(Rough draft…interrupted for a Lyme meeting….will edit and finish later tonight – 5/17/15)
If you are wondering why I would be fighting with a giant, cuddly panda bear…..I assure you, no animals were hurt in the making of this post 😉
In January of 2014, I was heading back to my neurosurgeon, to have an ICP monitor placed into my skull, to figure out what was causing my suspected high intracranial pressure. I had had my spinal cord surgery (Tethered Cord, or TC) in August of 2013, and in November of 2013, while reaching above my head, I felt a pain in my skull like nothing I had ever felt. It was as if I had been hit in the head with a hammer, and my skull felt and even sounded like it was cracking. I quickly sat down with my hand on my head, and my friend asking if I was ok. A friend who had been through far more related surgeries than one can wrap their head around. The rest of that night, I took it easy (not much choice anyway…my life had become mostly horizontal in the summer of 2012). As the coming weeks came, I was increasingly nauseous, found it harder and harder to be upright at all, and did every bit of my Christmas shopping on Amazon. I was suddenly getting texts from friends asking if school may be cancelled tomorrow for their kids, because the barometric pressure greatly effected me. I would love to bring in that million dollar salary that our local news meteorologist are raking in, since I was 100% accurate…and them, not so much 😉 So, from November through January, there were many calls placed to my neurosurgeon’s office. Medications, like Diamox were tried, which made me worse, I was like the Tin Man within 24 hours, it dried up my fluid to the point of barely being able to bend my joints. My surgeon warned me it was an ‘obnoxious drug’, but it would either help, or not….definitely not for me. So, in mid-January, he personally called me because I had concerns over having a spinal tap to check my intracranial pressure. Having Ehlers-Danlos Syndrome makes one prone to spinal fluid leaks, and since we weren’t sure what was going on, and I was also diagnosed with glaucoma (at 34!), he agreed to place the ICP bolt, like I asked. Since I couldn’t sit up without feeling incredibly ill, and sometimes vomiting from the pain in my head, coupled with pressure on my optic nerves, we made the decision together to go forward with the ICP bolt, to get a 24 hour+ picture of what was going on, versus a snapshot with the spinal tap. As I awoke in ICU after this brain surgery, it was immediately evident that we made the right call, and I even remember the first thing I had heard upon awakening was ‘her pressure is negative 2’. I looked at my surgeon and said ‘we did the right thing, didn’t we?’, and he nodded and watched my monitor for a couple of minutes as it went even lower, reaching -11. Turns out I had a spinal fluid leak, or CSF leak (normal pressure is 15 to 20). This was likely the result of reaching too far, just 3 months after my spinal surgery, reopening the dura of my spinal cord. So, I ended up spending about 36 hours in ICU, before being led to a new room,and then off to get that spinal tap anyway, to do a blood patch to repair the hole, causing the leak.
I’m giving all of this detail before getting to PANDAS, because it may also help someone else who got to their PANDAS diagnosis in a similar way. with an increasing number of PANDAS/PANS patients, actually being adults. I also wanted to share that I have met many people with high ICP, and having had really low ICP, I’ve learned some distinct differences that can help one determine what their problem may be, one way or the other. First, people with low pressure tend to need to remain flat, since the fluid cushion around the brain drains downward while upright…whereas people with high pressure often report needing to sleep semi-upright, perhaps in a recliner, because they are most comfortable that way. Being flat increases their pressure further. Neither low nor high are comfortable, or pleasant in ANY way. Also, those with high pressure seem to have a whooshing sound in their ears, whereas I never experienced that….not enough fluid for me to hear it whooshing. It seems both high and low are effected by barometric pressure changes. Anyway, I wanted to share that since I’ve come across many people with high pressure, very few with low, and a fellow EDSer and I, her with high and mine low, determined that these were the biggest distinguishing factors, for anyone wondering, or looking for some guidance.
Now, as I was on the table getting my spinal tap, my surgeon walked in and grabbed my hand and quietly said ‘Your tests came back, you have PANDAS’. Now, for those of you who have never had a spinal tap…they don’t exactly tickle. I found this to be an interesting time to deliver such news, but when would a good time to hear it…..ideally, never. So, as soon as I was wheeled back to my room, I called the one woman I knew of through social media that had the exact same diagnoses as me, and had more knowledge of PANDAS than I did. I had heard of it, but really had no idea what this meant for me, other than possibly getting to the bottom of my relentless anxiety and panic. I was partially drugged while on that call, so I don’t remember much of anything she said, but knowing there was another woman, and mother out there, with the same constellation of strange diagnoses piling up…I felt less alone.
So, what is PANDAS or PANS, as my diagnosis was later changed to? PANDAS stands for, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. PANS is a revised term, since not everyone has strep as their only, or main ‘trigger’. PANS stands for, Pediatric Acute-onset Neuropsychiatric Syndrome. This term better fit my case, since I was having flares almost constantly. It did not take exposure to strep, but exposure to nearly any illness, as my immune system had just been wiped out at this point. Why? Well, this is a Lyme site….so I’m getting there 😉
I was injected with my first penicillin shot within hours of receiving that diagnosis, and thought I may finally be on the path to ridding myself of this severe anxiety and panic that had take over my life. I had a bit of hope. One of the many times throughout my 3 year journey where it felt like I had an answer, only to have those hopes repeatedly squashed. I was released from the hospital in MD, and sent home with a script for penicillin injections every 3 weeks. Doing as I was told, not only did I not get any better, I was getting worse. How could this be? I immediately contacted a doctor who is thought to be the PANDAS expert, and I spent just about 3 months getting even worse. In addition to the injections, I was put on an antiviral, since my viral load was quite impressive. Those in the Lyme and PANDAS world will likely be familiar with the common list of coxsackie a & b, ParvoB19, chronic EBV, etc.. Some say it is a theory, some fully believe….I lean towards their being a lot of truth in there somewhere, that ticks were used for biowarfare, and around 1976, Lyme was no longer just Lyme Disease, but now a much stealthier bug, and now accompanied by other infections. It is also interesting how so many with Lyme, have the same viral load. The theory, if one chooses to believe it is just that…a conspiracy theory…is that on Plum Island, outside of NY, which is still being used for research on livestock vaccines. Is it truth, or just coincidence that those with Lyme, have the very viruses that were supposedly being tested on cattle? Hmmmmm. Anyway, it has been said that the ticks they were using to infect livestock, then treating some, and not others, to test their vaccines….were being used in an uncontrolled, outdoor study (by a Nazi doctor, no less). So, these ticks, said to have been injected with more stealth infections, were now hitching rides on birds, and flying across to NY & CT. Around 1976, a group of children in Old Lyme, CT suddenly developed arthritis-like symptoms and fevers. This is where Lyme got it’s name, as we know it today. It’s technical name Borreliosis, or B. Burgdorferi is from the scientist who named the Lyme bacteria, the spirochete, Wilhelm ‘Willy’ Burgdorfer, who passed in 2014. In 1982, he discovered that bacteria that was the long-sought cause of Lyme Disease.
So, as I continued to get worse, and my PANS flares seemed to be never-ending, and causing suicidal ideations, I was desperate. I had one person in particular, on social media, telling me that she was sure I had Lyme Disease. This was always in the back of my mind, since I had one abnormal band (41) show up, when having more extensive blood work done after my PANDAS diagnosis. I questioned nearly every doctor from the time I first got sick if Lyme could be part of what was wrong with me. Every time I was met with a resounding ‘No.’ Even from the doctor that was currently treating my PANS, and found that one abnormal band. That particular band means there is evidence of flagellin (or something with a tail, as I say….ew), so I kept digging, while suffering. Occasionally this person would pop up to tell me again that she believed that I had Lyme. The more I thought about strange and random symptoms throughout my life, the constellation of diagnoses that I had now wracked up, which at this point included Dysautonomia, POTS, Ehlers-Danlos Syndrome, Gastroparesis and PANS. In addition, I had other findings such as glaucoma, osteoporosis, spina bifida occulta, mild scoliosis, Dystonia, and the list goes on. Now, having been relatively healthy, and very active before the summer of 2012, this growing list had me at my wits end. I was beginning to believe life would be easier for everyone, without me, one big physical, emotional and financial burden. I decided to start researching Lyme around June of 2014.
My PANS symptoms actually started years before I received any of these diagnoses, but whenever I would go to a doctor, all they saw, no matter what I said, was a severely depressed person, and I had antidepressants thrown at me, on and off, for 18 years, starting at the age of 18. Multiple doctors diagnosed me with severe clinical depression. One said I was bipolar, the next said I definitely was not, the next put me on enough Seroquel for sleep, to kill an elephant…1000mg! Starting dose, I believe is 25mg. Every time I went back, and told him I still had periods of insomnia, depression and anxiety, the more it increased. That finally stopped after I landed in the hospital for 2 weeks in 2007, with some unknown stomach issue, that ended up inflaming every organ except my heart. Was this an activation of my then dormant Lyme? Highly possible, as I found out many years later. So, as far as my symptoms, they always took the exact same course. In this order, this is how each round of suffering began and then abated…
First I would actually feel some impending doom, like a dark cloud physically draping over me. Then I would begin to have increased anxiety, then the agoraphobia would begin, some OCD rituals like skin picking or excessively worrying about very dark things that never would happen, a very slight twitch in my neck, insomnia increasingly got worse, anxiety turned to panic which would wake me up around 4am, like clockwork, I would isolate myself to the point of barely wanting to even interact with my husband and children, let alone those outside of my home, suicidal ideations, then it would all begin to dissipate just as it began. Each course was always 4-6 agonizing weeks.
Now, the course it would take was frightening, and for years I thought I just had severe depression, as I was repeatedly told. Then when I became debilitatingly ill, went through my surgeries and racked up an extensive lists of chronic conditions, illnesses and symptoms…..I finally found the source in August of 2014.
After having that abnormal band (band 41) on my Western Blot, and a diagnosis of proctitis, and PANS, and a friend who once again told me she thought, no….knew that I had Lyme…I hit the books, the internet, anything and anyone I could find out about Lyme from, became the greatest thing I have ever spent time or money on. I figured, only one of my conditions is hereditary, the rest seemed to have been acquired over time. Although I was told they had no cure….I wasn’t buying that. The reason I knew I didn’t have to, was after meeting my new primary doctor, whom is an Internist, and rid herself of POTS, a subset of Dysautonomia. Two conditions that I had, and was told there was no cure for Dysautonomia….well, that is incorrect. We had a great meeting, and I then found a local neuropsychiatrist who happened to specialize in Lyme, and I set up an appt. immediately. I saw her in July of 2014, just before we went on vacation. I knew I had 4 weeks to wait for my results from the IGeneX tests that she ran, but more importantly, she clinically diagnosed me with Lyme, within 10 minutes of meeting me. I had asked every doctor, nurse, specialist, surgeon, etc., for 2 years, and now within ten minutes, I had this doctor telling me she had no doubt in her mind that I had Lyme Disease. So, I took this info, and my newfound hope, and got in our RV for a vacation near the beach. Luckily we have an RV, since I was unable to handle long trips in a car, and was able to lie in the bed for the trips we took. I started reading things online the second we hit the road, and every spare minute I had. By the time I got my results back 4 weeks later, I had a very good understanding of the basics of Lyme Disease. That didn’t quite prepare me for the news I was given though.
This doctor had my husband and I come in for my results, and she told me that in 18+ years of working with Lyme patients, it was the most positive IGeneX Lyme test she had ever seen, 7 positive bands. She also told me that I had Bartonella, which particularly loves the brain. So, you’d think I would be over the moon that after over 2 years of being disabled, thinking I was losing my mind, dropping 48 lbs. in the first 6 weeks of being this ill, and wondering if I was even going to live, and be here for my daughters….this should have been a happy day, right? Yes, and no. After all I had read, and from hearing and seeing the struggles of people I had met throughout those 2 years, the ones with Chronic Lyme, suffered more than those with most other diseases or conditions. To make matters worse, having EDS, made my body a great host to these bacteria, as they burrow. EDS is a connective tissue disorder, a collagen defect. This made me far more permeable than people without EDS, and I was just riddled with it. Not just for those past 2 years….but my entire life. I had some symptoms that went back as far as I can remember, and Lyme can be congenital. Both of my daughters were recently diagnosed with congenital Lyme. So, all those years that doctors were trying to fix my chemical imbalance….I never had one. It wasn’t clinical depression, it was bacteria, invading my brain, my nervous system, every part of me. So, instead of being happy that day, to finally have THE answer……I burst into tears. I was mostly devastated, because I had met people, and continue to, that cannot get better. I have a dear friend paralyzed, I knew of many Lyme related suicides…..and much more. Was I happy at all? Yes, I was happy to know what I was now truly fighting. I wasn’t fighting PANS, PANS was a result of an underlying infection. It ALWAYS is. That PANDAS expert told me that, and that it is an alternative fever response, it is not a disease….so I now knew that I could rid myself of it. Could I rid myself of Dysautonomia, POTS, Gastroparesis, and multiple other conditions and symptoms too? Well, the answer is yes….but I wasn’t quite ready to believe it yet then.
September 17, 2015…the day I had my first round of IV antibiotics for my Lyme diagnosis. What happened next was not completely unexpected, but the severity was. I ended up in the hospital for 10 days, with what looked like seizures, but I was actually herxing..a reaction to the neurotoxins released from the die off of the bacteria. A whole new hell. Anyway, long story short(ened), I eventually started improving. Within the first 6 weeks of treatment, I no longer needed 3 blood pressure medications. Once I added IV Ozone to my protocol, I saw rapid improvement in all symptoms, and even stopped needing my wheelchair. Since this is about PANDAS, I want you to know that if you find and treat the underlying infection(s) and virus(es)…PANDAS/PANS symptoms start to decrease, and eventually I got to a place of having very short flares, then several months without a flare. So, please know that there is HOPE!! If you find your symptoms returning and worsening, go back to the tools and treatment that gave you improvement to begin with. In my case, Ozone was the answer. It kills bacteria and viruses (without harming healthy tissue). Others have had success with long term antibiotics, BVT (bee venom therapy), or IVIG. Personally, I wouldn’t have IVIG, although it was recommended. The reason I didn’t, was because I heard Dr. Swedo speak and she specifically said that IVIG should be a last resort. The reason for that is that each treatment comes from over 20,000 donors. Since there is no guaranteed way to test for Lyme and coinfections, I could have been setting myself up for further infection! There have been reported deaths after blood transfusions, of people that contracted Babesiosis this way. Babesiosis is a very common coinfection, one that my youngest daughter contracted after a tick bite (here in Pa). It is a cousin of malaria. So, whatever you decide as far as treating your PANDAS/PANS, or your child’s..please be sure to rule out all infections and viruses before turning to IVIG, or other expensive or risky treatments. Many with PANDAS/PANS improve on longer term antibiotics….this should make one wonder if Lyme Disease may very well be the cause…💚
I noticed the biggest improvement after my immune system breakthrough, 5 months into my Lyme treatment. I had my first true fever in well over 2 years. PANS is an alternative fever response, so instead of getting fevers, I had encephalopathy…which causes the neuropsychiatric symptoms of PANDAS/PANS. Since then, it has steadily improved. I would say that I am over 80% free of PANS, Lyme, POTS, and more. Never give up…..no matter how much I wanted to, I wouldn’t be here to share this hope with all of you if I did. Keep fighting!!
Thank you for taking the time to read my journey. Don’t forget to avoid sugar, as it feeds bacteria, and cancer..and all things bad. ❤️