The cost of Lyme treatment

I've been wanting to post this for a while to give those of you who are just embarking on this journey some idea of what this is all going to cost you.

First of all, things may be different between the U.S. and Canada with regard to private insurance.  I have read, for instance, that insurance companies in the U.S. will not pay for more than a month's worth of antibiotics because of the IDSA guidelines, but I have not found that to be the case with my insurance company in Canada.

Here is a breakdown of what you can expect.

Please note:  These are the prices I paid in 2011.  I know for a fact that some fees have gone up since then, especially for the LLMDs.

1. IGeneX tests - This will be one of your first expenses, perhaps before you even see a Lyme-literate medical doctor (LLMD).  The tests will cost you anywhere from $200 - $1200 depending on what tests you order.  The most important test for you to get is the Western Blot (both the IgM and IgG). These 2 tests will cost about $100 each.  I chose to do the basic Lyme panel, all the co-infections, and the CD57 test, so my cost was around $1200.  But don't feel that you have to do all of that!  Some LLMDs don't even recommend spending the money on the co-infection panel because there are so many strains of these infections, but the tests only cover one or two strains.  In all likelihood, the test will come back with a negative result for co-infections even if you are infected.  Let your LLMD give you a clinical diagnosis for those.  Sending your blood samples to California via FedEx will cost around $75.  (See my IGeneX Lab tab for detailed instructions about sending your blood to this lab.)

2. The initial consult with your Lyme-literate MD - This will cost you anywhere from $400 to $800.  The New York LLMDs are more expensive for whatever reason.  The NY LLMD that I saw charged $600 for the initial consult, whereas the Michigan LLMD that I go to charged $400.

3. Regular appointments with your LLMD - In my personal experience, regular follow-up appointments have been anywhere from $125 - $225 depending on how much time you spend with the physician.  However, the fees will vary from doctor to doctor.  Recently, someone told me that a doctor in Seattle charges $400 an hour!  So, do your research.  Some doctors will charge for e-mails, so keep that in mind.  At the start of your treatment, you are bound to have some questions, and e-mails will be inevitable.  Another thing to check out is how often your physician will need to see you.  Mine wanted to see me in person every 6 weeks.  Others require a visit in person every 6 months with a phone consult at the 3 month mark.

 

4. Travel expenses - Hotel, gas, meals.  Don't forget to factor these things in. 

5. Medications - Medications could cost up to $300 per month or more, depending on the medication.  Some antibiotics are cheap because they have been around forever.  Others are much more expensive.  The treatment for babesia, a co-infection of Lyme, is quite expensive.  Thankfully, my private insurance covered my meds right from the start.  I still consider that a miracle and I'm so grateful.

6. Supplements - They probably cost me about $100 - $200 per month.  Some supplements are cheap, while others (e.g. good probiotics, alpha lipoic acid, Omega 3) can be quite expensive.  Shop around.  With some vitamins, your basic drug store variety is fine, but with other supplements, you will want to pay for a better quality pharmaceutical grade supplement.  You'll need to research this and ask your doctor about it.

7. Other "paramedical" appointments:

Naturopath – Insurance covers some, so I pay $35 every month or two.

Counselling - After insurance coverage, it cost $90 - $180 every month depending on how often I went.  Very expensive, but very necessary!  Find a counsellor who BELIEVES you regarding your Lyme diagnosis, and who will teach you how to deal with everything emotionally.
Massage therapy - I never did this, but it is helpful for many people.

 

I know that when you start to add this all up, you might wonder how on Earth you will manage this.  Take it one step at a time.  Start with the IGeneX test and the diagnosis by an LLMD.  You're looking at about $800 to get these 2 things done.  Then, go from there and try to figure out how you might fit the treatment into your budget.  You may need to cut some things out of that budget for a while:  no new clothes, no vacations, no entertainment, no meals out, etc.  You may be surprised at ways you can cut back to come up with the funds.

 

If you need to go a step further, you may want to consider finding a way to borrow about $10 000 - $15 000 which would hopefully cover your entire treatment (provided that your meds are paid for by insurance).  Could you borrow from your line of credit?  Would it be possible to sell one of your cars?  These are just thoughts.  I don't want to presume to know and understand anyone's personal financial situation.

 

But all this to say.....it WILL require some sacrifices!  But it's for your health, and without that, you have very little.  This is a situation that will hopefully end at a certain point in time.  For me, it will have been a year and a half of financial pressure by the time I'm done treatment, but at least I'm now back to work and able to make a living and contribute to the family finances once again.

This is an investment in your future.

P.S. We're currently trying to have my Lyme expenses recognized by the Canada Revenue Agency for a medical deduction on our income tax.  All of our receipts have been submitted, and now we're waiting.  If we succeed, I will consider this a small victory for Lyme sufferers.  Stay tuned....

(Update:  Check out this post to find out what happened with the Canada Revenue Agency.  Good news!) 

Dr. Murakami: A successful tour in southwestern Ontario

How wonderful that many of Dr. Murakami's Lyme disease presentations were well-attended.  His presentation in Kingston had 175 attendees.  Impressive!  My city only had about 60 from what I could judge, and although I was disappointed with this turn-out, I need to look at the big picture.  Hundreds of Ontarians were better educated about Lyme Disease after last week.  Thank you, Dr. Murakami!

I took notes during the presentation, and I've been wanting to post them since the presentation last week.  Our session lasted for almost 3 1/2 hours, with individuals asking questions at the end about their own situations.

Notes from Dr. Murakami's Presentation

Dr. Murakami began his presentation with a little history about his family, why he decided to pursue medicine, and how his medical career began as a GP in a small town in B.C.  It was a very interesting story which helped us to better understand who Dr. Murakami is, and why he's doing what he's doing for the Lyme community.

Here are some jot notes I took about Lyme disease:

- The IDSA is deeply entrenched in their ideas, and this is why the 2 sides are unable to talk.  The IDSA sees chronic Lyme disease as a 'syndrome', not an 'infection'.
- Yet, peer-reviewed studies have proven that it is an infection!
- To say that Lyme can be cured with 30 days of antibiotics is a lie.
- Lyme has similiarities to syphilis; they are both spirochetes.  They invade every organ of the body.
- Doctors don't recognize that it is a multi-system illness.  What do you do if you have one of those family doctors who says, "One symptom/complaint per visit"?
- Lyme is more resistant than syphilis.
- One moose in B.C. had 200 000 ticks on it!
- The nymphal (baby) stage of the tick is the size of a dot.
- The rash from a nymph bite is so small you wouldn't even notice it.
- In one study, one tick layed 10 000 eggs.
- When Lyme statistics are stated, multiply that by 10 to come up with the actual number.  This is because Lyme testing is so inaccurate.
- Lyme cysts can be frozen and later thawed and injected into mice who will develop Lyme disease.
- The increase of Lyme is due to global warming.
- B.C. was the last place in North America to get Lyme.
- Very few illnesses give you a perfectly circular rash that goes out from the point of the bite.
- After a bite, Dr. Murakami recommends 3 weeks of antibiotics to kill the spirochetes and eggs (cysts).
- The rash for Ehrlichiosis looks more like a dot, not a bulls-eye.
- Manitoba Ministry of Health is the only province that recognizes that Lyme is a 'clinical diagnosis', and that longer term antibiotics may be necessary. 
- There is a difference between what the government says and what the College of Physicians there says.
- Normally, IgM antibioties indicate an acute infection, while IgG antibodies indicate a chronic infection.  However, in chronic Lyme disease, continual re-infection keeps the IgM antibodies up beyond what we would think is the acute phase.
- The PCR culture by Advanced Labs costs $600.  This is the test that Dr. Burrascano is working on.
- President George W. Bush had a Lyme bulls-eye rash.  Dr. Murakami wonders if it has developed into neuroborreliosis due to lack of adequate treatment.
- If you have gone untreated for 5 years, you will have permanent cysts and damage.
- In IV therapy, there is a big difference in improvement depending on the length of treatment - 1 month VS. 3 months.  However, doctors here won't do 3 months.
- An LLMD in the U.S. has had favourable results in her studies of the herbs Banderol and Samento.

My questions during Q&A

Question:  If I re-do my IgM Western Blot, should I see a reduction in antibodies if I have been on treatment for a while?
Answser:  Yes, that can happen.

Question: I have read that when you're done your treatment, it is useful to pulse some doxycycline one or two days per month to keep the bacterial load down.  What do you think?
Answer:  No, this is not useful at all.  That small amount of antibiotic would have no effect on the bacteria.

Question:  How can I prevent relapse after my treatment is done?
Answer:  It all depends on the strain of borrelia you had.  Some are more resistant.  You need to do the logical things to help your immune system:  healthy eating, exercise, etc.  Don't eat sugar....all bacteria/viruses feed on sugar.

Finally, here are Dr. Murakami's thoughts which I copied from his Facebook page:

Six successful meetings in Ontario done and 2 more to go in Toronto and a special case to be presented at Mount Sinai hospital. I will enjoy the vew on the VIA rail this afternoon. Thank you all for contacts and encouragement. There were Political MP representatives, MD and NDs at the Ottawa meeting yesterday. A heart felt thanks to all those who attended and helped with donations and to all the organizers who made all this possible. I cannot get over the announcement of the NDs privileges to prescibe medications in this province (March 2013). I have given one talk at the Naturopathic Medical School in Toronto and annually at the Boucher Naturopathic School and they are all on board to learn about Lyme disease unlike my peers.  My philosophy is to teach them about evidence based medications and even educate on a one to one basis by phone.

Don't miss this opportunity!

Dr. Murakami

If you live in Southwestern Ontario, I hope you will take the opportunity to hear Dr. Murakami's lecture as he travels across our region.  I am looking forward to it, and I hope that he may be able to answer some questions I have about end of treatment.  Here is the information on the Lyme disease Association of Ontario's website:

The LDAO is pleased to announce they will be hosting six presentations by Dr. Ernie Murakami, Canada's foremost medical expert on Lyme disease, in September 2012.

As President and Founder of the Murakami Centre for Lyme Research, Education and Assistance Society, Dr. Murakami's educational efforts continue across the nation.  He is fulfilling his dream to bring Lyme awareness to new heights and to educate the general public on the very real threat of contracting Lyme in Canada and what we need to do to change the way Lyme is viewed in our country.

The schedule of events is as follows:

Sept. 14 - Fort Erie

Sept. 15 - Burlington

Sept. 17 - London

Sept. 18 - Brampton

Sept. 20 - Kingston

Sept. 26 - Toronto

For times, locations, and maps, click here.

See you there!
For more information on Dr. Murakami and Lyme disease, visit his website Dr. E. Murakami Centre for Lyme.

Dear doctor

Here are letters I'd love to send to some of the doctors I saw in 2011.  Of course, I never will.  But writing them was cathartic, and a reminder of what I was up against in getting proper treatment for Lyme disease.

Dear Emergency Room Doctor #2,

I'm sure you don't remember me.  I was an ER patient in February of 2011. 

The night I came with my husband to the ER was one of the worst nights of my life.  I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms.  My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'. 

You listened to me, but couldn't piece together all of my symptoms.  You did arrange for an immediate CT scan, though, which revealed nothing abnormal.  Your resident gave me a neurological exam.  You then pulled my husband aside and asked him if I was doing illegal drugs.  He told you NO because, of course, I was NOT!!!  Why did you feel the need, just a short time later, to ask him this same question again?  Why did you not believe his answer?  Did my symptoms appear to you to be some kind of drug withdrawal symptom?  Was I acting like a drug addict?   

You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify. 

I left the ER with no answers, and two prescriptions:  Ativan and Imovane.  I was to take them together to help me fall asleep.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula 

Dear Emergency Room Doctor #3

I'm sure you don't remember me.  I was an ER patient in March of 2011.

My husband drove me to the ER because I was so physically ill and overcome with anxiety.  Feelings of dread were just washing over me, and I couldn't control it.  I knew I needed help.

My body was literally shaking as I lay on the examining table.  I just couldn't control the shaking or my emotions.

I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.

You really were a very kind doctor, and I appreciated the time you took with me.  You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.

I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula

Dear Doctor of Psychiatry,

Perhaps you remember me, who knows?  I was a patient of yours in the spring of 2011.

I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.

You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill.  How my tender glands and low-grade fevers factor into this, I do not know.

I talked to you about my fears, and my belief that I had Lyme disease.  You listened, but refused to consider it. 

When I finally received the positive blood test results, I was so elated to finally know what was wrong with me!  I came to my appointment so excited to tell you that I had an answer!

But you didn't want to hear anything about it.

You cut me off.  You scolded me.  You told me that you did not need a lecture on Lyme disease.  You told me to stop treating your office like a medical clinic.  You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.

What was the problem exactly?  Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me?  Were you insulted that I challenged your diagnosis?  It was never my intention to sound as though I was second-guessing what you were telling me.  But I had to dig deeper because I just felt so physically ill.  I was truly expecting you to be thrilled for me that I had a positive Lyme blood test.  Instead, you reprimanded me.  I will never forget how you treated me that day.

That was obviously the end of our doctor-patient relationship. 

I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good.  One by one, the symptoms started to fade away, and I have regained my strength.  Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula

Dear Neurologist #1,

I'm sure you don't remember me.  I was your patient in January of 2011.

I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep.  I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'.  You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.

Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to.  Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me.  Your answer was 'no'.  You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.

I showed you my positive Igenex test results, and you were very skeptical.  You glanced at them, and told me that you would consider it a 'negative' result.  Why would you say it was negative, when Igenex called it positive?  I have several positive bands on the Western blot.  Do you have any expertise in reading Lyme Western blots? 

I never saw you again.  What more could you do for me?

I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S.  I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely yours,
Paula

Dear Neurologist #2

I'm sure you don't remember me.  I had an appointment with you in March of 2011.

I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep.  I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI.  You couldn't find any reason for the symptoms I was suffering from.  But you said I looked 'anxious'.  True enough.  But anxiety was NOT the cause of my symptoms.

When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.

When I asked if this could be the result of Lyme disease, you quickly dismissed that idea.  "No, Lyme disease wouldn't cause this."

Well, in fact, it can.  Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely,
Paula

Dear Endocrinologist,

I'm sure you don't remember me.  I came to see you in March of 2011.

I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.

You were very kind, and you spent a lot of time with me.  You said that there was nothing endocrine-related that would cause symptoms like this.  But you told me to keep searching and to leave no stone unturned.  And that is what I did.  Thank you for that advice.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely yours,
Paula

Dear Infectious Disease Specialist,

I'm sure you don't remember me.  I had an appointment with you in May of 2011.

I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document.  I had also received a positive Lyme blood test from Igenex.  I was so hopeful that I would find some answers at this appointment and finally receive treatment.

You spent a lot of time with me, listened patiently, and spoke thoughtfully.  However, you did not believe I had Lyme disease despite my positive blood test.  You felt that it was improbable, and said that our medical system works on probability.  You believed that it was more likely that my symptoms were caused by anxiety.  I'm still not sure how tender glands and low-grade fevers factor into anxiety.  I'm also concerned about the 'probability factor' in diagnosing someone.  This would overlook quite a number of people who have rare conditions, would it not?  I'd rather be treated as an individual, not a statistic.

I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease.  Your response was, "So?  I have a cottage next to that park."  Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park?  I'm not following the logic.

You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam.  You said that they make their tests more sensitive.  Isn't sensitive actually better?  Have you researched this lab?  Do you know their track record?  Do you know the results of government inspections on the lab?  If you looked into it, I'm sure you would be satisfied with their reputation.

I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++).  Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them.  And here I was, with a triple positive for band 31 - a very strong reaction.  And I've never had a Lyme vaccine.  But you just ignored all of this valuable information.

You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'.  I thank you for that, truly!  Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a herxheimer reaction on day 3 of the treatment.  The herx lasted for 6 days.  It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later.  So thank you.

You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all.  And yet I was left to suffer.

I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later.  Almost all of my symptoms have disappeared.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test. 

Sincerely yours,
Paula