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» LymeNet Flash » Questions and Discussion » General Support » Is it DEMENTIA instead of LYME

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Author Topic: Is it DEMENTIA instead of LYME
Emtlyme
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I am not going to lie I am not going well.

I am 22 yrs old and don't no what to do.

My lymes tests are positive and even travel 800 miles away to see Lyme doc and have been on treatment for 8 months.

I have all the symptoms of Frontal temporal dementia. I am constantly in a catatonic state

i harldy have any awareness of myself and surroundings. I have this swollen feeling in my frontal lobe area

i am on a cocktail of meds that should be working.

I am always blank minded and can hardly communicate or reads effectively.

I have no family history of dementia or alzheimers. I don't no what do. Is it possible or is this just silliness.

please help

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GretaM
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Dr. Alan MacDonald has autopsied many brains and dementia and alzheimers plus many other neurodegenerative diseases have round body borrelia "pearls and blebs" in the brain tissue.

IMO, dementia AND alzheimers is bacterial based.

Sure genetics, detox pathways and other bacteria play parts too.

Are you treating bartonella currently? Bactrim, azithromycin, rifampin, cipro, levaquin etc?

When do you skype your doc next?

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Keebler
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First, while 8 months is a long time to treat, really - for lyme - it's often still just the beginning. Treatment can take more months - or years.

I know this can be very hard to hear. Others have gone through this and won. Really. Remember that.

You posted this week that you are taking: "cholastyramine biaxin, plaquanil, doxy" (end quote)

The combination of Rx have been helpful for some.


I had terrible trouble with cholestyramine. I could not tolerate it. It could be stripping you of vital vitamins and other nutrients. I will never - ever - touch that again. I cannot describe how awful that made me feel in so many ways. It was hurting me, not helping at all.

Still, others do okay with it. Some really do. But if happen to be who does not, don't push it.

But you should consider that some of what you are experiencing could partially be responsible to inability to manage cholestryramine. I suggest stopping that for a time -- but incorporate OTHER liver supports.

Back to the subject heading, wanting to dispose of the lyme diagnosis or that as a reason for the brain issues:

With lyme in the picture, cognitive symptoms cannot be separated from the cause - although other things may coexist.

Dementia in someone positive for lyme IS most very likely caused by lyme. Dementia is a SYMPTOM (or set of symptoms), not the diagnosis.

And, often it's not really correct to say certain memory issues are dementia even if it looks like that . . . other factors, other causes . . . and there will be other treatments indicated then.

** Do you have excellent LIVER SUPPORT to manage the herxheimer reaction? A herxheimer reaction can intensify any symptoms. Liver support is required. **

Still, even if on a excellent lyme protocol, it can take a long time.

FISH OIL, too. A must for the brain.

B-VITAMINS -- be sure your levels are good and your supplements are good quality.

MAGNESIUM -

Other tick borne infections should be assessed as well. Are you seeing a LLMD, one who is ILADS educated (and beyond)? That matters.

Also assessment of HEAVY METALS is important, as well as inventory of chemical exposures.
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[ 08-16-2014, 08:56 PM: Message edited by: Keebler ]

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Keebler
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Gluten can also cause symptoms of dementia in some people. A gluten free diet is suggested by most LLMDs for those dealing with lyme.

There are many reasons for this. Inflammation is just one. Gluten can cause serious inflammation and when that pushed on brain tissue, it can be profound.

And gluten (like lyme) can cause some changes in the brain that are visible on certain scans. In both cases, some of the changes (white matter, etc.) can be reversed with lyme treatment / gluten free diet and adequate nutritional support.

It has been the case for many. Their MRI clear with treatment.

You may see symptoms improve with a gluten-free diet . . . a bit later you can figure out if you might have genetic celiac. But whether genetic celiac now or not, a gluten free diet is really important, especially considering the brain symptoms.

Gluten can affect much more than just the GI tract. For some, it affects the brain and not even the stomach.
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[ 08-16-2014, 08:50 PM: Message edited by: Keebler ]

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Lymetoo
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Perhaps you need some B12?

https://www.youtube.com/watch?v=BvEizypoyO0

and yes to eliminating gluten in case that is part of it

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Backing up, a light bulb just went off and I wish I had wording my replies a bit differently. My eyes flip words now and then and I thought you had written: "It is dementia . . ." as in a doctor told you this . . . or you assumed.

First of all, dementia is not just the symptoms we associate with memory loss, confusion.

I am confident that dementia in someone at age 22 would be very rare, indeed, and then maybe only if history of multiple head traumas. I doubt you've been a boxer or football player all of your 22 years. Usually, it takes many years for the brain to get to the end stage even with repeated hits, though.

And, even with lyme, these symptoms you experience would not classify as lyme related dementia, really, at this point. Yes, lyme can cause symptoms that some might think are dementia, still . . . that would still be a much more advanced set of circumstances.

So, to help you rest better about this, changing the term to COGNITIVE ISSUES, these are very typical for lyme and they can get better & just leave you. Cognitive symptoms can be profound for someone with lyme, regardless of their age, though.

Again, be sure your LLMD is aware, that this is an excellent LLMD and that all the bases are covered. Patience is hard. Just know that there have been many who have gone through this and come out way ahead, with their cognitive and physical abilities returned.

I'm not there yet, though, so understand that the attempt I've made here is not what I'd call crystal clear. Still, I hope it helps to put it into perspective.
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LisaK
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about 5 years or so ago I told me then GP that I thought I was having AD.

I was doing and saying the strangest things and it was worse when I drank.


emt, I don't recognize you but I have a terrible memory now. so I will give you a little history. I was undiagnosed for at least 17-20 yrs or more just last year. at that time I was catatonic and unable to read, etc.....

I started abx last fall (I think!) . so I am on them around the same time amount as you I think. I have days where I am totally discouraged and days I feel the rays of sunshine hope beaming thru. the painful times still outweigh the better times for me. I have seen a few lyme drs. I find the best results with my current one.

not sure how long you have been diagnosed or undiagnosed before that. I have been told by my dr now that it will take , from their experience, about one month of treatment (or possibly more) for every disease and co-infection treatment, I have.

so , for me the 'proposed" deadline for end of treatment was about 14.6 months which included a little break inbetween each one. I am trying to remain positive until at least that time . after that , then I start to really worry.

I know it is hard.

I just had an MRI the other day. the last itme I went to the neurologist she ordered MRI but for months I have put it off. I just couldn't take it any more now. I feel I am getting older in the brain so fast right now. and headaches, fullness like you. , etc.

I am waiting to see if I could possibly have both lyme and AD?? or God forbid, mad cow.

I must admit though, that I had gluten recently, so as I am constantly reminded here on lymenet to avoid it, I give in and suffer and it may possible be the reason. and I also agree with someone above that said AD and lyme are both bacterial, IMHO.

hang in there!!

[ 08-17-2014, 07:00 PM: Message edited by: LisaK ]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Keebler
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Lisa,

It's not that AD and lyme are separate in someone with lyme. Lyme can cause AD symptoms . . . and when lyme (and what goes along with that) is treated the symptoms that were mistaken for (a misdiagnosis of) AD usually disappear.

While there can be other causes / influences for PD and AD, when lyme is involved (and it should always be assessed - always), it's ALWAYS LYME that is most important to address as the cause, fully, adequately for as long as that takes.

I have no idea who told you it would be 14.6 months' treatment for you. That figure is taken out of thin air. It varies. For many, they find it can take several years of full attention to all details. And many do get better. But it's not a time line you can pinpoint.
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Keebler
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Lisa,

You also say you are concerned that "mad cow disease" might be involved. I know that lyme can be very severe. I know that personally. However, it's very unlikely that sCJD is involved.

Still, it's important that we all learn about it, independently from what we are all going through, just as it's important for everyone to understand how our corporate animal practices & culture can contribute.

It's just one more reason to incorporate more plant based proteins in our diet - and also be very clear where we get our meat . . . from pastured raised, free range, grass fed cattle. Not from animal concentration camps. Here's a great educational organization:


http://www.cjdfoundation.org/

s Creutzfeldt-Jakob Disease Foundation Website


http://www.cjdfoundation.org/webfm_send/76

Excerpt:

". . . sCJD usually occurs later in life and typically leads to death within a few weeks or months to one year following onset of symptoms. . . ."

CJD Fact Sheet
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LisaK
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yes, I know all about the human form of spongiform encephalopathy.

and to your info about lyme and AD- is the AD caused by tick disease the same as non tick disease induced AD? I mean, so they look the same on MRIs? do Drs dx it the same?

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LisaK
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Keebler, that time line of treatment is what my personal LD dr told me from the results of HIS treatments over the years of many lyme patients.

I think I can assume he isn't lying about that, since I actually have spoken to some of his past , HEALED patients.

He also touts a 99% success rate. While I have trouble trusting any dr, as you know, I must hold on to the hope that this way will get me to the best possible place I can be. Positive thinking helps in every case of illness, I believe, and also, if this treatment doesn't work for me there is pretty much nothing left for me to try, so I sure hope it is the case for me to be fixed as much as possible.

it has already shown great results for me and I am hopeful.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Keebler
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For more detail about AD / lyme, you might want to see Alan MacDonald's videos on that. But as long as you are with an excellent LLMD and addressing all matters, your bases should be well covered.

The "non-LD" causes of AD, I'm not sure what those would be but I can assume they'd be the same sort of influences that also relate to those with spirochetal caused AD -- heavy metals, chemical exposures, etc. that may not be a direct cause but certainly add to the symptoms. And, for anyone with lyme, most LLMD also address all that, too.

The trust is in the process, not the timeline of 14.6 months. That may be an average and you may well have a good chance of that. With the right, aggressive treatment and proper supports, that is possible.

I know that TF spent quite some time with inferior treatments and when she got with a LLMD who was more aggressive and experienced was able to reach remission in about a year.

It's just that the timeline is not set in stone. There are so many variables. I'm glad you are seeing an experienced LLMD and they have helped others reach remission in a reasonable time frame.

And glad that all things seem to be considered and that is a hopeful timeline for your case.

You say "if this treatment doesn't work for me there is pretty much nothing left for me to try" (end quote).

There are many other options. Never give up. Positive thinking is important yet positive thinking always requires flexibility to hold us all steady. If things change, there is always another way. Always. Whether in core plan or the support methods.

If you ever played tennis, or if you know someone who does, ask them. The foot stance. Being on the balls of your feet, ready to go in any direction.

The balls of the feet, that kind of balance -- figuratively -- works very well with positive thinking. It's so much about balance and being able to adjust here, or there or -- oops, it's over there, now!

If we can keep our core balanced, the rest of our body & mind can feel more gathered, so to speak. We're on course & centered, even as that course shifts and we have to move a bit.
-

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LisaK
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thanks Keebler, I will keep my feet on the ball, so to speak

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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"The idea that Alzheimer's is entirely genetic and unpreventable is perhaps the greatest misconception about the disease," says Gary Small, M.D., director of the UCLA Center on Aging.

Researchers now know that Alzheimer’s like heart disease and cancer, develops over decades and can be influenced by lifestyle factors including cholesterol, blood pressure, obesity, depression, education, nutrition, sleep and mental, physical and social activity.

The big news:
Mountains of research reveals that simple things you do every day might cut your odds of losing your mind to Alzheimer's.

In search of scientific ways to delay and outlive Alzheimer's and other dementias, I tracked down thousands of studies and interviewed dozens of experts. The results in a new book: 100 Simple Things You Can Do to Prevent Alzheimer's and Age-Related Memory Loss (Little, Brown; $19.99).

Here are 10 strategies I found most surprising.

1. Have coffee.
In an amazing flip-flop, coffee is the new brain tonic. A large European study showed that drinking three to five cups of coffee a day in midlife cut Alzheimer's risk 65% in late life. University of South Florida researcher Gary Arendash credits caffeine: He says it reduces dementia-causing amyloid in animal brains. Others credit coffee's antioxidants. So drink up, Arendash advises, unless your doctor says you shouldn't.

2. Floss.
Oddly, the health of your teeth and gums can help predict dementia. University of Southern California research found that having periodontal disease before age 35 quadrupled the odds of dementia years later. Older people with tooth and gum disease score lower on memory and cognition tests, other studies show. Experts speculate that inflammation in diseased mouths migrates to the brain.

3. Be a “Googler”.
Doing an online search can stimulate your aging brain even more than reading a book, says UCLA's Gary Small, who used brain MRIs to prove it. The biggest surprise: Novice Internet surfers, ages 55 to 78, activated key memory and learning centers in the brain after only a week of Web surfing for an hour a day.

4. Grow new brain cells.
Impossible, scientists used to say. Now it's believed that thousands of brain cells are born daily. The trick is to keep the newborns alive. What works: aerobic exercise (such as a brisk 30-minute walk every day), strenuous mental activity, eating salmon and other fatty fish, and avoiding obesity, chronic stress, sleep deprivation, heavy drinking and vitamin B deficiency.

5. Drink apple juice.
Apple juice can push production of the "memory chemical" acetylcholine; that's the way the popular Alzheimer's drug Aricept works, says Thomas Shea, Ph.D., of the University of Massachusetts . He was surprised that old mice given apple juice did better on learning and memory tests than mice that received water. A dose for humans: 16 ounces, or two to three apples a day.

6. Protect your head.
Blows to the head, even mild ones early in life, increase odds of dementia years later. Pro football players have 19 times the typical rate of memory-related diseases. Alzheimer's is four times more common in elderly who suffer a head injury, Columbia University finds. Accidental falls doubled an older person's odds of dementia five years later in another study. Wear seat belts and helmets, fall-proof your house, and don't take risks.

7. Meditate.
Brain scans show that people who meditate regularly have less cognitive decline and brain shrinkage - a classic sign of Alzheimer's - as they age. Andrew Newberg of the University of Pennsylvania School of Medicine says yoga meditation of 12 minutes a day for two months improved blood flow and cognitive functioning in seniors with memory problems.

8. Take D.
A "severe deficiency" of vitamin D boosts older Americans' risk of cognitive impairment 394%, an alarming study by England 's University of Exeter finds. And most Americans lack vitamin D. Experts recommend a daily dose of 800 IU to 2,000 IU of vitamin D3.

9. Fill your brain.
It 's called "cognitive reserve." A rich accumulation of life experiences - education, marriage, socializing, a stimulating job, language skills, having a purpose in life, physical activity and mentally demanding leisure activities - makes your brain better able to tolerate plaques and tangles. You can even have significant Alzheimer's pathology and no symptoms of dementia if you have high cognitive reserve, says David Bennett, M.D., of Chicago 's Rush University Medical Center .

10. Avoid infection.
Astonishing new evidence ties Alzheimer's to cold sores, gastric ulcers, Lyme disease, pneumonia and the flu. Ruth Itzhaki, Ph.D., of the University of Manchester in England estimates the cold-sore herpes simplex virus is incriminated in 60% of Alzheimer's cases. The theory: Infections trigger excessive beta amyloid "gunk" that kills brain cells. Proof is still lacking, but why not avoid common infections and take appropriate vaccines, antibiotics and antiviral agents?

*What to Drink for Good Memory*

A great way to keep your aging memory sharp and avoid Alzheimer's is to drink the right stuff.

a. Tops: Juice.
A glass of any fruit or vegetable juice three times a week slashed Alzheimer's odds 76% in Vanderbilt University research. Especially protective:blueberry, grape and apple juice, say other studies.

b. Tea:
Only a cup of black or green tea a week cut rates of cognitive decline in older people by 37%, reports the Alzheimer's Association. Only brewed tea works. Skip bottled tea, which is devoid of antioxidants.

c. Caffeine beverages.
Surprisingly, caffeine fights memory loss and Alzheimer's, suggest dozens of studies. Best sources: coffee (one Alzheimer's researcher drinks five cups a day), tea and chocolate. Beware caffeine if you are pregnant, have high blood pressure, insomnia or anxiety.

d. Red wine:
If you drink alcohol, a little red wine is most apt to benefit your aging brain. It's high in antioxidants. Limit it to one daily glass for women, two for men. Excessive alcohol, notably binge drinking, brings on Alzheimer's.

e. Try to avoid: Sugary soft drinks,
Especially those sweetened with high fructose corn syrup. They make lab animals dumb. Water with high copper content also can up your odds of Alzheimer's. Use a water filter that removes excess minerals.

*5 Ways to Save Your Kids from Alzheimer's Now*

Alzheimer's isn't just a disease that starts in old age. What happens to your child's brain seems to have a dramatic impact on his or her likelihood of Alzheimer's many decades later.

Here are five things you can do now to help save your child from Alzheimer's and memory loss later in life, according to the latest research.

1. Prevent head blows:
Insist your child wear a helmet during biking, skating, skiing, baseball, football, hockey, and all contact sports. A major blow as well as tiny repetitive unnoticed concussions can cause damage, leading to memory loss and Alzheimer's years later.

2 Encourage language skills:
A teenage girl who is a superior writer is eight times more likely to escape Alzheimer's in late life than a teen with poor linguistic skills. Teaching young children to be fluent in two or more languages makes them less vulnerable to Alzheimer's.

3. Insist your child go to college: Education is a powerful Alzheimer's deterrent.
The more years of formal schooling, the lower the odds. Most Alzheimer's prone: teenage drop outs. For each year of education, your risk of dementia drops 11%, says a recent University of Cambridge study.

4. Provide stimulation:
Keep your child's brain busy with physical, mental and social activities and novel experiences. All these contribute to a bigger, better functioning brain with more so-called 'cognitive reserve.' High cognitive reserve protects against memory decline and Alzheimer's.

5. Spare the junk food: Lab animals raised on berries, spinach and high omega-3 fish have great memories in old age.
Those overfed sugar, especially high fructose in soft drinks, saturated fat and trans fats become overweight and diabetic, with smaller brains and impaired memories as they age, a prelude to Alzheimer's.

*Excerpted from Jean Carper's newest book:
"100 Simple Things You Can Do to Prevent Alzheimer's"

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Thanks for sharing that excellent article. There is so much we can do for ourselves.

I love the author's photo on her website (with more detail about her research for her book, and a look at the book):

http://jeancarper.com/
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LisaK
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great lymetoo!! loved that info! I am passing it on to my parents

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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One thing I would disagree with is the consumption of apple juice (and other juices.) Most of it is laced with pesticides and full of sugar.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Agreed on that point. Most of us would steer toward better choices on that. Mangosteen, for instance. And so many other options.
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surprise
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I have a sworn pact with my husband that if down the road either one of us gets diagnosed with dementia or Alzheimer's,

the other one will move heaven and high water to get IV antibiotics administered.
Hope he remembers ;-)

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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LisaK
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what about organic apple juice ?

http://www.rwknudsenfamily.com/

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Keebler
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Good question but still, sadly, not good at all. Better: eat the real apple, just as it presents itself to us, whole.

I've never felt so ill as I have at times I've had apple juice (even if organic). A short time later and, several times, I thought I would die.

It took me a while to realize apple juice, really any fruit juice did this. It took me a long to time to connect the dots as I had never really considered that it's nearly straight sugar.

Any sweet fruit, squeezed or mashed into juice is then so close to straight simple sugar the instant it hits the mouth. So, if one must, just a little, in the middle of a full meal of whole foods. Never alone.

Still, it's not quite (but close) like adding powdered sugar to your meal. Not good for those with lyme who already have issues with blood glucose stability.

Other than say, something like mangosteen juice, more of a medicinal liquid to be taken in smaller doses than a beverage.

Any fruit we get should be whole.

Whole dark berries that are lower on the glycemic index. The whole state will allow our body TIME to metabolize so that our blood sugar doesn't zoom us to the moon and then drop us like a ton of bricks. And those ups and downs can do lots of other damage.

As for smoothies, so popular, it's best to not puree any fruit or veggie too much, add back in some of the pulp and be sure to have protein and fat with any smoothie for glucose balance.
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Lymetoo
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LOVE my mangosteen juice!

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--Lymetutu--
Opinions, not medical advice!

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Keebler
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Pomegranate juice would be okay, too. Not very sweet at all and so full of wonderful color and antioxidants.

Just be sure it does not have added sugar or artificial sweeteners of any kind. It will be tart and it is possible to work up to enjoying that level of tartness -- or dilute with some water. A touch of stevia can also work with that.

There are likely some others that are in this same category (I just can't think of them now). But most of the juices on the supermarket shelves (even if organic and even if no added sugar) are still just too much simple sugar.

Elderberry now comes to mind. The berries MUST be cooked first and the seeds strained out. Elderberry is not a sweet berry - very tart - and, again, more of a medicinal liquid but it can be a wonderful, juice, too, for someone like me who is just delighted to have the somewhat gamey richness of it for what it might do for me.

I just made some this past weekend from berries a friend brought from her garden. It was somewhat diluted in the cooking process. I drank about 3 ounces morning and night for several days and a sinus problem got much better.

Elderberry is most common in a glycerine tincture form or a syrup. Many are sweetened with honey.

For those dealing with candida, I don't know about tart cherries for them. Tart cherries - must be labeled that to differentiate them from the sweet ones (just be sure). Still . . . if candida, be cautious.

Hibiscus (plant source, a flower really, not a fruit) might be a much better choice. I was just trying to think of the dark low sugar fruits with health benefits in general.

TART CHERRIES can make a nice juice but, again, it's not sweet as though things go, cherries are actually rather low on the glycemic scale and offer excellent antioxidants that can help balance glucose.

And, you'd likely not drink this like tea all day long but as a medicinal support that does just happen to taste nice, too.

Try to avoid plastic bottles. Go for organic or similar. Not the best article but a start if you want to learn more.

http://www.livestrong.com/article/24160-health-benefits-tart-cherry-juice/

Benefits of Tart Cherry Juice
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[ 08-19-2014, 03:02 PM: Message edited by: Keebler ]

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Keebler
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Oh, and cranberries. Because they are tart, cranberry juice would be okay. Just be sure there is no added sugar or artificial sweetener. Cranberries have some very good benefits.

Organic lemons or limes (roughly mashed so you get some pulp for fun), with stevia, and sprig of fresh mint make a wonder iced beverage.

Green Tea, Lemon Myrtle Tea, Hibiscus Tea, too. Hibiscus is fabulous, actually, hot or cold. Such rich color, antioxidants and flavor out of this world.


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Topic: HIBISCUS s., Roselle – links

[ 08-19-2014, 03:03 PM: Message edited by: Keebler ]

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