Topic: I am doing Better, turns out I probably didn't have Lyme
lymetwister
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Member # 19590
posted
I feel obliged to make this post so others who have similar as I do may also find a way back to health.
I started here almost 8 years ago. My Lyme testing was Negative but I did have a WA1 Babesia band. I tried IV Abx, Rife, Salt/c, Buhner herbs, etc. and I only got worse over time.
Like many of you, I saw a gazillion Dr.'s and had every workup a person can have. Those that know me know I was a big Lyme advocate. I even started the Lyme disease National Registry.
My goal with this post is not to distract anyone. But, if you can relate to any of it, it might give you new direction and help you as it is helping me. For me, the Lyme diagnosis made sense as nothing else fit. As an RN, I knew of no other illness that could cause my symptoms, so again, it made sense. I will tell you what my symptoms were, what I now know that caused them, and what I'm doing about it. If anyone has any questions, feel free to PM me and I'll answer you as best as I can.
My symptoms were: Off balance like on a boat swaying sensation, Brain Fog, Off the wall anxiety, shortness of breath, crying for no reason Emotional Lability, POTS, other Autonomic Dysfunction, exercise intolerance, blurred vision right eye, drooping right eyelid Horners Syndrome, excessive sweating, cold to the bone flu like all the time, back pain, shoulder pain, neck pain, Pain in back of head at base of skull over occipital notches, foot pain, tremors, rage, ringing in right ear, head pressure, malaise, fatigue, sleep apnea, and more.
What is the cause ?: I learned how to read MRI's and I had about 15 or so over the years, all read normal. After looking super hard, I realized I had what they call Empty Sella, which is a squished Pituitary gland. It can be a benign finding according to the literature, so this alone didn't prove anything. But then I saw what appeared to be my Left Vertebral Artery compressing my brainstem. I sent the pictures to different Neuro Radiologists around the country and many agreed this was an issue, it was easy to miss, and should be addressed. I traveled outside of my home state in 9/2014 and had surgery to get the Artery off of my brainstem. It was also discovered that I had a severe brainstem shift from this compression. I came home hoping I would finally be well, but I had no improvement.
When I reviewed the OR Report, the surgeon noted that my Cerebellum was under high pressure when he cut into the dura. I suspected that this could make sense that I had high Intracranial Pressure and perhaps this was causing all of my symptoms. You can't see high Intracranial pressure on an MRI, it can only be measured from an LP.
I went and had an LP and my pressure was 40. Normal is <20cm. My Neuro Surgeon suggested an LP shunt so I agreed. My pressure was about 50 on the day of the surgery and he accidentally nicked my bowel during the surgery and the shunt was aborted. 3 weeks later, I returned after my bowel healed and the LP shunt was completed. I had no relief in symptoms and a month later we repeated the LP. My pressure was still elevated so we decided to place a VP shunt in the brain. The shunt was placed 6 weeks ago and my CSF pressure is finally Normal.
I am doing so much better, it's not funny. I only fear I will Jinx myself, but for those that know me, you will know that I have never been able to report any relief in years, so this is no coincidence.
I will now explain what I believe happened to me. I can't prove any of it, but it makes sense to me and I know many of you will be able to relate to the following, so here goes:
One thing I found when I did my questionnaires was that 77% of those that took my survey reported something very stressful in their lives just prior to getting ill. For me, it was the unexpected loss of my beloved brother. We were best friends and I have never cried so hard in my life. I do believe the back pressure that was put on my Arterial system in my brain caused the initial problem with my Left Vertebral Artery compressing my brainstem.
The domino effect that followed has caused the rest of my issues I believe. The biggest issue being this high Intracranial pressure. Somehow, that Arterial problem caused the CSF fluid to NOT be reabsorbed properly, thus allowing my Intracranial pressure to run high for so long. I have no proof that it was high other then knowing it was super high as of recently and the symptoms were the same for years and progressive, which would be consistent with an increased intracranial pressure.
So, how did I HERX on Abx, Salt/c etc. then. This had me stumped for a long time, but I do think I now know what happened. First a few facts. The average adult has about 150ml of circulating CSF fluid at any given time. This fluid turns over and filters in the brain about 3 x per day. This turnover rate can be compared to the kidneys filtering out the bad stuff that becomes urine. Adults make about 0.3ml/hr of CSF fluid in the brain. If we are not draining the fluid properly, then we are not filtering. The end result is high pressure and a toxic brain. Imagine that Abx getting into the brain, but not getting out. Salt/c for me made me worse b/c the Sodium caused my pressure to go even higher from fluid retention in the CSF space. So, what I thought were Herx's were NOT.
Now imagine an environment where CSF fluid is high. The pressure exerts it's force not only on the brain tissues, but also the cranial nerves, and the spinal nerves that travel all the way down the spine. The CSF fluid can affect the spinal cord all the way down to the coccyx area. From there, small nerve fibers branch out to the bowel, bladder, feet, toes, etc. So, it's not unreasonable for high pressure to cause things like bladder incontinence, leg pain, foot pain, toe pain, heel pain, numbness/tingling, etc. If a spinal nerve is affected, then the corresponding areas that the nerves travel to can also be affected. The same holds true up in the brain. I don't want to confuse anyone, but this is important stuff.
We all have 12 pairs of cranial nerves and they control pretty much every function in the brain and body from balance to breathing to heart rate and so on. Can you imagine why one might have Postural Tachycardia if your Vegas nerve was under 50cm of CSF pressure when it should only be 15 ? This was the case with me for God knows how long.
BTW, my Testosterone has been that of a man a hundred years old for a very long time. Makes sense now after learning about my squished pituitary gland. I have been on T injections and I have some other pituitary dysfunction. I'm told the gland is very soft and should bounce back over time now that my pressure is back to normal.
So, am I cured ? Time will tell. I sure feel a whole heck of alot better. My Dr. says my brain needs to do a full reset now, which he sees often and could take many months. The effects of the high pressure should all reverse themselves 100% over time. My VP shunt was set to 12 yesterday up from 11, but remember I was almost 50 before I went to 6. If you can imagine a car tire pressure which should usually be about 35 psi Pounds per square inch. Imagine taking that tire and over inflating it by 45 psi. It might pop right. Well, now imagine the outward force pressure has on a brain that can't move outward past the skull. I don't know what my number needs to be. We will tinker with it over the next few weeks until I find which setting works best for me, but so far, I'm on the right track finally.
For the record, I'm not saying / suggesting that everyone on Lymenet or in the Lyme community has what I have. What I am saying is that if you can relate to my symptoms and you havn't had an LP, you might want to consider getting one. In my opinion, there are a few symptoms that seem to be across the board with those that do have confirmed high pressure. Those symptoms we all seem to have in common are: 1. One affected eye either intermittant blurry, pain, drooping 2. Pulsatile tinnitus ringing in one ear with audible heart rate in that ear. 3. Hormonal dysfunction due to Pituitary being squished Empty Sella 4. Off balance due to Vestibular nerve compression.. Swaying on a boat sensation. 5. Pain pressure in the back of the head at the base of the neck over the skull notches on each side 6. Pain across the shoulders and down the spine like the letter "T" Due to spinal nerve compression. 7. Sleep Apnea Not sure why and you need a sleep study to confirm. 8. Shortness of breath / Tachycardia -Vegas Nerve Compression 9. Anxiety / Depression
There are more and the list could get longer, but I don't want to confuse anyone. Again, I'm not handing out medical advise here folks. I just know from talking to so many of you over the years that I'm not alone here. I know others that found out it was high ICP and not Lyme when they thought and treated themselves for Lyme for many many years. I don't know what the WA1 was for me. It did go away on a retest. I had a few IND on the Igenix test, but that was it.
I hope this post helps some of you.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
That's amazing, Gary. Just amazing. You are so fortunate to have been an RN who just happened to be able to read MRI's!
So happy for you and for your family. God's blessings to you and yours as you continue to heal!
Thanks for all of information. It will be valuable to someone .. sometime.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momindeep
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posted
wow...just wow.
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Keebler
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- I'm so glad you are doing so much better.
As for the Babesia test that seemed so clear - and lyme, too, which was more fuzzy (but so often travels with babesia so seems very reasonable that had been on board) with all those treatments it may be that you were treating those but OTHER things were in the picture, too.
Infections can cause high pressure in the cranial fluid but so can other things -- and structural matters as you found out.
Glad you could SEE the pictures, so to speak and get these issues corrected. And good of you to come back and suggest that a good all round picture of everything that could be going on be considered.
Chiari malformation comes to mind as something that some find helpful to explore:
poppy
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posted
Which goes to prove that a lot of health problems are not accurately diagnosed. You saw many doctors prior to lyme presumably who did not diagnose this. Those articles we have seen published saying well, it wasn't lyme, it was something else. When often what happens is that it wasn't something else, it was lyme.
Diagnosing is still an art.
Very glad to hear you have found something that helps. Hope this is the answer and you are a fixed patient.
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lymetwister
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Keebler, I thougth Chiari for a LONG time as I had like every symptom. I have since learned that Chiari folks also have high ICP and many wind up getting shunts. Perhaps it's not the Cerebellar tonsil herniation in Chiari thats even the problem with those patients. Maybe it's just high pressure. I do know that Chiari is not fully understood to this day. I'll post some pics. here for anyone interested in my problem. Here is my Squished Pituitary gland called "Empty Sella". This should have been my first clue, but even this was never reported to me on any MRI.
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desertwind
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posted
I have Chiari Malformation; herniated cerebellar tonsils and brainstem compression. This caused low and restricted CSF flow which resulted in hydrocephalus (sp). I had two separate brain and decompression surgeries but still have slightly low CSF pressure as scar tissue has replaced some of the space where the bone was. I also had some issues with CSF leaking from my bovine pericardium patch so had to get that replaced. I know my dura is weaker in that area and still get a lot of low flow/CSF leak type headaches. I have a titanium plate in the cranio-cervical junction to help decrease adhesions to the dura but still....it aint never gonna be perfect in the back of my zipper head!
In addition to the 10mm herniation, the back of my skull was under developed causing more compression to occur. The compression of my brainstem and spinal cord was causing a number of hard neurological deficets - all of which have gotten better since the surgery. Decompression surgery is not a cure but a treatment for Chiari.
While Chiari is not well understood there are a hand full of Chiari experts who are doing some wonderful research and perfecting the surgical technique. I was lucky enough to see one of the best in the country...very lucky indeed.
For me, I also had/have lyme and numerous co-infections and still struggle with both conditions but am so much better since my surgeries and long term TBI treatment.
Anyway...thanks for sharing and glad you are feeling better!
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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I agree with Keebler and others - I think you had multiple problems. Something obviously triggered the increased CSF pressure. Personally I do not think that stress alone would do that, but I suppose that is possible.
I do think some of the neuros along the way should have done an LP sooner. I am curious - was your protein elevated or was that even tested when they did the LP?
If I remember correctly I think you also tested positive for ehrlichia or anaplasma in addition to Babesia duncani (WA1)? If so, then obviously you were bitten by a tick and did have some coinfections at some point.
Did you ever have a brain SPECT scan done? If so, what were the results?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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wow, amazing that you discovered this, so so glad for you. Sorry you had to go thru so much, and that it was missed so many times on your MRIs. I wonder if anyone other than you would have ever figured it out.
Is there anything beside the empty sella on your MRI that would have indicated increased CSF pressure. Just wondering, I have cds of my mris.
Your really worked hard, I hope you continue to improve and enjoy the heck out of your returning health!
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lymetwister
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posted
@Dogman, unfortunately, short of an LP, there really is no way to measure high CSF pressure. But the Symptoms are big give aways IMHO. I also believe Empty Sella should correlate well in those that are ill or have symptoms of high pressure even though the literature suggests it can be a normal finding in some. Not sure there is any proof to back that up. In my own case, I could feel the pressure in my head. Some people can articulate and are in tune with their symptoms better than others, so it's hard to say.
Something else to be aware of is the reading of the MRI. My problem did jump out hard if anyone had taken their time to review my films. The problem is that an average MRI has over 500 images or even more. Most Radiologists quick scan the films and the obvious can be often missed there isn't something Jumping out at them.
I wish I could somehow use my nursing license to look at others films to pick up these things because I now have a good eye and understand what I'm looking at, but unfortunately it isn't allowed.
@Bea Seibert, I only had the WA1, never anything else. My SPECT scan did show Hypoperfusion on one read, but a re-scan 2 years later when I was way worse was Normal on comparison, so not sure what that all meant.
Another useful test is a Venogram, CTA, or MRA -all similar tests-. I've read that a Venous Sinus Thrombosis is very common and can cause high ICP by itself. Without the CTA, it would go missed.
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TF
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So happy for you!!!!
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seekhelp
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One of the best posts I've read in some time. I don't come around much anymore as I rarely read anyone getting better with Lyme treatment. I'm glad you were able to find out the true cause. It sounds like you've been to hell and back. Best of luck in your recovery.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymetwister
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posted
Nothing comes without a Price, but my hair is almost grown back now and you can't see a thing :-)
posted
Wonderful news, Lymetwister. This shows once again that you have to be your own advocate, nurse, doctor, researcher, all-in-one. You did a great job.
I just listened to a presentation by Dr Burrascano and he also warns against having 'Lyme-blinders' on and blame everything on Lyme disease. "You could have other things that mimic Lyme, you could have other things along with Lyme. You never want to blame everything on Lyme and miss something important other than the Lyme."
I think it is extremely important to keep an open mind.
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Haley
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Wow that's crazy. You have a beautiful brain. I'm glad you found your answer.
I don't doubt that I also have some structural things going on, mainly in my jugular veins, which doesn't help my treatment.
I had a bullseye that covered my entire lower left leg, I also flicked the bug off of my leg, I thought it was a spider bite at the time. 2 years later when my entire body was shutting down, including my brain, one doctor mentioned Lyme disease, I looked it up and knew right away that I had Lyme. My illness had nothing to do with stress. Every organ in my body had been infected with many insidious bugs. I immediately knew that antibiotics helped me as I was put on IVs right away. This saved my life.
Hope you feel better and better every day.
[ 03-26-2015, 11:05 PM: Message edited by: Haley ]
Posts: 2232 | From USA | Registered: Aug 2009
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That was an amazing surgery, Gary! I would liked to have heard the narrative so I would know what I was looking at. I'm amazed at what a good surgeon can do. Wow. God bless him!
So you have a screw in your head now?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Hell now Im wondering if my Pituitary tumor is squishing my sella.
Of course that cant explain my positive LD urine DNA. Who knows stupid disease.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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lymetwister
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One reason I'm not 100% is b/c that Artery that was pressing on my brainstem was there all of my life, but it got big and fat called Dilochoectasia and when that happened, it was tapping on my brainstem with each heartbeat. So, hopefully over time, this will come back over to where it belongs now that the Artery is off of it. Hard to believe it was missed on 15 MRI's of the brain. Use the white line on the picture to find the middle of the brainstem and you can see how it's shifted using that line as a midline reference. The Arrow and number are meaningless.
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gigimac
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Lymetwister, I am so glad you have finally found relief.
I wonder if there are any other illnesses that could mimic lyme and make u feel like u r herxing from abx and herbs?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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LisaK
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wow, this is amazing.
I have a feeling for a long time to take my MRIs to someone to get evaluated. I just have a strange feeling that something was overlooked for some time now.
maybe one day I will do that.
I mean, I know I have lyme, but, something else just nags at me.
I am happy you found answers!!!! yay!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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dbpei
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Amazing story Lymetwister! I am so happy for you that you figured out what it is and you are feeling so much better after all these years. It was so very kind of you to share this with us.
I have often had the feeling that it is more than (or something different than) Lyme that is my problem. I wish I could read MRI's! I did get an MRA soon after my hearing loss and after a lesion was found on my first MRI. Perhaps that should give me comfort that something like what you have was not missed.
What is a LP?
[ 03-27-2015, 04:03 PM: Message edited by: dbpei ]
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BoxerMom
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LP is lumbar puncture. Also called a spinal tap.
posted
Thanks for posting your experience and the video of your operation; the part where the surgeon was trying to successfully tie the black cord around the spike was fascinating and nerve-wracking!
I'm happy that you're feeling so much better after having this treated; what a relief for you!
Your testimony could be especially helpful for people who don't ever remember having a tick bite, yet they have similar symptoms that you have had (although there are plenty of folks who don't recall being bitten and yet do have Lyme).
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poppy
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Another reason we need to have better lyme tests. All of this could have been avoided if you had the right diagnosis early on.
Of course, it is always possible to have more than one thing going on at the same time. Often in this world people are presented with choice a or choice b, as if they were mutually exclusive and the only answer. Always question these choices. It can both or neither as well as one or the other.
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Catgirl
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Awesome you feel better! Such a long journey too! I can't help but think lyme did this to your brain/pituitary though (herxing). Lyme messes with the pituitary, and just about everything else. Either way, you're better and that's what matters (wonderful!). All the best!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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quote:Originally posted by lymetwister: I started here almost 8 years ago. My Lyme testing was Negative but I did have a WA1 Babesia band. I tried IV Abx, Rife, Salt/c, Buhner herbs, etc. and I only got worse over time.
What a long trip, and definitely an example of why better testing is needed. I too had a WA1 babesia band, and i often wondered if it was a false positive. But, I did have a classic case of babesia in 2002 that I thought was the flu, and I had a bullseye rash in 2005 that was untreated.
So for me, I KNEW i had lyme, the big question was whether I still had it, and without proper testing, there is no way to know. I opted to treat, and I had two herxheimer reactions (3 days in followed by 4 weeks in).
Now three months post threatment, I have posty treatment lyme diease symptoms, burning pain, tingly and numbness on my hands and feet. Muscle and bone pain, extreme fatigue.
So I feel pretty confident I did have it. But, I also know that it took me a long time to get sick, and there was a reason the lyme got the upper hand. So I have never stopped searching for alternative diagnoses and treatments.
Honestly, I would be relieved if someone could say, you didn't have lyme but you had THIS. But, finding another cause of your illness doesn't necessarily rule out lyme altogether. Maybe you never had it, maybe it became a problem because of your other issues, its really sad we don't know.
I believe there are some people who think they have lyme and don't, because it is the great imitator. There are also people who have lyme and think they don't. Its an all around mess.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
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LisaK
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Does anyone have Lymetwister's info? or know how I can get it?
I live close (ish) to him and would like to contact him as I am having this same thing happen to me!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
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Lisa, I checked and I don't have it. And his YouTube videos are no longer available. He gave his name in them.
However, if you send him a private message, he should get an email telling him your message. I truly believe he would respond to you and probably quickly as he wanted the folks on LymeNet to know what he discovered.
Keep us posted on your case. I am very interested in it.
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LisaK
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ok TF I will post about myself as soon as I find out what the heck is giong on.
and BTW I did find Ghis name on youtube . so he's out there somewhere.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
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Lisa, did you see this post that Lymetoo wants to bring to your attention?
LisaK
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TF, yes, but it doens't mention him by name. hmmm.. but ive decided to let it go. I don't need more weirdos in my life. thanks!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
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I'm glad.
See that thread again. Now, someone has named him and told another incident about him.
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Lymedin2010
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