CLL Alternatives

Contact

Contact me via the comment sections of this site, or directly at cllalteranatives @ gmail.com.  If you would like to talk, email your phone number to me.  (It’s easier to organize an email than a phone call.)

50 Responses to "Contact"

Great site-it really helps to see your story of success and good health. I was just diagnosed in October and am in watch and wait. Do you mind sharing your prognostic markers if you know them? I am still unaware of mine, but have read that mutational status is a key predictor of disease progression. Do you know if you are mutated or unmated? Also, what is your zap 70 and cd 38 status? Aldo, do you take any other supplements besides d3? Thanks so much for your input. Brenda

Hi Brenda,
October? You are brand new to this! I don’t know my prognostic markers. In 2001, when I first was diagnosed, they weren’t so big into that. And now that I’ve been w&w (watch and wait) for 9.5 years, I guess they think those markers must be okay. Or if they DID take them, no one told me about it. But whatever your markers are, you can take action nonetheless. I probably take about 70 pills a day AND I have a special diet AND I’m doing wheat grass juicing, green juicing AND taking laetrile and low-dose naltrexone. This is a very good question (and this is still a very new site) so I will make a page of all the things I’m doing.

That said, (and this is not meant to discourage you) what works for me might not be what works for you. Keep in mind that even conventional doctors don’t treat everyone with CLL the same (because we’re not all the same!) But still, many things I take and that I do, can and will be helpful to anyone with this diagnosis. It will be your job to try them, the easiest first, and keep “watching” (getting blood tests). If you’re stage zero (are you stage zero?) , hurray, you have time to try many, many things.

Please feel free to email me directly at info(at)CLLAlternatives.com. I’d love to hear from you! – Denise

HI Denise
thanks for taking the time to help others with your Webb site thats very kind of you and iam happy to see that your on top of this dreadful disease (maybe there is hope for us).
I was wondering if you could give me some advice? Denise my name is Ron Iam a 63 year old Australian, I was diagnosed with cll three years ago, Iam at stage one still, my white blood cells have doubled in the last 12 mths from 11.4 to 21.1 the plaelets have gone from 215 to 170 over the same period of time. the Red cell chemistry is still in check but I think its time to to take charge after reading your story Denise its given me some hope of enjoying a few more years with my wife and family.
we have both just retired from work and just entering what we hope will be the good part( God willing).
with all those supplements your taking Denise I would not know where to purchase them or would they help my particular case ?would just some of them help?Iam willing to listen theres something about you and your site thats seems so genuine its given me faith…
Kind regards Ron..

Hi Ron,
You emailed this message as well as writing it here on my blog. When I responded, I told you that your numbers are not that bad, and that you still have plenty of time to start on more alternatives. You also motivated me to start working on this blog again. There are many, many non-conventional options for those with CLL. There is TBL-12 http://www.unicorn-pacific.com, polymva http://www.polymva.com and TCM traditional Chinese herbs, for which you must seek out a practitioner. But there are tales of success with this on the web as well. Thanks for writing, and I will get back to work on this site again! Please keep in touch and be well!- Denise

EMF. Your story sounds like the woman on emfdamage.com, who thinks EMF was the cause of her CLL.

But I can’t find any discussion on EMF on this site. Do you have an opinion on EMF?

Yes, my other site is emfdamage.com. You are very astute. This is a young site yet, and I will soon have links to my other site, and to many other important and relavant sites for those with CLL. -Denise

You are taking LDN. My boyfriend started taking it for CLL five months ago. Have you had any results from it? You say you have been taking it since 2008.

I can’t say that it’s affected a cure, but I’ve been at this for nearly ten years now, and I don’t stop taking things that i believe help. I consider it to be part of a a plan — not the magic bullet. If you’d like to email me directly, please write to info(at)cllalternatives.com

Could you provide more info on colostrum? I have read both good and bad about it. One site actually cautioned not to use if pregnant or have leukemia. Another site said it will increase your WBC.

Thanks

Steve

Hi Steve,
I’ve been taking colostrum for nearly two years now, and my wbc (white blood count) has gone up and down. What matters is what makes up the wbc. If it’s mostly lymphocytes and the leukemic lymphocytes are crowding out the good killer cells, such as your neutrophils, that is a bad thing. If your wbc goes up, and the “good” cell count goes up as well (you can see this by the lymphocyte percentage), it is overall a good thing. That is all the information I personally have at this time. But I may do more research on it in the future. Thanks for writing.

I wanted to thank-you for giving me some hope. I am a 45 year old man living in Canada. I was diaganosised last week and to be honest I`m still in shock. I have a young child so I worry about the future. The doctor stated that I was at stage 0 and he gave me 10 years to live. But what he didn`t give me was any support for the emotionally shock nor any advice like your site for nutrition and alternative approaches. It`s now been a week (well 2 months since my family doctor refered me on to a specialist).
I have a question about some of my symptoms. I`m not sure if this is stress related or not. I sometimes for hours feel dizzy and need to sit down. I also feel sick to my stomach. Are thses CLL related or more stress related and what are some strategies for this problem?

HI Michael,
By now, we’ve already had many private emails, and I’m glad that you finally got ahold of me by emailing me directly at info(at)cllalternatives.com. Unfortunately, I get so much spam that I miss true messages. I wonder if the symptoms you’re feeling were there before your doctor visit, or if they cropped up after you found out you had CLL? If they came up afterwards, it is the result of the shock and trauma you’re dealing with from the diagnosis. If it was there before, it’s still iffy that it’s the CLL, if you are at stage zero. As we’ve already “discussed” via emails, there are a lot of great options out there. One i’ve already told you about, but I’m repeating for the readers of the blog, is http://www.polymva.com and the same product, but a CLL testimonial, http://www.polymvasurvivors.com/testimonial_leukemia_cll_perlmutter.html.

Glad you wrote, Michael, and please, anyone else who cares to contact me, either leave a post, which I will get to (after I wade through the spam), or contact me directly at cll alternatives @ gmail.com.
All the best, Denise

I have had CLL for 5 years. How about the use of DMSO?
I have just started using low-dose Naltrexone with massive infusions once a week. Naltrexone seems to affect dreaming. One woman I respect takes a tablespoon of DMSO daily. I am scheduled to begin chemotherapy in December because the white count is critically high and plasma is critically low.

Hi Johnptodd,
I would give the Naltrexone a little time before you jump into chemo. I have not researched DMSO. When you choose to do alternatives, you have to be willing to look things up on the Internet and contact people (like you just contacted me.) It’s amazing what specific searches can turn up! Personally, I would avoid chemo for as long as possible, as it takes a toll on your body. If you DO find that it works, please write again so that I can share it with anyone that finds information here. And then post it wherever you can on the Internet. The more we put out our own useful information, the more we can help others.
God bless and please stay in touch. – Denise

I receive an infusion once a week. It is called chelation therapy. Do you know of its effectiveness? I go for and infusion once a week. I will receive the fourth infusion next week. Then I will talk with the alternative doctor and then I will see the oncologist two days later and get a blood test, around December 20th. I was really down before I began the infusions. I felt desperate, had low energy and had a cough for four weeks. Now I am back teaching and feel much better like walking and jumping on the trampoline. Thank you very much.

johnptodd,
That’s great! So glad you’re feeling better. Keep up the wonderful work!

I received another blood test ordered by the alternative doctor and my white blood cells have gone down and platelets have come up. I have been juicing a lot, eating lemon peel and taking bicarbonate of soda twice a day to keep the PH alkaline. Flushing out the system seems important, with lots of juice and water. No sugar or dairy or meat or white flour. Feel very good and have lost ten pounds.Spirituality is important. Met a woman and she is a spiritual leader. She allowed me to borrow many tapes by Richard Schulze and several books. They are intense. Conflict between medical and non-traditional healers. Sure wish they could cooperate for the common good of the people needing treatment.

Denise,

I have had 16 infusions in the past 4 months.
I take Low Dose naltrexone daily.
The doctor said that DMSO cannot be taken internally unless it is combined in a tincture.
I am taking eye drops for cataracts. The drops contain some DMSO.
I take iron pills twice a day. It is Hematogen Softgel.
I take Turmeric 720 mg twice a day.

White Blood Cell is 49.2. The count remains in the 40’s.
Platelets have gone from 75 to 99.

I was hoping that the WBC would go down, but it remains stable. I work part-time and sometimes feel very tired. There are no other side-effects.

How does this seem to you? Thank you for this website.

Hi John,
Thanks for writing. I’m not clear on what infusions you are taking over the last four months. Is this conventional treatment? Fluordine and Rituxin? Or Vitamin C? Probably you’re talking about the DMSO chelation. I would love to get your take on whether that’s what’s working for you.

About the rest… Low Dose Naltrexone has some good press — and some good anecdotal testimonials on the web. Because it is relatively safe, that’s good enough for me! I tried it for a while, with no success. However, that doesn’t mean that it isn’t working for you. Even in conventional medicine, it is NOT one-size-fits all. We all have to figure out our own path, learning from each other.

I’m not that familiar with DMSO, have read about it, etc., but never used it. Iron pills are a good thing if you’re low on iron or ferritin in your blood scores — or if your red blood count or hemoglobin is low. When you’re taking the pills, you need to have those markers checked on a regular basis (check with your health care provider) because you can overdose on this. Tumeric is a good anti-cancer food pill to take. Good deal about your platelets. Mine have also been below 100 on a few occasions, but generally they are above that important marker. Don’t know which of the things I’m doing are responsible, but I continue plugging along.

A stable WBC is a good thing when you have CLL, but us alternative types want better, I know. I remember crying in the hematologist’s office once, and she was perplexed, as I was “stable” at the time. I’d been expecting that “spontaneous” remission to kick in already, so I was very disappointed. The 40s aren’t a happy place, but many with CLL have a much higher count and no conventional treatment, so take heart.

If you are tired, try taking ubiquinol (an absorbable form of CoQ10). I take 200 units each morning, but you could start with 100 units. It is good for the heart and gives energy. When I quit taking it once, in an effort to reduce the number of pills I take, I really felt the difference; I was tired! Also, try to get to bed early, by 9pm or 10pm, and read in bed, relax. The more sleep you get before midnight, the better for your immune system. It feels very luxurious. Give it a try. That alone might be enough to help with your fatigue.

Glad you enjoy the site. I’ve gained many CLL buddies who help me as much as I help them.
All the best!
Denise

Denise,
Thank you very much for your comments. I don’t feel so alone if I can talk with someone who understands.
Warm regards to you.

My cancer doctor suggests fludarabin, cytoxan and rituxan.
The alternative doctor in Parker City gives infusions with high concentrations of vitamin c and other vitamins with DMSO. I believe this is helping with energy. I do not know if it has any effect on WBC or platelets. I believe that Naltrexone keeps my WBC count controlled. This is subjective and I have no way of knowing directly. One big concern is that I have more regular BMs. This seems to be one key to health. But fresh vegetables seem to help a lot. I increase fiber intake through bran and psyllium metamucil cookies.

I go to an alternative MD in Indiana and he gives me two pills of low dose naltrexone every few weeks. The pills cost six dollars per pill. Is this in line with other naltrexone prescriptions? Today I got six pills for thirty-six dollars. I am on social security. I am looking for a way to buy the pills less expensively. Is there another source, an MD, who can be contacted in the Richmond, Indiana or Dayton, Ohio area? The cancer doctor whom I see in Richmond is not willing to try naltrexone. The weekly infusions I receive have high doses of vitamin C, vitamin B 12, B complex, magnesium, hydrocloric acid, sodium bicarbonate and lidocaine.

Hi John,
You are being overcharged for the naltrexone. I used to take the pills by subscription. I don’t remember the cost, but I’m sure that I would remember if it was six dollars a pill! One place to look for an alternative doctor is on the ACAM site. (American College for Advancement in Medicine) On the home site, http://www.acamnet.org, if you scroll down there is a place to type in your zip code and see a list of alternative physicians in that zip code area. ABout your weekly infusions, everything sounds good, although I’m not familiar with taking hydrochloric acid or lidocaine. Have they explained the purpose for all the items in the infusion? Is it formulated especially for you—or is this a standard cancer or healthy treatment? (I guess I’m more curious than I would be if your doctor wasn’t overcharging for the naltrexone.)

When you do your search, call and ask the person who takes calls whether they prescribe low-dose naltrexone and get a sense of the office. There is variation from doctor to doctor and office to office. There are good doctors who are not on this list. But… when you’re looking for a new doctor, this is a good place to start.

Let me know what happens. – Denise

Denise
I went to the acamnet website and as far as I could understand I had to put the name of the physician in the search.
I am probably not doing this correctly.
I went to the advanced search and nonames came up.
What would you suggest for a next step. I must be missing something. Thanks a lot for your help.
I tried to send an email to you.
The infusion does not seem to be designed specifically for me. He is not a cancer doctor. He gives infusions to people with all sorts of ailments. The doctor seems to be over charging. I purchased a very small plastic bottle for cataracts. Eyedrops contained DMSO. The cost was $40.00.

Hi John,
First, I’m not liking what I hear about your current doctor. He is the type that gives alternative medical practitioners a bad name (ie: they’re out for your money; not that MDs ply their trade for free!). I just tried going to the acam.org site and it’s right there on the home page. There is a spot to type in your zip code and find a doctor within 25 miles (or more; your choice with a drop-down menu). So type in the zip code and press the return button on your keyboard and it should give you a list. If you still have problems with this, email your zip codes to me at info(at)cllalternatives.com (the “(at)” should be “@”) and I will email you the list. Other places you could check for a good local doctor is to ask for recommendations at a local health food store. Sometimes they are willing to help. Please let me know if you can find the list or not.
All the best,
Denise

Denise,
I tried the acamnet.org website again and four doctors came up within 35 miles. My zipcode is 47374, Richmond, Indiana.
The four names are James Barry, Theodore Cole, John Boyles and Oscar Ordonez. Are these the same names that you get? Reid Hospital is in Richmond but I suppose there are no alternative doctors here. I got Dr. Ordonez’s name from the local health food store.
I go to see Dr Quin on Thursday to have blood checked.
Thanks for your guidance in this.

Hi John,
I went back to the Acam.org site and then had the same experience you had earlier…instead of giving names and info of doctors, the search redirected me to a page that asked for doctor’s names! So I understand what you went through the first time around. Glad you came up with names! Your next job is to look up web sites for each of these doctors to get a sense of their practice. Then call either all of them, or whichever seems to be the best fit for you. Ask the receptionist about costs and whether insurance covers anything. Also do a search on Google for reviews of each of these doctors. This is not foolproof, as generally only people with complaints are motivated to make reviews. But still, if there are several negative comments, i would reconsider your choice. It’s a little bit of research and work, but well worth it to find a new practitioner. Also… are there any natural health magazines in your area? They are free around here, and the natural practitioners advertise in them.
Let me know how it works out for you.
All the best,
Denise

My white blood cell count went down from 49 to 42. Do you think it is a good idea to stop taking naltrexone? What do the consequences seem to be?

Hi John,
Seven points down is pretty good. How long have you been on the low dose naltrexone? If you’ve just started and have had this result, then continue, by all means. In my case, my WBC was going up and down on the naltrexone, and worse yet, I developed low neutrophils (neutropenia) while on this med, so I discontinued it. However, (big however) we with the CLL diagnosis are NOT one-size-fits-all, so please continue with the naltrexone for many, many months, maybe a year before you give up on it. Have you found a doctor that will prescribe it for you? I recall that you are being overcharged, which would understandably make you anxious to give it up.

Denise,
I checked out a website ThisisMS.com. I searched for doctors who prescribe LDN. One came up south of Columbus, Ohio, Dr. James Johnson. There were a number of doctors listed in different states. One person wrote that a person could call Dr. Bihari and he might give a prescription after a telephone interview. There is progress.

Hi John,
Glad you are making progress. Your determination is a great thing. Please keep me up to date on your quest.
All the best, Denise

Denise,
This is a challenging time. Platelets and hemoglobin are critically low. White Blood cells went back up to 49, critically high.I will get a transfusion tomorrow. The doctor recommends that chemotherapy begin in two weeks.
The infusions helped the energy level if I took them every week on a permanent basis. The Naltrexone helped the WBC but did not affect the hemoglobin or platelet counts.
Options seem limited at this point. I am very tired, lethargic, and lack zip and drive.

Hi John,
I’m sorry you’re doing so badly. It would exhaust me, too, if my doctor was telling me to have chemo in two weeks. First, keep that option on the table, but also keep in mind that you do not have an expiration date — and will not explode if you have chemo, say, in three or four weeks. So take some time to consider your options and perhaps get another opinion from another hematologist—perhaps even one of the big name docs like Michael Keating in Houston, Texas.

Second, if I were in your shoes, I would look into being part of the clinical trials for ibrutinib, a new non-chemo conventional treatment. It is doing so well that they are fast-tracking the trials to get it to more people sooner. Check it out on Google. ‘ibrutinib CLL’

Third, in the immediate now, I would get Peak Immune by Daiwa. I buy it at iherb.com. It seems to help my numbers a lot. You start by working up to 12 pills a day. After a month, you go on a maintenance dose. Give that a try and get tested BEFORE you start any conventional therapy. No side effects, just good results. It has mushrooms and rice bran.

Keep in mind that if you improve with conventional therapy, you can still resume all alternatives to keep yourself as well as possible for as long as possible.

Let me know what you decide to do.
God bless,
Denise

New to this site. Just found out that I have CLL….
I am eating healthier and hope to learn from others as well as you how to fight this disease. You seem to be a caring person, and that is important to me and many others.

Hi Bill,
So sorry you got the diagnosis—but glad that you found this site. While I don’t have all the answers and certainly not (as yet) a cure, I agree that camaraderie helps. I know what it’s like to be newly diagnosed, and also what it’s like to get a bad test result. It always helps to talk to others who have survived it and keep plugging along. If you’d like to share more of your situation, and perhaps more of what you mean by a healthy diet, please do.
Glad you wrote! – Denise

Denise,

Thank you for your suggestions. I will try the Peak immune and look into the clinical trials.

Blessings to you,

John

Thank you, John. Please keep me up to date with how you’re doing.
All the best, Denise

Denise,

I checked into the clinical trial and they involve chemotherapy and the drug Ibrutinib. I spoke with one of the organizers of the trial today.
I am a bit hesitant about taking chemotherapy.
I will begin taking Peak Immune this week. Did you say several pills a day? I called about Michael keating and I would have to travel to Houston from Indiana. Perhaps I would have to stay there several days. Do you know more about what he requires of patients?
Are there alternative therapies available?

Thanks so much,

John

Hi John,
I was reading back on what your medical concerns were. A WBC of 49 is NOT that dangerously high. My hematologist (conventional) told me that it could be as high as 100 without requiring therapy. That would be if there were no symptoms and the other markers were okay. What is your RBC and hemoglobin? And your platelets? Perhaps you should be sticking with the naltrexone if that’s reducing your WBC and then work separately on the other markers. Please let me know this information.

Now, to answer your current questions, if you REALLY need therapy, then so far, ibrutinib sounds pretty good with fairly impressive results–with the possibility of becoming a maintenance drug for a full life (rather than one that extends your life for a measly 18 months or so). That said, I would also be hesitant. Not 100% against it no matter what—just hesitant. What you could do is get another LOCAL opinion at a different hematologist at a different hospital system perhaps? I’m just not happy with that 2-week deadline. Sounds a little too pushy for me, unless you have something dire going on that you haven’t shared with me. Are you ill? (as in having a lot of infections or CLL-related symptoms?) Are your other markers dangerously low or high?—This kind of thing? I would like to know why your doctor is rushing you like this.

About Peak Immune, the instructions are on the bottle. When you start, you work your way up to 12 pills a day—I believe it’s 3 pills 4X/day, making sure to have some right before bed. Then after a month you return to maintenance dose, which is 1 pill 4X/day. I am doing that now, but haven’t been tested since being in maintenance this time around. I’ll be glad to share when I have been. I personally had zero side effect from these pills, but my neutrophils went up, way out of the dangerous territory. That is why I can recommend them.

I don’t really know what Dr. Keating requires of his patients. I spoke to the office there once, years ago, and the receptionist was kind and helpful. I would give them a call. About alternative therapies, there is UVBI (ultra violet blood irradiation), oxygen chambers, laetrile (Mexico, generally), dental revision (removing your mercury fillings and all root canals), vitamin D3 9-10,000 units/day, polymva, all are things that come to mind. They won’t necessarily cure you, but they might well get you healthy enough that your doctor will back off on the chemo demands.

And then, I do have to add this… a friend I’ve made because of this site did have chemo and is waiting to have the ibrutinib, and she says that upon rereading my site that I’m too absolute about chemo, that now she wishes she’d done it sooner, that she’s feeling (and looking) much better now, thank you very much. So…. we all have to find our own way, and living well and healthy –and long– is the goal. How we get there doesn’t matter so much.

If I were you, I would talk to Dr. Keating’s office, also take the Peak Immune, and look into where you might find these other alternative therapies near you. (I drive 1.5 hours for the UVBI.) My heart is with you John! Please keep writing and please keep working on yourself. I know you are going to be well!!!
All the best, Denise

Denise,
Chemotherapy will begin on Monday. There will be six cycles. There will be four days of chemo and then 21 days of rest and then another cycle until the middle of September. He took a bone marrow biopsy and 90% of the bone marrow was cancer cells.
I am apprehensive but do not see a reasonable alternative at this point.
I am not ill, just tired a lot.
I received the forms from the people who do the clinical trials with ibrutinib.
Here we go.
All the Best,
John

Hi John,
All the best to you, John. Please keep me/us up to date on how you’re doing.
– Denise

Hi Denise,
I had one week of chemotherapy. I had a strong reaction to Rituxan. I became very hot and red in the face and began to tremble. The nurse had to stop the drip. I get leukine injections almost every day. My white blood cell count has dropped from 49,000 to 3,000. I have had two transfusions, four pints of blood because my hemoglobin and platelets were too low. Mainly I feel subdued. I do very little and avoid any excitement. So far, the therapy has not brought on any major physical symptoms. Warm Regards.

Wishing you the very best with your therapy. Please keep in touch and up-to-date on how you’re doing. So far, so good.
All the best, Denise

Hi Denise!

I’ve read in your blog that you have self-reversed your CLL and it now seems to be in a remission state. I can’t believe it.
Would you give me a quick guide (just about 7/8 points) on what you do daily to achieve this? (as to tell my mother to try your approach).

In this case I don’t know if it will be possible to attain remission since my mother is in a stage were doctors have already adviced 1st treatment with I think it was Rituximab.

I’d really love hearing from you and also some advice on how to convince my mom on trying alternative since she seems obsessed with “traditional” medicine and denies any other thing.

Thank you and Best Regards,

Martin

Hi Martin,
You’ve read correctly. I’ve never been ill with CLL, (no terrible symptoms) but it was progressing as observed by blood test results, and like your mother, I’d been advised to have Rituximab (maybe it was Rituxin, which I believe is the same thing). Unlike your mother, I don’t have faith in traditional medicine. And so began a long (and continuing) odyssey to find a way to stay well. At first, I wanted to stay well long enough so that when “they” found a cure, I would still be alive to enjoy it. Now that 15 years have passed, I would prefer to stay alive and well without the help of conventional medicine. That said, conventional medicine has made great strides for presenting us with non-chemo treatments. There may be a time when CLL is treated like a chronic disease with meds that do the trick. For my part, now that I’ve experienced my own recovery and stabilization, I prefer the DIY method. It’s not for everyone. The fact that your mother is resistant is not a good sign for her going along with this. It isn’t easy. It takes a lot of determination and time, and money. I really don’t want to be discouraging, but it’s a fact. You can’t make people believe as you do, and you can’t make someone want something the way you do. I know it’s frustrating. I’ve tried to help other people with cancer, and I’m mostly ignored. (Not the people who contact me through this site, but friends and acquaintences who I’ve approached pretty much brush me off. I’m never offended, but it does make me sad.

Now, all that depressing stuff aside, you’ve asked for 7/8 points. I will do this, but keep in mind that each point could easily be a whole article, or even a book. But it is a good place to start.

1. Clean food. This means eat organic as much as possible. 80% vegetables, either raw, fermented, or lightly cooked. Oils are important…olive oil, coconut oil. Eat free range organic chicken and eggs, wild-caught fish, and grass-fed organic meats. Eat the size of a deck of cards each day. (not a lot, but enough) Fruit, mostly berries. Drink water, herbal tea.

2. Clean water. Use a water filter in your kitchen and bathroom. Drink and cook this filtered water. When you shower, the hot water opens your pores, so this is also a good time to be using filtered water.

3. Clean air. Do NOT use regular household cleansers. There are many natural substitutes. I use baking soda, white vinegar, peroxide and lemon. There are many youtube videos on how to use these effectively. I also used baby wipes to do quick clean jobs in the kitchen and bathroom.

4. Sleep. It’s important to get eight hours of sleep each night in a dark room to enhance your melatonin production. We heal while we sleep. Many times I’ve had swollen glands (part of the CLL issue), and the swelling goes down after a good night’s sleep.

5. Stress. We all need a certain amount of stress or challenges. However, it’s best to change your life over to make it as stress free as possible. You hate your commute? Look into a new job that is closer. Look over your relationships, business and personal, and see how you might improve your life and be calmer and happier.

6. Vitamin D. Yes, there is one supplement I can safely recommend to every one. Vitamin D deficiency has been linked to many cancers, including CLL. During my first few years at this, I was finally tested and my vit D hydroxy test score was an abysmal 19! My goal is to keep it as close to 100 as possible, without going over that 100 mark. For a long time I took 10,000 IU of Vit D3, but now have dropped to 9,000IU/day. It’s a lot, but people with cancer are recommended to take more than those trying for prevention. (I think 5000IU/day is fine for prevention.) People with cancer are recommended to keep vit D level at 70-99.

7. Find a good alternative doctor. I’ve had many, many practitioners, and I learn from each of them. Look at their web sites, research the doctors, Google them and see if there are complaints (or praises). And give them a try. I am skeptical of ALL medical professional advice. This means that I ALWAYS think for myself, and don’t think of it as “doctor’s orders” but instead as well-informed advice, which I may question. It’s my life, my body, and my choice.

8. If you have problems with neutrophils, take Peak Immune by Daiwa, as directed on the bottle. This has improved my neutrophil numbers twice. I continue to take them regularly.d

9. Tell your mom it is okay to do some of the alternatives AS WELL AS anything the conventional doctors advise. Of course, once you go the conventional route, you must tell them what you are doing, in case it could conflict with their offered treatment.

10. Take probiotics! I mentioned, in passing only, that it is good to eat fermented food, particularly home-made fermented foods. This is nature’s probiotics (good bacteria) and it’s best to eat some of this every day. That is a tall order (to start making your own, even though it gets very easy with practice). That said, there are probiotic pills out on the market that are excellent. I like Dr. Ohira’s brand, which I buy on iherb.com. (available on Amazon and elsewhere, do a search). There are also refrigerated brands available in health food stores and Whole Foods, if you have one nearby. It helps your immune system be well to keep feeding it this good bacteria which crowds out the bad and prevents illness.

11. Watch this video on Chris Beat Cancer. http://www.chrisbeatcancer.com/david-refused-chemo-and-healed-leukemia-naturally/ It is very inspiring and might give your mom the desire to do some of these things.

12. Foods to avoid: sugar, wheat, gluten, artificial colors, soda pop, fruit juice (have the whole fruit instead). Think in terms of eating as close as possible to the way God made it.

Okay, you asked for 7 or 8, and i went overboard. But believe me, this is all just a start. There is much more to know from each of the 12 items. Please feel free to write again, and let me know how Mom feels about this information. I hope she’s accepting of your help, and sees this as a loving gesture.

Wishing you and your family the best of health and happiness! – Denise

So glad I found your site! I am 39 years old and was just recently diagnosed with CLL after having a biopsy of a swollen lymph node. I joined an online support group and all they talked about were drugs and chemo. I believe if the body made it, it can heal it! I’ve been doing quite a bit of research on this. Green tea and tumeric is good to check out, ginger,and a raw vegan diet is also recommended. Thank you for this amazing site!

Sarah

Hi Sarah,
Glad you found this site as well! It’s my personal mission to ‘be there’ for people who are open to “non-conventional” action. Green tea and tumeric are both good options. I would try them both. Don’t forget that it’s not just want you put into your body, but it’s what you leave out. It’s time to start a diet free of processed foods. You ahve to become familiar with the produce section of the supermarket. (You maybe doing this already; I don’t know.) And also buy organic and free range meats/chicken, and wild caught fish. Eat vegan out, unless it’s an organic restaurant. Also…use natural personal care products (shampoo, soap, toothpaste, etc.) and clean house with baking soda and vinegar and other natural products. When your body is no longer bombarded by toxins and unhealthy foods, it works better with things like turmeric and green tea. The supplements cannot do the whole job! This is a difficult, but very do-able lifestyle change. Start with whatever is easiest, and keep adding new changes each week, and you will see results. Keep in mind that the tumeric and green tea may not be your answer. But you continue doing all the basics— and keep testing out new supplements until your tests (and symptoms) improve. Please read more of my site and do other research as well. Don’t give up. If I could do this, anyone who is determined can do it as well! Please feel free to as questions here or contact me at cllalternatives @ gmail.com (no spaces). Wishing you love, peace, and good health! – Denise

Hi Denise!
I was interested to see that you take thyroid support rather than natural desiccated thyroid. I took Levothyroxine after being diagnosed with underactive thyroid 2 years after the death of my husband. I was on Levo for 8 years and never felt well on it. After being diagnosed with CLL I changed to NDT after finding medical research evidence that found long term use of levo may cause cancer. I now find the tablets I have been taking have parabens in them! Is it safe to come off conventional treatment and use support only?

Hi Jen,
Thyroid medication has been a bugaboo for me. I was first put on NDT (natural dessicated thyroid) pills sometime in 2007 or 2008, as my alternative MD felt I had sub-clinical hypothyroidism. I started at a low dose and worked my way up to 60mg of NDT as well as a dose of iodoral. I never experienced hair loss until I was on the thyroid pills, so I wasn’t happy about that. Worse yet, when I started natural grounding, many years later, with a grounding sheet in bed and a grounding mat on my bed, it evidently changed my thyroid needs, as I became hyperthyroid, which was horrible! I had constant palpitations, was unable to rest (couldn’t sleep at night because it felt like I’d just finished being chased around the block), and I had weight loss despite eating normally.(I didn’t mind that! : ) I called the alternative doctor, thinking I’d developed a heart condition, and he told me to simply stop the NDT pills and that I’d be fine in two weeks. I did and I was. He (and other alternative doctors) have since urged me to go back on the NDT pills, but I just can’t bring myself to do it. I’ve been warned that I’m vulnerable to heart disease without it. Still, I prefer to take my chances with thyroid support. I get tested regularly, and my TSH is (sometimes) in the normal range. I have no other symptoms, so this is good enough for me. If you want to make changes, do it mindfully. Talk to your doctor, and even if you don’t agree — and you go ahead and do what you want, make sure to get your thyroid markers tested regularly, and also to make note of any and all symptoms. Your situation may be very different from mine, so it’s hard for me to give any advice beyond that.

I hope this helps.
All best, Denise

Hi Denise:
I am so grateful to you for all of your good advice for those of us who often feel lost. I was diagnosed over a year and a half ago. I’ve been taking many of the supplements that not only you recommend but have incorporated a few from Chris (Chris Beat Cancer) too. I’ve been in stage 0, however my recent blood work showed an increase in my WBC from 22.6 to 27.9. My lymphocyte absolute increased as well from 16.90 to 17.58. My platelet count went from 217 to 223 (within range). My oncologist told me in April that my numbers were “relatively stable.” He scheduled my blood test for every three months. I just had my blood work done last week and the results are reflected in my previous comments (April vs. July). I just got a letter from him and he now wants me to have another blood test run in eight weeks because of “atypical lymphocytes” (0.56).

I recently had what appeared to be a boil under my breast and treated it with warm compresses and tea tree oil. It has since gone down and no longer appears to be inflamed. I believe it may have contributed to the increase in my WBC. Do you agree? I read an article that drinking low fat milk and adding 1 tsp. of numeric is helpful for atypical lymphocytes.. I only drink Almond milk and if I were to drink regular milk for this suggestion, it’d have to be grass-fed, matured raised cow milk. Any suggestions? Also, where can I find low-dose naltrexone?

Hi Marsha,
I’m glad that my postings are helpful, and I totally understand how it feels to be “lost.” If it helps you, back in 2005 my doctor was telling me to come in more frequently for my low platelets, and was always watchful for that Richter transformation (a quick turn to a fatal form of CLL). Obviously, he was wrong. : )
I agree with your doctor that your numbers are “stable.” But I agree with you that the goal is to get the WBC and the Lymph counts lower!!! (I also test myself about every three months. It’s good to keep track. Don’t let that freak you out.) I don’t understand the “atypical lymphoctyes.” I think that by definition, all of us with the CLL diagnosis have atypical lymphocytes. There may be more to this, but it doesn’t mean that it’s something you can’t handle.

To answer your question, yes, anything like a boil, or an illness, an infection, will temporarily increase your WBC. I personally don’t get tested until I’ve been well for at least a week after anything like that. I don’t know about the low fat milk and tumeric. I agree with you that you should have grass-fed milk (preferably un-pasteurized, and purchased directly from the farmer — check out your local Weston Price Foundation chapter to find this). Also, consider making your own bone broth soup. (Weston Price is your source for this info as well.) Low-dose naltrexone is by prescription only. So you need to find an alternative doctor to prescribe this. I doubt that your hematologist would be open to it. (I tried it and it did not work for me. However, this means only that it didn’t work for me! It might work for you!!!)

What has worked for me in lowering WBC is discontinuing all high-heat cooked foods. I cook low and slow, and never burn my food. Never eat burnt chips (or any potato chips, for that matter.) Over two months, just this change lowered my WBC!!!

An important suggestion: dont’ let this make you crazy. You are NOT about to explode. You are fine. You are not experiencing symptoms. The doctor says you are stable. Chances are this is a bump and a scare and it will pass. I know it’s hard, but try to believe that you are fine and that you will be fine— and this helps make it happen. Also…let yourself go to bed early and have the luxury of a long night of sleep. Nothing makes you feel more like you’re healing than this.

Please write again if you have more questions — and also let me know how you’re doing!
All best, Denise

Leave a Reply


1 × = five