Update on My Husband's CLL or Chronic Lymphatic Leukemia?
Learn how my husband's battle is going against his suspected CLL.
I am sharing this with reservations. I am not one to share things like this, but I feel the details might help someone who reads my Substack along the way. I am going to be discussing two cases: my father-in-law, who died of CLL about 7 years ago, who did nothing to treat his disease, neither traditional therapy nor alternative therapies. He did not treat it at all, and my husband’s case.
Photo by National Cancer Institute on Unsplash CLL is Chronic Lymphatic Leukemia.
My husband is 79 and was informed by our doctor in TN about the standard medical protocol for CLL 7 years ago. It is his decision to refuse standard treatment, as is mine. He can change his mind later as well. I feel it is the right of each individual to decide what kind of treatment they pursue, even if it would not be mine.
His father died of CLL, lived to 94, and played golf until 5 weeks before he died. Often, patients die of heart attacks or dementia before succumbing to CLL. His father is the first example I am going to tell you about.
His father would have died from CLL within two months, but ended his life early by refusing to eat or drink when he could no longer play golf. He said he didn't want to live if we couldn’t play, and he had his way in the end. He was seeing an oncologist, was on standard medicine, but not for CLL, and they simply said he was too old for the CLL treatments. CLL treatments could not be given due to the state of his liver and kidneys. He was also having swallowing issues. He drank up until the last two years of his life, when I was taking care of him. His diet was horrible for most of his life. He was genetically tough. He ate too much rich food and sugar.
His father refused vitamins or alternative therapies. He believed in standard medicine, took blood thinners and medicine for his heart issues, and took diabetes medicine, and I could not change his mind. It was his choice. When we started taking care of him, it was years later, and he had never told us about his white blood cell issues until we took over his care and were allowed to see his records and talk to his doctor. The service medical records showed he had been diagnosed but not treated by the military for over 5 years with CLL. It is interesting to note that as a military man, he was exposed to DDT in his early military career. The bases were sprayed with it. He was a pilot and exposed to the chemicals in the fuel and what they sprayed in war areas.
He outlived 3 heart attacks and numerous falls. I repeat, he played golf, took care of his bathroom chores, dressed himself, and did quite well physically until the end 6 weeks. He was mentally very severe with memory loss, but physically functioning. I took care of him 24 hours a day until the last, when he became combative and wouldn’t cooperate.
He was furious that he could’t play golf. It was his lifeblood. Every night at 12 PM, he would wake me up, already dressed, sitting in his chair, hat on, and be ready to go to breakfast. It took a lot to convince him to go back to bed. He walked into someones apt while I was at the store and scared the heck out of the people. The apartment managers gave him notice.
He couldn’t play golf, had a strong fist, and was losing his balance. Infections were setting in. His platelets were crashing. We made the hard decison to admit him into the hospital. His blood counts were at the end level. It was the end of his fight. I was at the end of my physical ability to manage him at his apartment. I was the only one he would let take care of him. He was a retired Lieutenant Commander, whose motto was I will do it my way and what part of NO don’t you understand. It’s engraved on his headstone.
So, I know a lot about CLL from experience and his father’s journey with it. I have researched it extensively, from standard medical protocols to alternative medicine therapies. If we had thousands of dollars, we would have more options to try.
Every one of you reading this has the right to make your own health care choices, whether it be standard medicine or alternative therapies. Both come with no quarantes especially at our age.
At our age, the end comes nearer, and none of us knows how long we will be on this earth.
We have a man in our church in his late 80’s who has survived 3 different cancers. They told him he would be dead a year ago. He still attends church every week, only using a walker. He had standard medicine, but he proved that their death sentence could be extended by several years.
We feel that at our age, it is our right to treat our health issues our way.
I see people our age at church using standard medicine, standard drugs, standard chemo, and radiation, and watch as they announce the cancer has returned months later. They are on walkers and in wheelchairs or dead. In a small town, everyone knows everything. We know who is getting chemo and radiation. We know their history. We see them die.
His CLL is not a typical case at all. Is it really CLL or Lyme disease complications?
Marty and I have been together since 2004. His history included playing on the Navy bases as a Navy brat, with DDT being sprayed where they played. When I met him, he was overweight, had cholesterol issues, had horrible migraines, and was on several prescription drugs. He had prostate cancer and surgery, but not chemo, long before I met him.
His doctor was completely frustrated with him and had gotten nowhere with him. He was skeptical about my bargain to try herbal medicine for 4 months before he took more prescriptions. By 4 months, he was off his prescriptions, no longer having headaches, had normal blood pressure, had lost weight, had given up the huge amounts of Coke and Pepsi, and was eating a better diet with much reduced sugar. I became his coach as well as loving him. We did live together, which made it easier to influence his negative lifestyle practices.
When we moved to TN, all his labs were normal. We built a huge greenhouse, started a backyard nursery, and trudged up and down a huge, steep hill multiple times a day. He was in great shape. We were there about 3 years before both of us began seeing our health degrade at the same time. We were scraping ticks off of us daily, the full 5 years we lived there, but we were ignored by the doctors. We had the rashes as well, but in TN, it was discounted until we got so ill that they acted. The lab tests that are now known to be deficient and lacking initially came out negative.
This was the beginning of the downfall of our health. Since his dad was living with us at that point, it was chalked up to stress. I started us on infection herbs as Oregano, but had no knowledge or experience with Lyme disease or its treatment. I didn’t know what was wrong other than that our health was getting worse.
So in 2018, we changed to a new doctor, who took us seriously, ran tests, and diagnosed Marty with Epstein-Barr. Then, kidney stones landed him in the hospital. I pleaded with our doctor to run Lyme disease tests as well. At the same time, I was horribly sick, and he ordered Lyme tests on me that now came out positive. By the time the tests came out positive, I was the sickest I had ever been in my life.
So we had just seen a doctor who diagnosed me with Lyme Disease, and we were waiting for tests to come back for possible Lyme disease for him. The test instead came back as Rocky Mountain Fever while he was in the hospital for kidney stones. He then got heavy IV antibiotics for the Rocky Mountain Spotted fever. So at the same time, he had severe stone pain and RMSFever in his 7-day hospital stay.
After 7 days, he came home with a white count of 30,000, which is above the norm of 10,000. He did not get better enough to work again, so he retired. He is 79 now.
The white count dropped by several thousand right out of the hospital, then started rising again. A new test showed Lyme disease, which I pressured the doctor to order, was positive. Since he had already received antibiotics, they wouldn’t treat him further.
After that point, his white count just rose a little at a time. It is known that after Rocky Mountain Spotted Fever, white blood cell counts can remain elevated for several years.
I then began researching Lyme disease from two doctors who are renowned for their herbal treatment for Lyme!
We began a program of herbs as soon as the doctors refused to do anything. In those days, it was 10 days of doxi, and supposedly, you were cured. Wrong! That was the treatment 7 years ago with most doctors, as is still the norm.
As months slid by, his white blood cell count kept rising slowly… very slowly. The doctors did not worry much and were not that concerned. An oncologist refused to see him at that time, saying he wasn’t showing symptoms at this point. He didn’t think it was cancer after reviewing his medical history and labs.
When we moved here to Colorado from TN, 5 years ago, he ended up in the hospital again with painful stones. His white count rose to 40,000 after that episode. After several more months, since he was having no further problems or pain with the stones, the doctors here refused to consider anything but CLL.
We ended up finding one doctor who agreed with me that it was not CLL, given the timeline and the Lyme and RMSF fevers. She moved away, and we’re left without a doctor again.
About that time, a researcher found evidence that, in some cases, Lyme disease attacks white blood cells rather than just red blood cells.
After a few years, Lyme disease can compromise both the red blood system and the white blood system and develop into CLL.
Through autopsies and examinations of the brain, spine, and other tissues, the researchers found evidence of Lyme bacteria attacking and overrunning the white blood system. The Lyme bacteria were engulfing healthy white blood cells and destroying them. These patients had once been treated for diagnosed Lyme; the treatment ended, and CLL developed several years later, ending their lives. They found Lyme bacteria in the brains, spinal cords, eyes, joints, and bloodstream of these dead patients. Yet, the cause of death was labeled CLL. That made his health issues even more complicated and confusing.
Oncologists and other doctors lack expertise in Lyme, and most discount it. They have one set of ideas. The doctors here have not listened or agreed to delve into more possibilities than just CLL. They ignore the Lyme diagnosis and RMSF.
I changed his herbal program to try to address both factors: Lyme and CLL,
His stage of CLL, for lack of a better diagnosis, is called Watch and Wait!
Even without his history, they do nothing about CLL in men his age until he gets to the stage of this disease, where there is pain, nausea, vomiting, weight loss, and swollen lymph nodes with pain.
CLL is a slow disease that kills over a 7 to 10 year period. Often, men his age die of heart disease or dementia before the CLL kills them. They have no cure, no idea what causes CLL, so at some point, when the elderly patient is in the later stages, they administer palliative measures such as platelet infusions. Drugs are not usually given because of age and the severity of the CLL drug side effects.
There are few PubMed studies dealing with CLL and herbs.
Cordyceps mushrooms have been studied, and one is currently underway. The difficulty lies in the amount of cordyceps required and its price. It is the beta-glutans mainly being tested on the CLL
There are only a few research studies of therapy for CLL other than standard medicine.
None of the cases you can find deal with the complication of Lyme in this white blood count issue. It costs most patients up to $20,000 to be properly diagnosed and treated for Lyme disease. Insurance, for the most part, does not cover proper Lyme testing or specialized Lyme doctors. Infectious Disease Specialists misdiagnose patients with Lyme more often than not. They are NOT Lyme literate.
So I am using a program with him using herbs and supplements that both address the white count issue and the Lyme disease factor. If Lyme disease is disrupting his white cell system, you have to stop it. Unfortunately, that is a problem even if we went to an expensive Lyme-literate doctor.
There are NO guarantees that either an herbal program or a standard medicine program is going to work for your cancer. No Guarantees!
There are no standard protocols that work with every Lyme patient, either. It is individual treatment plans that sometimes work and sometimes do not. Doctors have no idea why older men in their 70’s get CLL or why?
So, where is my husband now in this 7-year battle?
As of this week, his red blood system is still operating normally. His platelets are normal. His liver and kidney functions are normal. His sugar is normal. His heart doctor says his heart is fine. No high blood pressure or cholesterol issues. No GI problems, no nausea, no vomiting, just mild aches and pain, no weight loss, no signs of his body breaking down in most aspects. He is eating well. He does experience fatigue, but no debilitating fatigue that keeps him in bed or makes him feel unable to have a normal life.
He has mostly very good lab results until you get to his total white blood cell count, which rose by 11,000. His lymph cells rose about the same. So we have slowed down the progression but not stopped it. I am not satisfied with that. I refuse to give in to it.
He has one new symptom: one large, swollen lymph node in his neck that causes no pain. They don’t usually treat swollen lymph nodes until they become painful, because it is a common symptom of CLL.
His other symptom is a 7-year fungal infection on one arm, which never spreads to the rest of his visible skin areas, and defies treatment from standard medicine after a biopsy. After 7 years, 5 dermatologists, and 6 medicines, his arm swelled up some months ago. The doctor took him off the steroid and had no suggestions on what to do next. I told her we were going to try herbal medicine again at that point.
I then made a medicine with Neem and essential oils that has worked the most effectively in 7 years. I had tried unsuccessfully with herbs before. My theory is that he may have a systemic fungal infection, now resistant, that may be contributing to his blood count. He obviously has a resistant fungal infection on one arm.
Most of the herbs shown to kill leukemia cells are also antifungal. It is also interesting that fungal infections are a major problem in leukemia patients.
It is also interesting that most Leukemia patients are prone to infections, yet neither of us has ever had the flu, COVID, lung issues, colds, or any of the other viruses circulating in the past years. We have not received any of the shots, including flu vaccines.
If this were a standard CLL case, they would not treat him at this point. It's called watch-and-wait, and he would be considered either Stage 1 or Stage 2 out of 4 stages.
If you look at his labs, I have been doing well over the past 7 years. I am frustrated at this point that we have not managed to keep his white count from rising; we have only managed to slow it down, not solve the rising white blood cell count.
If I cannot stop the progression of his white cell count, it is only a matter of time before it affects his red blood count in the later stages. So, we are redoing his protocols.
I changed his program to the Jim Jordon Protocol with additions for the past month. I found his site by accident while researching. It made sense, and I have never tried him on herbs from that region. I frankly have not studied any of these herbs until now. I have been impressed.
I found an extensive database while researching, as well, on all the rainforest herbs by an ND named Leslie Taylor, a Rainforest Medicinal Plant Expert, whose expertise is in these herbs.
It includes historical use, research studies, and amazing research documentation over 17 years. Many of them show benefit for Leukemia and historical usage. The link to her site is having Google issues, so I am not giving out the link until she can fix this. I ordered her books as well. It was money well spent.
The lab tests this week are too early to show any improvement with this new protocol.
There is historical use evidence in the Amazon, and some research studies indicating that several rainforest herbs were used to treat Leukemia and other cancers, and are still used by doctors in the area.
I have found three herbs to add to his regimen. After reading the research, I am increasing the dosage of two of them.
Finding dosages is the hardest part. You also have to consider effects such as some thin the blood and may reduce blood pressure. He is taking no prescription drugs at all, so that makes it easier.
You must monitor blood pressure and blood sugar, and get lab tests every 2 months to make sure blood, liver, and kidney markers are within normal limits. I get a full panel of tests done on my husband every two months, costing $100 to $300 at Ulta Labs.
If you are on prescription drugs, chemo, or radiation, do not take herbs unless approved and monitored by your doctor. Herbs do affect how your drug works and how it works. There can be serious side effects when taking both herbs and medicines together.
If his platelet count starts to fall in the future or his red cell system fails, we will have to consider standard medicine options, such as platelet infusions. Platelets falling mean at a certain point, under 140, you run the danger of bleeding out. It kills you. Platlet infusions mainly give the patient more time, it does not cure it.
Does this new program mean we will win this battle? No, but there is a good reason to hope these new rainforest herbs may be the answer.
Jim Gordon’s protocol has been used for different types of cancer, which is why I added to it. His cancer was not Leukemia.
I will be writing about these rainforest herbs over the next few months. These herbs would also address the Lyme disease issue as well.
I will be sharing this journey with you, as private as I would like to keep it. Sharing it may help someone who reads these Substacks. I will also talk about the difficulty of walking this journey and how it affects you.
I would appreciate your supporting our journey. It's very expensive, so your paid subscription would be very helpful to us. I appreciate all of your subscriptions, paid or not.
If there is a doctor reading this, it is our health care choice, not yours, not the government’s, and not anyone else’s either. Please feel free to unsubscribe if you wish; I certainly will understand.
Warning to Readers
I am not advocating that any of you reading this should follow our lead. I do, however, suggest you investigate both standard medicine protocols and alternative medicine protocols before you make your decision.
Your decision should be your own, not scare tactics by standard medicine or your doctor. Research, research, and research before you let them cut on you.