Frequently Asked Questions (FAQs)

Are there reasons for hope if you have a tauopathy?

There are several drugs in development/trials that are promising candidates for at least partially "curing" tauopathies like CBD – – see Files section of Yahoo site for a partial list of emerging therapies: First Line Of Defense and Second Line Of Defense. In addition researchers have shown that brain cells can regain function up to four months after "dying," and in 1999, Princeton researchers Gould and Gross, found the formation of new nerve cells, a process called neurogenesis, in three areas of the cerebral cortex impacted by CBD/tauopathies:

* Prefrontal region, which controls decision making.

* Inferior temporal region which plays a role in visual recognition. <http://biology.about.com/od/anatomy/p/temporal-lobes.htm

* Posterior parietal region which plays a role in 3D representation
http://biology.about.com/library/organs/brain/blparietallobe.htm

The next best thing to a full cure is called "secondary prevention;" you have the disease, like diabetes, but a therapy designed to prevent or attenuate damage from the disease is used and the effects are blunted and/or delayed. A number of drugs and nutriceuticals combating tauopathies are emerging on this front and have been incorporated into this regimen.

A few months ago, a physician friend of mine loaned me her copy of Ph.D neuro-anatomist Jill Bolte Taylor's book, "Stroke of Insight'" about Jill's recovery from a massive stroke. One morning, a blood vessel in her brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness .

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before.

Jill's book explains lots of neurological terms and is a testament to the brain' potential for recovery and retraining. This book gave me reason to hope and strive to "buy time" using whatever I could find in the research pipeline to preserve function, until a cure that stops the disease entirely is found. http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.\

Some caveats about this regimen:

• There are data available on the safety/efficacy of these supplements in animals and often humans too, but limited or no data on what happens when you take several concurrently.  Many are common foodstuffs, e.g.  curcumin (turmeric), trehalose (widely used commercial sweetener), and caffeine, but there is a risk that some combinations don’t work together or produce adverse reactions. I am very cautious about "stacking" supplements with similar actions, e.g. stimulating autophagy. You can get too much of a good thing. Since I know what will happen if I do nothing, my personal decision is to accept that risk and keep good records of what I’m taking and how I respond.  After 14 months on this evolving regimen, I have not identified any side effects that were not temporary.

• My form of CBD is on both sides.  You may react differently.

• It takes three to six weeks to see changes after you start taking some supplements because it takes that long for them to build to therapeutic levels.   Sometimes you feel worse before you feel better too.

I encourage you to ask your doctor to be involved and monitor your health and progress while you are taking these nutriceuticals, especially if you are in blood thinners like Plavix or warfarin.

From the maker of Longvida-Curcumin-Supplements http://www.longvida.com/FAQ_793e0059ec540b681f29ad4a8b13.html

Is it safe? The curcumin found in Longvida® is a 100% natural, generally recognized as safe (GRAS) food additive, and has been used in traditional medicine and food for thousands of years. In clinical studies, curcumin showed a positive safety profile at doses of 8-12 grams (8,000-12,000 milligrams) per day.(7,22)  Longvida® is reported to have an excellent safety profile, and showed no acute high-dose toxicity at the highest dose tested, a dose equivalent to 1000 times the recommended dose.

Is Longvida okay for people with dietary restrictions? Longvida® contains all ingredients found in our food chain, contains no animal products, and is gluten-free.  Longvida® may contain ingredients made from corn and soy.  Longvida is made using natural turmeric extract made and perfected in India. 

What precautions should be taken when using Longvida®?   Since each individual has different medical needs, we recommend that you speak with your healthcare practitioner about Longvida®.  Use during chemotherapy should only be performed under the direct supervision of a qualified medical professional.  Curcumin may enhance the action of anti-platelet drugs, high doses of non-steroidal anti-inflammatory drugs, or warfarin.  Do not take if you have a biliary tract obstruction or are taking a steroidal anti-inflammatory such as prednisone. 

Personal observations:

“Fuzziness”  Some technical terms used here in case your physician needs to know more about this effect.  Research on animals indicates that curcumin can correct synaptic deficits, a critical link in neuronal function.^[1]

• The “fuzziness” may reflect an imbalance at the synaptic level between “excitatory” impulses and inhibitory impulses; you need excitatory signaling for learning and memory but too much excitatory signaling could cause a sensation of mental " fuzziness.”

• Susceptibility to “fuzziness” seems to vary by individual; otherwise healthy people starting curcumin sometimes experience it.

• Lowering the dose of curcumin and gradually working up to the desired dose often solves this problem.

• Alternatively, one approved and commonly used drug for reducing too much excitatory signaling is called Namenda or memantine.  If already taking this drug, it is unlikely the patient will report “fuzziness” when starting curcumin.

Gastro-intestinal Upset   

Upset stomach when taking curcumin on empty stomach.  Small amounts of food are ok.  People who don’t tolerate taking their curcumin on an empty stomach often mix it with hot or cold milk, cocoa, in a smoothie, in yogurt or applesauce, or mixed with peanut butter and spread on a slice of toast.  The curcumin doesn’t taste unpleasant in foods with fairly strong flavors of their own. 

Diarrhea.  Not a common issue and likely to be dose dependent.  Several choices here.  Stop the curcumin until the problem goes away or go down to half the dose for awhile.  If not too severe, people will use OTC electrolytes like Propel or G2 Gaterade to support their recovery. Some people combine the curcumin with an oily food like peanut butter and try that mixture on a slice of toast to slow absorption in the gut.

Tips on taking the Longvida.  Based on the UCLA research behind the bioavailable formulation licensed and sold as Longvida, it takes about six weeks to reach therapeutic concentrations in the brain, taking 1000 mgs, twice a day.  The UCLA researchers found that curcumin works better if paired with one of the omega 3 nutrients called DHA (at least 250 mg) and between 200 mg to 500 mg of vitamin C.

You want to wait awhile after eating or before eating in the am, because digestion of a meal will interfere with the action of the curcumin.  Liquids are ok and if swallowing capsules are a problem, it’s ok to mix the curcumin into yogurt or a smoothie; even hot liquids like a latte or cocoa are ok.  The manufacturer, Phytosensia, sells it in powder form as well as capsules.  http://www.phytosensia.com/Longvida-Curcumin-Supplements.item   I have problems opening the capsules, so the powder is great.  Rough measure if you elect to use the powder is ¼ tsp = 500 mg and ½ tsp = 1000 mgs.  It doesn’t taste bad either--cinnamon works well in hot cocoa to blend the flavors nicely and I like it in peach yogurt.

There are obviously electro-conductive elements to this disease.  Glad that you are seeing some benefits from the UCLA experience.  From the reading that I’ve done, some of the damaged nerve cells remain able to return to function for a period of time, so remissions are possible.  After I began taking Longvida curcumin, in less than six weeks, my fingers stopped curling (also called dystonia) and my gait/movements returned to near normal or normal.  I had experienced the slowing down (also called bradykinesia) that you describe, so I was delighted when that seemed to respond to the curcumin.  That reversal of symptoms has persisted now for six months, so I’m a believer.  The dystonia (curling fingers) was still partially under my control at the time I began taking curcumin; my form of the disease doesn’t have the rigidity that you describe, and it reversed as well.  I am anxious to hear how you react to Longvida therapy.  It takes some effort to assemble the supplements--but it has worked for me and I don’t feel like a helpless victim.  I began to have symptoms in the spring of 2009 and two years later, I still have decent quality of life.

Adjusting dose as disease symptoms change. This regimen seems to slow CBD progression and has given me tools to deal with motor and especially speech problems (articulation issues like slurring and speed) that develop along the way. You will need to increase dosage from time to time to maintain your highest level of function. Everyone is different when it comes to dosage, based on size and response to the regimen. We need to be listening to what our bodies tell is working for us, and we learn from trial and error.  The first two weeks on curcumin, I had more frequent speech problems, my energy level and mood was down--not depressed exactly, but sort of dull.  I’m 5’10’ and 200 lbs and I dropped the dose back from 1000 mgs morning and night in lattes to one 500 mgs capsule morning and night, figuring my body was giving me signals to not push so hard.  Most important, the symptoms that improved after starting curcumin (gait slowing and curling fingers) have not returned.

My speech was very good for many months at that level of curcumin. The last eight months, it has been necessary to incrementally increase the curcumin to 1000 mg morning and 1500 mg at night to get the same effect. After adding the myricetin, I was able to cut back the curcumin to 1000 mg morning and night, with very good results.

Monitoring Your Progress

1. I periodically have lab work done so my physician can monitor my response to the regimen, including bleeding and clotting profile, ammonia, and metabolic panels.

2. If you play computer games like solitaire or Free Cell daily or a few times a week, you can track your high scores as a measure of hand-eye coordination and cognitive function. I use my solitaire scores as a surrogate for cognitive function, and while I don’t feel that I’m as quick as two years ago—my scores tell me that I’m stable.  I dropped 800-1000 points after I started the Longvida; that lasted about three weeks, then I returned to my higher scores and stabilized. 

3. If you record changes in your condition (physical, cognitive, speech, balance, ability to sleep, etc.) somewhere like a calendar or in notes, it will help you and your physician to figure out what works best as your health status evolves.

Parting thoughts.

My speech is not perfect and I have to work at maintaining my physical abilities, so the regimen is not a "magic bullet." It buys me quality time with my husband, family, and friends. I have seen symptom reversal and certainly major improvements in speech, movement, and ability. Life is good, all things considered.

That this cocktail of "emerging therapies" has not been through human trials is the reality that we who have incurable diseases must face. Sometimes we have to live by our wits, because science is slow. We are trying to buy time until some of the more promising drugs in the pharmaceutical pipeline become available to us. I am deeply affected by the stories of those who have suffered so
horribly with their disease and their loved ones who feel so helpless in the face of their realities. I sincerely hope some of you can benefit from this post.