Log in
CLL Support Association
12,125 members18,456 posts

Cll and being breathless.

About 4 years ago I was diagnosed with cll.

I've noticed over a few years I'm getting breathless more often and it's lead to panic attacks. A doctor Darren Schmidt on YouTube said the condition could be due to a lack of vitamin B . I've just started taking vitamin B and the difference is incredible.

I really think patients with cll should be checked automatically for vitamin deficiency .

8 Replies
oldestnewest

Always worth a word with your doctor. My breathlessness was caused by falling HB as the red cells were being crowded out by the cancer cells.

1 like
Reply

I agree... I'm Vit B 12 deficient and require monthly injections... pernicious anemia and no IF, intrinsic factor...

Taking supplements and sublinguals may be OK for some, but tests should be run for B12, folate and VITD at the bear minimum...

Don't assume oral supplements are doing much/anything... there may be no B12 uptake.

B12 effects red blood cells and is a component in depression... ask your GP to test you...

~chris

4 likes
Reply

The advice to monitor and perhaps supplement B-vitamin deficiency is worthwhile and broadly supported. However, it's always a good idea to check the credentials of any 'medical advisor.'

For example, the advisor you cite, Dr. Darren Schmidt of Ann Arbor MI, USA, is a chiropractor who states in an online testimonial that his 'business practices and therapies' are guided by the founder of Scientology (https://www.scientologynews.org/press-releases/meet-a-scientologist-darren-schmidt.html).

Dr. Schmidt is primarily in the sales-business. His products are a personally-derived keto-diet for "healing the brain", "designing individualized nutrition program for clients", diagnosing black-mold, selling packaged nutritional dietetic supplements, and counseling about lactic acidosis ~ which he describes as the "most common mechanism of chronic disease" (http://learntruehealth.com/lactic-acidosis). Dr. Schmidt advises that “Dr. Otto Warburg, the Father of Physiology, figured out how cells turn into cancer. It’s lactic acid fermentation ... an old physiological process that our cells used to do two billion years ago on the planet when there was no oxygen in the atmosphere."

His other gurus, in addition to Otto Warburg and the science-fiction author and founder of Scientology, L. Ron Hubbard, include the "Father of Holistic Psychiatry, Dr. Abram Hoffer" (ibid.).

Dr. Darren Schmidt says the leading causes of chronic disease, in addition to nutrient deficiency, are excess sugar metabolism, toxins such as heavy metals & chemicals, and the 'hidden infections' of fungus, parasites, and a virus in the lungs that causes asthma (ibid.). His research is based, he says, on having treated seven patients with cancer whose disease went into remission while on his dietary supplements (no citation provided). He does, however, provide dozens of exclusively supportive anecdotes and testimonials.

Like most holistic therapists, whether chiropractors, naturopathic physicians, shamans, diet-counselors or whatever, he is not board certified as a hematologist or oncologist, nor is he an MD/DO. After some thought, I've decided that I won't be seeking Dr. Schmidt's counsel on ground-breaking advances in CLL.

Caven

9 likes
Reply

Have you had labs recently? As my marrow filled with CLL cells, leaving little room for red blood cells to grow, I was getting anemic. If there are too few red cells to distribute oxygen, it can cause one to feel breathless. While it might be something else, you might have your doctors check this out. Once I started treatment, and red blood cells could grow, my energy and color returned. Good luck!

4 likes
Reply

so that's what it is! I used to sing a lot, I am also still teaching, but can't keep talking for more than a few seconds without losing my breath. Will follow it up. Thank you Marktruckingkelly and have a good day

Reply

Exactly the same thing is happening to me . I couldn't talk without losing my breath , it's eased a lot since talking vitamin B. Seeing the doctor tomorrow to sort it out.

1 like
Reply

Yes, I also couldn't hold a note as long when singing. Breathless! I'm guessing it was part lack of oxygen, and part pressure from the myriad swollen nodes in my neck that looked like bubbles, all close together, like when you blow through a straw into milk. After 2.5 years on Imbruvica, happy to say I have energy and breath. So grateful for this miracle treatment.

Reply

Before I started treatment I had to shorten my walks and time on a treadmill due to shortness of breath. After I started treatment (acalabrutinib) my HB is back in the normal range and my breathlessness has disappeared.

Reply

You may also like...