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CLL Support Association
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How I Deal With Fatigue

Short story:

Baking soda works for me.

Back story:

I was diagnosed with CLL in 2006. A few years later the fatigue, which for me included mental fog, kicked in. It was at its worst during my months in treatment. Even in remission I would fold at about 4:00 in the afternoon, after which I was down for the count, making exceptions only for early dinners out. Fatigue seemed to be what was normal for me. I lived that way for a full year after treatment.

Last summer I saw a study from the University of Georgia demonstrating that baking soda taken daily can prevent the spleen from harboring inflammatories. I have osteo arthritis, so I began taking a teaspoon of baking soda each day, mixed in water with a bit of sweetener.

I didn’t notice an effect on my arthritis pain. Rats. But what I did start to notice was greater energy. The worst of the fatigue left me within the first two weeks of use. I no longer had to have a full day of stretch-on-the-couch relaxation each weekend to allow me to work for a living during the week. And my workdays were longer.

After only a few weeks I was feeling pretty much like a normal person.

Then I started to notice my baking soda lapses. I would forget to take it for a couple of days, and back would come that urge to fling myself on my couch mid-afternoon and stay there until bedtime. And I would feel the old brain fog return.

Why is this happening? It could be many things. Let’s not rule out coincidence/placebo. Maybe it was simply time I got better after all. And perhaps the fatigue I was experiencing was directly related to the inflammation that my spleen had been harboring.

But CLL is a splenetic disease. If the spleen responds to baking soda in one of its functions, perhaps the soda is more broadly effective on the various functions of the organ that affect the disease we share. Who knows?

Even a mind daily does of baking soda should not be used by people with high blood pressure without a doctor’s consent. But here’s the deal. In the States, a box sells for about a buck. And it seems to me one dollar would be worth a try.

I would love to have others here give this a test and let me know—let all of us know—whether what is working for me works for you. And if anyone has posted about this before.

Ducksoup

32 Replies
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Hi Ducksoup,

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I agree with your comment "Let’s not rule out coincidence/placebo. Maybe it was simply time I got better after all".

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These reliable websites explain that by consuming acid or alkaline substances like baking soda, you will only affect your urine (kidneys and bladder) and never your blood pH or your spleen.

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mdanderson.org/publications...

"The alkaline diet is based on the theory that eating certain foods can change the body’s acid levels, also called the pH levels. Some believe that changing the body’s pH levels can improve your health and help you lose weight or even prevent cancer.

But there’s no way the foods you eat can alter the pH level of your blood. The body’s pH is a very tightly regulated system. If you change your diet, you may see changes in the pH of your saliva or urine because these are waste products, but there’s no way you could ever eat enough that it really impacts your blood."

healthline.com/nutrition/th...

aicr.org/patients-survivors...

scienceblog.cancerresearchu... See Myths #3 and #5

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But placebo effect can be powerful, so eat a healthy balanced diet, get regular exercise and use the baking soda for baking or for gently cleaning your dishes ( it's the mild abrasive in Soft Scrub).

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Len

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Sorry, langsterguy. Here's the study that contradicts your (rather dismissive/patronizing, I thought) response to my posting.

jagwire.augusta.edu/archive...

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They have shown that when rats or healthy people drink a solution of baking soda, or sodium bicarbonate, it becomes a trigger for the stomach to make more acid to digest the next meal and for little-studied mesothelial cells sitting on the spleen to tell the fist-sized organ that there’s no need to mount a protective immune response.

“It’s most likely a hamburger not a bacterial infection,” is basically the message, says Dr. Paul O’Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study’s corresponding author.

Mesothelial cells line body cavities, like the one that contains our digestive tract, and they also cover the exterior of our organs to quite literally keep them from rubbing together. About a decade ago, it was found that these cells also provide another level of protection. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.

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Your statements above remind me of those of an MD friend who makes his friends chuckle because he won't believe that anything not actually proven can possibly be true. Would you have denied the possibility that the polio vaccine worked before it was proven to stem the spread of the disease? Remember: a) just because it has not yet been proven, or b) just because you have not yet read that it has been proven, as in this case, does not mean it doesn't work.

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This is an interesting article. I would like to read a peer reviewed published version of this. It’s Always important to see how accepted science is by others. Do you have a link to This In a publisher paper?

One note of caution for many of us tho was the statement that this intervention caused the spleen to grow which may be the last thing some of us need if this all pans out to be true as the article suggests.

Sadly alternative ideas like this rarely get the backing they need to do proper studies to see if it really works.

These days I’ve been thinking I’d do anything to get some energy back. I fear that sometimes people play on that desperation some of us feel as if can make us vulnerable and gullible.

We should try and get to the bottom of some of these ideas and get a good handle on the state of knowledge. But like the idea that cutting out sugar can help our cancer which can get very controversial and heated very quickly I wish we could shine some good quality light. And heck maybe even get some of the charities to fund proper studies of interventions that look promising.

Let’s be honest fatigue is One if THE biggest issues that make many of our lives suck. We need to be better served with information about approaches that may help.

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I believe I saw this article first on a site called University Health News. Here's something from Science Daily. Googling 'baking soda' and 'inflammation' will return millions of results. But whether or not the Univeristy of Georgia-Athens findings (concerning rheumatoid arthritis, for example) have been peer reviewed really has nothing to do with the effect it seems to have on my fatigue. Please know that I do not claim this treatment will work for others. I only know it has affected me. I don't believe my response could be classified as 'placebo effect' in the widely accepted sense of that term. In other words, I had no reason to believe the daily dose would improve my energy. I only hoped for improvement in my inflammation. However, the term 'placebo effect' is also used among scientists as a way of stating 'return to the norm'. In other words, I was going to get better anyway. And it could be that. (Though my experience with fatigue when I forget to take it would be a counter argument.) In any case, I'd just recommend that those who do not have high blood pressure give it a try. If it doesn't work, you've lost the price of the baking soda used during the test. Let's say 50 cents.

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Aack! I forgot the Science Daily link!

sciencedaily.com/releases/2...

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Adrian, if you message me with your email address I'll send a pdf version of O'Connor's Journal of Immunology paper. "Oral NaHCO3 Activates a Splenic Anti-Inflammatory Pathway: Evidence That Cholinergic Signals Are Transmitted via Mesothelial Cells"

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I stand corrected, and apologize if you found my tone dismissive / patronizing.

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It would be helpful if you would post a link to any studies mentioned, so we can all learn from it, (as you provided in your reply)- that is very interesting.

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There are many claims and vague studies from doctors like Mercola that repeat the acid blood theory. That's why it lands in the 10 most common myths about Cancer.

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I did not interpret "prevent the spleen from harboring inflammatories" as having the same meaning as "may help reduce the destructive inflammation of autoimmune diseases like rheumatoid arthritis"

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I have an autoimmune skin problem since 2006, so I am interested in any new scientific studies that advance the understanding.

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Again, I apologize for misreading your posting.

Len

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Thanks, lanksterguy. You're forgiven. (Would it be rubbing salt in the wound to say that we women are used to it, if I included a smiley face emoji?)

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I had no idea of your gender - I didn't look at your profile, and my wife would kill me if she suspected misogyny. But I will take the smiley face anyway.

Len

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Ducksoup is right, your comments are rather dismissive, and your attempt to "mansplain" to the original writer is patronizing.

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Thanks for the post, ducksoup, and for your follow-up comment with the link about how baking soda and spleen response are related. Very interesting read.

kim

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So, if drinking baking soda makes the spleen larger, (see the last paragraph or so of that sciencedaily article), I would expect that might be looked at as a need to treat CLL?

Just saying---there is that possibility, esp. in those of us who already have enlarged spleens and having some discomfort from that.

And the blood pressure problem needs to be highlighted for all.

So, while I was tempted at points in reading the article, the cautions within the article it that apply to me will not allow me to experiment.

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Blood pressure caution for sure. Since my CLL is in remission I'm a little less concerned about spleen size. Perhaps I shouldn't be. But fatigue has had such a terrible impact on my quality of life that I'll take a risk on that. I feel good. Hallelujah!

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If the article mentioned fatigue, i missed that. It appears inflammation is a target. I don't doubt your experience, just hope that if it is inflammation that is causing CLL fatigue, there will be something to address the inflammation.

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If you will read my original post carefully you will discover that I did not claim that any article I had seen made a link between baking soda and fatigue. Please. Everyone. Read my posting. The scientific articles may be interesting, but the only part they played in this story was getting me to take a daily dose of baking soda. I do not have rheumatoid arthritis or any other complaint that might be addressed directly in the scientific article. Please. Read my original post.

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Hi Ducksoup. I have found many benefits of taking backing soda but only did it when my digestive system was irritaded by poor food consumption. I will start your regime and keep you informed of progress with fatigue. Thank you for your thoughts on the matter. I am amazed that none of the specialists i have seen were unable to provide any answers but not surprised. Yet they all accept that it is a side effect of our condition. Fatigue does not kill so not high on their agenda yet extremelly disruptive to a normal routine.

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It is so nice to hear from someone who understands what I am saying, and who may benefit as I did. Please keep me informed. I hope what happened to me was not a fluke and that others will find relief from their fatigue in that cheap little box of baking soda!

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I'm going to try the baking soda too. Many times chronic inflammation can cause enough of a pattern change that cancer can occur. Along with SLL I have several auto-immune diseases, three of which have occurred, lymphocytic in nature, in other organs while treating the original disease.

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All the best! Let me know how it goes for you.

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Cll for 5 years. Fatigue a huge problem. Oncologist last week had me start taking American ginseng. So far I noticed no difference but I'll keep taking it and use it up which I have a 90 day supply. I see a lot of people talk about fatigue. And so far I'm still on wait and see with my white count at 82. It was 104 and then somehow went down to 82 with no treatment. Anyone else have any comments about that white count going up and down?

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Korean Ginseng is more suited for energy levels. American Ginseng is considered more of an adaptogen, which is supportive to our body systems, but less effective at increasing energy to a noticeable degree. Korean Ginseng should not be taken by someone who has high blood pressure.

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oldguy68, I'm an old guy at 79. I had 6 treatments of B/R earlier this year at Emory Winship, after presenting without visible symptoms, but whites were slightly high, platelets low (83), and one abdominal node was 7.3 cm. Had no side effects, other than intermittent fatigue, solved daily with a 1 hr nap. All internal nodes shrunk, and bloods returned to normal. I'm 13q unmutated. I Just had 3 mo. CT Scan, and nodes growing again. Dr. Tadepalli, formerly MD Anderson in Huntsville, ordered Pet Scan next week.

He also recommended Curcumin with black pepper supplement daily. I have CLL/SLL. His head RN and I also discuss Keto Diet, as she does it (not to lose weight) and knows I did it last year and lost 35 lbs. in 5 months, while sedentary, and since have maintained 26 BMI, and lowered blood pressure from 139/90 to 110/76. The Winship nutritionist also approved my keto last year, as I was supplementing properly with magnesium, vitamin D3, and B complex. I sleep better, have no brain fog, and remain independent.

Maybe it's my age, and they figure I have nothing to lose, or maybe they believe that certain supplements can help, or don't hinder. However, with their superior knowledge/experience, the fact that they recommend them says something. I trust them over the negativity on the internet.

Best to all here. I read every day.

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so ,how much baking soda can you be specific.....

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Ducksoup:

"I have osteo arthritis, so I began taking a teaspoon of baking soda each day, mixed in water with a bit of sweetener."

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It looks to me like you have covered all the angles, worth a try. I will stick with walking because I notice increase in energy. My theory is that exercise makes my body call for more red blood cells to carry oxygen to my body. I am now in treatment and walk daily.

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Hi I will be 76 in Dec, and I use Baking Soda for an issue I have occasionally with my teeth. I use it as a mouth wash, and it is wonderful - no more bleeding and mouth sores (and whiter teeth). Never thought about drinking small amounts daily. Will ask my "Experts" for their thoughts, but I don't mind small experiments under my control. High blood pressure is not a normal occurance, but has occurred very sporadically. Spleen not badly enlarged. Gives me hope that I can improve the "fatigue" factor. Thanks so much. Any ideas are always welcome.

Jay

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I have been supplementing with baking soda for years. I use it in tea, coffee, and water. And I do so, without reference to scientific studies, for the reason that most of the foods we consume are low pH, e.g., meat, coffee, sugar, soda, dairy, etc., and since the blood is a pH of 7.35, I try to imagine how the body raises the pH to that level and assume it does so by leeching minerals from the bones. And I imagine that I can slow that process and protect my bones.

Dennis, 71, Ibrutinib

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Our body pH is regulated by lungs (by controlling carbon dioxide release) and our kidney function:

en.m.wikipedia.org/wiki/Acid–base_homeostasis

No need to supplement with baking soda.

Neil

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Hi Ducksoup, it's been over 2 weeks me taking bicarb every morning and it does make a difference. My joint pains are dissipating fast and my energy is coming back. The way I understand this is that Imbrutinib is a catalyst for inflammation at least in the first year of treatment (this is how long I have been on it). This inflation is conducive to poor sleep and drains valuable resources needed to maintain performance. I have used with it a daily tablet of Zinc, biotin and a few drops of cannabis oil before going to bed. Prior to this intake of bicarb the effects of cannabis oil was diminishing but now it is back in full strength and I get a great night sleep again.

So thank you.

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Yayy! I'm so glad at least one person has been able to benefit from this. Good luck to you. Keep me posted.

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The original post and related feedback is interesting... but please, I don’t think anyone means to be disrespectful to another. Let’s not be over sensitive and try to remember that everyone is looking for answers and sharing what limited info and experiences we have...

Thanks for sharing and wonderful to see the kind feedback that some shared.

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Hmmm I would try it but can’t handle the salt taste.

I put very little salt in my food.

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