- CASE FILE
Ex triathlete. .Overnight high temp, sore throat dizzy, loss muscle control and ability to stand.Systemic effect. Want to walk again
ABOUT THIS CASE FILE
I was a Triathlete and Marathoner until 2001 when I had a freak near death fall. Broke my neck and back. Unfortunately there were some mistakes with getting initial treatment and with surgery. Eventually I had to go out of state to get care. I ended up with an amazing surgeon who put me back together and turned everything around. I was me again and was able to run, bike and swim again but not competitively.
I ran on the treadmill and walked daily staying very active and had no pain. I walked everywhere. I had promised myself that when I got back on my feet after the initial fall I would walk for all who could not and I never missed a day. I far surpassed how others thought I might recover and I place a lot of that on how active I was prior to injury. I bounced back after every surgery never missing a beat.
Then in 2009 I was told I had Pituitary adrenal insufficiency which was shocking as I felt great. I noticed I had some loss in muscle tone but I was not cross training and thought perhaps I was just a bit de=conditioned. A STIM test was done and results where the glands were not responding.
I was already on thyroid and estrogen patch so they added Growth Hormone and Medrol. I could see I was stronger everyday but I felt like the steroids were messing with me mentally and I was actually losing weight which I did not need to do.
.On treatment I also developed episodes of severe blood pressure drops like I was crashing and they could not regulate the hormones. Never keep me balanced.
Then my pancreas, and liver enzymes elevated, I started bleeding inside and developed malabsorption.. I was taken off the Growth Hormone and Medrol as it was suspected I had cancer. Or an underlying illness. I dropped down to 100 lbs then 95. My ideal weight is 120, I am 5'5". They began working me up for other illnesses, did a muscle biopsy which said I had small fiber myopathy possibly from being on steroids for ten months but unsure. . .
Still I was walking everyday and felt strong but keeping weight on difficult. I think due to the GI issue. If anything I just felt like I was not converting food to energy. I still feel that way. A little G2 with water and it helped alot. I was also peeing way too much. If I drank a liter I peed twice that, sometimes up to 5 gallons a day. It was very hard to keep up. Always feeling dehydrated.
They thought I had Carcinoid cancer, had three elevated markers. Started a trial of Octreotide and that seemed to help at least with eating symptoms and low blood pressure but it was short acting. . Sent me to Iowa to see a specialist who said it was suspicious of Carcinoid but my markers where not high enough for the special scan in trial. He said go home triple your dose and if you feel better come back and you may qualify for our special scan that Europe uses and we now have two in the states.
But when I got home I started going into these crashes all the time, and rushed off to the ER every other day.
I thought it was combination of they had stopped my estrogen patch which makes my sodium drop. fluids and blood pressure. I was also going into these awful GI episodes with toxic stool and then loss of all my electrolytes. My sodium would drop as low as 112 115 and the magnesium, potassium, and calcium would drop as well They would put me in OBS overnight and slowly hydrate me until the next day. But what was odd was it was like my veins would clamp down so hard they could hardly get blood out of me. It was always a very painful experience and scary. Needless to say dangerous. But when the toxic stool was out of me it did help but then I'd crash.
2012 after being off the Growth Hormone and Medrol for nearly 3.5 years My endocrinologist decided it best I be put back on it as repeat testing revealed I was low again. I wanted to start with just adding estrogen back in but he did Medrol first. Eventually adding the estrogen and then I began feeling better but still felt like I could not convert energy. Still I walked that would always seem to have some sort of positive effect on my brain and system. And I kept at the water G2 drink. .
I had to stop the Octreotide as it and the Growth Hormone have opposing actions. One should not be on GH if you have cancer or serious infection but it was felt I had no choice. We also started doing infusions every other day and put a port in me so I would keep my electrolyte up. I did this for four plus years. During this time many specialists but mostly GI and hematology and endocrinology worked me up for other odd things to see what might be interfering.
But this time on Pituitary treatment it was as up and down and didn't even go as well as it did the first time in 2009. I think in part because because we alwasy let my estrogen drop. And in 2009 I was on a couple other meds which I think helped unknowingly keep fluid balance and fight off what was in my GI an antibiotic and Motrin and also a multi vit . We stopped those three items when we restarted GH and medrol. Oddly the antibiotic was on was also same family as the drug used for vasspression. As well as infections of the GI, teeth and later I found out tic bites.
In 2012 I also returned to the Mayo Clinic and they didn't do much. Endo was thinking maybe it was something like Multiple Neuroendocrine Neoplasm issue.
Returned home and we just kept at stopping starting readjusting hormones but never getting me up to where I needed to be. I just didn't tolerate it well. Yet I was still walking everyday and doing my best and able to care for myself And well the crash and Gi episodes still seemed to happen occasionally. But I never felt right.
Sometimes it felt like hormone shifts would bring on the crashes and other times food and other times no reason. But when they started my autonomic system would be all over the board.
Start like confusion, pain belly, nausea, weak, like something was blocked from my upper GI to my brain and then my belly swells my gait gets ataxia gait vision blurs and then stomach cramps and severe watery stool. It almost acts like you have blockage somewhere or severe toxic buildup.
Then around April 2015 I noticed a sudden change. My stool was getting real bad again all the time. It felt like I really had a GI infection. But the normal stool testing did not show anything. Other than fat in stool. Yet is was awful and I knew something was not right.
My energy was not as good as it had been but I was pushing along, and I was so pale. My ferritin has always been a problem but I would get sicker on iron infusions my BP would drop and I would loose my speech and be faint. I thought it had something to do with sugar. I seem to have issues with even ringers lactate, I think its a sugar conversion issue. Or something in me the sugar worsens. My esophagus and upper belly pain worsening. daily and belly distention worsening with anything I ate. We kept at things. And now oddly I am putting on the pounds too and water retention.
Than something went really terribly wrong in June 2016 . I had been out on my long trail walk 2.5 mile uphill and 2.5 miles back down. I felt something bite me on the calf. Didn't think much off it swatted at it and kept walking. That night I noticed a big hole in my calf, and it was odd it was just like the exact same one I had a year earlier in 2015.
But in 2015 I did not know what it was, I had thought I ran into something. Showed it then to the docs they didn't know and then the second one I showed them and they didn't know.
A couple days later I am on my walk and I trip on a tree root and down I go. I felt my neck shift and a crack and my ankle broke too..
Then about a week later I came down with a very high temp, sore throat dizzy and headache on the right side. I thought had a virus
Too dizzy to drive I waited till day three to head to urgent care fever not dropping so I thought I had strep.
Started me on Zpak which I can't handle and doc called said not strep but take Doryx for three days which is Doxycicllin (sp) with your low immunity you will be covered. Doryx is the drug I was on in 2009 and we stopped in 2012. I had been put on it for breaks outs in my face which now I think was always related to something in my system.
Did for three days and then stopped. And then a couple days later I developed weakness in my throat, which then turned into weakness in para-spinal muscle that hold you up to loss of proximial muscles that hold us together and then eventually down to my legs and feet.
I could no longer stand on my own. I was also having to hold my neck as I could feel it was unstable. I didn't know what to relate what too but could tell the difference of spinal and muscle.
I went to the ER and was sent home unable to stand up. Numerous times. Now I have three things odd going on or who knows.
Hematology did a couple tests and I went to Endo doc and my aldolase and neutrophils where very high so he wanted a muscle biopsy.. I complained I felt like I had meningitis and toxins septic but no one would test for that. Endo sent me to neuromuscular doc but was not allowed to see him until I saw neurology and could not get in for ten months.
Eventually it seemed that my lymph fluid was backing up first the right chest breast and arm then the left side the belly face legs and eventually I put on 65lbs. Never ever been this heavy. Like my hormones were not working at all now.
Then I stared to feel like something would get blocked from the upper right belly to my neck and head and I would feel confused like I had encephalopathy (sp). My ammonia level was checked and it was up. Liver doc said not high enough to worry, but boy was I getting sick.
I started to have all sorts of odd systemic symptoms that I never ever had before . Like it would move throughout my body like you have a live parasite. Sometimes it seemed like it was in my brain, then down my spine to my back, other times moving through my GI my legs, artery's,. muscles everywhere even my teeth and skin..
I started to feel like my spinal fluid was thick and blocked, give me IV fluids and it helped everything and my head would drain then it would back up again and the confusion and lethargy started all over again. I really would feel septic. . Eventually it felt like it was destroying not just my muscles but my ligaments and every single tissue in my body. Pretty soon I no longer looked like myself at all. My blonde hair now gray and even changed colors when I peed or ate. I was like a chameleon. My eyes always bright where sunken and red and painful.
Then I lost a friend from tic fever and it dawned on me to look up the bite that I had . Bingo I tell my docs that is what happened to me, the two bites were tics. The fall and the bites where the only things that happened in short time but it was after the high fever sore throat etc that the muscle weakness came on.
It made sense to me why I changed so fast. I did not have muscle weakness prior to that I was still walking everyday. Oh if I went into a crash I would be weak but nothing like what is going on now. My muscles know act like they are ripping apart they have holes in them and ropes.
This is like my muscles can't fire.. The other is like when your electrolytes and protein are low. Next thing I know I am having all sorts of odd symptoms and eventually all over my body. .I'm now so ill I am afraid I would die and afraid I would not. Never been in this kind of pain in my life.
Tested me fr Lyme and said only one teeter was off. So negative. Hum. And I was getting no where with anyone. Went to natural path and was told this has to be some sort of coinfection and also tested me for mycotoxins came back elevated for mold aspergillious (sp) and also for something in my nervous system but my insurance will not cover anything he wants to do. I took the info back to my MDs and they try to get me into infections disease and they wont see me..
Still I can't get a muscle biopsy and they are now worried I have some form of myositis from infection.
A year goes by and I am getting now where but heading down hill bad. I can tell my neck is unstable and I can't stand up without falling over because of my muscles. I am confused as to where my feet should be. Little where withal from the neck down. The worse the pressure is in my brain or blocked feeling the worse I am downward.
I send my imaging out of state to three surgeons that all agree I need surgery I am unstable but no one locally will agree. And I am told I need to figure out the muscle thing first.
I jump a plane to Mayo again and they refuse to see me. Long story.
Head to Minneapolis and beg a neurosurgeon to see me and send me to a neuromusculer doc too. He says yes you have a neck issue but need to work on muscle issue first.
Sends me to neurologist and she is unkind till she sees me turn my head and I loose function and stand up and cant walk. Sends me to neuromuscular at UM and we think yeah.
But he reviews my records and says I think you have mast cell disease and should go to New York specialist but I was already tested for that. I told him we need a biopsy been waiting for two years it all happened after the tic bites. I was not like this prior to 2016 at all. He said no Go to NY and you do have something wrong in your neck. Figure that out.
Had a positional MRI per my request and they finally saw the C4/5 was tipping over and C6/7 was a problem too just as the other out of state surgeons said.
Called the Mast Cell doc in NY and they don't take insurance and my hematologist was sure it was not Mast Cell.
I see a surgeon in Seattle and he says that neck instability can not wait the muscle problem will have too. Schedule surgery and am saddened that he did more than I expected and it didn't feel right but I kept pushing through
But get this, day of surgery they start me on IV antibiotics Vancomycin and about fifteen minutes later my head is clear and I feel like myself and my muscles are firing. I don't feel weak I say let me talk to the surgeon lets postpone this, something in that antibiotic is helping me. They put me to sleep and that was that.
I work very hard with recovery . The muscle thing will not cooperate. I ask a friend a nurse about this antibiotic and she says that med is known as a big gun for tic borne diseases as well as other infections. . Tell my MD and they say too big risk. Argh.
I am now dehydrating again all the time loosing too much of something. We take blood and my brain literally shuts down and I can't speak and my head kills me. Like I am missing something. . We immediately have to give me fluids.
My neck shifts four times more and is worsening everyday. Level under the fusion is not holding. And I still can not walk. I had a few weeks I thought things would turn around and then bam backwards. Every time my neck shifted more neuro problems. And now every scan they give me I reacting to the MRI and Cts. I have said no dyes contrast etc or it makes all issues worse. They do not believe me.
I am having stroke like symptoms that started shortly after the tic bites and upper belly change. I tell them its not stroke because it even come on after eating. I am rushed to ER and they want to eliminate stoke even when I tell them no its not stroke so I am off the chart on imaging from 2016 till now as no one is figuring it out.
And well now as of last week I had something give way in my neck again and I have this awful pain and pressure in my head and feel like I am being strangled. I feel like an artery is torn or trapped in my head it is awful and pulsating, more dizzy and my vision is worse. I am also having what feels like reflexia and severe drop in pressure in my head all way to my legs . Feels like all my pressure and vitals drop and I feel nothing from the neck down.It feels like your spinal cord and your vascular system is blocked off. And it my blood pressure does go up my head kills me, that is not me.
I have never been in so much pain in my life and no idea where to turn now. I feel unstable neck all over again but worse. and well I already feel septic with these other mysterious symptoms. They say I can't be septic as I have no temp. I go the other way and then my BP and heart rate drop. Well my mom was septic once and that is how she was. I have had temp on an off but mostly its like my body is shutting down.
This is a very short version of what I have been through. Like others, I have been all over to clinics, and had endless testing prior to 2016. And lots of dropping the ball. But again prior to 2016 I had none of these symptoms at all, and I never felt like I was slowly dying ever.
And well as many on a journey like mine have probably experienced they think I am off my rocker. I have actually been told to go see a shrink when they see I can not stand up, walk normally, or turn my head and loose my motor function. I have had about 90 ER visits just since the first of the year. I have much better things to do with my time.
I am an ex athlete not a malinger.
But I have a theory. Just sad that no one will listen.
Back in 1994 I had a spider bite and got systemic staph. I came through that but it was that point forward I suddenly lost my gallbladder, ovaries and thyroid. Hashimotes can also be caused by a virus and infection. I always recovered and kept doing my running etc.
Spiders are in the same family as tics.
Tics carry many virus and confection that we can not test for. I think the two tic bites one in 2015 and one in 2016 set off my system and brought on this muscle weakness. Being on steroids further depletes the immune system.
But now it is everywhere. My muscles, spine, ligaments, vessels everywhere even my teeth are falling apart and infecting. If antibiotics help me there has to be something to that. I had sent my records to a program in NY called Discover and they agreed that immunology and infectious disease needed involved but it goes no where here where I live.
I think I have multiple deficiency's because even certain vitamins seem to help, and well not been worked up complety for that or anything neuromuscular. No bacteria, virus etc. . And I know my spine is not right at all. I can not turn my head to the right without loosing motor function as I mentioned and whatever happened this last week is dangerous..
As of this last week it is so bad I can not hold my head up on the right side and nearly black out. Along with other symptoms I mentioned above.
My low back has also shifted and is hyper extended it seems either my hardware has broke or something new has happened so that it not helping with being able to stand on my legs. Or whatever is infecting me is from my head down to my low back.
Because this has been so mismanaged I am now stuck in a cycle where new doctors look at my records prior to 2016 and think everything has been done. When in fact it has not and I was never ill like this before 2016.
We are dealing with entirely different issues. No doctor will ever understand unless they see me and whats happening. Just reviewing records will not paint the picture and thus I have fallen through cracks.
I need a very good neuro team, neurosurgeon, neurology and neuromuscular, immunology, infectious GI, vascular and time is wasting for me. With this new spine and brain issue the last week I know I am in serious trouble just with that..
With every movement if shifts and moves and it has changed my swallowing ability and vital functions as well. I have lost control and feeling in my breasts and abdomen muscles it has to be coming from the spine or this illness.
I can barely bring my arms up and I can't hardly use my right arm at all, and my legs they give out and won't coordinate right.
I can hardly speak at times and my vision is blurry and as of late the right eye is very hard to see. My right eye droops and my right side of my face droops if I turn my head barely and I choke and loose motor control. That's not normal. It feels like every vessel and muscle ligament has pulled apart from my neck and head and it trapped and I am unstable again. And most the time I feel like I do not even have an fluid in my spine brain or elsewhere. I feel like my whole body is hanging by a thread. When things start effecting your brain or nervous system it is frightening.
. Prior to 2016 I was taking care of myself and my mother, now I can barely take care of of myself A sharp contrast.
It has become very hard to plead my case, but I know I can be better . I know I can.
If it is not a tic disease than it is some sort of infection in my gut that has moved everywhere. I have swollen lymph nodes in my stomach and again a problem with my esophagus both of which were not there prior to 2016 either.
I want to be able to walk again, To be able to thrive and pay life forward. I really miss paying life forward and using my writing to help others. Eighteen years ago when I broke my neck and back and lost my job, I didn't look back. I did what I needed to do and then actually finished two college degree's online to help me recover and look to the future.
This is not me at all. And I want a fair chance to try to get well, like anyone else should have.
I want to be able to hold my grandchildren one day and to not have my children have to continue to worry about me or my loved ones. They all worry the next text or call will be that I am gone. Argh...that really saddens me.
Thank you so much for listening. . I am so grateful that this program was developed.
I'm looking forward to seeing the suffering of others eased.
Blessings and best wishes to all..