May is Lyme Disease Awareness Month Blog Post #19: Mental Health and Lyme Disease

It makes sense that when you have a chronic illness you might have some feelings of sadness, hopelessness and loneliness.  Even feeling angry that you are constantly sick or grieving for the life you once had. Yes, anyone who is constantly sick day after day gets worn down and feels lost that their suffering may never end.


But would if you had a disease that could actually cause mental health problems?  

mood swings


I’ve read that 95% of all Lyme Disease Warriors have mental health problems.  But unfortunately most are misdiagnosed as having a psychiatric disorder instead.  Many people are on so many different medications because the psychiatric doctors don’t understand that there can be an underlying illness that can cause those symptoms.  Just think if all mental health professionals considered Lyme Disease as a cause and sent patients to a Lyme Literate MD (LLMD) there would be so much less suffering and more healing.  Many mental health professionals that have Lyme are testing their patients themselves or sending them to an LLMD. But unfortunately many people spend years and years on psychiatric medications and never get better.   Psychiatrists push medications, hospitalization and electroconvulsive therapy to patients and many never get better. WAKE UP PEOPLE!  If you continue to take meditations for a condition a doctor says you have and they don’t work then maybe you don’t have that condition.  You need to determined the root cause of your symptoms and treat it to heal.  I think a good doctor would be one using medications temporarily while trying to determine the cause so their patients can heal. 

Here is a great article by Sarah Marzillier: What Psychologists need to know about Lyme disease from 2009

And a brochure from the International Lyme and Associated Disease Society (ilads)


Remember Lyme Disease can mimic over 300 illnesses.  When a patient presents with depression, anxiety, bipolar or even schizophrenia you need to ask about other symptoms and get a medical history. 

Does the patient have any physical symptoms?

  • pain or aches in their body
  • migraines
  • heart problems
  • tremors or seizures
  • thyroid issues
  • memory problems
  • joint problems
  • sleep problems
  • fatigue
  • arthritis

Or have they been told these other labels? MS, ALS, Fibromyalgia, RA, Alzheimer’s, Chronic Fatigue Syndrome or anything else with an unknown cause.  If so, GET THEM TO A LYME LITERATE DOCTOR (MD or ND).


My experience:  I started feeling depressed about the same time I started getting frequent migraines. It’s very common for migraineur’s to get depression because we spend a lot of time in a dark room and don’t get much sunshine.  However, over the 20 years that I was wrongly diagnosed I was on numerous medications for whatever labels the doctors thought I had.  Of course, the medications made me worse and I eventually when off all them.

Psychiatrists feel they must label your actions as some psychiatric disorder.  They can’t separate a common occurrence of a person crying and being angry about something without labelling it and prescribing medications.

My last visit to a psychiatrist was the worst.  I was in excruciating and debilitating pain. I was almost at the point of needing a wheelchair. I was not able to walk without pain meds and the doctor lied to me and said she refilled my prescription when she didn’t. So, of course I was extremely upset that the doctor lied and no other doctors were helping me determine what was wrong. When I arrived at my appointment barely walking, I was angry and crying and told my psychiatrist how horrible several doctors had treated me. Her only answer was that I needed a mood stabilizer. Unbelievable!  Yes, I had a few choice words for her and never went back.  Patients should not be treated so poorly by physicians. I’ve had two decent doctors in 24 years and Psychiatrists are the worst! They are prescription happy! They think everyone needs medications.  It’s maddening!!  And when you get side effects from a drug they give you another to add to it to mask the side effects.  IT MAKES NO SENSE AT ALL!  They give depressed patients drugs that have suicide tendencies as a side effect.   Please read all you drug inserts and check for side effects and if you are not comfortable with any doctor and how they treat you find someone new. GO WITH YOUR GUT!  YOU KNOW WHAT’S BEST FOR YOU! Anyone that has ever been outside in their entire life (HAHA that is everyone)  has a chance of having Lyme disease and multiple co-infections.  Also, lyme has been proven to be passed from mom to baby and an STD.  YIKES!   


Why does Lyme Disease and it’s co-infections cause psychiatric disorders?

The infections can effect your central nervous system. A bacterial infection of a spirochete can make it’s way into your brain. Lymies have many other toxins in them that cause brain fog and other psychiatric issues too.

Our medical community can’t continue to ignore this.  At some point every doctor including psychiatrists needs to be educated in Lyme Disease.  Right now, most doctors have completely false information about Lyme including psychiatrists.

The medical community failed me for over 20 years

For all doctors:  It is NOT “all in our head”


There are many stories of people who were only assumed to have a mental illness when they actually had Lyme Disease.  Here is the story about Ally Hilfiger, daughter of Fashion Designer Tommy Hilfiger.  He committed her to a psych ward and luckily a doctor  was able to determine she had Lyme Disease.  

Ally Hilfiger On How Being Institutionalized By Her Father Saved Her Life

I hate the word crazy but this meme says a lot.

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 #6 What are Symptoms of Lyme Disease, PART II?

As I previously mentioned there are MANY symptoms of Lyme Disease and all of the co-infections have list of specific symptoms too.  A Lyme Literate MD (LLMD) can determine you have a specific co-infection just by your symptoms and they have to because the testing isn’t 100% accurate.

What are the co-infections?

  • Babesiosis (Babesia)
  • Bartonella
  • Ehrichlia
  • Mycoplasma and Anaplasama
  • Colorado Tick Fever and Rocky Mountain Spotted Fever
  • Powassan Virus
  • Q Fever
  • and more here at lymedisease.org

Here is a chart to compare symptoms of Lyme and the co-infections.

Babesiosis (Babesia) is the only co-infection that I test positive for but I’ve been told I probably have Bartonella and Ehrichlia too.

Here is a great website that lists the symptoms of Lyme Disease and co-infections.

Lyme-Symptoms.com

Babesia


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 #3 What is Lyme Disease?

When I was first diagnosed with Lyme Disease this is what I found out:

  • Lyme Disease can be bacterial and viral infections that you get from tick bite.
  • Lyme Diseases testing is inaccurate .
  • You can pick up more than one infection from a tick.
  • Other infections you get are called co-infections.
  • Ticks can be so small that most people don’t know that they have been bit. Some are the size of a poppy seed
  • Lyme Disease is referring to the bacterial infection Borrelia Burgdorferi.
  • My test showed I was positive for the co-infection called Babesiosis or Babesia.
  • I tested negative for Lyme Disease but because I tested positive for a co-infeciton, I have Lyme Disease.  The blood tests are testing antibodies that my body produces to fight an infection.   My body can only fight off so many things at once so not all infections will pop up positive.
  • When the Babesia infection gets better or goes away my body will start to fight the other infections and Lyme Disease will test positive.
  • Lyme Disease has been around for hundreds of years and was named after the town Lyme Connecticut.
  • Willie Burgdorfer was the scientist trying to determine why the so many people in the town and multiple family members in Lyme Connecticut were getting sick.
  • Lyme Disease is misdiagnosed all the time.
  • Many diseases mimic Lyme Disease so people are misdiagnosed.
  • Lyme Disease and it’s co-infecitons can cause problems in every part of your body.
  • My chronic daily migraines I have had for almost 20 years are most likely from Lyme Disease.
  • I’m going to get sicker before I get better.
  • There is NO cure for Lyme Disease-your symptoms will hopefully go in remission.

So that is the list of what I learned when I was first diagnosed November 9, 2015.  Then I began researching and reading more and more about Lyme Disease and here is what I found out.

What is Lyme Disease from lymedisease.org “Lyme disease is a bacterial infection primarily transmitted by Ixodes ticks, also known as deer ticks, and on the West Coast, black-legged ticks. These tiny arachnids are typically found in wooded and grassy areas. Although people may think of Lyme as an East Coast disease, it is found throughout the United States, as well as in more than sixty other countries.” “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.”

History from the Bay Area Lyme Foundation “Ticks and Lyme disease have been around for thousands of years. In fact, a recent autopsy on a 5,300-year-old mummy indicated the presence of the bacteria which causes Lyme disease. A German physician, Alfred Buchwald, first described the chronic skin rash, or erythema migrans, of what is now known to be Lyme disease more than 130 years ago. However, Lyme disease was only recognized in the United States in the 1960s and 1970s. And the bacteria that causes it – Borrelia burgdorferi – wasn’t officially classified until 1981.”


Additionally I found out:

  • A tick is not the only way of contacting Lyme Disease
    • Ticks
    • Fleas
    • Spiders
    • Flies
    • Mosquitos
  • If you know you have been bit by a tick you are one of the lucky ones.
    • Early Lyme Disease  
    • Most people don’t get a rash but if you do take photos for the doctor.
    • Most people get are flu-like symptoms after they have been bit.
    • Testing early frequently produce false negatives.
  • If not caught early than it can lay dormant in your body for years or decades.
  • If not caught early it can cause permanent long-time health problems.
  • People die from Lyme Disease.
  • Most people with Lyme Disease have more than one infection.
  • Most people get many wrong diagnoses and spend years being sick before they see a LLMD.
  • Most people do not get better with antibiotics.
  • After laying dormant Lyme Disease will start to appear when you are going through a stressful or traumatic event in your life.
  • Lyme disease may be sexually transmitted.
  • Lyme Disease infections may be transmitted through donated blood.  The American Red Cross website specifically states that you are not eligible to donate blood if you have Babesiosis (which is a lyme co-infection)  Sadly, since misdiagnosis is so common most people don’t know they have it.  
  • Lyme Disease can be pass from mom to baby lymedisease.org
  • Our government denies that chronic Lyme Disease exists.
  • The politics around Lyme Disease are keeping patients sick.

It’s very overwhelming when you get diagnosed with Lyme Disease.  The more I read.  The less I know. It bothers me that the CDC denies chronic Lyme exists even thought there are over 700 studies proving that it does.  That 90% of treatments for Lyme Disease are not covered by insurance (thanks CDC).  And, when I mention that I have Lyme Disease to medical professionals they treat me even worse.  They ask me if I am under more stress and refer me to a psychiatrist because they think I make these symptoms up.

Believe me.  You can not make this SH** up! 

Prevention is the only cure!


Previous Post

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

 

 

 

 

 

#ChronicPainSucks: Part III

In July my condition became a lot worse and I was living with level 9-10 pain every day.  The pain scale goes from 1 to 10 with 10 being the worst pain.  I was having a hard time functioning.  The pain was so severe I felt crippled.  By August I felt I would be in a wheelchair soon if I didn’t figure out what was was wrong.  Notice I said “if I didn’t figure out what was wrong”.  Yes, I had to figure it out myself.

I  was do for a visit with my Psychiatrist (I’m not counting her as one of the 5 doctors’) so I went to see her.  With 20 years of being in a dark room with migraines you naturally get depressed and become severely vitamin D deficient.  After my implant I started going off the antidepressants and was down to a small dose of Cymbalta.   At one point I was on 7 different medications.  It becomes so difficult to manage that many medications and it’s dangerous because it’s easy to make mistakes.  Just ask my husband~ And ask my friend Colleen how fun it is when Kim forgets to bring her medications on vacation.

Because I was so frustrated, mad and upset that no doctor was helping me, she said I needed a mood stabilizer.  WTF?  So this is how it always works….throw drugs at a problem.  Our medical system in the U.S. is ruled by the drug companies.  Pharmaceutical companies care only about the money and not helping patients get better.  Doctors just want to treat symptoms instead of figuring out what is wrong.  In fact, they treat side effects of a medication with another medication.  Have you seen the commercials for a medication to take to help opioid induced constipation?    So instead of adding fiber to your diet they recommend a drug.   I refused to accept another drug from the psychiatrist.  And, I am no longer seeing a psychiatrist.  I didn’t need a mood stabilizer.  I needed answers!

Back to my PCP at the Palo Alto Medical Foundation

My PCP has been amazing.  She listens to me and has helped me through many years of migraines.    She suggested I move on to the Stanford Pain Center.  Since I have been a patient with them in the past and didn’t really have a good experience I decided to find someone outside of Stanford.  My back up plan was to go to Stanford.  I googled pain doctors in my area and thankfully I found Remedy Medical Group.  And lucky for me they have an office in Redwood City.

To be Continued……

Chronic Pain and Depression

When my migraines first started in 1995 I began experiencing depression.  I never felt depressed before that.  I had no idea at the time that most people with chronic pain have depression.  I went to my primary care doctor and got Fioricet for the pain and Prozac for the depression.

I remember the first time I took Fioricet. I had no idea it had caffeine in it.  It was such a nightmare!  It didn’t help my level 10 exploding head pain AND I was wide awake.  I didn’t even think of going to the emergency room.  I just remember crying.  [What is Fioricet?  Per drugs.com:  Fioricet contains a combination of acetaminophen, butalbital, and caffeine. Acetaminophen is a pain reliever and fever reducer. Butalbital is in a group of drugs called barbiturates. It relaxes muscle contractions involved in a tension headache. Caffeine is a central nervous system stimulant. It relaxes muscle contractions in blood vessels to improve blood flow.]

I remember Prozac too: [Per drugwatch.com:  Patients taking Prozac may experience a host of side effects, including sexual dysfunction, dry mouth, nausea, headache, diarrhea, nervousness, restlessness, agitation, increased sweating, weight gain, insomnia and drowsiness.]  Strange how so many drugs have headaches as side effects.  I only took it for a few months and then switched to Zoloft.  [Per drugwatch.com:  Minor side effects of Zoloft that typically decrease after the first or second week of use include:, Nause, Diarrhea, Weight loss or gain, Increased sweating, Dizziness, Sleepiness or insomnia, Tremor, Dry mouth, Headache, Restlessness, Suicidal Thoughts, Sexual Dysfunction.  I didn’t stay on Zoloft very long either.

So if you are feeling depressed from all the head pain or just in general.  YOU ARE NOT ALONE

Check out NAMI, National Alliance on Mental Illiness.  

http://www.nami.org/Learn-More/Mental-Health-Conditions/Depression/Overview