I had an appointment with an Infectious Diseases doctor yesterday. He believes that the etiology of much of my medical problems could be from an enterovirus over 20 years ago. Once in the body the virus stays and never leaves. It affects the muscles and the brain. It could have started the lupus syndrome.

I'm at a loss for words. I fully expected him to tell me that there was no infectious etiology at all involved in my illness. He drew some more blood for testing and will be reviewing slides from a procedure I had two years ago. This requires some pondering on my part.

Iris L.

I hope he has some good ideas, and something to help you, but I keep thinking "to the man with a hammer everything looks like a nail".

Iris,

Check out wikipedia for Enterovirus 71 (EV71).

Interesting but scary stuff.

Dear Mark, thanks for the wikipedia reference. I don't know if enterovirus 71 is the one that has my name on it, but it is in that category. The doctor who wrote reference #6, is my doctor. He'll know more after he examines my stomach biopsy and the blood titers.

The doctor spent some time talking about HIV/AIDS dementia, although the mechanism of the dementia is due to actual destruction of the T-helper cells in the body. He didn't know of any neurologist or psychiatrist who is studying enteroviral dementa or dementia from other viruses. Apparently this is a low interest field. I guess I should do some searches for that.

Iris L.

Apparently there is research being done on viruses and dementia. Here is one link I found: http://www.webmd.com/brain/new...-infections-dementia


Iris L.

Amazing information Iris, simply amazing. It's so exciting, when we find a doctor that really knows things that are important to us.

Iris,

Has anybody discussed the dangers of vaccines to you? As a pediatrician, you were sold the lie that they are harmless. Studies show that they can break down the blood brain barrier in people with less than strong immune systems.

The inflammation antagonist can cause the body's immune reaction to wrongly target the myelin and schwann cells.

Vaccines are a "cow is already out of the barn" issue for you but the research is telling.

They tell us that the down side of vaccines is much less than the up side. That is like telling someone that they have a 1 in 160 chance of an autistic child. To the family with the autistic child, the ratio is 1 in 1 or 100%.

At least you have found someone who is paying attention to you concerns.

Actually, there is quite a bit of research going on into whether viral and/or bacterial infections trigger neurodegenerative diseases. One of the better review articles I've seen is at:

http://www.medscape.com/viewarticle/574944

I've also just found an extremely interesting (but also quite technical) review that ties together some of the cellular pathways that may be involved:

http://www.uni-tuebingen.de/un...agyReview-screen.pdf

I haven't searched the literature in this area in a while ... think I'll spend some time looking for the newest hypotheses on this.

To Mark,
I'm very proud of the service to humanity my profession, pediatrics, has provided by saving children and society from the ravages of polio, smallpox, diptheria, pertussis/whooping cough, rubella, measles, meningitis, and other life-threatening and disabling diseases through the use of vaccines.


Iris L.

Dear JAB,
As always, you are on top of the research in this area. I will take a look at those articles. Thank you.

Iris L.

Iris,

Vaccines have an important function. The problem is when they are combined and too many are administered at the same time. The studies suggest that by administering too many vaccines, especially dead cells vaccines, the body of some people gets overwhelmed.

The way 'dead virus cell' vaccines work is by a combination of the dead virus cells and an antagonist. The antagonist triggers an immune reaction. When the immune system goes looking for the invaders, it cannot find any live invaders. It keeps looking and targets the dead virus cells that it does not recognize as human cells. It recognized the foreign proteins in the dead cells.

When there are too many different dead virus strains, the immune system can go haywire. When this happens, it can start attacking healthy human cells that have similarities to any of the dead cells. This is often nerve cells or myelin or schwann cells, intestinal cells (Crone's disease), connective tissue (arthritis), etc.

The protocol considered safer is to administer the vaccines individually with a six week period between shots.

An interesting study was done where they searched for communities with low incidence of autism. They found two distinct communities. A cloistered homeschool community in Florida and numerous Amish communities. The only commonality between the two was that both did not participate in vaccine therapies. The homeschool group and Amish both had religious and personal choice objections.

A study of Somali children born in the USA vs Somalia shows a much higher rate of ASD in the US born.

Another study has found a small group of people are lacking the genetic code that enables them to properly metabolize and excrete the mercury compounds in the thimerosol based vaccines. As a result, the mercury collects in their systems (fat tissue).

A more recent study has found that pregnant women who have five or more amalgam fillings during their pregnancy have a much higher risk if children who develop autism spectrum disorders from the mercury in the amalgam. The mercury impact the neurological development of the infant.

I have not read anything about the impact of live cell vaccines. They use a different mechanism. The virus is modified to be less virulent. It replicates in the body until it has critical mass to invoke an immune response. This immune response is in direct response to a growing invader. In theory , this is considered a safer vaccine mechanism.

Odly, MMR is the most common MLV vaccine. Studies show that those of use who developed our immunity to measles, mumps, and rubella in the 1960 by normal exposure and illness have a much better immunity to M, M, and R. Same goes for chicken pox. Tetanus has a negative value to booster shots. The initial tetanus shot is best left alone with normal exposures best for maintaining immunity. At least, wait ten years or more between boosters.

The data shows that MMR can be attributed to 17400 fewer cases of metal retardation from 1970 to 1990 and 5200 fewer deaths during the same period. Prior to MMR, the mental retardation rate was 1 in 4000. Now we have an autism rate as bad a 1 in 160. Even if it is only 1 in 400, that is a ten fold increase.

The purpose claimed for combining vaccines has to do with lower cost of administration by the health care provider. The vaccine manufacturers compete for the MMR market.

Unfortunately, most physicians are too busy trying to keep up with the pharmaceutical literature to have time to read opposing studies.

Now with Obama care lurking, there are studies being released that show that those over 70 can have their lives shortened by flu shots. This is the classic Obama end of life cost containment theory.

Iris,
What meds were you on prior to any diagnosis? You're sounding alot like a girlfriend of mine who can't get a diagnosis on her Lupus symptoms. Now they've told her she has Fibromyalgia.

candyc, I posted on "Is this the answer why we question?" the answer to your question about med. Basically I was on no meds except an appetite suppressant before I lost my memory. I was in perfect health.

15 years ago I had positive titers for lupus antibodies. Now I'm in remission. I have a chronic pain syndrome. They used to call it fibromyalgia, now they say it's not fibro. Who knows? I still need heavy doses of pain meds to help me get through my day.

Iris L.

Reflex Sympathetic Dystrophy Syndrome Association

Iris have you heard of this....I know two people with this. One is not doing so well.

Anita, thanks for this link. I'm checking it out. I don't think the chronic pain I have is neuritic pain, but it's still good to know about the resources available for a chronic pain patient.

Iris L.

Iris, I have peripheral neuropathy, lots of pain in the extremities, and annoying problems from the autonomic neuropathy. Lots of pain, concurrent with loss of sense of touch. I take um, I think 120mg/qd of Cymbalta. I'm pretty sure I was told that Namenda helps with nerve pain, and I'm on that too.

I've been offered prescription painkillers. My neurologist's nurse remarked that I'm his only patient to ever turn down a prescription. But, I seriously fear becoming dependent on painkillers. I've seen a bunch of people in withdrawal from pain meds, and their misery is incredible.

How do you handle the dependency issue?

Alan, I don't take any pain medications with a dependency risk. I take only NSAIDs (non-steroidal anti-inflammatory drugs). I just went back to plain old aspirin for about 10 days, now I'm back on Celebrex.

Aspirin gives me good pain relief but it has lot of complications and side effects. It's really like a miracle how much better I am able to move and function while on high dosages of aspirin, but I can't continue because of the risk of gastric bleeding.

Iris L.

Alan, I reread your post. Neurontin (gabapentin) and Lyrica are two new medications that are designed to treat neuropathic pain. I tried Neurontin but stopped after a couple of weeks because my vision became too blurred for safe driving. Why don't you try to look those two meds up and see if they might address what you're going through?

Iris L.

Iris, you're still on top of prescribing information? Cool. Thank you so much for thinking of that for me!

I was tried on Lyrica. At least at this moment, I can't remember why I didn't continue. Some major side effect problems I think, but I've tried remembering a while and I can't.

Iris,
Another interesting thread as I just saw a nurse practitnor (sp) from a skin specialist yesterday.
I had 3 diffrent things on my body that I showed her and wanted answers as to what was going on.
The last was alittle embarrising as I told her a week ago I think a spider might have crawled into my bed and bit me on the rear as I woke up that morning with a big bite!
Will tell more when I find out more.
Marcia

Marcia,

There is never anything on your skin that is not worth asking a dermatologist about. At the best, they dismiss it. At the worst, they biopsy it.

I need regular skin checks as I have 'dangerous' skin. Had about a dozen biopsies so far. Am due to find a new dermatologist for a skin check. I think I will call my neighbor's doc. He is watching my neighbor for melanoma. Cut out what he could. Now it is wait and see.

The only dumb health question is the one you never ask.

Alan and Jordan,

I have been on Neurontin for 8 years. I take it for body jerks, restless legs, nocturnal seizures, sleep anxiety, postural rigidity, and insomnia. It is great. No side-effects at all. Doses of over 4800 mgs is not uncommon with minimal side-effects.

I only take 750 mgs an hour before bed.

From my experience with friends who have tried it, the side-effects show up quickly if it is not for you. Otherwise, it is well tolerated.

It half life is only 8 hours so it clears fast. The generics (gabapentin) work just a good.

I had been on Klonopin (clonozapam) but it was brutal.

Alan, Whoa! I'm not on top of prescribing information! That's why I suggested that you look up those meds. I mentioned them because I had been precribed them for myself. I am definitely not prescribing medication for anyone here.

I'm really pleased at how the aspirin has helped the pain. I can move again and my muscles don't burn!

I wonder how many AD/dementia patients are dealing with chronic pain from arthritis or other ailments? If I were still practicing medicine, I would plan a study to see how much is the impact of chronic pain on the functioning of AD patients? Perhaps some of those nighttime agitated patients are agitated because they are in pain, and need pain meds instead of a mood stabilizer or antidepressant.

Alan, I hope you do find some relief for your pain. After being disabled with chronic pain for over 2 years, I'm shocked at how little it took to make me feel better so quickly. Now I just have to work on the fatigue and the memory.
(lol)

Iris L.

Marcia, When I practiced pediatrics in Los Angeles, we would sometimes run into a child with a spider bite. In CA we have black widow spiders and brown recluse spiders (transported from Texas). They can cause some damage.

But don't be embarrassed by problems around the tush. Doctors and NPs are used to the body au naturel.

I hope your bite clears up soon!

Iris L.

Sorry to startle you, Iris! Don't worry, you've always been conscientious to not offer a professional opinion. I'm just trying to give you a compliment.

I too wonder about how many people with dementia have chronic pain. Along that line, I wonder how many with dementia have peripheral neuropathy, as I do. My whole nervous system is slowly shutting down. Interesting way to go, better than many I suppose.

Mark, thanks for the Neurontin information. I'm glad it works for you. Lyrica did something bad to me, can't remember what it was, but I couldn't tolerate it. But then, lots of people noticed an improvement with my cognitions around two months after I started Namenda, and plenty of people get sick from that even.

Forgive my not knowing if you've said elsewhere Mark, but, what kind of seizure disorder do you have?

I have undiagnosed and intermittent petit mal (absence) seizures. I also have an undiagnosed movement disorder. It can manifest as ballistic movements ( an intentional small movement becomes a full range movement). I can be observed grimacing in my sleep and tensing various muscles.
By undiagnosed, EEG's have never been able to show a significant problem, just some undefined irregularities.

Long ago (40 years ago), I was treated with Dilantin which was very bad for my gums, then phenobarbitol. Recently, with the Klonopin then switched to Neurontin. Neurontin is labeled as an adjunct anti-epileptic but works fine for me without any other meds.

My major problem that the Neurontin resolved was the inability to relax my body and mind to fall asleep. I also would start jerking just as I was drifting off. EEG with a sleep segment was attempted but was inconclusive.

"Inconclusive" is a curse word sometimes, isn't it? Have the doctors tried putting the EEG contacts directly on your brain? A buddy of mine went through that, to identify his particular temporal lobe epilepsy. It kept getting worse, so he had the offending temporal lobe removed. Left him with a significant memory problem, but not quite as disabled as he was.

I had seizure disordered buddies way back when the old medicines made their gums swell, and other fun side effects.

Nocturnal myoclonus, isn't that what they call the jerking as you go to sleep?

Alan, I forgot to ask the obvious question: You don't have diabetic neuropathy, do you?

Iris L.

I know a young man who has had a hemispherectomy. He had intractable epilepsy and the removal of most of his left hemisphere was required to restore his life.

I have also had 4 different 24 channel QEEG/VEP/AEP's done. The tech who did the last one had a lobectomy, Actually, I think it was two lobes that were infiltrated with a large tumor. He went on the get his master's degree.

He can read a QEEG waveform better than most neuro's. The neuropsychiatrist he worked for established a database of over 6000 brains. Rick could diagnose my dysfunctions almost as well as Dr Heyrend. I really believe Rick was just being submissive to his boss. The tech should not outdo the Doctor.

They did not find any seizure waveforms that they could identify.

The first tech noticed a "zone out" period where my brain became overwhelmed and lost focus. The artifact was removed from the record because the waveform record was sent out for computer, then specialized analysis.

The intermittent issue makes it difficult to define. They attempted to do a sleep segment but the position my head was held in to prevent the electrodes from being disturbed caused central apnea that disrupted my ability to fall asleep.

That was when I first became aware of my central sleep apnea. A chin toward my chest or left ear toward my left shoulder sleeping position frequently causes me to stop breathing.

I believe this problem is the root of my memory and other cognitive problems. Each time this happens, I can spend days trying to get function back. I am convinced that the cumulative effect is the cause of my slow deterioration.

My seizure like body movement problems cause me to change positions in my sleep resulting in a bad sleep position causing the central apnea.

So, if the Neurontin can help me sleep on my back for the whole night, I can wake up refreshed and alert. It has been a real struggle the past few months.

The solution to the central apnea is a diaphragm stimulator like the one made by Avery Medical. Unfortunately, it is still a constant on system.

They are working on a variable rate system that responds to blood ox and that can stimulate the diaphragm in a more natural mode. Currently, it causes the diaphragm to jerk each breath at a preset time that is set by the user. They say it is distracting to spouses because of the intensity of the movement.

My condition is following a similar path as my father's did. It is compounded by my history of brain injury but I believe the continuing force of deterioration is the hypoxia-ischemia from the apnea.

quote:

Alan, I forgot to ask the obvious question: You don't have diabetic neuropathy, do you?
Iris L.

Well, Iris, I believe that the official labeling is still up for grabs. Let's see if I can describe the situation: If I didn't have my peripheral neuropathy, calling what I have "Alzheimer's" would be clear cut. But I do have it, and that raises Occam's Razor. It's simplest to posit that my peripheral neuropathy and dementia are coming from a single disease.

So, I said to my PCP, "So, your opinion is that what I have is worse than Alzheimer's Disease?" He said, Yes. However, he and my other docs know that in a large enough distribution, anything is possible. At this point, it really doesn't matter. The disease process(es) in my nervous system have proven themselves to be progressive, fatal, and not really responding significantly to drugs.

My diabetic side hasn't been a problem, so far as I know. My A1c has been excellent for years, just with diet, exercise, and metformin. A few random finger sticks since Seroquel's been at work indicate that I'm getting blood sugars in the 200s, higher than ever before. Yet, my A1c remains good, so either it's lagging or I'm having swings into the 200s, but most of the time ok blood sugar.

Mark, are you using a CPAP? I've known a few people who sleep with one, and they all had problems getting used to it.

"A chin toward my chest or left ear toward my left shoulder sleeping position frequently causes me to stop breathing." Hmm . . . that sort of sounds like something's going on with one or more cervical vertebrae?

And, forgive my late-night dullness, but are you saying that you've had EEGs with electrodes on your brain?

I had my follow up visit with the Infectious Diseases Doctor today. I chose to post here so people can read the original post if they want to. The stomach slide was positive for the enterovirus. He said that means I have live enterovirus in my body which is probably causing my brain, muscle, and gastro-intestinal symptoms.

There are about 80 known enteroviruses but blood titer tests for only 11. My blood titers for enteroviruses is not diagnostic, meaning not high. Enterovirus is in the same class as polio virus. The doctor drew blood today to check my T cells.

There is currently no drug treatment. The FDA has a drug pending for treatment of hepatitis C which he wants to try on his patients when that drug becomes available. As yet the drug is unnamed.

The herbal treatment he has for me involves an herb called oxymatrine which is used in traditional Chinese medicine. It is supposed to modulate the immune system to contain this virus.

The doctor was interested in pain and fatigue symptoms. He did not seem interested in cognitive symptoms. I told him I was doing better with the Exelon patch and Namenda. He wasn't aware that Exelon came in a patch.

The main thing he said that was important to me is that as long as the virus is in my body I will have the same symptoms. I have had significant memory and cognitive problems since late 1987, now 22 years.

What I can take away from this:
Whatever I have, started in 1986. There are times when the pain and fatigue are almost as bad as it was in the late 1980s and early 1990s. During this time I have had many treatments. Cognitively I am somewhat better. I think the antidepressants and anxiolytics that I took in the late 1980s and early 1990s helped. The Exelon patch and Namenda are definitely helping my memory and my daily cognitive functioning.

I'm getting cognitive rehabilitation of the type given to post-stroke patients at the rehab hospital. I have home cognitive therapy to help me sort all this out.

I have several doctors on my case:
The neurologist prescribed Exelon patch.
The neurologist prescribed Xyrem for insomnia.
The geriatrician prescribed Namenda.
The rheumatologist prescribed Celebrex for pain.
The physical medicine and rehabilitation doctor prescribed the cognitive rehabilitation.
The geriatrician also prescribed the cognitive therapy.

What do I have?
I have systemic lupus, confirmed by blood tests.
I have anti-phospholipid syndrome, confirmed by blood tests.
I have fibromyalgia, based on clinical diagnosis (no blood test available).
I have chronic fatigue syndrome/myalgic encephalomyelitis, based on clinical diagnosis (no blood test available).
I have depression, based on neuropsychologic testing.
I have cognitive deficit n.o.s., based on neuropsychologic testing and clinical diagnosis.

I don't like that I have to have so many doctors to get sufficient treatment. It's only because of the knowledge obtained from the members of this board that I am aware of the treatments that are available for memory and cognition problems. I know for sure that I would not have gotten this far without the members here. A big THANK YOU and MUCH APPRECIATION to everyone who has ever posted on this site.

For now I'm going to continue the Exelon patch and Namenda and the rehab and therapy sessions and see what happens.

Iris L.

Alan, I re-read your posts about peripheral neuropathy. Impaired insulin response is implicated in Alzheimer's disease and vascular dementia. In fact, I've read Alzheimer's being described as diabetes type 3.

Here is a link to an article you can read. http://www.neurology.org/cgi/c...chid=1&RESULTFORMAT=

Eeven though your Hgb A1C might be acceptable, try to keep your bood glucose levels in the normal range. I think it could help you.

P.S. I'm dealing with an "impaired insulin response" problem myself. I'm working on cutting back on carbs.

Iris L.

Thanks Iris. And congratulations on a successful evaluation. Seems the biggest challenge will be communication among all the parties.

Re: diabetes, blood work says my insulin level is abnormally high. Some research says that hyperinsulinemia can hurt the brain, can cause dementia too.

Sometimes I'm amused, as I picture multiple processes in my body that are trying to kill me. I wonder about which one I should root for. Not that it matters, but it's an interesting inner conversation.