FTD Information Links

FTD Genetics: http://www.ftd-picks.org/?p=learnmore.genetics

Genetic Defects for some cases of FTD: PGRN, MAPT: http://www.ftd-picks.org/?p=research/200608_ResearchAdvance

Patient Update March 26, 2009

This will be a brief update to be followed by more detail soon.

Patient is recovering on a ventilator for more than 90 days now. Recently began using eyes. After the 1st 40 days of Patient being on anticonvulsants, they were discontinued at the request of the Family because the progress had not changed. At day 80 (approx.) Patient was said to not be responding (no brain activity) when tested while still (mistakenly) prescribed anti-convulsants during a recent week long hospital visit. But in the weeks before and after the anticonvulsants there are signs of progress. It was the opinion of the ICU neurologist that anticonvulsants were required despite no seizures EVER being recorded or witnessed while Patient is lying in bed. What impact has this had on the recovery of the Patient. We can prove it caused SEVERELY delayed recovery, which for many families in this situation, would have convinced your family members to listen to doctors and to turn off the machines. more to come....

Patient Update December 23, 2008

Patient was taken to hospital December 16 by ambulance. Six resuscitations were performed in a time period of about 40 minutes. Patient is now stable breathing assisted. Acute cause: seizure followed by aspiration, seizure, respiratory distress, heart failure. Swallowing difficulty and saliva were becoming factors in the two weeks leading up to this event.

Family is pleading with researchers working on discoveries in Frontal Temporal Dementia to contact us with a comment and your contact information and we will moderate the comment (all posts are first moderated) and not post the contact info to the blog.

Valproate is being administered by iv.

Current Diagnosis - FTD

The most recent diagnosis made is FTD ( aka fronto-temporal lobe dementia).
The details of this disease appear to explain Patient's symptoms over the past years. A key determining factor involves the age range of people with this disease. Patient's age falls into the category, which is why Patient cannot be diagnosed with the more common/general type of dementia (which strikes those of an older age group).
The drugs prescribed when beginning symptoms unfolded, are commonly prescribed for people diagnosed with this illness.

The disease has reached an advanced stage which involves weight loss, difficulty walking, carrying on conversation, and poor memory and cognitive abilities, excessive saliva perhaps due to poor swallowing function.
We are still open to forms of treatment for possible improvement of functioning ability.
It is not clear what caused this illness, however there is some speculation that it was a result of inflammation that was not caught/diagnosed sooner.
Patient's mother had some form of dementia.

Patient is no longer taking Lamictal, Zyprexa or any of the drugs in this category because the side effects were overwhelming difficult to deal with. Doctors informed us that this could potentially happen.
Patient recently started using Exelon, a small patch daily for memory.

Seizure Frequency and Diet

The following excerpt can be found at this site:
http://dogtorj.tripod.com/id21.html

"In addition to successfully managing the epileptic, the dietary solution provides insight into the wide variety of presentations of this elusive condition. For instance, the typical age of onset in the dog ranges from six months to six years. If this is simply a genetic defect of some sort, why does that first seizure occur over such a wide range of ages? Also, why is it often a progressive condition in the afflicted individual, beginning with milder seizures and longer intervals but changing into more violent attacks that are closer together? This suggests that the cause of the seizures is getting worse over time, doesnt it? The idea that there is a lessening of the epileptics ability to handle the glutamate by a progressive deficiency in the reductase enzymes just makes sense. As the glue-induced malabsorption in the gut worsens, the individuals ability to process the rising glutamate in the brain becomes impaired by the dropping reductase levels. This explains both the variance in age of onset and the shrinking intervals between seizures. In addition, the attacks get more violent, especially once we institute anticonvulsant therapy thereby allowing the levels of glutamate to reach more toxic levels."

Gluten Intolerance? Celiacs?

"I am currently off of all seizure & pain meds & doing GREAT! 

When I went low gluten (only the hidden trace sources) I stopped having seizures. I am walking w/o even a cane. Sleeping in regular bed now w/ lots of pillows"

Read this post by cybermommy/Deb on the following website:

http://www.glutenfreeforum.com/index.php?showtopic=32311

"Neurological conditions eg. multiple sclerosis, motor neurone disease,epilepsy, memory loss.

--Associated with Gluten

Diagnosis of Gluten intolerance in elderly patients is disproportionately high. This is because it is misdiagnosed and under-diagnosed by doctors.  Some Gluten intolerance is identified in children. 
But for others, it is not until much later in life that Gluten intolerance is actually suspected. 

Frequently it is triggered by some life event like divorce, job loss or serious illness.

The symptoms of both Non-Celiac Gluten Sensitivity (NCGS) and Celiac Disease (CD) become worse with age if left undiagnosed.

Many people suffer from headaches, mouth ulcers, weight gain or weight loss, poor immunity to disease, and skin problems like dermatitis and eczema.

But the common and well-known Gluten intolerance symptoms are gastro-intestinal (diarrhoea, flatulence, bloating etc.)

However sufferers improve dramatically within weeks on a Gluten-free diet.

After a few weeks on a gluten-free diet, newly diagnosed Gluten sensitive people find they are free of a raft of other symptoms as well which for years had compromised their lifestyle: flatulence, abdominal cramps, tiredness and their tendency to catch ‘bugs’ and viruses easily.

It is surprising how quickly the small intestine actually heals. Soon you will begin to absorb nutrients from food more effectively. The digestive tract gets back to doing its job normally and you will start feeling well again."  

information taken from:  http://www.foodintol.com/celiac.asp

Naturopathic Body Scan

Patient will be undergoing a Naturopathic body scan within the next 10 days by a Naturopathic Doctor to see if results reveal any new/compelling information that is helpful in determining the cause of Patient's problems.

Medication Frustration

Here is a recap of what we've seen so far with two medications.

10mg of Zyprexa + 150mg Lamical twice daily = The worst combination so far -- INCREASED physical problems (the worst/really bad--bent over to the ground, pain), INCREASED hallucinations/psychosis. This was the treatment upon leaving early June hospital visit. It was also discovered that Patient was administered HALDOL (dosage not released) during the hospital visit!! This is very upsetting to the family and we know that Patient was in really bad shape upon returning home from the hospital.

7mg of Zyprexa + 150 Lamictal twice daily = Major Dehydration, INCREASED physical problems, INCREASED psychosis.

5mg of Zyprexa + 100mg Lamictal twice daily = REDUCED physical problems, REDUCED hallucinations, INCREASED fainting/seizures.

5mg of Zyprexa + 125mg Lamictal twice daily = INCREASED physical problems, INCREASED paranoia. REDUCED fainting/seizures. (The current prescribed treatment)

75mg of Lamictal twice daily = some relief with back pain, suicidal thoughts, loss of appetite

35mg of Lamictal twice daily = loss of appetite, suicidal thoughts

In sum, Patient is not getting enough relief and there appear to be too many problems. This raises questions as to whether or not Patient should even be taking these drugs. And how much damage has been caused by these drugs?

Questions of concern:
Why does a drug for psychosis increase psychosis for Patient (Zyprexa) when the dosage is increased?

Why does a drug for seizures increase psychosis for Patient when it is increased?

Why are physical problems expected to reduce when Lamictal dosage is raised but physical problems and psychosis increase?

Why are Doctors recommending Zyprexa if there are serious warnings for those taking it that could be suffering from dementia?
Anyone who does a search on Zyprexa will see that " Zyprexa is not for use in psychotic conditions that are related to dementia." If Patient was given a suspected dementia diagnosis based on symptoms, shouldn't Patient go off of this drug, regardless of the dosage? Seems like even just a little (5mg) should be considered too much if there are any doubts about this drug related to Patient's condition. This is very disturbing.

Are seizures happening because of the overuse of anti psychotic medications?

Is patient experiencing drug-induced Parkinson's symptoms?

What if Patient goes off of Lamictal & Zyprexa for a length of time (return to baseline) and is evaluated and treated for nutritional deficiencies/problems using vitamin therapy?

Important findings of B-12

Vitamin B12:
Vital Nutrient for Good Health

By Sally Fallon and Mary G. Enig, PhD

"Vitamin B12 works with folic acid in many body processes including synthesis of DNA, red blood cells and the insulation sheath (the myelin sheath) that surrounds nerve cells and facilitates the conduction of signals in the nervous system. Severe depletion manifests as pernicious anemia, which was invariably fatal until the discovery of B12 in liver. But long before anemia sets in, other conditions may manifest, most often neurological problems (numbness, pins and needles sensations, a burning feeling in the feet, shaking, muscle fatigue, sleep disorders, memory loss, irrational anger, impaired mental function and Alzheimer’s) or psychological conditions (dementia, depression, psychosis and obsessive-compulsive behavior).

"Because the absorption process is so complicated, and therefore subject to various blocks, many people--particularly the elderly--may develop deficiencies even though they are taking in plentiful B12 in their food. Fortunately, the body absorbs about 1-5 percent of free B12 by a process of passive diffusion. Thus supplementation with large doses of crystalline B12 or with foods extremely rich in B12 can successfully treat deficiencies caused by compromised protein digestion or lack of R-protein, intrinsic factor or pancreatic enzymes. Supplementation with the coenzyme forms methylcobalamin and adenosylcobalamin (the forms found in the cells) can overcome B12 deficiency in the cells caused by lack of, or malfunction of, conversion enzymes.

B12 is found almost exclusively in animal foods such as liver, kidney, meat, fish, shellfish, milk products and eggs but the original source of B12 in nature is bacteria, the only creatures able to manufacture this vitamin. In humans and animals, these bacteria produce B12 in the colon; however, little if any is absorbed across the colon wall so we must get our B12 from animal foods. Bivalves such as clams, mussels and oysters contain high levels of B12 because they siphon large quantities of vitamin B12-synthesizing microorganisms from the sea.³ Production of B12 supplements involves fermentation procedures similar to those used for penicillin and other antibiotics.

[Patient has a known allergy to penicillin]

"A surprising source of cobamides is bacterial overgrowth in the small intestines, which can produce B12 analogs.¹³ The use of antibiotics, or a diet high in refined carbohydrates, can encourage the proliferation of bacterial overgrowth and lead to B12 deficiencies.

"Yet another area for concern is multivitamin products! The late Victor Herbert, a noted B12 researcher, maintains that many multivitamin products contain spurious and even dangerous analogs of B12 possibly formed when crystalline B12 interacts with other nutrients in multivitamin products, such as vitamin C, iron and copper.¹⁴

"High levels of folic acid can accelerate neuropsychiatric complications in persons with B12 deficiency.¹⁵ Since folic acid intakes of vegetarians tend to be high (from green vegetables and from grain products that have been fortified with folic acid), those following a vegetarian lifestyle may be at increased risk of neurological and psychological problems.

"The body stores considerable B12 in the liver. Thus a delay of 5-10 years may separate the beginning of a vegetarian diet (or absorption problems) and the onset of deficiency symptoms. Interestingly, the body can recycle over 75 percent of the B12 it uses.¹⁶ Used B12 is excreted in bile and then reabsorbed in the small intestine by the same complex process described earlier. Some people have a more efficient recycling system than others and hence can go longer on a vegetarian diet without signs of deficiency. However, more B12 is excreted in the presence of high levels of fiber, a common feature of vegetarian diets.¹⁷

MEASURING B₁₂ DEFICIENCY

"American medical opinion defines blood levels lower than 200 pg/mL as an indication of deficiency. This number is based on the level associated with the most severe manifestation of deficiency, pernicious anemia. In contrast, the lower limit in Japan and some European countries is 500-550 pg/mL, the levels associated with psychological and behavioral manifestations such as dementia and memory loss. Physicians in these countries consider blood levels of 500-1300 to be the normal range.¹⁹

"According to Dr. John Dommisse, an expert in B12 deficiency, the acceptance of high levels as normal in Japan, and the willingness to readily treat psychiatric symptoms with B12 explains the low rates of Alzheimer’s dementia in that country--as well as the reason for the very high rates of Alzheimer’s in the US.²⁰

"Even with the very low cutoff currently considered the risk point, large numbers of Americans are deficient. In the ongoing Framingham Offspring Study, involving 3000 men and women in the town of Framingham, Massachusetts, researchers found that 39 percent had B12 levels in the so-called "low normal" range, that is below 258.²¹ Had the researchers chosen the optimal range of 1100-1300 as a measure of B12 status, very few would have qualified as B12 replete.

"One of the most surprising findings of this study was the fact that the youngest group (26 to 49 years old) had about the same B12 status as the oldest group (65 and up), an indication that deficiencies are becoming more common.

SYMPTOMS OF AGING

"B12 deficiency mimics many of the features of old age--ataxia (shaky movements and unsteady gait) muscle weakness, spasticity, incontinence, slowed reactions, memory loss, disorientation, depression and confusion can all occur when B12 levels are low.

"Whether or not Alzheimer’s disease constitutes a condition of B12 deficiency is the subject of considerable debate among physicians. A recent and fascinating study of a family in Wales provides convincing evidence that low levels of B12 and Alzheimer’s are linked.²²

"Research shows tremendous potential for B12 to reverse mental decline in elderly patients. In one study, 61 percent of patients with mental impairment had complete recovery with supplementation; investigators speculate that those that did not recover had suffered from deficiency so long that damage to the nervous system had become irreversible.²⁴²⁵ Thus, routine early testing for B12 has the potential to prevent mental decline in the vast proportion of the elderly. By the time Alzheimer’s is conclusively diagnosed, it may be too late for supplementation to be effective. Supplementation results in little improvement for those who have had full blown Alzheimer’s symptoms for greater than six months.

NERVOUS DISORDERS

"One condition that would seem obviously correlated with B12 deficiency is multiple sclerosis (MS), a disease characterized by demyelination of the central nervous system. Yet many studies indicate that those with MS have normal blood levels of the vitamin. Japanese researchers have found that in MS patients, there is a decrease in the binding capacity of B12, thus inhibiting the transport of B12 into the cells, even in patients with normal levels in their blood.³³ Even so, they were able to achieve some improvement with high-dose supplementation.

"The benefit of B12 for depression may be due to B12’s ability to activate a substance called tetrahydrobiopterin (BH4), a compound which in turn helps activate "feel good" neurotransmitters like serotonin and dopamine.³⁴
Surprisingly, B12 has also proven successful in treating diabetic neuropathy, possibly because the condition of diabetes deranges B12 metabolism.³⁵

"Recurrent seizures may be a manifestation of B12 deficiency. One study found that individuals who suffered from seizures had low B12 levels.³⁶

Other neurological problems associated with B12 deficiency include urinary incontinence³⁷ and migraine headaches.³⁸ In one case history, B12 worked better than steroids as a treatment for Bell’s palsy.³⁹ Another case study reports that shaky leg syndrome responds well to B12 injections.⁴⁰

AN EXCEPTION TO OUR RULE

"In these pages, we have consistently advised obtaining vitamins from food (including superfoods) rather than with vitamin supplements. One good reason to avoid supplements derives from research indicating that they can interfere with B12 uptake, exacerbate the symptoms of B12 deficiency or even cause the creation of B12 analogs that increase the body’s need for B12.

"However, when it comes to B12 itself, supplementation with isolated B12 is often necessary and appropriate. The many factors in our modern lifestlye that block the complicated uptake pathways of this important nutrient--from nutrient deficiencies to exposure to toxins to factors in processed foods that cause reduced stomach acid, autoimmune disease and enzyme disruption--make it difficult to obtain sufficient quantities from our normal diet; and since vitamin B12 in supplements is produced in exactly the same way as B12 in nature, that is, by bacterial fermentation, the danger of high doses in most cases is negligible.

The authors wish to acknowledge the contribution of Lee Clifford, MS, CCN, for providing her extensive files on vitamin B12.

http://www.westonaprice.org/basicnutrition/vitaminb12.html

PREVIOUS POST

We need to revisit the blog post that was dated 11/20/07 and explore it further.

Current Diagnosis.

Patient has been given two diagnosis - one by the Neurologists, the other by the Psychiatrists: Temporal Seizure vs. Frontotemporal Dementia. However, it is important to note that even though Patient's symptoms were classified as frontotemporal dementia, there is no enlargement of the frontal temporal, which is commonly associated with this dementia. This raises the question of whether or not Patient truly has that disease, or the symptoms brought on as a result of the medication.
Also, it is important to note that Patient did not experience current type of seizures prior to going on psychiatric medications.

Perhaps testing and evaluation performed by a holistic doctor would be worth considering at this point and that some damage could be reversed.

Notes for followup

http://en.wikipedia.org/wiki/Ketogenic_diet

http://addspouse.proboards29.com/index.cgi?board=comorbid&action=display&thread=760

http://www.dr-bob.org/babble/20070719/msgs/772724.html

Patient Overview

A recap of Patient's history is highly beneficial/crucial at this point.

Around the time patient was turning 50 years old, patient tried to communicate to daughter that a problem in the brain was occurring, yet little explanation or details were given about what exactly was happening. Patient mentioned something about issues involving confusion or other supposed cognitive issues, yet there appeared to be no concern or cause of alarm from the family. No symptoms were visible from members of the family. Patient was convinced of having cancer, yet no confirmed reports ever surfaced from doctors. Patient appeared to have some sort of psychosis related theory.

At age 53 Patient experienced a blow to the head after being struck by a steel parking lot gate. No hospital visit occurred - patient did not lose consciousness.

Patient did experience at age 56 some depressing feelings when daughter moved away and got married.

Patient received positive mood lifts from taking DHEA, however use was discontinued due to hair loss.

A few years went by and then patient began to show signs of paranoia that family misunderstood to be a relationship conflict pertaining to a family member. Then, hallucinations, delusions and disturbing paranoia all began to surface and become very stressful for Patient and noticeable by family members. When evaluated by a doctor, Patient was given medication for supposed depression. The drug, Celexa was prescribed but it did not reduce patients paranoia, rather it sent Patient into a heightened, very paranoid state.

Celexa was halted and then switched to a different medication (an anti-psychotic).

Patient experienced continued paranoia and hallucinations while on Abilify.

On Respirdal, Patient's cognitive functioning was significantly reduced along with diminished personality. Patient also suffered from Tardive like symptoms, in which Patient's eyes would continuously close/want to stay closed involuntarily. This occurred within days of taking the drug. It was then halted due to these alarming/disturbing side effects.

Patient also tried Seroquel, which also produced negative side effects.
When seizures were suspected, Patient tried Tegredol and Keppra. Patient had a serious reaction to Keprra, which involved increased anger and paranoia.

In looking back on everything the past few years, one of the most crucial factors to point out is that as soon as Patient began treatment with psychiatric drugs as well as anti-seizure drugs, PATIENT HAS SLOWLY DECLINED IN MANY AREAS. PERSONALITY HAS DIMINISHED, THINKING ABILITY, RATIONALIZING, REMEMBERING DETAILS -- HAVE ALL BECAME A STRUGGLE. PATIENT'S HALLUCINATIONS AND DELUSIONS HAVE NOT GONE AWAY. Patient became less involved in social activities and has in the past 6 months suffered physical symptoms and episodes that the Family has never before witnessed in Patient.

Patient has not improved but clearly is struggling from something that is affecting the ability to live a normal life. Those who know Patient well can see that Patient is not the normal self they once knew.

Some friends have even described Patient to appear to be in a "drugged like state."
Patient is aware of some of the problems that are occurring with speaking, getting up, walking, pain side effects, etc and is very discouraged. At times the Patient's personality does seem to surface with moments of laughing and emotion expressed. Yet Patient has suffered so many physical symptoms it has interfered with many daily activities.

While on Zyprexa and Lamictal Patient has experienced decline in energy, fainting episodes, dehydration, dizziness, sleep disturbances, trouble carrying on conversations, troubles with word finding, memory disturbances, delusions, hallucinations (some related to smell). back pain, leg pain, weight gain.

When physical problems related to getting out of a chair or bed began to surface, family members noted that Patient could get up with no help if a motivation had occurred like the phone ringing. However, if Patient was sitting and then decided to get up, Patient would have difficulty initiating that act and gaining the muscle strength to rise out of a chair. In the past couple of months, Patient has needed more and more help getting out of a chair or bed regardless of a stimulant/outside motivation present.

At this point it is hard to know whether or not the physical problems and night time issues are due to an undiagnosed disease or condition, or a result of being medicated by the WRONG drugs. Patient has suffered MORE BURDENSOME/NEGATIVE side effects than one should undergo for drugs that should be providing relief from a suspected problem/illness.

Since patient's psychiatric symptoms did not significantly improve on medication, there appears to be no clear behavioral illness or psychiatric illness. From a common sense standpoint, if psychiatric illness was the main health problem, drugs should have done a much better job of correcting Patient's symptoms, especially after undergoing treatment with several types of psychiatric drugs. Also, medical professional has indicated that behavioral illness onset is rare for Patient's age group.

Regardless of what the real problem is, the Family has witnessed a gradual decline.

We can say with assurance that Patient was significantly altered once Anti-psychotic medications were introduced for treatment and has not returned to normal self -- the self that Patient's family remembers.

Members of the family still suspect that there could be an allergy, or chemical imbalance/deficiency that could have produced the initial symptoms of paranoia a few years back. Patient has suffered stomach/gastrointestinal upset on a regular basis for many years.
Perhaps there is a link that to this day, has still not been identified.
Likewise, the Family is interested and open to the natural medicine approach, as it may provide a valuable/added evaluation that has not been considered by all of the doctors involved up to this point.

Patient has not been clearly diagnosed, yet the journey continues and the family has not given up on finding the right treatment for Patient.

Currently, patient is being evaluated and tested again for seizures.

Patient Update

Since being released from the last hospital stay in early June, patient has been experiencing on-going physical problems that make it difficult to get out of bed or out of a chair without assistance. Patient has experienced frequent sleep walking episodes throughout the night in which patient has difficulty moving around without falling/passing out. Patient grumples/groans during these episodes. Cannot recall these episodes the next morning.

Upon leaving the hospital, Patient was prescribed a higher dosage of Zyprexa (10mg) and 150mg of Lamictal, whereas patient was previously taking 7mg and 150mg respectively (no increase). Patient had severe problems walking around and complained of pain in the legs. Could not stand up straight without discomfort. Hallucinations and delusions had not improved. Upon hearing of this, the doctor decreased the medication down to 5mg Zyprexa and 100mg Lamictal. Psychiatric doctor believes patient has been suffering from a temporal lobe problem and has suspected seizures to be a culprit, therefore has prescribed these medications.

Since being reduced to 5mg, the problems with walking decreased. The degree of hallucinations and delusions reduced as well but did not completely go away. Fainting spells started to occur more often. Patient experienced 4 episodes in one day. Patient has been unable to sleep throughout the night for months.

Patient Update June 21 2008

Received report that Patient experienced 4 drop attacks a day after beginning DHEA, RALA and ZINC. Two of the drops occurred without the Patient's knowledge. In the preceeding year, drop attacks have not been experienced prior to starting supplements. Recommended DHEA be withheld and followup discussion Saturday evening on progress. Patient is on dose of 100mg Lamictal and 5mg dose of Zyprexa daily. Patient was on unknown dose of furosemide since stay in hospital and has discontinued use. Flurosemide was prescribed because of severe ankle swelling at the time of the recent event leading to the hospitalization.

Pfeiffer Treatment Center, Warrenville, Illinois

The Pfeiffer Treatment Center was recommended by a reader.

"The Pfeiffer Treatment Center is a not-for-profit medical research and treatment facility in Warrenville, Illinois specializing in research and treatment of biochemical imbalances."

"PTC takes a unique, integrative approach to identify and treat the root metabolic causes of these symptoms with a multi-disciplinary clinical team involving physicians, nurses, dietitians, pharmacists and other clinical specialists."

Patient Update June 14 2008

One year on Lamictal. Patient was hospitalized for a week for an event that was classified as severe dehydration. The medication was not being managed by the family, but by the Patient. Upon release from hospital, the family requested the dose being reduced to 100mg daily and an effort to wean Patient off of Lamictal. Family also requested dose reduced for Zyprexa to 5mg. Patient's condition after a year on these two drugs can be characterized as "drug suppressed" and not making any progress towards improving condition. Drugs controlled Patient's bad symptoms (paranoia and mania) while also robbing patient of experiences of joy in life. Patient is not getting quality sleep, may be sleep walking now, was seen urinating in corner of bedroom at 3AM, and walking around without eyes open. Beginning course of low histamine treatment based on past experience with not responding well to SAMe. Asked family to provide the Patient DHEA, ZINC and R-ALA for the next week.

"Histamine Metabolism"

Histamine Metabolism

What is histamine and why is it so important? Carl Pfeiffer studied more than 20,000 people with schizophrenia and determined that 90% of them fell into three bio-chemical subgroups: high histamine, low histamine, and pyrroluria - hence the term “The Schizophrenias” (Pfeiffer, 1970; Walsh, 1997b). Histamine is a reflection of neurotransmitter availability. Histamine is integral in balancing the electrical activity of the nucleus accumbens, which is an area of the brain responsible for behavioral responses, filtering incoming sensory information, and communicating with the hypothalamus, ventral tegmentum, and amygdala (Shoblock & O’Donnell, 2000; Otake & Nakamura, 2000; Chronister et al, 1982). A plethora of research has determined that people with schizophrenia have poor ability to filter incoming sensory information. It has also been reported that 15-20 % of people with schizophrenia have high whole blood histamine levels and another 30-40 % of people with schizophrenia have low whole blood histamine levels (Heleniak, 1999; Pfeiffer, 1988; Heleniak, 1985; Chronister & DeFrance, 1982; Rauscher et al, 1977; Pfeiffer, 1972a).

A person with schizophrenia who has high histamine is under-methylated (Walsh, PTC- Ref. B; Heleniak & Frechen, 1989). A person with schizophrenia who has low histamine is over-methylated (Walsh, PTC- Ref. B; Heleniak & Frechen, 1989). Taking detailed patient histories is key (Jackson et al, 1998; Edelman, 1996; Jaffe & Kruesi, 1992; Pfeiffer, 1988; Walsh, PTC - Ref B). People with high histamine have been found with typical symptoms of high intelligence, thought blanking, low grade hallucinations, and thought disorder, perfectionism, competititiveness, obsessions, compulsions, suicidal and seasonal depression, defiance, and phobia.

High histamine individuals are inherently high in folic acid. Although folic acid is used along with B-12 in the production of methoionline it is also involved in histamine production along with B-12. Consequently B-12 and folic acid are strictly avoided in high histamine patient care. These patients need to avoid multi-vitamins.

People with low histamine have been found with typical symptoms of under-achievement, more severe thought disorder and hallucinations, paranoid thoughts with less pronounced obsessions, suicidal depression, cyclic or suicidal depression, and anxiety. (Jackson et al, 1998; Edelman, 1996; Jaffe & Kruesi, 1992; Walsh, PTC - Ref. B).

Excess copper and zinc defiiciency, discussed below under heavy-metal overload, are typical low histamine traits that need to be addressed (Sandstead, 1994; Wallwork, 1987; Pfeiffer & Braverman, 1982; Walsh, PTC - Ref. B)

Metal Imbalance

Metal imbalance is associated with schizophrenia, behavior disorders (including ADHD), and hormonal depression (Walsh, PTC- Ref.C).

Copper excess causes brain dopamine levels to rise in low histamine schizophrenia. “Copper poisoning with zinc deficiency will explain the present dopamine theory of simplistic schizophrenia since this condition occurs only in one-half of patients labeled schizophrenic”, that is, in low histamine schizophrenia (Pfeiffer, 1987b). Paranoia is also associated with elevated copper (Pfeiffer & Iliev; Walsh, 1997b). Copper oxidizes catecholamines such as dopamine and therefore propagates neurotoxin formation (compare "Niacin Section" above). Zinc imbalance is associated with central nervous system disorders such as schizophrenia and autism and several other pathologies (Walsh & Usman, 2001a; Ebadi, 1995; Walsh, PTC- Ref. C).

Some nutrients help remove heavy metals but environmental exposure must be addressed. This includes restrictions on diet and the elimination of environmental factors such as copper tea pots, copper sulphate (jacuzzi or swimming pool water), bad drinking water, prenatal vitamins, copper IUD’s, etc. (Walsh, PTC- Ref.B). Drugs such as neuroleptics, antibiotics, antacids, cortisone, tagamet, zantac, diuretics, and birth control pills, etc. may exacerbate copper overload. (1)

(1) Copyright © 2002 by Raymond J. Pataracchia B.Sc., N.D.

Vitamin B3 Test results

Patient has received test results back from primary care doctor showing that patient is extremely deficient in vitamin B3 (Niacin). Since hearing the news, patient is back on Niacin supplements. Deficiency may be explanation behind behavioral symptoms, weakness, bowel problems, forgetfulness and insomnia. We are waiting for the results from the other mineral & metals that were evaluated.

Patient Update Nov 23, 2007

A full week before admittance to the Epilepsy center at Henry Ford hospital, the Patient decided to discontinue prescribed 150mg of Lamictal -- only taking half and stopped taking Zyprexa. After the hospital visit, the doctors encouraged Patient to go back to taking the full 150mg dosage for seizure prevention. However, within a few days of taking ONLY Lamictal as prescribed, profound negative effects became obvious in Patient. Patient was struggling to maintain any type of focus: appeared to be in a total fog. Cognitive ability was extremely compromised. Patient was in constant motion wither going to sit or going to lay down, could not get comfortable, making 6 trips per hour to lay down. Patient could not understand easy questions and was feeling nausea, poor appetite, profound weakness being unable to get up from sitting position without assistance, poor posture, standing in place staring for extended periods of up to 10 minutes. It was so bad we were almost going to take patient to the hospital. On Nov. 21 Patient resumed taking Zyprexa prescribed dose and stopped Lamictal. Within 24 hours, Patient regained muscle strength, cognitive ability returned, nausea absent, appetite normal, 90% of excess sitting and standing absent. @48 hours emotions improved, cognitive speed improved, posture improved.


We should request Patient see a cardiologist for the orthostatic hypotension, and determine if current Psychiatrist can refer her to one. We have an appointment for Patient's B 12 levels and Thyroid to be tested. We would like to know Patient's histamine, copper, methylation, homocystene levels to specifically find vitamin deficiency and behavior subtyping. (There's a hospital outside of Chicago that treats patients based on these results).

We would like to know if there are any other specialized doctors that can be recommended for further testing or evaluation for underlying medical issue.

vitamin B12 deficiency

We are curious if there could be an underly medical condition with
dementia-like symptoms such as vitamin B12 deficiency.
(Patient's symptoms appear in bold font below. Symptoms are either
current or experienced at one point or another)

Neuropsychiatric Manifestations of Vitamin [B.sub.12] Deficiency:
Peripheral nervous system involvement.
Symmetric peripheral neuropathy, beginning with
symmetric parasthesias of the lower extremities,
can ascend to eventually involve the upper extremities;

hyporeflexia may be present; occasionally autonomic
neuropathy occurs, which can present as orthostatic hypotension.

Spinal cord involvement.
Dorsal column involvement: loss of position and vibration sense,
ataxia,  broad-based gait, and, occasionally, Lhermitte's sign.
Lateral column involvement: weakness and spasticity
(spastic paraparesis), urinary and fecal incontinence,
impotence, hyperreflexia, clonus, and
Babinski reflex may be present.
Subacute combined degeneration.
Spinal cord involvement and peripheral neuropathy.
Visual impairment.
Retrobulbar neuritis, optic atrophy, and pseudotumor cerebri.

Psychiatric manifestations.
Dementia, hallucinations, 
frank ("megaloblastic madness"),
paranoia, depression, violent behavior, and 
change in personality

Above information taken from
http://findarticles.com/p/articles/mi_m0689/is_n6_v41/ai_17913640

"Vitamin [B.sub.12] deficiency is thought to be a continuum with five stages.[9] These stages include: I, normality; II, negative vitamin [B.sub.12] balance; 111, vitamin [B.sub.12] depletion with possible clinical signs and symptoms (reversible neuropsychiatric findings); IV, vitamin [B.sub.12]-deficient erythropoiesis with possible clinical signs or symptoms (potentially reversible neuropsychologic symptoms); and V, vitamin [B.sub.12] deficiency anemia with probable clinical signs and symptoms, including irreversible lateral column involvement."
http://findarticles.com/p/articles/mi_m0689/is_n6_v41/ai_17913640

http://www.postgradmed.com/issues/2001/07_01/dharmarajan.htm

Some updates & observations

Patient and other members of the family admitted that Patient was dealing with orthostatic hypotension-like episodes several years back before Patient went on any psychiatric meds. Patient said thyroid testing in the past revealed over-active thyroid.
Patient is currently suffering from memory problems and cognitive impairment.
Patient scored low in neuropsychological testing taken in the epilepsy unit of the hospital by the neuro psychology department. Doctors evaluating patient recommended a complete neurological work-up. Suspects there could be dementia symptoms. Doctors also suspected there could be an issue with the autonomic nervous system, with regard to the orthostatic hypotension. Patient's heart beat is normal, no other heart irregularities found. Some of our research on dementia indicates patients struggling with dementia-like symptoms could actually be suffering from a vitamin B-12 deficiency.

"Because the symptoms are almost identical, many health problems are often mistaken for Alzheimers and other age related dementia. But, the problems causing the symptoms are usually treatable if detected early enough. Prescription drugs interactions and side effects, vitamin B12 deficiency and dehydration most commonly produce false symptoms of dementia. (According to Consumer Reports on Health, "Any new health problem in an older person should be considered drug induced until proven otherwise.")In other words, symptoms that some people (including many doctors) often dismiss as a "normal part of aging" — really aren't. "
http://www.aging-parents-and-elder-care.com/Pages/Age_Dementia_Next_Steps.html

The following tests should be administered:

The tests may involve some or all of the following, many of which are designed to rule out other possible causes for your loved one's problems:

• An evaluation of memory and mental skills.

• A physical exam, including a review of family medical history, to detect other medical problems, including possible interactions between prescription drugs, over-the-counter medications, herbal supplements, vitamins and/or mineral supplements. Many foods can also cause unexpected interactions with prescription medications.

• A nutritional evaluation to determine if dietary problems or improper eating habits may be causing the problem.

• Blood tests, including tests for vitamin B12 and folic acid deficiencies, thyroid hormone imbalances, anemia, etc.

• EEG (electroencephalogram).

• A neurological exam to rule out other disorders of the brain such as Parkinson's disease, hydrocephalus (fluid accumulation in the brain), prior strokes and mini-strokes, brain tumors, etc.

• Brain Scan (CT or MRI).

Patient Update November 18, 2007

ORTHOSTATIC HYPOTENSION was the only condition to come out of 8 days of tests at a Henry Ford Hospital epilepsy center. We have not had a full briefing from the doctors yet. Patient is returning home tomorrow. We are looking at information regarding blood pressure and blood supply to brain now.

Note that low blood pressure is a possible Zyprexa side effect - Patient has been off Zyprexa since a week before Hospital stay.


Entry: quote from "Amalgam Illness diagnosis and treatment" by Dr. Andrew Hall Cutler PhD PE

PAGE 159
"Methyl donors and compounds involved in methlyation metabolism help the liver transport fats, help with one part of phase 2 metabolism, and have other effects in the body - most notably antidepressant effects through increased brain serotonin."

... "Methylation both increases and controls histamine levels. Your body cannot make methyl groups - it needs to get them from your diet. SAMe, choline, TMG, folate and B12 all have similar effects via methyl metabolism, and lecithin, phosphatidylcholine and phosphatidylserine can sometimes also act as methyl donors in the brain."

links

http://www.latitudes.org/forums/lofiversion/index.php?t2056.html
http://www.diagnose-me.com/cond/C376825.html
http://www.diagnose-me.com/cond/C447056.html
http://www.ebiologynews.com/1523.html
http://www.ebiologynews.com/2754.html
http://health.yahoo.com/nervous-overview/drop-attack/healthwise--hw214611.html
http://www.alternativementalhealth.com/articles/walshQZ.htm
http://www.vitaminstuff.com/vitamin-b9-folic-acid.html
http://www.vitaminstuff.com/vitamin-b9-folic-acid-2.html

http://www.drugdigest.org/DD/DVH/HerbsSideEffects/0,3925,552122%7CLecithin,00.html

Hospital Visit

Patient is undergoing a week long hospital visit in the hospital unit that specializes in the treatment and evaluation of seizures. Patient has stopped medication to return to baseline and is being monitored with medical equipment. Behavior is also being monitored as well. Current team of doctors are looking for possible causes of seizure and psychological symptoms.


Info on aspartame & seizures, psychiatric symptoms:
http://www.mpwhi.com/aspartame_and_psychiatric_disorders.htm
http://www.holisticmed.com/aspartame/adverse.txt

Patient Update October 11, 2007

Many thanks to a reader for comments regarding the histamine levels method of determining the right vitamins and supplements. You can read the comments in the July 16 2007 post. Of interest to me now is the histamine levels and how our information should be split along those histamine levels. I am researching this now and have some links and notes to post here for our own reference later:

http://www.ionchannels.org/showabstract.php?pmid=2425593

http://www.ctds.info/5_13_magnesium.html

http://www.answers.com/topic/histamine?cat=health

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&list_uids=4336944&cmd=Retrieve&indexed=google

http://www.raysahelian.com/ps.html

The Patient began taking soy-phosphatidylserine again a week ago. There's info available which states it would "influence the release of histamine, glucose uptake in the brain" and "when both phosphatidylserine and calcium were added histamine secretion was remarkably stimulated, apparently through the effect of phosphatidylserine on calcium transport across the plasma membrane."

Patient Status: Positive improvement. Interest in religious activities greatly improved/normal and may indicate healing in condition. Trouble finding words occasionally but flow of thought and conversation improved.

Patient Update July 16 2007

Patient spent the past week in hospital under supervison and all tests were renewed. Seroquel has been abondoned. Seizures had been increasing up to the time of hospitalization. Hallucinations are now treated with Zyprexa. Initial observations of Patient following release are much better mood and memory as well as the range of topics in conversation significantly improved.

Meal Medication & Dosage

Breakfast: Lamictal 150 mg (1) Pill

Lunch: (No Medication)

Dinner: Lamictal 150 mg (1) Pill

Bed Time: Zyprexa 7.5 mg (1) Pill

Important info about Zyprexa http://www.eff.org/legal/cases/zyprexa/

Patient Update May 23 2007

Spoke with Patient at 9 AM. Thoughts were clear. Patient seemed excessively concerned about feelings or mood.

Patient Update May 22 2007

Patient experienced confusion and drowsiness after a full day on increased dose of meds. (150mg Seroquel at 11PM, 100mg Lamictal 11AM & 5PM) Doctor was called. Patient spoke to Doctor. Decision was made to not change meds yet for a few days.

Patient fell with dizziness at about 1AM (a couple hours after evening meds.)