February 10, 2018 at 3:12 am #1151FloatawhileParticipant
Hello! I’ve joined in hopes that you can help me out. I’m 22 and have been ill my whole life but, I’ve been mostly bedridden/homebound for ten years. I’m hoping you can help me, especially by looking at my MRI for chiari and CCI. I know I don’t have any obvious issues but I know that some people can have a big herniation but be asymptomatic. Others can have barely any herniation and be very symptomatic. Anything you can give me is much appreciated.
After becoming bedridden in 2007 I was finally diagnosed with late stage Lyme in August 2008. I’ve been in very good quality treatment sense. I was as close as I’ve been to being well in 2012 but got hit bad by toxic mold when we moved, and lost all my progress.
We know I’ve still got some infections, and I definitely had them really really badly, but we’ve decided there must be something else going on. I’ve thus far been diagnosed with and treated for:
Chronic late stage neurological lyme, bartonella, babesia, CPN, MPN, and protomyxzoa rheumatica
Methylation issues similar to MTFHR
Immune deficiencies (that IVig won’t help with)
Sensory Processing Disorder
Uterine, external rectal, rectocele, and cystocele prolapses (surgically repaired in 2016)
Pelvic floor dysnersia, vaginismus
A chronic sinus infection that spread to my throat (in a couple of weeks I’m getting a tonsillectomy after realizing it had been infected for eight years)
Slight scoliosis as a child
I recently read that they’d changed the guidelines for chiari. I asked to get a head MRI. It was the first since I was twelve and my second ever. In my first MRI in 2008 they noted “low lying tonsils, not to the point of chiari” despite not looking for it. That combined with it bring a regular horizontal scan and my having braces at the time made me want to look into it.
My EDS doctor took three weeks, four calls, and two office visits just to tell us that she isn’t qualified to read it. The local neuro won’t give an appointment without a referral (which my EDS doctor isn’t responding to a request for) and the good EDS knowledgeable NS a few hours away won’t respond.
I have been waiting so long to get answers. If you can please tell me anything please do,I know Im sort of right on the line of chiari but I’m still wondering and I’m also wondering about CCI.
I have pretty much every symptom of chiari ever. And not just the main five that are on Wikipedia, I mean the list of about 100. Many of which are much more common in chiari/cci than in Lyme.
The same ages as chiari seems to get worse for most, so has my health. Mostly ages 3,8, and 11. I’ve had a headache and fatigue non stop since age three. I have also had tinnitus for as long as I can remember and what I now think were mini seizures causing auditory problems. I’ve had mental health issues since three as well, lots of anxiety, panic and also some rages. At eleven I became bedridden (in large part due to my Lyme, and being given 8 vaccinations because I wasn’t yet diagnosed with immune deficiencies or chronic intections). I began having seizures, palsy’s, slurring my words, numbness, tingling, twitches, spasms, and tremors. Some days I couldn’t use some of my body at all for hours, such as arms and legs. I also started having narcolepsy type episodes.
I’ve had these things so long I don’t know what’s normal and what’s not.I have mostly blocked my tinnitus out but if I really check for it it’s very loud and absolutely constant. My brain always feels like it’s pushing on my skull. Lots of pressure.
A few weeks ago when I started a new treatment for Lyme and my brain was more inflamed than normal it was the first time that that was happening while simultaneously thinking along the lines of chiari. Just as I’ve gotten used to everything else I had some of what I think are pretty tell tale signs. When they got worse due to the inflammation I was able to sort of put a name to sensations I’ve had forever. It really felt like my brain was being pulled down. That pulling sensation felt a lot like the ones I had with my pelvic organ prolapses before having them fixed with surgery. I also was much more aware of how dizzy I got when moving my head/neck.
One other thing is that like some others have said I very often feel and hear bubbling in my neck that now I’m thinking could be CSF draining. I was assuming and still think it might be related at least in part to my lymphedema, now I’m just not sure. I also wonder if they’re effecting each other because I’ve been told that there is a major lymph drainage pathway around your throat as well.
Tons of cognitive issues. I went from reading on a twelfth grade level in the fourth grade to a year later not being able to read at all due to lack of an attention spans, sudden visual learning issues (similar at least to dyslexia), and lots of eye tracking problems.
My vision is also always fluctuating. I see “visual static” constantly, although again have for the most part have gotten used to it. My eyes go back and forth from blurry to ok multiple times a day sometimes.
With the level of (integrative) treatment I’ve been on for this long (coming up on ten years) I should have made more progress than this. We know based on how I respond to antibiotics that I’ve still got some “bugs” in me. But there is some stressor on my body making it too difficult for my body to finally be able to rid itself of it.
I figure if my EDS can give me an external rectal prolapse by eleven and three more prolapses by nineteen, it might also make it so that my brain isn’t being properly held up.
In about two weeks I’ll be having neurol therapy and ketamine treatments done for the first time. I’ll also have my tonsils out (which will hopefully give my immune system more reach with the Lyme).
Thank you so much.February 10, 2018 at 4:09 pm #6243Terriann2Participant
First let me say how sorry I am for all you’ve been thru in your young life. I send my compassion and prayers to you. Have you watched some of Dr. Dinana’s videos? Also, she runs a clinic in Texas called Potscare wher she is now treating patients full time. If you go to that website, Potscare.com she has available to anyone a brochure that you can print out and read on some of the main issues she would tackle first when starting out treatment for dysautonomia. Something you might consider is trying diamox to see if you are dealing with intracranial pressure. Hopefully a doctor might help you out with a trial of this drug. It may help some of your symptoms of chiari and or CCI. It seems you are dealing with so much – but maybe that would be a start. She also offers a book “The Driscoll Theory” that may be helpful. You certainly seem like an incredibly strong young woman. Hopefully Dr. Diana will chime in soon to give you better advice. Take care Floatawhile.
TerriannMarch 31, 2018 at 1:58 pm #6269Lisette623Participant
Sorry to hear about what’s going on. My story sounds similar to yours. I was just diagnosed with cci in December. I also have chronic lyme but can’t afford treatment right now. The pressure in my head is what’s driving me nuts. I’m mostly homebound because of the head pain.
Do you find your headaches to be worse when upright? Do you have a bobblehead feeling? Have you ever had a spinal tap done?
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