Discussions By Condition: I cannot get a diagnosis.

Can Anyone Help?

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: Anonymous
  • January 16, 2007
  • 07:06 PM

Last monday my father slipped into...pretty much a coma. We haven't been able to find a reason for this. The drs are telling us that he has an infection at the brain stem, and swelling of the brain. But, they cannot tell us what is causing this. They have done so far 2 spinal taps, blood cultures, eeg, mri, the works, and still no cause to where the infection came from. They say that they are pretty sure that it was caused by either a bacteria, or virus, they just can't seem to find out which. A few years back, he was diagnosed with Bipolar disease. None of us (his 4 daughters) thought that was a correct diagnosis. He never showed any symptoms of mania stages, and was acutally a very calm individual. Shortly after being diagnosed with this disease, he developed what his Drs called convulsion disorder. He NEVER EVER had seizures before this diagnosis. He has progressively gotten worse. Headaches, memory loss, passing out, not steady on the feet. Could a misdiagnosis be a culprit? Could mixing wrong meds that he didn't need to be on in the first place cause this? Does anyone have any directions they can point me in? Anything can help at this point.

-praying daughter-

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  • I am so sorry to hear about your father, and I feel there is definitely a misdiagnosis going on here...have they figured out what the infection is? Have they been able to biopsy/culture it? Here is something I do suggest. Get a list of all the meds he was taking before the seizure and problems began. Go to www.drugs.com and click on drug interactions and type in each of these meds individually and then click on find interactions. This will tell you about all possible interactions between the meds. Also I suggest looking up each med individually and thoroughly going over side effect info. Many drugs have seizures as a side effect, even antibiotics! I check on all of my patients who are taking more than three medications and look them up in on this website. DOCTORS DON'T DO THIS FOR YOU! And if you see several specialists they just won't take the time to check for interactions from a drug prescribed by someone else. I have caught some scary interactions by doing this and I only see a dozen patient a week - I can just imagin how prevalent a problem this is - especially in the elderly!! Hope this helps and best wishes to you.Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 17, 2007
    • 05:27 AM
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  • Vitamin C given intravenously can detoxify his body and work on the inflammation. http://www.beyondhealth.com/articles/amazing-c.htmI'll pray for your Dad.
    Anonymous 42789 Replies
    • January 17, 2007
    • 05:36 AM
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  • Has he been tested for Lyme diease and its Co-infections??? They get in the brain too. And will cause many problems , even bi polar. Hope he is doing better soon.
    Anonymous 42789 Replies
    • January 17, 2007
    • 11:15 AM
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  • Acuann, They have done Spinal Taps, Blood Clutures, the works. He actually is alert as of last night. But, the Drs are STILL telling us that they dont know what caused this infection. They took him in for an MRI yesterday and we are still waiting for those results. On top of this, a nurse that I spoke with recently stated that we may never know what caused this infection. Because as the antibiotics continue to work the infection isn't left in the blood. I am not satisfied with the answers we are getting. Wouldn't you think after a week in a coma that the drs would have more answers?
    Anonymous 42789 Replies
    • January 17, 2007
    • 04:57 PM
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  • Acuann, They have done Spinal Taps, Blood Clutures, the works. He actually is alert as of last night. But, the Drs are STILL telling us that they dont know what caused this infection. They took him in for an MRI yesterday and we are still waiting for those results. On top of this, a nurse that I spoke with recently stated that we may never know what caused this infection. Because as the antibiotics continue to work the infection isn't left in the blood. I am not satisfied with the answers we are getting. Wouldn't you think after a week in a coma that the drs would have more answers?Did he get vaccines lately? Maybe a flu shot?Vaccines contain mercury- mercury toxicity activates the inflammatory chemicals in the brain.It might not really be an infection. Infections or "killer bugs" can't do that, unless a person is in very bad shape.Antibiotics and other drugs do that- and the events are often off the record.Please research on everything that is going on your Dad's system.Western Medicine can't measure levels of toxicity on the body.Best.
    Anonymous 42789 Replies
    • January 17, 2007
    • 05:26 PM
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  • I am not sure about vaccines, other then the one they gave him AFTER being sick. He did have an infected tooth prior to him getting sick. He is about 55 yrs old, so the filling that was in that tooth was mercury based and dissenigrated (sp?) But, they haven't found any mercury levels...which doesn't make any sense. It is now Jan. 22nd and my father woke up this weekend. The swelling has gone down, and the infection is pretty much gone. The funny thing is, the Drs are saying that we may never know what caused this. How can one day these "medical professionals" tell our family that my father will die and there is nothing they can do, to him just waking up and the Drs rubbing there heads in confusion?-Praying, Frustrated daughter-
    Anonymous 42789 Replies
    • January 22, 2007
    • 11:37 PM
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  • Did you do a thorough search on drugs.com for all of the meds he's taken this past year? If you could list them on this site I will do it for you:) The fact that the doctors are clueless suggests to me he may never have had an infection...it is still possible he has a reaction to meds. Please check this out - medication overdose and side effects are a leading cause of death in this country.Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 23, 2007
    • 03:17 AM
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  • An infected tooth can go systemic. The drilling can release a lot of infection into the body; that's why people who've had heart problems and immune diseases must take antibiotics before dental work.Yes, they can test for mercury toxicity. If they say they've found none, it isn't there.No, mercury fillings aren't a problem; the metal is inert (bound into a compound that can't break down). They don't "gas out", and we can't digest them, so they can't get into our systems (yes, I know what the websites say; take some courses in biology and chemistry before blasting me).It doesn't sound like he's bipolar from here. Most of the meds for that can provoke seizures, especially if you don't actually need them. He should get off them until he can get a proper diagnosis (they may have to taper him down slowly; many of these meds require step-down therapy to get off; if the doctor says this, don't rush him).You could try talking to his dentist or an oral surgeon to find out if that may have caused his problem. At least mention the dental work to the doctors in the hospital. It's a systemic infection source, and systemic infections can cause symptoms like he was having (dizziness, weakness, etc.).Best of luck to him. Just because they didn't find the cause doesn't mean they're incompetent, especially if they were chasing red herrings (like mercury).
    Anonymous 42789 Replies
    • January 23, 2007
    • 04:59 PM
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  • Acann, I was FINALLY able to find out what meds they had my father on, I will try to spell them how they sound to me, forgive me for any misspellings. Debecop for the mania,Dylentin for the seizures, and prozac. They have put him back on these medications, against his daughters wishes due to the fact they still haven't found a cause for the coma or infection. He still hasn't had a re-evaluation yet either. Things that are happening just do not make any sense. Like releasing him from the hospital into the care of a nursing home 2 days after he awoke, and still couldn't get his sugar from dropping to 34 at the drop of a hat...and now they have put him back on all this stuff regardless of any evaluations? Anything you could tell me about these medications will help in my sisters and I battle to get him re-evaluated. Sincerely,Praying Daughter
    Anonymous 42789 Replies
    • January 29, 2007
    • 08:33 PM
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  • Another thing to check is the area that he lives in some mold spores and mildew spores can be very toxic. I know it's a long shot, but I thought I'd throw it out there. He is on some strong meds as well and if he doesn't need them it's adding fuel to the fire so to speak.
    jackrorabbit 113 Replies
    • January 29, 2007
    • 10:15 PM
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  • They checked him for Black Mold, but as far as that goes, they came back negative. They even ran tests on poisons, such as arsenic (sp?) and even that came back negative. This is what makes me think that this isn't just an infection, it makes me think misdiagnosis...anyone have any thoughts? Praying Daughter
    Anonymous 42789 Replies
    • January 29, 2007
    • 10:29 PM
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  • :confused: UPDATE The doctor that is treating my father for his Bipolar specializes in Child and Adolescent Psychiatry. Should a Dr. who specializes in children be treating a man of 55????
    prayingdaughter22 14 Replies
    • January 29, 2007
    • 10:47 PM
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  • you just answered your own question. Bipolar has one very distinct quality found in all most all of them. Sex drives them. They want to cheat or are promiscuous. Or else they are extremely poor managers of money. They always seek the next new thrill, if its not there they get depressed and moody and go off in search. If this doesn't sound like him then find a new Doc, cause this ones broke.
    jackrorabbit 113 Replies
    • January 29, 2007
    • 10:54 PM
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  • Funny you should say that Jack. The whole Bipolar thing didn't even come up until my dad was found to have opened up numerous credit cards in my mothers name. When jail was inevitable, his new wife took him to this child psychiatrist in our hometown, and he was deemed crazy, he was bipolar, and the reason why he did all those things was because of the disease. We have always thought how conveniant it was for his new wife (who the police had record of her signing these credit cards too) to have gotten off scott free, and my dad...the most calm and rational one of the entire family was the one insane. This kind of thing has been going on for years, and the symptoms have only gotten worse. The "convulsion disorder" wasn't even diagnosed until a year or so after the bipolar....From that point, this Child Psychiatrist put him on Dyletin (sp??) for the seizures and left it at that. Over time, he has gotten worse and worse. He seems confused, he has difficulty with words, there have been many times where he will just pass out and wake up not knowing what happened or where he was. The days prior to him slipping in this coma, he was having horrible diarreah, and was sleeping for hours out of the day, shaking, vomiting, etc. I keep finding things on over medication and mixing things that shouldn't be mixed.... I just want my father back, Is that too much to ask?:mad: :mad:
    prayingdaughter22 14 Replies
    • January 29, 2007
    • 11:09 PM
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  • It reminds me of a movie called the disorderlies starring (ahem... showing my age) The Fat Boys. All about a man who is sick in his bed unable to do anything for himself and the disorderlies lose his meds and in a day or two he is a virial 70 yr old living it up. I have tremors and haven't tried it, but I know its a strong one.
    jackrorabbit 113 Replies
    • January 29, 2007
    • 11:20 PM
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  • That is EXACTLY what it reminds me of! Now, i wish that we could get these Drs to leave him off this medicine, and give him the evaluation! We still try everyday to figure this out, scared to death that its going to happen again. The only other thing we can do is talk to an attorney and FORCE them to give him another eval. from a Dr. that actually takes care of patients over the age of 10!
    prayingdaughter22 14 Replies
    • January 29, 2007
    • 11:29 PM
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  • you can also take him to a different doctor who writes a prescription to come off of the meds or switches him to a different one. With the dylantian(sp.) he will probably have to be weened off it. Keep your spirits up and the docs nose to the grindstone.
    jackrorabbit 113 Replies
    • January 29, 2007
    • 11:33 PM
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  • Drs can actually write a scrip to take him off of it? Even if its a different Dr. Thats new...I will have to check into that! Thank you! In the meantime lets hope that he keeps getting better. He started his speech therapy today, and they had him walking with a walker. He has to learn all these things over again, but he is still alive, and that is the most important thing of all. But, the fear that this can happen again is alive in my heart. I can't help read my father his last rites again....and we will fight tooth and nail to get this mystery solved.
    prayingdaughter22 14 Replies
    • January 29, 2007
    • 11:41 PM
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  • Hi, okay I did some research and it is a bit frightening. First of all, he should NOT be taking both Depakote and Dilantin as these drugs cause serious unpredictable reactions.Also it is possible adding Prozac to this mix has caused all of his problems. I can't say for sure but here is the info from www.drugs.com(it's quite a bit): Depakote (Valproic Acid) More common side effects may include: Abdominal pain, abnormal thinking, breathing difficulty, bronchitis, bruising, constipation, depression, diarrhea, dizziness, emotional changeability, fever, flu symptoms, hair loss, headache, incoordination, indigestion, infection, insomnia, loss of appetite, memory loss, nasal inflammation, nausea, nervousness, ringing in the ears, sleepiness, sore throat, tremor, vision problems, vomiting, weakness, weight loss or gain Dilantin(Phenytoin): side effects: slurred speech or staggering walk, hallucinations;Prozac(Fluoxitine) :Before taking fluoxetine, tell your doctor if you are allergic to any drugs, or if you have: seizures or epilepsy; Close observation for clinical and laboratory evidence of hydantoin toxicity is recommended if these drugs must be used together. Patients should be advised to notify their physician if they experience symptoms of possible hydantoin toxicity, including drowsiness, visual disturbances, change in mental status, seizures, nausea, or ataxia.Valproic acid (and its derivatives) may increase the pharmacologic effects of phenytoin. Toxicity may result, despite normal phenytoin levels. The mechanism may be related to displacement of phenytoin from plasma proteins. Also, phenytoin may induce the CYP450 metabolism of valproic acid. Similar interactions may occur with other hydantoins. Here is what I suggest - as with the previous poster you need to get to another doctor. Give him the drug info and maybe he will see this is a toxic combo. If not, find another doctor who will LISTEN TO YOU!!! These drugs need to be tapered off slowly. Your father will eventually be helped by a detox for his liver at some point in the future. Unless he stops these meds I believe they will consume him. I am not a medical doctor BUT I AM CONVINCED THESE DRUGS HAVE CAUSED HIS PROBLEMS. Hope this helps you and please stay strong.DOM
    acuann 3080 Replies
    • January 30, 2007
    • 01:30 AM
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  • Im glad your father is doing better:) im just wondering though-before the coma- did he have any trouble withtremors (mostly in the hands) or post traumatic stress symptoms?are there any close relatives with any similiar afflictions?any relatives with autism, learning disabilities, or retardation? There are certain genetic/hereditary disorders that can trigger the kind of symptoms you described that increase in severity with age. some can include "idiosynchronic reactions" to medications or enviornmental factors. Example being- my family has fragile x tremor ataxia syndrome- causes similiar symptoms predominantly in males over 50 years of age. A sleep aid (zyprexa) was given to aid in waking more refreshed in the morning. It was also the smallest dose available. I took it the first night and was unconscious for 3 days. no clue as to what happened during this time- i feel very lucky to be alive. The doctor said it was a very safe med with few or no side effects in studies- but due to a slightly different genetic makeup from the general population- it was a near fatal overdose/allergic reaction for me.It also would not likely have been found during an ER visit due to the tiny dosage. I have read about other disorders like this- very rare and not often looked at for diagnosing tough symptoms. Its worth a shot, hope it helps.
    kamsae 88 Replies
    • January 30, 2007
    • 04:53 AM
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