May is Lyme Disease Awareness Month Blog Post #14: Neurodegenerative Diseases

If you were diagnosed with a neurodegenerative disease such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis (ALS), Alzheimers or Parkinson’s you should watch these videos.  You should also watch these videos if you were diagnosed with Fibromyalgia.

Dr. Alfred Miller, practiced Internal Medicine and Rheumatologist for 40 years and is a Mayo Clinic trained physician.  In 2008, he started looking into ALS when his daughter-in-law was diagnosed with it.  He heard about the ALS being misdiagnosed with Lyme Disease so he began researching more.

Video 1:  Intro

Video Part 1:  Considering an alternative cause for Neurodegenerative Diseases

Video Part 2: Proper Testing of Lyme and Chronic Lyme Disease

Video Part 3: Illnesses that are Manifestation of Lyme Disease

Video Part 4: Neurodegenerative Diagnoses in Athletes

Dr. Miller stresses the urgency of getting PROPERLY tested.  He states this because if you get properly tested and diagnosed with Lyme Disease you can then get treatment and have a chance of recovering from these conditions.

mimic disesaes

 

You can watch the videos above but he is basically saying that all of these illnesses

can present exactly like Lyme Disease and that the patients MUST be PROPERLY tested for Lyme.   The only way to be PROPERLY tested for Lyme is to see a Lyme Literate MD.

Why does it matter what diagnosis you have?  Well, it matters if you want to possibly heal and get rid of your symptoms.

 

 

 

 

 

 

 

 

 

 

May is Lyme Disease Awareness Month Blog Post #8: What are Spirochetes?

When you become disabled with a chronic illness that you know nothing about you end up spending hours and hours reading everything you can about it.  It’s overwhelming  when it’s Lyme Disease because there is SO much information online but every time I read stuff I feel I know less and less about this disease.  There are so many terms to learn too.  Like Spirochetes?  WTH?  I really should have gotten a medical degree instead of accounting.  

What are Spirochetes?

Spirochetes are spiral-shaped bacteria which look like this.

spirochetes

These spiral-shaped cork screw bacteria are the cause of Lyme Disease, Borrelia Burgdorferi.  And there are many strains of this bacteria.  The International Lyme and Associated Disease Society states “There are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the USA, and 300 strains worldwide.” 

Because of the nature of the bacteria (cork screw) it can go through your blood and tissues so it can cause damage in all parts of your body.  This is why Lyme Disease is a multi-system disease and why is is so hard to detect.  The Spirochetes are really clever and can take different forms and hide in your body undetected.  And these Borrelia Spirochetes can lay dormant in your body for years or even decades before they come out and cause damage.  This is the important reason why you should see a Lyme Literate MD if you get bit by a tick.  Because you may think nothing of it now and you won’t even think anything is wrong even if you get  flu-like symptoms after getting bit.  Because you will think it’s the flu and not the tick bite because you did not get a bulls-eye rash.  

Pro Health Article


Previous Posts in this Series

May is Lyme Disease Awareness Month Blog Post # 7  Testing for Lyme Disease

May is Lyme Disease Awareness Month Blog Post # 6 What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post # 5   What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins

 

May is Lyme Disease Awareness Month Blog Post #7: Testing for Lyme Disease

Why is it so hard for doctors to determine if a patient has Lyme Disease?  

In a previous post I mentioned that most doctors are not educated in Lyme Disease and that is why it goes undiagnosed and misdiagnosed for many patients for years.  

  • Since it mimics over 300 other diseases and doctors are not educated in it they assume it’s something else.
  • Since the the list of symptoms are endless it gets misdiagnosed as something else.
  • Most doctors think it does not exist in California so they don’t even consider it a possibility here.  They are lead to believe it only exists on the East Coast in the USA.  And if you get your doctor to test for it they don’t understand the testing so most everyone gets false negatives.  So even if your test comes back negative IT DOES NOT MEAN YOU DO NOT HAVE LYME DISEASE. 
  • The tests are not 100%.
  • The CDC’s two-tier testing method is flawed.
  • Most people have never heard much about Lyme Disease.
  • Most people have never heard of Lyme Literate MD’s

So what are the tests to determine if you have Lyme Disease?

If you get a test done at your regular MD they are only testing for one strain of Borrelia Burgdorferi.  And they are testing for the antibodies of that bacteria.  So basically they are testing your blood to see if your immune system responded to an infection and is trying to fight it off.  

I got tested on September 15, 2015 for the antibody of Borelli Burgdoferi (ELISA test) from my primary care physician and it came back negative so of course I was told I did not have Lyme Disease.  But that was not true.  The doctors don’t know about Lyme Disease so they do one blood test and rule it out.  But to rule out Lyme Disease you need a clinical diagnosis and possibly Western Blot testing of Borrrelia and co-infections.  You can’t just test for ONE bacteria when most people can get more than one bacteria from a tick bite.  And your body can not fight off multiple infections at the same time.  So if you only test for one you are not getting accurate results.

So here is the basics on what testing is available?

ELISA  – Enzyme-Linked Immunosorbant Serum Assay

ELISA

Most doctors who are not educated in Lyme Disease will do the ELISA blood test.   And  if it’s negative they don’t do any other testing.  

Results from ElISA are as follows:

< = .90 is Negative

0.91 to 1.09 is Unequivocal 

>= 1.10 is Positive

My test result was < .90 so it’s assumed negative.  If it came back higher than 0.90 then a Western Blot test would have been done.  But it wasn’t and it was a year later when I went to a Lyme Literate MD that I had it done.  NOTE: 50% of the ELISA tests produce false negatives!

The Western Blot:

The Western Blot is testing different classes of antibodies IgM and IgG.  My understanding is that this test is more sensitive and may show positive results when the ELISA show up negative.  The IgM and IgG are Immunoglobulin type M and G. 

So if a patient has a lot of symptoms and possibly symptoms for a long time then the Western Blot should be done.  In fact, most people say you don’t even need blood tests since a clinical diagnosis for Lyme Disease can be made.  

However, I wanted proof that all my pain and other symptoms were caused by something.  Since I was told so many times I was making them up I wanted proof from a lab saying I was not making these up.  But getting a Lyme Diagnosis didn’t help since most most doctors still thought I was making these symptoms up.  Unfortunately, most insurances don’t cover the costs of these tests and they are very expensive.

The Western Blot still confuses me.  You get a report of the IgM and IgG antibodies and different bands that are either 

 –   Negative 

IND  – Indeterminate 

 +   Positive

Western Blot MEMeThe problem with the CDC is that they are conservative and say you must have 5 bands positive of Borellia Burgdorferi to have Lyme Disease.  Again, if you just stop at the ELISA then you really don’t know if you do or do not have Lyme Disease.  I can’t stress this enough.  You must see a Lyme Literate MD to rule out Lyme Disease.  Your primary care physicians and neurologists and other specialists at “TOP” medical facilities do not know how determine if someone has Lyme Disease.  These places will only do the ELISA test and stop there if it is negative.   

I did gets some positive bands and IND results for the IgM test for Borrelia Burgdorferi.  And I also tested positive for the co-infection Babesia.  So testing positive for Babesia, a co-infection basically means I have Lyme Disease.  


Both of these tests are flawed.  And depending on the lab used the protocols may be different.  And the CDC two-tiered testing is flawed.  So here are some links that can explain it much better than me.


What is PCR (Polymerase Chain Reaction) Tests and will there every be an accurate test?  Check out owndoc.com/PDF


My advice:  Go with your gut!  If you feel you didn’t get properly tested or the right diagnosis then go to a Lyme Literate MD.


Previous Post in this Series

May is Lyme Disease Awareness Month Blog Post #6 What are the Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post # 5   What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins

 

May is Lyme Disease Awareness Month Blog Post #4 Why is Lyme Called “The Great Imitator”

Lyme Disease has been called “The Great Imitator” because it mimics so many other diseases.  And because the symptoms mimic so many other disease it is often misdiagnosed.  

Because most doctors are not educated in Lyme Disease they frequently misdiagnosis their patients.  In fact, most doctors don’t even consider a Lyme Disease diagnosis. They may test for it but they are not educated in the testing and therefore when a patient test shows up negative they say they do not have Lyme Disease.

Hopefully at some point in the future

  • medical students will be educated properly
  • all medical specialities will be educated in Lyme Disease
  • testing for Lyme Disease will be more accurate
  • testing will be easily available for all patients
  • testing will be covered by medical insurances
  • medical professionals won’t dismiss it as possible diagnosis when the patient doesn’t remember getting bit by a tick.  
  • Medical professionals will stop telling patients that they are making up the symptoms and send them to a psychiatrist.  Because believe me, YOU CAN NOT MAKE UP THESE SYMPTOMS
  • Medical professionals will stop saying they don’t know why you have these symptoms and just write prescriptions to mask them.
  • Treatment for Lyme will become easier to get and more effective.
  • Big pharma will not be in control of our medical system
  • CDC will stop with the lies about Lyme Disease
  • A cure will be discovered!

So why does it matter if you get a Lyme Diagnosis or not?  Why does it matter if you get a diagnosis of MS, ALS, Bipolar, Parkinsons, Alzheimers, Chronic Fatigue Syndrome Depression, Chronic Migraines or Fibromyalgia instead of Lyme Disease?

Lyme Disease can get into your brain, joints, heart, lungs, muscles and nervous system.  It can effect all parts of your body so if you get a proper diagnosis you may be able to treat your condition.  Unfortunately right now you must see a Lyme Literate MD (LLMD) to get a proper diagnosis.  But because it’s “The Great Imitator”  seeing an LLMD is the only way to rule Lyme Disease out. Your regular MD or the specialist you go to now CAN NOT rule out Lyme Disease as the cause to your symptoms.

It all goes back to the same thing I said in a prior blog post.  Doctors are not trained to determine the cause of symptoms.  They are trained to give a diagnosis in their field of expertise and give pills to mask the symptoms.  If you want to know WHY you have these symptoms you should see an LLMD.  You should especially see an LLMD if you are given multiple diagnoses.  

If you don’t want know why you you started losing you memory or why you started getting tremors then just accept the diagnosis you have.  If you don’t want to know why you started having pain or why you have brain fog or are suddenly completely exhausted then just accept the diagnosis you have.  I didn’t!  I did not accept Fibromyalgia and a variety of other things as my diagnoses.  I knew something was really wrong.  I didn’t even have the typical tigger points for a Fibromyalgia diagnosis but they gave me that diagnosis anyways.  NO!  I WOULD NOT ACCEPT IT.  I wanted to know WHY!  I had doctors tell me I didn’t need to go to a Lyme specialist.  Once a doctor told me that I didn’t trust anything they said.  How can someone be so sure you don’t have something when they are so uneducated about it?  

There are over 300 disease that mimic Lyme so you might consider seeing an LLMD if you have any of the following medical conditions.

  • Fibromyalgia
  • Chronic Fatigue Syndrome 
  • Multiple Sclerosis (MS)
  • Psychiatric Disorders
  • Lupus 
  • Rheumatoid Arthritis 
  • Complex Regional Pain Syndrome (CRPS)
  • Amyotrophic Lateral Sclerosis (ALS)
  • Any Autoimmune Disorder
  • Chronic Migraines or other headache disorders 
  • Juvenile Health Problems like arthritis, memory loss, or other pain
  • Alzheimers
  • Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS)

If you have are given several diagnoses or any of the above diagnoses and you have some of these listed below you may want to consider Lyme Disease as the cause.

  • ADD and ADHD
  • Autism Spectrum Disorders
  • Thyroid Disorders
  • Sleep Disorders
  • Memory Problems
  • OCD
  • IBS
  • Chrons’s 

List of over 300 diseases that mimic “The Great Imitator”

Another list of over 300 diseases that mimic Lyme Disease


Previous Posts in this Series

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1:  Lyme Disease Awareness Month

May is Lyme Disease Awareness Month Blog Post #2 Prevention is the only cure!

#1:  BE AWARE OF WHAT CAN BITE YOU

IMG_1685


#2:  PROTECT YOURSELF WHILE OUTDOORS (INCLUDING GARDENING)

#3:  PERFORM TICK CHECKS

protect_yourself.jpg


#4:  LEARN WHAT TO DO IF YOU GET BIT AND SAVE YOUR TICK FOR TESTING

IMG_1687


SEND THE TICK TO THE BAY AREA LYME FOUNDATION FOR TESTING

Bay Area Lyme Foundation test for the following six pathogens:

  • Borrelia burgdorferi, which causes Lyme disease
  • Borrelia miyamotoi, which causes tick-borne relapsing fever

  • Babesia microti, which causes Babesiosis

  • Anaplasma phagocytophilum, which causes anaplasmosis

  • Ehrlichia chafeensis, which causes human monocytic erhlichiosis

  • Rickettsia rickettsii, the agent of Rocky Mountain Spotted Fever


#5:  OPTIONS IF YOU HAVE BEEN BIT

Be proactive or take the wait and see approach.  Your decision.

Proactive would mean going to see a Lyme Literate MD (LLMD) for consultation. Not your regular MD.  Regular MD’s are not educated in Lyme Disease, co-infections and testing.  The International Lyme and Associated Disease Society and Lymenet.org have a LLMD finder for your area.

Wait and see approach:  Most people don’t get a rash but that doesn’t mean you don’t have an infection.  Some people get flu-like symptoms.  Meaning they get fatigue, stiffness, sleep pattern changes, a fever or irritability.  Once the rash and/or flu like symptoms go away that does not mean you do not have an infection.  It may mean that the infection is in the dormant stage.  If you have a rash you should see an LLMD.  If left untreated Lyme will become chronic and problems will develop later in life.

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Previous Post in this Series

May is Lyme Disease Awareness Month Blog Post #1  Lyme Disease Awareness Month Begins 

Stop Judging Treatment Choices

I find it very annoying that some people become so negative about someone else’s treatment choices.  I feel everyone has the right to decide what is best for them and it’s really rude and disrespectful to trash or put down something someone else decides to do.  Especially if the person says it is helping them.  It’s like everything in life.  Just because it’s not your choice DOES NOT MEAN IT IS WRONG!

This happens in real life and on social media.  Some people on social media just sit behind their computer and spew out hate and negativity towards someone that is either different from them or is doing something different from what they would do.

A Double Blind Study is Not Always Needed

I am particularly annoyed when someone dismisses and says that your treatment choice  is wrong because the treatment has not been published in a journal or that there are no double blind studies.  Or that the FDA has not approved it for “such and such” disease.  Or they state that the information they found is mostly anecdotal and no scientific research has been done on it so it should not be done.  HELLO?  Just because it isn’t published in your scientific journal and there have been no double blind studies on it does not mean it is wrong or not a valid treatment.

Eastern, natural, alternative or non-conventional medicine has been around a lot longer than western or modern medicine.  In fact, big pharmaceutical companies make synthetic drugs to replicate a natural medicine.  The only reason is money.  The FDA has approved 2 synthetic drugs similar to the compounds in marijuana but won’t legalize marijuana.   They won’t approve medical marijuana because a drug company can profit from selling a synthetic one.  Why would you want synthetic when you can get the real thing!

Wake up people!

Not all FDA approved drugs, vaccines or treatments are safe and it’s maddening when people are so close-minded that they don’t see this and think alternative or natural medicine is quackery.  Think about Chiropractors, Acupuncturist, Reiki Healers and Chinese Medicine.  So many people have negative opinions about them but so many people have been helped by them so why would you be against it.  Think about opioid medications.  So many people have negative opinions about anyone taking them but some people like me can’t function without them.  So stop judging someone that takes opioids just because you don’t.  And stop thinking that everyone that takes opioids is an addict.  Think about medical marijuana.  So many people are uneducated about the benefits of marijuana and just think people are drug addicts or losers and just want to be stoned.  And stop trashing my implant!  I get 80% relief of the pain from my implant.  80%!  That’s HUGE!  Just because it isn’t right for you doesn’t mean you have to be so negative about it or put it down.   If a treatment choice doesn’t effect you than mind your own business!

Educate Yourself! 

Most people are not educated in the benefits of marijuana.  Most people are not educated in the fact that it is normal for anyone taking opioids for chronic pain to become dependent on them.   Most people do not know that dependency is completely different than addiction.  Diabetics are dependent on their insulin.   No one would ever consider taking insulin away from a diabetic person.   So stop taking opioids away from people that need it just to function more like a “healthy” person.  Most people have never even heard of neuro-stimulator implants.  And people that have heard of them for migraines have not heard about how different The Reed Procedure is.  My own Stanford doctor acted very unprofessional when I said I was going to do the trial for The Reed Procedure.  She did this because at the time she was not educated in neuro-stimulators for migraines.  She did not believe me when I mentioned the high success rate of The Reed Procedure.  Which is strange because when I did two 5-day inpatient stays for DHE (Dihydroergotamine migraine treatment) she told me about it having a high success rate and it didn’t work for me.

Why would you be against something just because you don’t know anything about it?

In the past 21 years, I have had numerous people suggest treatments to me for my migraines.  Most people suggest treatments based on their experience with it helping them or someone they know.  When I receive a suggestions I say thank you and if it is something that I have not tried nor heard of I do my own research and decide if I want to try it.  If it is something I don’t feel is right for me I just don’t do it.  I don’t tell the person who gave me the suggestions that they are wrong about it because there are no double blind studies.  

I also have suggested treatments that have have helped me to others.  My blog is really my way of trying to help others with migraines and/or Lyme Disease.   I write about my experience and what has helped me hoping that it might help someone else too.  If sharing my story about my implant and my lyme diagnosis after 19 years of chronic daily migraines helps one person then I have met my goal.  

My conclusion:

  • When someone sends you a suggestion you should just accept it as a nice thoughtful gesture.  You have the right to decide if you want to try it but you do not need to send your conclusion back to that person.  In fact, don’t send anything back at all but a thank you.  
  • If you are not open to eastern, natural, alternative or non-conventional medicine that’s ok because it’s your choice.  But don’t dismiss anyone that uses a treatment you don’t want to use.
  • Try to keep an an open mind to different treatments and don’t tell others their treatment is wrong when they have said it has been helpful to them. Instead ask questions about it to learn more.
  • Don’t believe everything you read on the FDA, CDC or other government medical websites.
  • STOP JUDGING TREATMENT CHOICES

Possible Lyme Disease Symptoms

I’ve been reading a lot about Lyme disease and came across a list of  possible symptoms.  This is shocking!

“Persistent swollen glands, sore throat, fevers, chills, sore soles, especially in the morning, joint pain and/or swelling in fingers, toes, ankles, wrists, knees, elbows, hips, shoulders, numbness in the arms and/or legs, unexplained back pain, stiffness of the joints and back, muscle pain and cramps, obvious muscle weakness, twitching of the face or other muscles, confusion, difficulty thinking, difficulty with concentration, focus and reading, problem absorbing new information, searching for words and names, forgetfulness, poor short term memory, poor attention, disorientation: getting lost, going to wrong places, speech errors, such as wrong words or misspeaking, mood swings, irritability, depression, anxiety, panic attacks, psychosis (hallucinations, delusions), paranoia, bipolar, tremor, seizures, headaches, light and sound sensitivity, double, or blurry vision with floaters, ear pain, hearing problems, such as buzzing, ringing or decreased hearing, increased motion sickness, vertigo, spinning, off balance, “tippy” feeling, lightheadedness, wooziness, unavoidable need to sit or lie, fainting, flu-like feeling, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis-Bell&rsquos Palsy, dental pain, TMJ, neck creaks and cracks, stiffness, neck pain, fatigue, tiredness, poor stamina, insomnia, fractionated sleep, early awakening, excessive night time sleep, napping during the day, unexplained weight gain or loss, unexplained hair loss, pain in genital area, unexplained menstrual irregularity or milk production, breast pain, irritable bladder, erectile dysfunction, loss of libido, queasy stomach, nausea, heartburn, stomach pain, constipation, diarrhea, constipation alternating with diarrhea, low abdominal pain, cramps, heart murmur or valve prolapse, heart palpitations or skips, “Heart block” on EKG, chest wall pain or sore ribs, head congestion, breathlessness, “air hunger,” unexplained chronic cough, night sweats, exaggerated symptoms or worse hangover from alcohol, skin rashes, conjunctivitis (pinkeye), herpes, Zoster/Shingles.”