This post is written by Deirdre at http://lymeinchronicillness.com/ – a very informative and personal blog about a family struggling together with different symptoms and the failure of traditional medicine to treat them. Deirdre writes:
“Several years ago, my husband, three children and I were all diagnosed with Chronic Lyme disease. After years of strange symptoms, our “outside the box” pediatrician agreed to test us for Lyme disease. And he ACTUALLY tested us for Lyme- by blood work- not “muscle testing” or a good guess that that might be what we have.” Three of us were tested by Igenex lab- the gold standard for Lyme testing, and then we were all tested by LabCorp, to determine our CD57 NK cell marker essay- a test used by Lyme literate MD’s to determine if treatment is working. A suppressed CD57 – anything below 100- is considered abnormal, and anything below 70 is considered positive for Lyme, and below 20 is considered the last stages of Lyme disease. 4 of us tested around the 30 mark, and my teenage daughter (at the time) had a CD57 of 18, and interestingly she was the sickest of us all.
We also were tested and were found to have some of the co-infections that go along with Lyme, like mycoplasma pneumonaie, chlamydia pneumonia, HHV6, specific chronic parasites diagnosed by DNA samples, Chronic Epstein Barr, stage 2 candida overgrowth, etc. When the Lyme is present, the body can’t fight anything else either, so other infections become chronic as well. Lyme does tend to run in families, so this all seemed to make sense.
There are other theories that it can be spread by other vector insects, like mosquitos and knats…..and it can also be spread in vitro- from the mother to her children. For years, especially when the children were young, we spent a lot of time in the Texas Hill Country where deer are prevalent, so we were most likely infected by deer ticks. Ticks are about the size of a pin head, so it is conceivable that we never even knew we were bitten. Dr. Patricia Salvato, an AIDS, Lyme and Chronic Fatigue Syndrome MD in Houston, also agrees that other vector insects like mosquitos, can spread infections like Lyme, mycoplasma, etc.
Borrelia Burdorferi, which is the infection that causes Lyme disease, completely dysregulates the immune system, effecting most organ systems, including the brain. Initial symptoms include fever, headache, fatigue and depression. Later symptoms can include the joints, heart and central nervous system.
Chronic Lyme disease is caused by a delayed or inadequate treatment that can lead to the more serious symptoms, which can be disabling and difficult to treat. Some of our symptoms collectively – arthritis, irregular heartbeat (echocardiogram ruled out cardiomyopathy for one of my sons, after a couple of irregular sports EKGs), persistent shortness of breath and low lung function, multiple food sensitivities causing facial/ body swelling, enlarged cystic thyroids, adrenal exhaustion, insulin resistance, chronic fatigue, and the “neuro- symptoms” like depressive/ at times suicidal states, low energy levels, learning disabilities/ADHD/dyslexia, “Lyme rage”, etc.
My older son was born with a malformed lung, and had most of his left lung surgically removed at birth, then I discovered that Lyme passed gestationally can cause birth defects. One of the first organ systems that is effected by the infections is the thyroid/ adrenal axis- which causes debilitating exhaustion and low thyroid function, which we all had.
I believe that we were able to function at a certain manageable level because I have always been a big believer in the value of nutritional supplementation. Even when the kids were very young, I made them take things like omega 3s, and serious multi-vitamins- which may have offset the severity of our symptoms. Most people suffering with low CD 57 levels as low as ours were, have a hard time functioning at all on a daily basis- debilitated by severe fatigue, arthritis and depression initially, then progressing to later stages of illness, including the conditions listed on the first page of the blog.
We did try every type of treatment available for chronic Lyme disease over about an 8 year period of time, and after having spent over $200,000 and thousands of research hours online (if you do a search and read about people with chronic Lyme, especially whole families, you will find that it is common to spend a fortune on treatments, and most do not work!) I believe we finally found what works, at least it has worked for all of us. Many of the things we tried gave us some symptom relief, but nothing improved our CD 57 numbers.
Some of the things we tried were: ozone therapy- sauna and insufflations, stem cell therapy, colloidal silver, samento, Buenher protocol, transfer factor/ specific for Lyme and co-infections, Bio Essence protocol, Advanced Cell Training, NAET, Emotional Freedom Technique, NET, The Feinberg Method, Bio Cranial Technique, Dark Field Microscopy protocol, partial Marshall Protocol, Cranio Biotic, Far Infrared saunas, colon therapy, beta glucan therapy, and thousands of dollars worth of nutritional support!
I did notice in my research and “testing” with different treatment protocols, that many of the treatments helped with the symptoms, but RARELY if ever, did people retest their blood to see if there was real improvement on a cellular level- either by retesting the Lyme titers/ co-infection levels, or their CD 57 numbers…..and each time we would try something new, our symptoms would usually get a little better, but there wasn’t a feeling of complete wellness. And our CD 57 numbers still remained low. This was evidence to me that the infections were still there. It just seemed that most people were looking for symptom improvement, and weren’t interested in whether their immune markers were in the “normal range”. That seemed important to me as seen in traditional medicine, because symptoms can be “masked”. Our doctor always thought it was important to test the infection load and immune markers. I would say we felt better, but blood work showed differently. What was interesting, is once we REALLY began to feel better, after taking the fucoidan for several months, we decided to retest at that point, and our doctor was astounded that we all FINALLY had significant CD 57 NK cell marker improvement, after having tested us for several years without a budge in the numbers.
One day I was researching online, and listened in on a Health radio show hosted by health advocate, Dani Walker. I heard her explain that her husband had sarcoidosis, which is sometimes fatal, and that they had tried every type of traditional and alternative treatment available, and it wasn’t until they reluctantly tried the fucoidan, that he went into complete remission after taking 1/2 oz a day for 6 months. She went on to say that it had also had the same effect on 3 other people who also had sarcoidosis. I have read that Lyme can be the cause of sarcoidosis, and had suspected that my older son might even have it, due to his constant unexplained shortness of breath and a couple of granulomas spotted on his lungs a few years ago on a chest CT scan. So I decided to give it a try. After 9 months, taking 1/2 oz to 1 oz. a day on an empty stomach, my husband and 2 older children and I retested our CD 57, and the levels improved significantly. And our symptoms began to greatly improve over that same period of time.
We also added high dose flushing niacin, and niacinamide, and began to feel even more symptom improvement- after reading an amazing book called Niacin, The Real Story, written by 3 Ph.D.s. Niacin/ niacinamide in high enough doses, is known to treat everything from arthritis, learning disabilities, mental illness, Alzheimer’s candida overgrowth, cardiovascular disease… and the latest finding is that it kills Borrelia/ Lyme and other infections including MRSA and staph. So I believe that the fucoidan and the high dose niacin – along with many supporting nutritional supplements- is an excellent treatment for Chronic Lyme disease. My family finally feels well.
Another great thing is that the Herxheimer effect (the dead and dying cells trying to pass through elimination pathways- which can be very uncomfortable) was very minimal to non- existent, using these therapies. Other treatments would at times cause terrible die off reactions, especially for my daughter. At times she would feel incapacitated after taking something like transfer factor, or an ozone treatment, as her body wasn’t able to sufficiently eliminate the dead cells, so she would feel exhausted and have flu like symptoms. It would get so bad at times, that she would have to stop the therapy, or couldn’t function enough to go to school, etc. And what is interesting is that fucoidan is relatively new on the scene, and is not thought of as a Lyme treatment. The Sisel brand of fucoidan is what we use- a very concentrated form of fucoidan- with the fucoidan molecule small enough for maximum absorption.
Below are links about what fucoidan does in the human body. I believe it is the most effective immune modulator available, and is an effective treatment for just about every chronic condition, diabetes, cancer, heart disease, etc. The following links are to scientific studies on fucoidan in general. There are many brands of fucoidan on the market, but I believe that the Sisel brand of fucoidan is by far the most effective. Here’s why.
“With over 20 patents SISEL’s Tongan Limu Mo’ui has 5-8 times more fucoidan than Okinawa, wakame & kombu. Increasing effectiveness by an additional 4 to 7 times. It includes all 3 types of fucoidan: U, F, and G. SISEL is one of two companies authorized to harvest this highly effective source of fucoidan from Tonga.
Over 900 studies from the U.S. National Institute of Health show that fucoidan intensely supports energy, immunity, and normal hormonal, glucose and circulatory functions throughout almost every system in the human body.
Clinical trials have shown that fucoidan molecules are not active in many areas unless they are sulphonated; in nature only one in seven fucoidan molecules are sulphonated. Without the sulphur atom many of the biological benefits are not possible. SISEL’s patent pending process ensures every molecule of FuCoyDon is sulphonated. This can only be completed in the liquid state.
Sisel has 20 patents pending that are used in a revolutionary process that extracts fucoidan from raw seaweed and converts it into the most bio-available and cost effective liquid fucoidan on the market.”
The wonderful thing about the human body is that it CAN heal itself, given the proper nutrients. We have seen first hand how this can happen. Cysts began to disappear on thyroid gland ultrasound, normal EKG after years of abnormal ones, arthritis resolved, brain fog and depression lift, insulin resistance reversed, food sensitivities/ allergies subsided, memory and focus improved and energy level increased. And my hair started to grow back after years of hormone related hair loss. These are just some of the many things that began to change for the better.
Visit Deirdre’s blog for more information at http://lymeinchronicillness.com/.