Been losing my mind and reality more and more over the course of a year. I don't get joint pain, or flu like symptoms like other lyme patients.
However when I read up on CJD it struck a nerve, very close to home of what I experience.
Posted by Lymetoo (Member # 743) on :
There's a test for it, right?
Posted by Toppers (Member # 20083) on :
there is no current test except a brain biopsy
Posted by Myco (Member # 9536) on :
A very good medical intuitive told me that's what I had but I am almost well on antibiotics, specifically Rifampin and Zith. Had many neuro problems.
Posted by METALLlC BLUE (Member # 6628) on :
Probably wasn't a very good medical intuitive then. *teehee*.
Posted by tickssuck (Member # 15388) on :
Hi Toppers,
I'm pretty sure I'm treating the right beast, Lyme (fairly convincing WB)as I also tested positive for ALL co-infections too.
I just wanted to say, I don't really have any major joint pain, nor flu-like symptoms either. My symptom list is lengthy (like most of us), but is almost exlusively neuro-related...LOTS of horrible neuro stuff. So, not all (I acutally think many don't) have the joint issues, fluish stuff etc. So I think not having those symptoms does not mean for sure it's not Lyme. That's my story anyway....good luck. TS
Posted by Lymetoo (Member # 743) on :
Tickssuck is right. MANY here have only neuro symptoms.
Posted by Keebler (Member # 12673) on :
- If you see any improvement with your current treatment, that is a very good thing.
After reading about CJD a few years ago, I studied it a bit as my mother had displayed symptoms with rapid decline of an illness no doctor at the top hospital had ever seen before in St. Louis (in '84). Although she was dx with HIV/AIDS (from transfusions) a week before her death, she still had symptoms far more extensive and out of the ordinary (if there is an ordinary) AIDS.
I still wonder from time to time, if she might have had CJD or some variant. Of course, I then learned that the HIV can create any number and combination of symptoms.
And, she was never assessed for any sort of chronic stealth/tick-borne infection as, even in '84, should have been available had doctors been awake. Her main treatment was Tylenol #3. Seriously. They did not even treat the severe thrush (which, of course at that time, I had no clue about).
Creutzfeldt-Jakob Disease (not exactly from a bacteria but, more specifically, a prion) acts much more quickly once symptoms begin to appear. I doubt that any typical antibiotic would be effective. Prions are very difficult to treat - if there even is any treatment. (But if I ever were to face this, would consider IV garlic, for sure).
It's a good idea for everyone to know something about this and take precautions with raw and undercooked meat. I know that cattle are not suppled to be given feed mixed with the brains of other cows who could be infected, however, it just really helps to be aware of safety methods for prevention. Getting meats from local, independent free-range ranches is also a good idea.
Also be very careful with wild deer, etc. and be sure the animal was very healthy and dressed correctly (you know, no white after Labor Day).
[ 10-13-2009, 02:45 PM: Message edited by: Keebler ]
Posted by tickssuck (Member # 15388) on :
Yes, as Keebler mentioned, normally a rapid decline...I knew of a man who was diagnosed with CJD...his progression was extremely rapid. Once diagnosed, he died within 6 months, maybe even less. TS
Posted by polar blast (Member # 9142) on :
you have lyme!!
Posted by polar blast (Member # 9142) on :
rule it out at the ucfs in san fransico..stanly prusiners office..call them and ask them..they will clear your mind..
Posted by Tincup (Member # 5829) on :
Hey Toppers...
Check out Bartonella.
And to ease your mind...
My uncle, who ate with family every day and night... died of what was called CJD.
I watched the process. No one else in the family was ill from anything eaten.. and he was too old to hunt or be exposed anymore than the rest of his family...
And the symptoms looked like Lyme from the get-go... exactly.
BUT.. as there is no Lyme in North Carolina (according to the IDiot experts)... and he tested negative for it... he was untreated and died.
Don't let your mind get the better of you.
OK?
Posted by Maryland Mom (Member # 2043) on :
Toppers, I hope you take all the other posters' info and consider it carefully...it is true that CJD is caused by prions, which are much smaller than any bacteria and have different morphology.
Prions are so hard to kill that many surgeons won't risk reusing surgical instruments after exposure to them--even autoclaves don't always kill them. That's the bad news.
Good news is, you probably don't have this infection if you've lasted at least a year with it already. As others have said, decline is rapid and dramatic.
It may seem like all Lyme sufferers have symptoms other than just neuro symptoms, but that is often not the case. I know many Lyme patients who have nothing but neuro symptoms--I was one of them for 3 years until I was infected with another strain of Lyme in another state.
As tough as it can be to recover from Lyme, thankfully it is possible--I hope you consider sticking with treatment for Lyme and see if that helps!!
Posted by Toppers (Member # 20083) on :
All, thanks for the responses and you eased my mind TONS. Not to undermine the seriousness of CJD at all but sometimes it feels like something is going to eat my brain away. I have bart/ricksetta/lyme titers not sure why I constantly 2nd guess this stuff except to say one day I can be staring at the wall and have zero memory of what went on, and getting things done the next.
And yeah there has been improvement it just gets unnoticed in the daily neuro fog that is this world, hard to focus on the good because it is so brutally slow.
It's most definitely not CJD as I wouldn't still be working and driving still.
Posted by Pinelady (Member # 18524) on :
CJD has been documented to take over 10 years to
kill in some patients. Mostly in patients who
received contaminated human growth hormones. One kid was
17 from Canada who had received it as a child.
Thats why we at least have a western blot and needs
lots more research. Why it behaves differently they do not know.
Posted by Maryland Mom (Member # 2043) on :
Pinelady, In the cases like the one you cited, the reason the patient survived as long as they did is because the incubation period for prions can be years long in some cases. They are quite different from bacteria and are more like misfolded proteins. Sometimes it takes years before those proteins become incorporated into the hosts's cells.
Once that happens, though, symptoms begin quite suddenly, and once they do, the neurological decline is very rapid. It is extremely unusual for a patient to survive longer than a year once symptoms begin.
Because of the mode of transmission, this type of disease is extremely rare--about one in a million.
Posted by greenbow (Member # 21463) on :
i think we have all done the "self-dxing" before the lyme dx and we probably all still ? if the lyme is right on our bad days... but, i do know that CJD (mad cow)...you are DEAD really QUICK! hugs to you...i sense your anxiety about your symptoms..i have those same worries...IT IS LYME! repeat and YOU WILL BEAT LYME!...repeat this helps me.
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