Do I have Lyme Disease or West Nile Virus? or a Co-infection?

The Lyme Saga continues...

Today I got test results back that had some very inconclusive and confusing results.  

I took tests to look for the antibodies of Lyme's main culprit, Borrelia burgdorferi, and also a few other things that may have explained all my symptoms.

My tests indicate:

No antibodies for Borrelia burgdorferi

No antibodies for any co-infections of Lyme (Bartonella and Babesia)

No Mycoplasma

Positive for West Nile Virus

The funny thing is that because these tests are so infamously wrong so often, my doctor doesn't believe them to be true.  I must say I agree with him in this case.  He says it's unlikely that West Nile Virus is the cause of my chronic Lyme symptoms because, while it shares many symptoms with chronic Lyme, it is not a chronic problem.  Usually, someone with West Nile has acute and severe symptoms, not chronic ones like mine.  On the off chance I do have West Nile Virus, the way to recover is to sleep a lot, drink a lot of liquids, generally boost the immune system (possibly take anti-viral supplements), and wait for your body to neutralize the virus.  

As far as the tests on Borrelia and Bartonella/Babesia, we don't trust those either.  Testing for antibodies is notoriously inconclusive.  You can get false positives and false negatives.  So, we are going to run tests for the organisms themselves and see what comes back.  

As of right now, I believe that I may have defeated the Borrelia, but I am still fighting off a co-infection that simply didn't show up on this set of tests.  

For more on co-infections, there's an informative article called TOUCHED BY LYME: A close look at six Lyme-related infections. 

For Other Posts about Lyme Disease see the following:

So, I have Lyme Disease

How to Find the Right Doctor for Lyme Disease

How can you be Certain you have LYME DISEASE?

Lyme Disease a List of Symptoms

Lyme Disease the Great Masquerader of Diseases

How Did I Get Lyme Disease?

Memory Struggles with Lyme

I Feel Like I'm Playing Lyme Roulette

Lyme with a side of Babesia

The Transitory Brilliance of Day Turning into Night

 

I love that moment between daytime and nighttime where the world has all the attractions of both, the transitory mystery of perfectly balanced opposites.  Color, and lingering warmth, and the solitude of cloaking darkness.  The gilding of the edges of the world made more exquisite as the light fades.  The world crosses the threshold from day to night in one moment, and I can never quite tell you which one, because I'm always so caught up in the wonder of the display.  I'm intoxicated by the shifting color, temperature and light.  It's drawn out in the most deliciously subtle way.  Then suddenly, it's night.  And I find myself sitting in nature's empty movie theater after all the credits have rolled and before the night puts on its show of stars.  I smile, and I gather my things and I walk off beneath the memory of something beautiful I have just witnessed, experienced.  It was there for all to see, just as any truly great spectacle, and yet, it was still somehow all my own. 

Let's Put Lyme Disease in Perspective with Covid-19

Lyme Disease is Under Reported, Under Treated and Under Funded.

It is widely believed that Lyme disease is under reported.  The CDC estimates there are 300,000 new Lyme cases every year, ten times the annual reported cases.  An article by the Bay Area Lyme Foundation sates that 2019 saw 400,000 new cases.  

This doesn't include all the misdiagnosed and undiagnosed cases every year.  And considering that 

Lyme Disease is actually present in all 50 US States, but 96% of the cases reported to the CDC are from only 13 states from the Northeast and Upper Midwest. 

An article titled Misdiagnosis of Lyme disease problematic has a number of interesting statistics: 

"Of 6,104 patients who responded to a 2015 survey, 61% said it took more than two years to receive a correct diagnosis. Only 21% reported being correctly diagnosed within six months of the onset of symptoms, the report showed. Almost half of respondents said their Lyme tests were delayed or denied because their physicians said the disease was not in their area."

If many doctors don't even test for Lyme disease because they don't believe it's present in their area, and misdiagnosis can lead more than half of those with Lyme disease on a wild goose chase, it's not a stretch to think that many more people have Lyme than even the 400,000 known cases every year.   

Eugene Shapiro, MD said in an article about Lyme's incidence rate that "Another striking number is that there were 3.4 million assays done for Lyme disease at six major national laboratories, clearly an underestimate of the number of tests done nationwide."

3.4 million tests done for Lyme at only six of our major laboratories.  How many tests are run throughout all our laboratories every year?  Now, he claims that Lyme disease is being over tested for.  But considering how poor the tests are and how long people wait to get a proper diagnosis, perhaps it's not being over tested.  And knowing how notoriously inconclusive Lyme Disease tests are, how many cases are there really?  

My suspicion is that the numbers are staggeringly larger than we even realize.  For instance, according to Bay Area Lyme our current diagnostic plans miss up to 60% of acute cases.  Just think how many cases we are missing in the end.

Now I promised you Covid-19 comparison and you shall have it.  

As of today, October 7th, the US has 7.7 million reported cases of Covid-19 and 215,849 thousand deaths.  I'm not in any way trying to say that this isn't horrible, but I'm trying to highlight the numbers for you.  In an article by John Hopkins it said that "researchers found that more than 63 percent of those treated for Lyme disease had at least one PTLDS-related diagnosis."  More than half of the people with Lyme show evidence of having Post Treatment Lyme Disease.  So if we have 400,000 new Lyme cases every year that's roughly 200,000 people every year who get Lyme and aren't getting better.  

Imagine if all the Covid-19 deaths we have seen this year were sudden and chronic illnesses instead.  We've all been following the devastating numbers of Covid-19 this year, but Lyme is never talked about.  People who suffer from Lyme struggle to even get a diagnosis or recognition that they are suffering.  

Like Covid-19, Lyme is not very well understood.  We don't have a great understanding of how it works, how to cure it.  If roughly half of the people who come down with Lyme end up with Chronic Lyme, we clearly aren't doing a good enough job treating it.  

Phyllis Mervine, the Founder and President of LymeDisease.org had this to say about Lyme "Like COVID-19 patients, people with Lyme need treatments now. Clinical trials are expensive and take too long, and our last one was 20 years ago. Also, Lyme disease research receives less federal funding than leprosy, which has 200 cases per year."

Covid-19 has shaken us and demanded prompt action which is completely warranted for the 215.8k deaths already, but Lyme disease gets no press, no funding and no support with roughly the same number of people, 200,000 people, becoming chronically ill every year.  Leprosy gets more funding for 200 cases a year than a disease that causes roughly 200,000 people every year to deal with chronic illness.  That's just absurd.  

In an article about post-treatment Lyme "Prevalence in 2020 is predicted to be higher than 2016, and may be as high as 1,944,189 (CI 1,619,988 to 2,304,147) cases."  This is a cumulative number of cases, but it's still a staggering number.  Nearly 2 million people in the US may have Chronic Lyme and not many doctors even believe it exists, let alone know how to treat it.

I think it's time that we start recognizing the incredible numbers and cost of Lyme Disease.  We can't let "medical politics" keep ignoring Lyme Disease and pretending that Chronic Lyme isn't a thing.  We must keep fighting for awareness and recognition and our health.

Reference materials:

https://www.lymedisease.org/mervine-comments-tbdwg-2/

https://www.smithsonianmag.com/smart-news/lyme-disease-is-ten-times-more-common-than-we-thought-1895064/#:~:text=Each%20year%2C%20more%20than%2030%2C000,than%20the%20yearly%20reported%20number.

https://www.health.harvard.edu/blog/lyme-disease-10-times-more-common-than-thought-201308206621

https://www.bayarealyme.org/about-lyme/lyme-disease-facts-statistics/

https://www.nurse.com/blog/2015/07/01/misdiagnosis-of-lyme-disease-problematic/

https://www.worldometers.info/coronavirus/country/us/

https://covid.cdc.gov/covid-data-tracker/#cases_casesinlast7days

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6480773/

https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease

https://www.jhsph.edu/news/news-releases/2015/lyme-disease-costs-more-than-one-billion-dollars-per-year-to-treat-study-finds.html

For Other Posts about Lyme Disease see the following:

So, I have Lyme Disease

How to Find the Right Doctor for Lyme Disease

How can you be Certain you have LYME DISEASE?

Lyme Disease a List of Symptoms

Lyme Disease the Great Masquerader of Diseases

How Did I Get Lyme Disease?

Memory Struggles with Lyme

I Feel Like I'm Playing Lyme Roulette

Lyme Disease the Great Masquerader of Diseases

Why is Lyme Disease the Great Masquerader?  This is because its symptoms are so wide and varied that it can easily be misdiagnosed as something else.  

There is a long list of diseases that Lyme disease shares similar symptoms with and can be misdiagnosed as.  

Someone with Lyme Disease may have misdiagnosed with the following:

• ADD
• Anxiety
• Arthritis (rheumatoid, reactive, infectious, juvenile, or osteo)
• Auto Immune disorders
• Bipolar disorder
• Chronic fatigue syndrome
• Depression
• Early Alzheimer’s disease
• Fibromyalgia
• Irritable bowel syndrome
• Lupus
• Multiple sclerosis
• Sleep disorders
• Thyroid disease
• Hypochondria
• Cellulitis 
• Pericarditis
• Mycoplasma
• West Nile Virus (I had a slight positive and was nearly suspected of having this virus)
• Covid-19

Yes! Even Covid-19.  

As someone who has Chronic Lyme, I can tell you that I was tested or treated for seven of these things before we even thought to look for Lyme.  I was being treated for Anxiety and Sleep disorders as though they were separate from Lyme Disease not a product of it.  (Yes I do also have anxiety that is separate from Lyme Disease, but this feels different, hits me differently.  Lyme anxiety is different)

And let me tell you, suddenly having ADD, as an adult who has never had it before, is a very interesting and unique experience.  

If you've been told you have one or more of these things and it doesn't address your health issues, or if you have no evidence of arthritis but still have migratory arthritic pain (like I did) and it's being ignored, or if your other random symptoms that can't be explained are being ignored, go find a new doctor.  Ask them if they think you should consider being tested for Lyme Disease, or it's related co-infections.  Don't settle for inadequate treatment.  Keep fighting!

Reference material:

https://www.amenclinics.com/blog/lyme-disease-great-masquerader/#:~:text=Along%20with%20physiological%20symptoms%20like,Impaired%20memory%20and%20speech%20functions

https://danielcameronmd.com/misdiagnosing-lyme-disease/

https://www.lymedisease.org/lyme-mistaken-for-covid19/

For Other Posts about Lyme Disease see the following:

So, I have Lyme Disease

How to Find the Right Doctor for Lyme Disease

How can you be Certain you have LYME DISEASE?

Lyme Disease a List of Symptoms

How Did I Get Lyme Disease?

Memory Struggles with Lyme

I Feel Like I'm Playing Lyme Roulette

Lyme Disease a List of Symptoms

Now, it seems that everybody has a different experience with Lyme Disease.  So, you may have some or all of these, or very few but to a different level of severity.

I don't in any way intend this to be diagnostic.  It's just that I had a hard time trying to find a comprehensive list of symptoms when I was looking up information.  So, I have attempted to compile a lot of different symptom lists into one long one.  Again, I'm not a doctor, I'm just trying to share information and make it easier to find.  If you think you might have Lyme Disease go talk to a doctor now.  If not, I hope this is informative for those who have no idea what range of symptoms Lyme can give a person.

Also, if I've missed things and duplicated them, I'm sorry.  Lyme brain is really bothering me this week.  I'll try to fix it later.  But thank you for your patience in the meantime.  

Possible symptoms of Lyme Disease:

• rash (roughly 30% of people don't get this apparently)
• Fever
• Chills
• Fatigue
• Body Aches
• Headaches
• Neck Stiffness
• Swollen Lymph Nodes
• Erythema migrans (rash)
• Joint pain (migratory joint pain is fairly unique to Lyme Disease I believe)
• Neurological problems
• meningitis
• Bell's palsy
• numbness or weakness in limbs
• impaired muscle movement
• Heart problems, such as an irregular heartbeat
• Eye inflammation
• Liver inflammation (hepatitis)
• Chronic joint inflammation (Lyme arthritis)
• Severe fatigue
• Severe headaches
• Severe neck stiffness
• Sleep issues
• Cognitive defects such as impaired memory
• ADD (no really, it's a thing that can happen if you have Lyme Disease)
• so it's not actually normal ADD, just like the arthritis isn't normal arthritis, but you can absolutely get ADD symptoms with the way Lyme affects your brain
• Impaired attention
• Impaired Focus
• Impaired Concentration
• Impaired Judgement and Impulse Control
• Impaired Memory
• Impaired Speech Functions
• Disorganization and getting lost
• Poor problem-solving and decision making abilities
• Slower mental processing speed
• Symptoms similar to Dementia and Alzheirmer's Disease
• Cognitive defects, such as impaired memory

If this list doesn't leave you terrified of ticks I'm not sure what will.  I highly suggest using repellants anytime you're going to be somewhere you could encounter ticks.  

Ok, as I believe we have mentioned other places, the CDC sort of has it's own criteria for what counts as Lyme Disease.  Some people believe the CDC's narrow criteria and testing is seriously underreporting the number of Lyme Disease cases.  The speculation is that the count may in fact be ten times higher than the CDC says.  Nevertheless, I'm trying to provide information and be thorough.  Below is a list of what the CDC considers to be early and late symptoms of Lyme Disease.

According to the CDC these are early symptoms of Lyme:

• Fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes may occur in the absence of rash
• Erythema migrans (EM) rash 
• Occurs in approximately 70 to 80 percent of infected persons
• Begins at the site of a tick bite after a delay of 3 to 30 days (average is about 7 days)
• Expands gradually over several days reaching up to 12 inches or more (30 cm) across
• May feel warm to the touch but is rarely itchy or painful
• Sometimes clears as it enlarges, resulting in a target or “bull’s-eye” appearance
• May appear on any area of the body
• Does not always appear as a “classic” erythema migrans rash

According to the CDC these are later symptoms or symptoms that come with Chronic Lyme Disease:

• Severe headaches and neck stiffness
• Additional EM rashes on other areas of the body
• Facial palsy (loss of muscle tone or droop on one or both sides of the face)
• Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
• Intermittent pain in tendons, muscles, joints, and bones
• Heart palpitations or an irregular heart beat (Lyme carditis)
• Episodes of dizziness or shortness of breath
• Inflammation of the brain and spinal cord
• Nerve pain
• Shooting pains, numbness, or tingling in the hands or feet

Believe me, if you do not have Lyme Disease, you do not want it.  Whether you have Lyme Disease according to the CDC or not, whether you have more symptoms than they say come with it or not, Lyme is extremely unpleasant.  And my case isn't even considered "that bad" as I've been told multiple times.  (Which isn't particularly reassuring, but anyway).  

Be safe.  Wear repellent when you go out in places that might have ticks.  Yes they can be smelly and irritating, but it's much better to have to smell repellent while hiking than have to deal with Lyme Disease.    

If you already have Lyme Disease, then keep fighting.  And if you want to talk to someone else about it, I'm here. 

References:

https://www.amenclinics.com/blog/lyme-disease-great-masquerader/#:~:text=Along%20with%20physiological%20symptoms%20like,Impaired%20memory%20and%20speech%20functions

https://www.cdc.gov/lyme/signs_symptoms/index.html

https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651

https://www.lymedisease.org/lyme-basics/lyme-disease/symptoms/

https://www.webmd.com/rheumatoid-arthritis/arthritis-lyme-disease

For Other Posts about Lyme Disease see the following:

How to Find the Right Doctor for Lyme Disease 

So, I have Lyme Disease

How can you be Certain you have LYME DISEASE?

How Did I Get Lyme Disease?

Memory Struggles with Lyme

I Feel Like I'm Playing Lyme Roulette

Lyme Disease the Great Masquerader of Diseases

Memory Struggles with Lyme

One of the difficult things for me with Lyme Disease is the way it has been affecting my memory.  It comes and goes so I can't say I always forget things or rely on what capabilities I will have.

On and off I can't think of the word to say for a thing.  Sometimes I can see the word in my head, like I'm reading it in my mind, but I can't physically say it.  

I forget what I'm going to say mid way through a sentence.  I forget what I was trying to write down by the time the paper and pen are ready to write it.  

Then I'll be fine and remember everything for a few weeks.  Then I seem to lose all ability to use language in a normal manner.  I get frustratedly tongue-tied.  I use hand gestures and get nothing productive to come out of my mouth.

A week or two ago I forgot how to tie a bow.  Three days later I suddenly had my brain recall the information and I felt so stupid.  

Yesterday I tried to braid my hair and I couldn't.  I couldn't keep track of where my fingers were and I couldn't remember what to do next with them.  

I sat on the living room floor and cried.  I've been able to braid my hair since elementary school.  And now at 33 I can't do it anymore because of the way that Lyme Disease impacts my memory.  

Sometimes it honestly scares me.  I'm not sure I can tell you for a certainty what I'm capable of anymore.  It could all come and go as randomly and quickly as my symptoms. 

Have you ever dealt with something like this?

For Other Posts about Lyme Disease see the following:

How to Find the Right Doctor for Lyme Disease 

How Did I Get Lyme Disease?

So, I have Lyme Disease

Lyme Disease a List of Symptoms

I'm a, er, um, Professional Applier?

So I'm unemployed.  It's not exactly a new experience for me, unfortunately.  I'm a bit more of a risk taker.  Which means I save lots of money for the moment that I up and leave a job to travel for a few months before I find a new one.  I am not afraid to take risks in starting new careers or in leaving them. 

And so, here we are again.  Unemployed.  I mean, technically I'm not.  Technically I'm "working" for a company as a freelance writer.  But they haven't wanted any content in the last few months.  And I was working for a corporate events company until Covid-19 came along and sort of ruined that.  And you're never really unemployed when you're a freelancer, you're just out of money.  So here we are.  It's still ugly outside and we are all quarantined in CA.

But it's October and people have given up being isolated because they are lonely and bored.  I see pictures of parties with lots of alcohol involved on social media and group gatherings have spread out in people's yards, but they are happening nonetheless.  

So recently I attended a small family gathering, set up outside, with people being socially distant and I was asked by multiple people what I'm doing these days.  And even though people know that lots of businesses are suffering and lots of people have lost jobs, somehow it never seems acceptable to just answer the question so what do you do these days with "I'm unemployed".  It doesn't matter how true it is.  It makes people uncomfortable.  They want you to politely say something boring like "oh I work from home for a financial firm" or something.  They don't want to have to contemplate how close we all are to an unsettled future where they could possibly be unemployed too.  Or maybe they just don't know what to say and feel guilty that they have good fortune while you do not.  Regardless, when it comes up that you no longer have a job it makes people uncomfortable.  

I tried to deflect all this awkwardness by making out my unemployed state into a paradise of time to do whatever I want with.  I talked about writing and doing art.  This helped ease the conversation back into better comfort.  But I think we can do better than this and not end up in this situation at all.  

So, I've decided I must get trickstery and come up with a better way to say the same thing.  Ok, so what are they asking?  They're asking about my job.  Well, rather than saying I don't have one, I should explain what I do as an unemployed person, in a way that sounds like a proper job.

So, if we take occupation to mean my job, or an activity that denotes my role in society...

I'm a Professional Applier.

I spend hours and hours scouring for jobs and applying to them.  My role is to be a job candidate in a stack of papers on hundreds of HR desks.  

I know, I know, I am being facetious.  But honestly, I do spend hours writing cover letters and sending out applications to jobs.  And I really must get a job soon or I'll die of boredom, frustration and misery in equal doses, all specifically from doing more job applications than is good for a human.  

Truly, if I spend all day, and it takes all this time and effort, applying to jobs is a 9 to 5 job in itself.  And I'm still working on it!  Doesn't that make me a Professional Applier?

I rather think it does.  So there you have it, I do have a job.  My job is to irritate every HR person in my region with an application.  Maybe I should call myself a Business Grade Irritant?  Sounds important, right?  I think I'll give Professional Applier a whirl and see if it needs to be tweaked a little for maximum social effect.  

I Feel like I'm Playing Lyme Roulette

For me, one of the biggest problems with trying to treat or just deal with Lyme Disease on a daily basis, is knowing what is actually being caused by Lyme disease.

I get headaches, and I get muscle stiffness.  But is that because I'm dehydrated, or is it a symptom of Lyme.  The symptoms of Lyme can be cyclical, which means they can come and go.  It's a bit of a nightmare really.  So, if the doctor asks if I am still having headaches, and I haven't had a horrible one in a few days, am I done?  Or is it just going to come back again?  Who knows?!

So, it's hard to know if your headache or your muscle soreness, or your fatigue, or your anxiety is related to Lyme or not.  Should I take an aspirin for this headache or is it pointless?  Should I take bath in Epsom salts for my muscles?  Or is it pointless?  

I think the reality for me is that the majority of my present, passing and cyclical afflictions are Lyme related or caused.  With only one being something else.  It's like playing Russian roulette with symptoms.  One of these might be something you should pay attention to.  Do you want to pull the trigger and find out?  Or do you call it all Lyme and miss something else going on .

Essentially Lyme Disease is a joy.  It feels like high stakes gambling with your health.   

For Other Posts about Lyme Disease see the following:

How to Find the Right Doctor for Lyme Disease 

How Did I Get Lyme Disease?

So, I have Lyme Disease

Lyme Disease a List of Symptoms

Lyme Disease the Great Masquerader of Diseases

How can you be Certain you have LYME DISEASE?

 The short answer is that you can't.

There are many tests that give false results.  You can't always rule it out or in.  

Some tests are definitely better than others.  As far as I know the best test for Lyme Disease is the IGeneX Lyme test.  It was created by the independent private lab because they recognized the need for better lyme tests, as have many other private labs.  

IGeneX is really quite expensive, unfortunately.  This may be due to the fact that the CDC has not promoted better testing for Lyme since a conference in the 90's.  That was roughly 30 years ago.  Science has progressed a great deal in that time and yet the testing recommended by the CDC has not improved in that time.  This has meant that private labs have taken on the research and development on new tests for lyme on their own.  It's no wonder that the cost is then seen in the tests.   But apparently IGeneX has come out with a simpler and less expensive version of the Lyme test.  

Of course that means there is some controversy.  There is some concern from the CDC, who do not recommend the IGeneX test, that there are too many false positives with the IGeneX Lyme test.  The counter argument being that the poor testing often misses Lyme Disease.  The CDC guidelines recommend two tests for the same reasons as they critique the IGeneX test.  

The CDC Guidelines for Lyme Disease testing recommend taking two tests.  The guidelines call for a test called Elisa to be run.  But Elisa so famously and frequently gives false positives that the guidelines call for a second test, the Western Blot test.

As you can see, even testing Lyme Disease is a nightmare, let alone diagnosing it.  So I see four main problems with finding out if you have Lyme Disease:

1. Symptoms "masquerade" as many other things
2. Testing is not always conclusive or accurate
3. The Politicizing of Lyme Disease 
4. Co-infections

Most ticks have more than one infection.  So, if you do have Lyme Disease the likelihood that you have a co-infection is also really high.  It's possible that the symptoms you are fighting are from two separate infections.  Isn't that fun?

You have to work with a doctor who is willing to keep digging and working with your symptoms and ABOVE ALL a doctor who is willing to LISTEN.

Lyme Disease is hard to diagnose, hard to get accurate testing results on, and hard to get rid of.  You need your doctor to work with you.  You need your doctor to listen.  You need your doctor to believe you when you say what you're dealing with.  And you need your doctor to keep treating you while you still have symptoms, even if you "should be better because you've had antibiotics"

IF you think you have Lyme Disease, keep an open mind about co-infections

If your doctor isn't listening to you, find a new one.

References:

https://www.lymedisease.org/members/lyme-times/2018-fall-news/igenex-immunoblots-lyme-disease-tests/

https://www.prnewswire.com/news-releases/igenex-introduces-cost-effective-tests-for-lyme-disease-and-tbrf-300962015.html

https://www.nytimes.com/2005/08/23/health/policy/unproved-lyme-disease-tests-prompt-warnings.html

For Other Posts about Lyme Disease see the following:

How to Find the Right Doctor for Lyme Disease 

How Did I Get Lyme Disease?

So, I have Lyme Disease

Lyme Disease a List of Symptoms

Lyme Disease the Great Masquerader of Diseases