures. I'm now trying to treat it with Artiminisin, but it was making me herx so bad I couldn't work. I had to back off. I now have some different homeopathic solution on order. I'm having more seizures this month and it's frustrating. But - at least I know what is causing them. I know that I will beat it - one day. I just have to keep trying. One day - I will drive again.

So - my story was to tell you that yes - Lyme and it's cronies can have a very large impact on your neurological system and can cause seizures. If this rabbit hole you've been doing down feels right in your gut - trust it. Don't give up until you find a doctor that will work with you. If they prescribe you doxycycline and you start to herx - you probably have Lyme. But if you can get test results that prove it, and look for co-infectors (like the Igenix test recommended above), do it! The more you know....

Take care and good luck.

Purrrsiankitty said...
there is Lyme in Canada???😉

Yup...but it's not recognized by many Doctors... according to them...it's rare.

Wendy!! I never thought to mention the wetting myself part. I get that all the time. The first I didn't have an aura I just woke up with a dislocated shoulder on my parents floor. Every seizure after that I can tell it's coming and the first thing I think when I wake up is "I hope I didn't pee myself" seems silly, but how embarrassing. More emebarassing then losing consciousness and loudly falling to the floor and jerking around? Probably not haha. Somewhat happy to hear someone else having seizures from this as I saw it on the symptom list but haven't heard many people here have that specific symptom.

Your sodium intake will be critical with an adenoma on the pituitary gland. Water will be as well. Things that can contribute to dehydration and a seizure are water intake, sodium intake, protein consumption, carbohydrate consumption, and acidic foods. All of these affect the amount of free hydrogen ions that our body needs. Drinking a lot of water reduces sodium levels and can be detrimental to your health.

Do you eat eggs? Choline levels may be low as well. Balancing your choline stores by eating foods high in choline may help provided you don't eat overly acidic foods.

Maine is pretty close, but Medicare is useless there, right?

Hi Babtasic,
Welcome to our community! I'm so glad you found us.

I'm another one that has had seizures due to these infections. Mine were not grand mal though, but still quite scary.

I've been living with my infections for about 45 years now - it's been so long, that it's really hard to pinpoint when it all started, but I had RMSF at the age of 7, chronic Bartonella symptoms at age 8 and chronic Lyme symptoms at age 9. It's been a long road.

If you are interested in reading my basic story, it's in the link that is below, in my signature line.

Traveler! I have read as much as I possible can that you have posted. Your chronic tonic recipe is what's given me the hope that I can beat this. Thank you for the welcome and I am sorry you are/did struggle with this. I have only had 5 grand mals over 5 years. But have had dozens of other "episodes" that I know the be seizures. There is only one thing that's scared me more than a seizure and it is having a chronic health issue.

You guys are so welcoming and willing to help. I read dozens of threads on here before deciding to post myself and the knowledge I've acquired .. well I wouldn't be as optimistic as I am without it! Forever grateful.