posted
By encephalopathy I mean symptoms such as confusion -- hubby doesn't know his name or mine or what month it is etc. Has a stiff neck and a "brain swollen" headache -- his description.
These symptoms can last for an hour or so or even a day or more. Symptoms could be here today, gone tomorrow and back the next day.
During these episodes hubby has difficulty finding the right word -- where are you -- "a place for sick people". Other times just says the wrong word -- I think this is called aphasia.
My question is -- If this was you, would you go to the hospital?
Would you continue with antibiotics or stop assuming it was a herx?
I am tired of arguing with docs that he is confused and not himself. If they bothered to ask him a few questions it would be obvious -- but then he can't always speak during these episodes.
Surely someone else has had to deal with ducks in similar situations.
Thanks for any advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea, I have been having similar symptoms now for 16 months. I didn't go to the hospital until about 4 months into this. I wish I had gone right away, because now it is difficult to document things. Also I had an MRI and lumbar puncture, both of which seem normal. If i had this done at first perhaps something would have shown up.
I only read on the internet that meningitis can be followed by constant headaches, so this may be what happened to me. The infection is no longer detectable but the headache is still there.
I doubt they will be able to diagnose him but you will have evidence to convince a later doctor. Keep looking. Is he in the hospital tonight? I see you have another post re a visit to the hospital.
Paula Carnes
-------------------- Paula Carnes Posts: 23 | From Las Vegas, NV | Registered: Jan 2007
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Actually hubby does have a diagnosis of Lyme, Babesia (may be gone but not 100% sure) and Bartonella. All undiagnosed for first 2 years and basically untreated for 3 years.
Hubby did have 3 spinal taps back in 2001 and 2002 when he first got sick. 2 were normal and 3rd showed elevated protein. At the time of the abnormal test he was unconscious for 15 hours one day in the hospital -- neuro's tried to convince me to have him admitted to the psych ward despite spinal tap results. Of course none of those tests were positive for Lyme -- they never looked for any other bacteria or viruses.
Has had ongoing neuro symptoms (mostly tremors/myoclonus) and G.I. symptoms (nausea/vomiting for over 6 years.
Several abnormal EEG's, but no seizure spikes. Neuro's will not diagnose encephalopathy based on abnormal EEG's because hubby takes Ativan for his tremors -- the results could be a drug effect. But EEG's done when he is less symptomatic do not show the slow waves that appear when he is most confused and symptomatic.
Hubby has a SPECT from Columbia done several months ago which says global hypoperfusion due to vasculitis or encephalitis which could be caused by Lyme. But SPECT scans are only for research purposes... blah , blah, blah...
Hubby had not really had any major problems with encephalopathy for the last 3 or 4 years since he did IV Rocephin. Recent meds added to treat Bart seem to have brought this symptom back.
Paula, I hope you have a good LLMD. Even so, it seems like eventually we still have to deal with the ducks from time to time.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I have been subject to the short terms effects that you mention. Much worse in the past. The hypo perfusion can be due to many reasons, it is totally non diagnostic. The problem with ceftriaxone is that it does have some effects on the brain besides acting as a an antibiotic. This is not well publicised but has been mentioned by the Dr's from columbia etc. the result is that not all Dr's will agree that resolution of neuro issues are due to the anti biotic effect.
I would forget the hospital, They will not know what to do. If there are stroke like symptoms then yes the hospital is of some use, but for chronic stuff, all you can get there is a possible case of MRSA....
Some of the antibiotics can also cause bain issues so it is important to research the ones you are taking. In the early days i knew nothing about Lyme. The spinal tap was normal and nothing could be found as being a problem. the syntoms where short term (days at a time) then remitted only to relapse in a few days. This continued as a downward sprial until the situation was quite grave. By this time I had exhaused all "specialist" options, in fact I had seen perhaps the best set of neurologists in the country. None knew much about lyme and each restricted his/her investigation to what they knew the best (Cjd, MS, heiriditary etc.). ID's had no idea based on the blood and csf being normal. I then elected to try some experiments. The one that was the most revealing was the use of prednisone in fairly high doses. This almost instantly releived some of the neurological issues. When I stopped a few days later, they came back but worse...
At this point I assumed that it was an infectious process (an auto immune process shoudl not have come back worse) and it was fairly easy to go down the list based of possible infections. Of course the big problem is figuring out if it is viral or bacteria or parasitic (maybe all three!) and what if any antibiotic/drug would work.
How often do these symptoms occur, DO THEY APPEAR ON A REGULAR CYCLE (** VERY IMPORTANT**). and is there a "cascade" of accompanying symptoms?
Also note that there are other protozoal infections that are not babesia. They do not respond very well to babesia drugs but some do respond to things like sulfa based drugs.
Also keep in mind that with any chronic condition, there will be some days that are better and some that are worse, on a recurring pattern.
I know you have been dealing with this or a long time and I know how difficult it is (even when you have direct access to the top specialists). I have a couple of questions, PM me if you prefer.
What has been the short and long term effect of antibiotics? Was there a good improvement and now a relapse or plateau or has the effect been minimal with constant decline? What did the MRI show? Do you remeber the "technique" used by the physiotherapist that seems to have releived the symptoms several months ago.
Also keep in mind that you might be delaing witha combination of effects, including an occluded blood flow to the brain that has so far been undetected. To check for this they would/should have done an MRA of the circle os willis as well as the corotid arteries.
There are also some hereditary vascultic diseases that affect the brain. These are best seen via an angiogram of the brain... The veins will look like they have kinks in them when this is present... (the treatment is prednisone in this case).
in any case, those are a few thoughts. good luck
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Does your husband have high intracranial pressure? When my kids' pressure gets really high, their cognitive function is affected.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Here is the reason lyme was excluded:
Lyme encephalitis was reported in one of their previous studies
ie.
13. Newberg A, Hassan A, Alavi A. Cerebral metabolic changes associated with Lyme disease. Nucl Med Commun. 2002;23:773-777.
Posts: 1184 | From north america | Registered: Feb 2003
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