May is Lyme Disease Awareness Month Blog Post #27 #WEARENOTADDICTS

What does this hashtag even mean?  #WEARENOTADDICTS

There seems to be an attack or war against chronic pain patients like myself in this country and it is getting worse every day.  

Our government says there is an “opioid epidemic”  or an “opioid crisis” in this country without really giving you the whole picture.  They encourage the media to write big attracting headlines calling everyone who uses opioids an addict.  They take away the judgment of a doctor and come between them and their patient.  They have scared so many physicians that many have stopped prescribing opioids all together.  They have come out with stricter guidelines that only cause harm to legitimate chronic pain sufferers.  

I have been a chronic pain sufferer for 21 years and I have been treated very poorly by the medical community and it has gotten worse in the last year because there is a war against people like me.  

Let me explain to you the difference between a chronic pain sufferer and an addict because they are two completely different people.  

Chronic pain sufferers

  • do not make up pain
  • would love for people to believe us and stop judging us
  • are regular people who do not want to live a life in pain
  • are people who had a “life” or career before becoming a sufferer
  • did not choose to live with a chronic disease
  • we did not do anything wrong to deserve this pain or judgmental treatment from others
  • we try to stay hopeful that some day we won’t wake up suffering so much
  • we try so hard every day to get better and just accomplish one normal task a day
  • take pain medications to live a “normal” life
  • take pain medications just to get out of bed and function like a “normal” person
  • take pain medications to get to a tolerable level of pain not to eliminate it completely because for most of us that is impossible
  • volunteers to do random drug testing at their doctors to constantly prove to them that they are not taking street drugs or drugs from other physicians.  Yes, we have to sign a contract with our pain specialists. 
  • agree to meet their physicians on a regular basis and try non-drug alternatives to reduce their suffering
  • do not want to get “high”
  • break pills in half to reduce the dosage because they are limited on how many pills they are prescribed.  so, yes, we suffer more than we say.
  • break pills in half to see if they can get to a tolerable level on a lower dose
  • have no choice but do become dependent on their pain medications because that is what happens to you without your control
  • we would love to never have to see a doctor again
  • we constantly feel guilty of being a burden to our family and friends
  • we are jealous of you
  • we do not want to live like this

What is an Addict?

  • drug addiction is a brain disease according to NIDA
  • some may have started out in pain but end up having a drug addiction disease
  • may lie about being in pain to get medications
  • take drugs to get high or the next fix
  • go broke trying to get drugs to get high
  • some addicts resort to street drugs
  • some addicts shop doctors to get prescriptions
  • some may have started out in pain but enjoy the high so constantly seek it out
  • make all of us legitimate pain sufferers look like them

Dependence vs Addiction

Dependence usually refers to physical dependence.  For example, if you were in a coma and every day you received opioid medications you would become dependent on it and would wake up and have most likely have withdrawal symptoms if you were not given it again.  Your have no choice in it.  So if you take it as prescribed your body will become dependent on it and you will have withdrawal symptoms if you suddenly stop.   So, most people who are on it long term take less and less as they heal.  That’s if they have a condition they can heal from.  But if you stop suddenly and have been on it a while you will go through withdrawals which is a variety of symptoms.  The withdrawal is physical.  It’s your body having a reaction from the substance being out of your system.  So you can be physically dependent on it without being an addict.  The frustrating part is most people think you are automatically going to be an addict once you start the meds which is not the case for majority of people.  There are many other drugs that cause dependence besides opioids but the government has put fear inside the heads of physicians so some will abruptly stop prescribing it and the person will suffer immensely.  The suffering is physical not psychological.  Think about people who drink caffeine every day.  They can become dependent on it and suffer withdrawals like headaches if they stop drinking it suddenly.  Easiest way to get off caffeine is to wean yourself off.  

Addiction

Addiction is a different behavior all together.  It’s psychological.  It’s a compulsive behavior.  An addict is craving the high or the euphoric feeling they get from the drug.  They like it.  They feel it makes them function better but it’s not true.  An addicts life will completely change for the worse.  They won’t realize the harmful behavior and will do anything or spend a lot of money to get the drug or different drugs.  It will effect their home, school and work life for the worse.

Lastly, people dependent on their opioid medications will function better.  They can live a normal life.  They can get out of bed, shower, eat breakfast, go to work, socialize with friends.

There is a chronic pain crisis in this country and no one is addressing it!  They are so focused on talking about opioids and restricting opioids from people that need it.

So NO #WEARENOTADDICTS  

My prior post on opioids here.

May is Lyme Disease Awareness Month Blog Post #23: What about a cure?

Don’t believe anyone (even a doctor) that tells you Lyme Disease is hard to get and easy to cure because that isn’t true.  And don’t believe anyone (even a doctor) that tells you Lyme doesn’t exist in you state because that isn’t true either.  Lyme is every where in the world except Antartica.  Once Lyme Disease is chronic it’s extremely difficult to treat.  See my prior posts about the politics, denial and lies about Lyme Disease if you missed it.


But what about a cure?  

Nope!  

There is no known cure!


If there was a cure for Lyme Disease us Lymies would not be suffering so much.  But the patients are the ones to suffer while the medical community and the government continue to fight over whether Chronic Lyme Disease exists.  It’s maddening!

We suffer in many way:

  • We are told we don’t have Lyme by doctors that are uneducated 
  • We are misdiagnosed and told we have many other diseases that are wrong
  • We are told that all these symptoms are “all in our head” and we need a psychiatrist.  
  • We are denied treatment by our insurance
  • We pay out of pocket for 90% of our treatments 
  • We go broke trying to get better

And the bottom line is that WE JUST WANT TO FEEL BETTER!  We don’t want to spend our lives in bed.  We don’t want to take a million pills and get poked with a million needles.  We just WANT TO BE NORMAL!  We want others to believe us and we want the denial to stop!

So NO there is no cure for Lyme Disease.  

May is Lyme Disease Awareness Month Blog Post #20: Stevia, CBD and Bee Venom Therapy for Lyme Treatment

Stevia 

Stevia is a plant that is used as a sweetener instead of processed sugar.  It’s been reported that Stevia is better than antibiotics in treating Lyme Disease.  

Here’s a few articles about Stevia.  

It seems like more research needs to be done but if you like to sweeten your smoothies it’s not a bad option as a sweetener.  

CBD Oil

CBD oil is the non-psychoactive part of a marijuana plant.  It has been shown to be very helpful in treating many conditions.  You need to forget everything you think about marijuana because marijuana is a plant that has some amazing health benefits.  Yes, some people smoke it just to get high but there are parts of the plant that do not make you high.  So open your mind and read some articles.

IMG_1007

Marijuana Leaf Key Clip


Bee Venom

Here’s a few stories of people that have used Bee Venom to treat their Lyme Disease

From Lyme to Life

ABC News Phoenix

Pioneers:  Healing Lyme with Bee Venom Therapy

Bee Venom Therapy


Definitely some interesting things to consider.  When you are debilitated with Lyme Disease you really become open and deparate to try any method to heal.  Something may seem crazy but if it may help you get better it might be worth a try.  I feel everyone has the right to decide what treatment is best for them.  You know your body the best and you know what you are comfortable doing.  

I’d love to hear from anyone that has tried Stevia, CBD Oil or Bee Venom Therapy and what your results were.

May is Lyme Disease Awareness Month Blog Post #18: Jarisch-Herxheimer Reaction

Herxing happens to everyone in treatment for Lyme Disease.  What the heck is herxing?  or a herx reaction?

Herxing is what everyone refers to as “getting sicker before you get better.  Herxing is no joke!  A herx is a Jarish-Herxheimer reaction.  Basically, when you kill off bacteria, viruses, parasites, fungus or anything  in your body you get a “die-off” reaction which is referred to as a herx.  

There is no way to avoid herxing when it comes to Lyme Disease.  You have no option but to continue to kill off stuff to get better.  Imagine how you would feel if something was dying inside of you.  YES!  Imagine that!  HORRIBLE!  Yes, you feel horrible.

Basically, your usually horrific symptoms will get worse and you will feel like you have the flu at the same time.  So for me, I get worse body pain and a migraine but also general body aches, joint pain, nausea, dizziness and an overall feeling of sickness.  And the best part is herxing can last days!!!  So right now I am getting infusions twice a week. So if I get infusions on a Tuesday I may feel sick Wednesday and/or Thursday and then just as I feel a bit better I get another infusion on Friday.  But, I can’t stop.  I have to keep the treatments going.  So I just know I will feel like crap most days so in the long run I heal.  Eventually, as there is less to kill off I won’t be herxing as much.

Here are a few descriptions of a Jarish-Herxheimer reaction


What do you do when you are herxing to help minimize the herx? 

Drink a lot of water with lemon

lemon water.png

Coffee enema

DIY coffee Enema

Epsom salt bath

dr-teals epsom salts

Alka-Seltzer Gold

alka sletzer gold pic

Unda Numbers

You can ask your ND about which numbers work for detoxing

unda numbers

Or you can try this 

Herx Drink 

8 ounces of water

1/4 cup of lemon juice

2 Alka-Seltzer Gold tablets

1500mg of liposomal glutathione 


Please remember to consult your medical provider before trying any of the above.

 

May is Lyme Disease Awareness Month Blog Post #16: Treating Lyme Disease Part I

This is were it gets very complicated.  Lyme isn’t simple to treat.  When you have cancer you see an oncologist and they may suggest chemotherapy, radiation and possibly surgery to remove a tumor and cancerous cells. But with Lyme Disease you can’t do that.  

So what happen when you visit a Lyme Literate MD (LLMD) and test positive for Lyme Disease or one the co-infections?

Here is my experience:

When I finally decided that I did not agree with the diagnoses that I was given I asked my pain doctor about the possibility of Lyme Disease. Of course, since I already had the ELISA test that came back negative all the doctors assumed I did not have Lyme Disease.  But since my pain doctor didn’t agree with the other diagnoses that I was given he suggested I see the LLMD in San Francisco.  So October 9, 2015, I headed to San Francisco.

The Nurse Practitioner I saw suspected I had Lyme based on a her clinical diagnosis but ordered blood tests as well.  She suggested I start on antibiotics before the blood tests came back.  She had me start on certain antibiotics to get my body used to them and she would switch the antibiotics once the test results came back.

On November 9, 2015 the blood tests came back and I tested positive for Babesiosis, a co-infection of Lyme Disease.  I tested negative for Borrelia Burgdorferi but testing positive for a co-infection basically meant I had Lyme Disease.  


Antibiotics:  I was on a few different antibiotics for 3 and 1/2 months and then additional blood test were run.  However, after 3 1/2 months of antibiotics my stomach was ruined.  Antibiotics kill the healthy bacteria in your intestines and allow an excessive growth of yeast or candida.  According to Natural News “candida overgrowth can be at the bottom of headaches, acne, eczema, PMS, athlete’s foot, cancer, allergies, depression, chronic fatigue, vision problems, sinus problems, ear problems, rashes, hormonal imbalances, yeast infections, migraines, mood swings, symptoms of MS, irritable bowel symptom, constipation, poor memory, chronic pain, acid reflux and more.” 

So after that I found a LLMD closer to my home and decided to get another opinion.  


Early Spring of 2016, I saw another Lyme Literate Nurse Practitioner and more blood tests were run and over 10 different supplements/prescriptions/herbal formulas were recommended.  Some I bought through the office and some I had to call specific companies to order.  At the time I thought this new path would be great and liked the Nurse Practitioner and was told to come back in 3 months.

I tried my best to follow the protocol but it’s really overwhelming.  And when you don’t feel good it makes if a hundred times worse.  Then when you take stuff that kills off things in our body you get sick before you get better.  I’ll explain that in another post.  But when you get sicker you don’t want to continue taking so much stuff.  I tried to take a lot of notes and make sure I was following everything correctly but it’s extremely difficult to manage.  After a couple of visits I was really disappointed in my progress and felt I was getting worse.  I ended up each visit buying more and more things and not really using them.  I spent thousands of dollars with visits and “medicine” but wasn’t any better and 90% of it is not covered by insurance.  


By June 2016, I realized my house might be making me sick so in August and September I decided to leave my house to test my theory.  I was right.  My house was making me sick and you can read more about that here.

So, once I thought I had a mold illness I searched online to see what to do.  I realized that the other LLMD in my town was a mold illness specialist so I decided to see him.  I went to his website and tried to follow what he recommended before the appointment.  He was booked 4 months out but I got on the cancellation list and got in quickly.


By September 2016, I was following the protocol of the new doctor.  He advised me to stop doing ozone which to this day I regret.  Ozone has been my favorite treatment so far.  Ozone (MAH) helped get rid of my Babesia symptoms not the antibiotics.  But I decided that if he was going to help me I needed to follow exactly what he said.  

So here I was on my third LLMD.  This doctor seemed to have a better plan than the last two but still after several months I found myself worse, overwhelmed and out a lot more money.   By this time, due to my declining health my husband had to drive me to the appointments.  We both would take a lot of notes and ask questions only to get home and still be confused.  LLMD’s are not easy to get ahold of if you have questions either.   I had to fax them and then they may eventually respond.  They don’t have any after hours numbers if you need to talk to someone.  I find that really frustrating.  When you have reactions to stuff they give you you have no one to contact to ask a question.  

At the next visits he changed most everything I was taking and wanted me to buy more of his recommended stuff.  It’s so frustrating!  I can really see why some people think LLMD’s are a scam and quacks.  They don’t take insurance and constantly run what I believe are unnecessary tests and have you buy a millions different things every time.  So by fall 2016, I had a HUGE bag of stuff I had purchased but hadn’t taken.  What a complete waste.  I really felt that the LLMD’s were not my path to getting better.  He also wanted me to do this ART testing, which I did.  But once again I felt it was a waste of money.  He also wanted me to do some sort of desensitizing treatment with another practitioner but because of my implant I couldn’t do it.  I’m glad I didn’t spend money on that.  

At my last visit with him, I was really upset when he told me several times my brain is not working and my husband needs to take over for me.  And, he kinda laughed and said sometimes I have couples and both of them have Lyme and neither one can follow all of this. Let me tell you, even people with a clear mind and no brain fog would have a hard time following these protocols.  

Here’s a sample of what they do:

  1. Take 5 drops in water from bottle A in the morning
  2. 15 minutes later take 4 pills from bottle B
  3. 30 minutes later take your XYZ medication
  4. 30 minutes after that take 1 drop of Bottle C
  5. 1 hour after that take 4 pills from bottle D
  6. Eat Breakfast
  7. 2 hours after eating take ABC supplement

That’s just the morning stuff.  Then add in detoxing treatments like epsom salt baths and coffee enemas.  And don’t forget to exercise too.  

Healing from Lyme Disease is a full-time job

After 3 different LLMD’s I was worse and decided I needed more care and a different approach so I went to the Fach Klinik in Germany.  You can read more about that here.

 

 

 

 

May is Lyme Disease Awareness Month Blog Post #15: Prevention Tips

We are half way thru Lyme Disease Awareness Month so let’s review prevention tips before moving on.  Remember,

PREVENTION IS THE ONLY CURE

According to the CDC you can easily treat Lyme Disease and patients are cured after a short course of antibiotics.  However, us patient know the truth.  Lyme is easy to get,  EXTREMELY difficult to treat and there is NO CURE.  Symptoms can go into remission but may come back later in life.


Before Going Outdoors

Protect yourself when you hike, camp, picnic or work in your garden


  1. Wear long pants tucked into high socks.
  2. Socks-no bare feet.
  3. Wear long sleeve shirts.
  4. Wear light color clothing so you can see ticks.
  5. Consider treating you clothing with repellant or buy pre-treated clothing
    • Purchase pre-treated clothing with Permethrin or buy permethrin spray to treat your own clothing.
    • Purchase Natural Sprays
    • Essential oils that repel insects. I make my own lotion with coconut oil/shea butter base and add oils.
      • citronella
      • eucalyptus
      • lemongrass
      • tea tree
      • peppermint
      • cypress
      • rose geranium
      • bergamot
      • lemon
      • Very Well
    • Wrist and ankle bands sprayed with repellant.

While Outdoors

  1. Don’t sit on rocks, branches or trees when you are outdoors
  2. Sit on a Insect Shield outdoor blanket.
  3. Do not go off the trails.
  4. Carry a tick remover or tweezers.
  5. Carry a baggy.

 


What to do before you go inside?

  1. Do tick checks
    • Check from head to toe
    • Use a sicky tape lint roller up and down you body.
    • Put clothes in hot dryer before going inside.
    • Shower off.
  2. Protect your pets
    • Talk to your veterinarian about tick medications
    • Brush off your dog after being outsideSticky_Lint_Roller_Cleaning_Tape

What to do if you get bit!

  1. Remove the tick
  2. SAVE THE TICK FOR TESTING – Free Testing
  3. Watch for a rash and take a photo for the doctor.
  4. Watch for flu-like symptoms.
  5. Visit a Lyme Literate MD for consultation.

tick removal poster

 

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.