Lyme disease and hair loss

Posted by on 10/1/2016 to News

Lyme disease and hair loss

Before I go into Lyme disease and hair loss, I believe it is more important to understand exactly what Lyme is and the fact that there are 200.000 new cases a year , and as you will see below, those are just the cases that test positive through a blood test. There are probably and estimated thousands who have Lyme disease yet test negative .

I was recently diagnosed with advanced chronic Lyme disease and have received quite the education on the subject. The first thing I learned is, that YOU CANNOT COUNT ON JUST THE BLOOD TEST ALONE. The second thing I learned is, that even the CDC admits there is no conclusive test for Lyme and that the current test's we have are not full proof. Someone like me, can test negative for years yet still have it.(see explanation below). It reminds many of the early 80's when AID'S attacked us. Many tested negative yet were actually positive and many who tested poz were getting false positive results. There just isn't a conclusive reliable test for it. I am going to try and simplify this blog the best I can (including my own story), because Lyme is a very complicated disease.

What is Lyme disease?

The definition of lyme disease is constantly changing according to Dr. Joseph Burrascano Jr (board member of the international lyme and associated diseases). We define lyme disease traditionally as an infectious illness caused by the Spirochete (Borrelia Durgdorferi...BD). It is an illness that results from the bite of an infected Tick. This included not only DB but the many co-infections that also may result such as Immune dysfunction, opportunistic infections,Biological toxins, metabolic and hormonal imbalances, reconditioning. But please put this in your memory banks...EVEN ACCORDING TO THE CDC, LYME IS DIFFICULT TO DIAGNOS AND TREAT.

How do we diagnose it?

Lyme Borreliosis (LB) is diagnosed clinically...THERE IS NO TEST FOR IT!!!!!. No matter the source or type clinically, the doctor must rule in or rule out infection with the pathogens or whether the infection is responsible for your symptoms. The entire clinical picture must be taken into account. One of the reasons it is so hard to detect, is that all the symptoms might not show up all together. One symptom might show up today, like fatigue, and in 6 months, confusion, in another two years, neuropathy and one common symptom that we don't think of lyme association (because all of us get it from time to time) is Joint pain.... etc etc etc. Another problem is, that we as human get skin irritations all the time, such as a simple rash, or what appears to be an ingrown hair, and we dismiss it and think “normal”.

The blood test for lyme disease is accurate in the early stages. In the early stage (two weeks to a few months), one can test positive with a blood test, however, huge controversy has arisen lately because many people don't get a rash nor do they show signs of lyme for years. As I have mentioned, you might not show signs of lyme for years, and late stage lyme is extremely hard to get a positive result from blood work alone. The tests are not sensitive enough to produce a positive result. That's why you have to look at the entire clinical picture.

My story

About 5 years ago, I came down with neuropathy( Disease or dysfunction of one or more Peripheral nerves typically found in the lower limb causing pain, weakness and numbness). No, I am not diabetic. Within a year, I went from beginning to advanced stage. Along with it, I got Reynauds disease( This is where your digests..fingers and toes, experiences a loss of blood flow or circulation.) It is characterized by repeat episodes of color changes of the skin in cold exposure or emotional stress and in some cases, can result in loss of tissue.... or loss of limb). I've lived with this for 5 years now. Last October, weighing 165 lbs, 32 waist size, I started to gain weight rapidly and by this April,I was 230 lbs with no change in my diet. I then started to experience slight episodes of confusion which turned into memory loss. These episodes were brief and short, but still concerning. For a while, I hid it very well even from my family.

Around late April, I noticed that my right arm was slightly shaking and after discussing all this with my PCP, she started a battery of tests from MRI'S, to Cat scans, to tons of blood panels (even for lyme), X-ray's and on and on, and everything came out normal. In May, I experienced symptoms of a Heart attack. My left arm curled into a ball, I lost breath with severe chest pain etc etc, and when I went to the ER, they hooked me up to the EKG. The intake nurse looked at my Partner and said..”Ummm we have a problem”. They admitted me right away and through specific blood work, they found that my ck level was 1800 (200 being abnormal and dangerous).

{ CK Definition-Creatine kinase (CK) — also known as creatine phosphokinase (CPK) or phospho-creatine kinase — is an enzyme expressed by various tissues and cell types. CK catalyses the conversion of creatine and utilizes Adenosine triphospate (ATP) to create Prosphocreatine (PCr) and Adenosine diphosphate reaction is reversible.

Clinically, CK is assayed in blood tests as a marker of damage of CK-rich tissue such as in the heart muscle breakdown)Muscular dystrophy,Myositides , the autoimmune and in acute kidney injury}If you notice, CK levels can effect the heart, thus, my heart attack symptoms. After about a month, my CK levels finally leveled out to 114. New symptoms started popping up, such as head aches, mood swings, severe joint pain(to the point where I was walking with a cane), imbalance,Cystic like acne,my sleeping patterns were crazy (for example, I would fall asleep right away, and in the middle of the night, Bob, Wes or Eric would find me sound asleep on the deck, or in the kitchen slumped over the sink) and when I wasn't doing that, I would wake up 5-6 times a night. This was all followed by constant fatigue,pain and weakness in my arms (which isn't great when your a hair designer), then swelling in my legs and feet and finally, the uncontrollable twitching of my eye muscles. On top of everything else, almost over night, large cystic like boils appeared on my face(two on the left cheek , one on the right) All classical symptoms of lyme.

One Saturday, In the middle of a hair cut, all of a sudden, my right hand went into spasm nearly cutting my clients ear off. I got through the day, and when I got home, I took my temp and it was low grade (100.4). I went to bed, and at 3am, I woke up in extreme spasm in both legs which I begged Bob to cut my legs off. After 5 minutes, they finally calmed down and in exhaustion, I passed out. When I woke up and my fever had gone up, Bob brought me to the ER, where I was admitted for 5 days .

AFTER an EKG, two MRI'S, 7 Blood Panels plus many other test's, My Doctor was smart and put me on inter Venus doxycycline (an antibiotic used for many infections including spinal meningitis and lyme ). After a very Botched and painful spinal tap, I tested negative for Meningitis, but then the blood work for Lyme came back and it was also negative. However, Less then 40 hours after my Doctor Started the doxyclycline, every symptom I ever had in the past two years (except for the neuropathy), suddenly disappeared. They Kept me for another day and a half for observation and then released me. Before My Dr released me, he suggested I see a Lyme Specialist due to the fact that I had every clinical sign of Lyme. He explained that lyme is more then a blood test, as it is hard to detect and the CDC is struggling to change it requirements of positive and negative testing. He also prescribed long term doxycyline for me.

I contacted a local well known Lyme specialist who is known to have a three year waiting period. I had heard about him through one of my mothers friends on Face Book who's friend was helped by this specialist. I left a message for this specialist sounding desperate to be seen ASAP....(ok, I pleaded with him).... He called less then 5 minutes later and said he could fit me in two weeks later.

Long story short, after meeting with him for almost two hours, we got quite the education on Lyme (most of which is stated above).One thing to mention here, is that he was shocked that no one questioned the fact that I gained 65 lbs in just 6 months. He stated this is almost impossible. He explained the problem with today's tests:The CDC criteria for a positive Lyme test(now, I'm overly simplifying this so most can understand because it gets very complicated):

Think of two sets of 5 vials (you know, vials are glass tubes) or a total of 10 vials.

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Vial set one is called IGM                       Vial set two is called IgG

Now, the CDC wants a preponderance of these vials filled with either bacteria or Spirochete(see above). In other words, my test came back with 2 vials filled in set one and the second set of vials had three vials filled (remember, this is an overly simplified version/ definition of the test). I did not reach the CDC version of a positive test, yet there is a huge set of scientists and doctors who say, that if someone (such as me) has 40% of vial set one filled and 70% of vial set two filled (when added together it equals 5 out of ten vials), then you add the classic CLINICAL SIGNS of Lyme, then most likely, especially in advanced cases such as mine, the new way of thinking is that I test positive for Lyme. These scientists and Doctors are desperately trying to get the CDC to change their way of thinking and believe, that there are a myriad of the population walking around with Lyme because simply because of a flawed way of thinking.

Lyme disease and hair loss

Now that you have had a crash course in Lyme disease, Let's talk about what this blog is really about. As stated above, we have talked about the many classic signs and symptoms of Lyme. Thinning hair and Hair loss is not a typical indicator of lyme infection Borrelia bacteria , and some believe that it occurs in less then 1% of patients where as some believe it is high as 40%.However, it is more likely that the stress on the body, the emotional stress and the medications used to treat Lyme is at fault. Also responsible for hair loss is advanced cases that go untreated.

Lyme disease creates havoc on the body and one thing that can be effected, especially in advanced cases is...THE THYROID and as we all know, a lot of us get moderate to severe hair loss because of thyroid issues and the medications associated with treating thyroid. Now, many people report that their hair loss gets better on the antibiotics used to treat Lyme.

There is no medical evidence that Hypothyroidism (an under active thyroid) causes hair loss with Lyme disease, rather, the stress that the disease can put on the body (again, both physical and physiological) is the factor that causes hair loss, however, the medications that doctors treat thyroid disease can cause hair loss as well. So, we have several factor's going on, but right now, there is no medical evidence with the connection with an under active thyroid.

Now, in general,we all know, that the reasons for hair loss are often two fold, with genetics playing a major role in most incidences. Male pattern baldness induced by gene expression is the number one cause of hair loss in men, and involves the individual hair follicles failing to continue producing hair and being unable to receive prompts from other, productive, hair follicles to recommence growth. However, improving this type of inter-cellular communication may come as a result of stem cell research, thus providing the much-touted cure for baldness in coming years. The other major factors for hair loss in both men and women include stress, hormonal problems or imbalances, a variety of diseases, and age.

Nutrition and Hair Loss in Lyme Disease

Poor nutrition is also a feature of many cases of thinning hair, particularly in conditions such as Lyme disease where a patient may have received a cocktail of medications affecting their general health, be so fatigued or affected by symptoms that it is difficult to take care of themselves properly, or be so overwhelmed by the efforts of fighting the infection that adequate nutrition is hard to achieve. As an example, significant stress, particularly where chronic, can lead to an overtaxed adrenal system and the adrenals require good levels of B vitamins, (particularly vitamin B5), to function adequately. B vitamins are also implicated in healthy hair growth and falling hair may be attributed to low B vitamin status in many cases.

One very specific cause of Lyme disease hair loss is the skin condition that occurs, usually late, in Lyme disease called acrodermatitis chronica atrophicans. More commonly found in European Lyme disease sufferers, particularly elderly patients, this skin condition is not sufficient for a diagnosed with Lyme disease itself (unlike the Lyme disease rash), and requires serologic Lyme disease test prior to being attributed to the condition. Histopathologic confirmation is also necessary for diagnosis with acrodermatitis chronica atrophicans. Oral doxycycline, or an alternative Lyme disease antibiotic, is used to treat cutaneous manifestations of Lyme disease. Four weeks of antibiotic therapy are usual for this particularly condition which typically presents as a gradual loss of hair and progressive fibrosing skin process.

Borrelia afzelii is thought the main culprit behind this Lyme disease hair loss which is not usually documented in Borrelia burgdorferi infections. The skin becomes tissue-paper-like and commonly affects the extremities and extensor surfaces. The most common sites are the foot, lower leg, the hand or forearm, and the olecranon area. The skin rash and loss of hair may also occur on the buttocks, upper arm, shoulder, or thigh however.


I made the Mistake (I wont say my Dr made the mistake because I believe in being pro-active in my own care), of relying on a blood test for Lyme not knowing that the test alone is not conclusive and not knowing that having lyme is more complicated then a simple blood test. Should my Dr have second guessed the many negative tests? Who's to say!!!!. Now, remember,Chronic persistent Lyme disease is again, very hard to detect and can affect the skin, brain, nervous system, muscles, bones, and cartilage.

Symptoms include:

  • Chronic arthritis

  • Fatigue

  • Headaches

  • Joint inflammation in the knees and other large joints

  • Memory loss

  • Mood changes

  • Sleep disorders

Other symptoms that may occur with this disease:

  • Abnormal sensitivity to light

  • Confusion

  • Fast onset of severe Acne

  • Decreased consciousness

  • Numbness and tingling

  • Heart attack like symptoms

  • Kidney problems which are unexplained

  • Consistent immune system problems which are unexplained

  • Neuropathy or arthritis at an earlier age

  • And other symptoms unexplained such as in my case where my CK levels were out of control.

In my case, It is too late as Lyme disease in me went undetected and untreated for too many years. My Lyme is considered Chronic advanced Lyme and there is no cure for it. Symptoms can be controlled(by antibiotics and anti fungal medications) and much like cancer does, it can go into remission, but I will always have it. It can also be controlled by diet (No carbs , high protein , no sugar, no grains). Please remember, YOU CAN DIE from Lyme disease or complications from Lyme and your body can sustain damage. In my case, there is damage to my heart and kidney. So, please, I cannot stress enough to not rely just on blood work. If you have more then three of the lyme symptoms, seek out a lyme specialist. Please be pro-active with your own health and know it is ok to ask your doctor for a referral to a specialist if you get a negative blood test. Remember my story and don't make the mistakes that I made , and Educate yourself as a parent, teacher, pet owner, outdoors-man (or women),sportsman,or have ever spent any time (what so ever) outside, on Lyme disease.THE SILENT KILLER