I sent this email out to friends and family to get their ideas. My own brain has so much pain and muddling I particularly welcome others impressions.
How it is:
Probable exposure to Lyme in summers 2005 and 2006 with many tick bites in PA, NJ, VA and both dogs getting Lyme Disease
Mystery Illness-for 4 years no one can figure out what is wrong with me
Voodoo Quality=Neurological
Lyme Expert believes it is Advanced Lyme (plus a coinfection)
Other doctors (PCP’S, MD’s, ER Docs, GI Docs, Neurologists say it is nothing they have known but yes I am very ill)
Severe Head Pain and Tweaked out Agonizing Cranial Nerves
(Crushed palsy like symptoms on right side of face and head but no one but me seems able to see or feel but it is extreme to me)
(and seems to have migrated left also in past two weeks so now I have lots of weird twitching plus pain)
Constant “aura” floating bits in eyes since 2008
Stiff neck, neck pain (this was worse a couple of years ago but still flares up)
Joint Involvement= shoulder blew out 2007, then head, then left knee, and spine hurts also, and feet
Migraines (off the charts head pain) that don’t respond that much to the traditional migraine meds (goes on for 972 days)
Sometimes cannot walk as leg and head are so bad, knee blown out
Wake up since Nov 2008 drenched in sweat at night, in a delirium, like I have malaria (Lyme doc says this is likely babesia, other docs have no idea what this is)
Since Nov 2008 am almost obsessed with instinct/intuition that I have a parasite, that this thing attacking me is not me, but an invader, and I am trying to get away
Anemia
A period of heart involvement and palpitations
Extreme Disruption of Sleep due to pains, fevers, night sweats, head and leg pain like I want to die
Weakness in hands and clumsiness, trouble swallowing, all sorts of things that demonstrate my cranial nerves are being tormented
Sensitivity to light, and to sound like my head is made of paper
Hyperacusia, Vertigo
It is progressive, spreading, and debilitating.
I have thought for a couple of years I just have constant undiagnosed meningitis
Got much much worse on 3 weeks of antibiotics earlier this year which yes the Lyme Specialist says could be Herxheimer reaction (and oh god I dread that)
I remember once waking up a few years ago in a sweaty blur and looking over at one of the golden retrievers who was really ill and also sleeping ten hours and he raised his head at me, and I was like oh I am so sorry, we have the same thing, what is this? And then we both passed back out into our fevers
Since summer 2005 when I got that worst ever case of systemic poison ivy, it has seemed that something old and primal and African has been after me, as evidenced by dreams and hallucinations and nightmares, (this was 3 years before we actually went to Africa) and that poison ivy time is possibly also when I got exposed to Lyme, the same time I had the bad poison ivy which might explain why I never saw a rash, or maybe I never even got one (not blaming Africa for my illness! Just saying the immune system and psyche has felt it is up against something powerful/potent/nefarious from early evolution) And my dreams/nightmares are always saying this is something masquerading as something else, something in disguise, masked (oh never mind, maybe you know what I mean!)
I saw that girl’s video on the internet and she was me=mind-blowing life- ruining head pain plus joint pain so bad she couldn’t walk
How it is not like Lyme:
Something was very very wrong with me before 2007 also
Crippling fatigue/ hair loss/weird body pains/ allergies/awful periods/ neurological weirdness/ atypical seizures, blood sugar weirdness etc, some disease my whole life
The dizziness when eating slightly precedes Lyme exposure, I think? Maybe not? Around the same time maybe…
Crushed right eye and diminished vision in right eye slightly precedes Lyme exposure
The labs don’t show Lyme (though this is common/typical)
The way that it erupted in my head and upper right ab in Fall 2008 and landed me in the ER 3 times doesn’t seem like Lyme exactly but what the bleep was that? It almost killed me. And it continues…
Other docs are concerned I have MS, multiple sclerosis, and it is true that my symptoms do match MS, and that the MRI of head could be interpreted that way, but really, I just don’t think it is MS, or if it is MS, it is secondarily that and first something else…
Just sending this to you all in case you have any other thoughts…working with a Lyme Specialist in NJ that I like, (Dr. Streit)
and about to go see the Pain Specialist in Bellingham tomorrow (Dr. Way Yin). I retain some hope.
Hope you are all enjoying pain free days.
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