And now... for Bartonella Symptoms

So, I'm really confident that I actually have Babesia, and I'm pretty sure I also have Bartonella.  For a fun look at Bartonella, I'm going to list out the symptoms as presented in the article, "TOUCHED BY LYME: A close look at six Lyme-related infections."

So, here we go:

Many people have Bartonella or Bartonella-like (BLO) infections in their bodies. They are perhaps the most abundant infections in people because many veterinarians say that 80 percent of all house cats and nearly 100 percent of all hunting cats carry Bartonella microbes. Fleas bite cats and infect them with the Bartonella-like organisms, which are then transmitted to humans when they get bitten by the flea. Bartonella and BLO infections are therefore probably the most common of the vector-borne Lyme disease co-infections.

People who have active Bartonella symptoms have much more pain than people who are manifesting predominantly Babesia-related symptoms. The first thing out of their mouths is usually, “You have to help me with my pain.” They have pain in their joints and the connective tissue around their joints. This joint pain will migrate to other areas of the body. So for instance, patients with active Bartonella might have knee pain, but just when they are about to go to the doctor for the pain, the pain will migrate to the left elbow. The hallmark symptom of Bartonella is sensitivity and tenderness on the bottom of the feet, especially the soles.

I have pain mainly in my hands.  Once or twice I've had pain in my toes, a few times I've had pain in my knees.  But I almost always have pain somewhere in my hands.  Most days it's in the right hand, sometimes the left, sometimes both.  The affected fingers and joints rotate.  Migratory joint pain is not typical of arthritis.  But it's very possible that it's symptomatic of Bartonella.

Generalized pain in the body, or pain that is sharp and severe, is often related to Bartonella. Bartonella can also cause headaches and ice pick-like pain. Both Babesia and Bartonella cause headaches, but Bartonella headaches are worse. A Babesia headache produces more weird sensations in the head and pressure in the head. People with active Babesia infections will say, “I don’t know if I’d really call what I have a headache. It’s more like a pressure in the head.” Babesia can cause migraines as can Bartonella, but Babesia migraines are generally less severe.  Bartonella prefers the occipital areas of the head; the back of the head and neck are generally painful. So pain is a dominant characteristic of Bartonella.

I have pain in my neck and shoulders.  Constant, irritating, muscle pain.  Some days it's really bad, some days it's just an irritation.  But constant muscle-soreness is a problem I've dealt with for the last two years.  And no, I'm not doing anything to account for it.  I'm not sleeping weird on my pillows, or lifting tons of weights.  If I do any activity that causes slight muscle-soreness, I have disproportionately bad muscle pain.  

I defintely had intense headaches last year when I hadn't started antibiotics yet.  I currently have more of the weird pressure and "almost headaches" that sound like they are more related to Babesia than Bartonella.  But I have a lot of pain in my neck, shoulders and also my hands that I think are very likely from a Bartonella infection.  

All of these slow-growing intracellular infections affect the brain but create different symptom patterns, according to which infection is dominant or most active. I see more depression in people with active Babesia but less variability of mood, whereas people with active Bartonella may be irritable and anxious but then “flip over” into depression. Many people with Bartonella infections are misdiagnosed as having bi-polar disorder due to their fluctuating moods; they can easily go from being angry and irritable to being depressed.

I honestly don't know if my memory trouble is more Babesia or Bartonella dominant.  I'm defintely more depressed than angry.  But in the description of Babesia, the symptoms of a dominant Babesia infection included anxiety and FEAR.  I have definitely struggled with anxiety and fear this year.  But also depressino.  So, I'll leave it up to wiser persons than myself to determine of my brain fog and moodiness is related more to Babesia or to Bartonella. 

Bartonella-like organisms can also stay on the surface of the organs and tissues and cause a wide array of symptoms. One such symptom is gastritis. In fact, most cases of gastritis that aren’t caused by Helicobacter pylori infections are often caused by Bartonella, which is the second-most common cause of this condition. It can irritate the stomach so that people lose their appetite and/or get heartburn.

Well, I've definitely had trouble with symptoms that sound like gastritis.  Of course, it could be the effect of months of antibiotics in my system that is causing so much trouble.  It could also be that all my symptoms of gastritis are caused by Bartonella.  I have had a lot of trouble with loss of appetite, heartburn and nausea.  Although the nausea started before the antibiotics, so, there's a good chance it's from the infection and is in fact a symptom of Bartonella.  

Bartonella can cause a low-level, relapsing sore throat. People with active infections will periodically awaken with sore throats and wonder if they are coming down with a cold, but then the sore throat will go away.

I have been waking up with the tiniest hint of a sore throat.  This is obviously not a very good time to be wondering if you are coming down with something.  I have wondered more than once, if I've caught covid-19.  It's a little bit stressful.  To say the least.  

Bartonella irritates the bladder and can cause frequent urination, interstitial cystitis, or other chronic inflammatory conditions of the urinary system.

I don't have other problems with this, but I do have pelvic pain that occurs randomly and it's completely unconnected to my period.  So that's fun.

Bartonella can also cause fevers, but for patients to be able to run a fever, they need to have a relatively functional immune system, so not everyone who has a Bartonella infection will get a fever. Yet people will often feel hot, as if they have a fever, but their body temperature may be low normal.

I did have a very low grade fever for approximately an hour.  (During covid this is not a fun thing to experience even briefly).  I do frequently feel as though I'm hot but I do not usually have a fever.  It feels like I'm constantly gaslighting myself. 

Bartonella can affect the eyes and cause conjunctivitis, or inflammation of the outermost layer of the eye, which results in irritated, dry red eyes, as well as other eye problems.

Bartonella cause more skin-related problems than the other infections. Red bands or stretch marks on the skin called striae are common, as are acne and other skin problems.

I don't really have trouble with my eyes.  I have been having trouble with acne.  I have also been having little red stretch marks appearing.  They aren't large or particularly frequent, but they are showing up.  

Bartonella lives in the liver and spleen where it inflames these organs and compromises their functioning. When the liver and spleen are inflamed, the filtering capacity of the blood is affected, resulting in thick blood. People with Bartonella may have slightly elevated liver enzymes on lab tests. For instance, the alanine aminotransferase (ALT) test score may be just outside of the normal range and high only intermittently. The inflammation that Bartonella causes in the liver and spleen can compromise the body’s detoxification system in a major way, though. When the spleen is compromised, the lymph glands may also become swollen, which then causes the lymph flow to become thick, sludgy and slow.

I have had lots of swollen lymph nodes throughout the last two years.  I've had the swollen lymph nodes noted by the doctor who didn't believe in the possibility of co-infections or post-treatment Lyme.  He kept asking me if I had a cold or whatnot.  

I'm less confident about this one.  But I would be completely unsurprised if I have both Babesia and Bartonella.  

For more on co-infections, here's the informative article called TOUCHED BY LYME: A close look at six Lyme-related infections, that I drew the symptoms from.  I highly suggest reading it if you have Lyme Disease or suspect you have Lyme Disease. 

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

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

We have a Winner, it's Co-infections!

It's like I walked into a disease wholesale store and couldn't decide what to come down with... so I looked at the cahsier and said, aw, what the hell, I'll have one of each.  

Test results last week:

West Nile, positive.

"But I don't believe that you have it," said the doctor.  "And if you did all you could do is wait to get better and rest a lot.  So we will run the test for co-infections"

Me: "Ok cool."

One week later...

Babesia positive FISH test.

Doctor:  "But we don't know that you have it because you don't get cold sweats at night," (I do have almost all the other symptoms currently)

"Let's do another test for West Nile Virus just to make sure..." says the doctor

Sure, why not?  I mean, we didn't trust the first test.  Let's just run another one we won't trust. 

How many tests do you need to run before you finally trust one of them?  We all know that testing for Lyme and co-infections is impossible and notoriously inaccurate.  So, at what point are you going to just treat me for the symptoms that I have instead of faffing about with more tests?

I'm extremely symptomatic for Babesia.  And it's really likely that I have Bartonella too.  I even have a positive for Babesia.  So, I'm not really sure what we're waiting for.  How many tests do you need to be convinved?  And why didn't we start with the convincing test?  Not run four others we don't trust.  

It's all so frustrating. 

So, the current theory is that I have Babesia and Bartonella, common co-infections with Lyme.  The reason that the antibiotics (doxycycline) helped but didn't make them go away was because Babesia and Bartonella are treated with different antibiotics, stronger ones, and Babesia also needs to be paired with an anti-parasitic.  So, that could explain why doxycycline helps with the symptoms when I'm on it, but doesn't make them go away.

But don't worry, I'm going to run another test for Babesia and a different test for Bartonella.  And just for kicks I'm going to run another test for West Nile Virus.  So, let's see what results we get this time. But it's looking like I'm going to be on the hunt for a new doctor very soon.  If anyone knows of a doctor in the San Diego area who knows how to treat Babesia, or other Lyme co-infections, I'm all ears.

Fun stuff over here!

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

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

Lyme with a side of Babesia

Sunset at La Jolla Shores tonight was lovely

Tonight as the rest of the world worried about and anxiously awaited the results of the US Presidential election, I was anxious about other results.  I got back my test results today.

Today I received a positive test result on a Babesia FISH test.  This doesn't surprise me in the least because I've looked at symptoms of Babesia and I was already fairly certain I had it.  

I'm hoping, that when I finally get to speak with the doctor on Thursday, I can finally start treating something that has been making me miserable for nearly two years now.  There is a small fear that this result won't be "trusted" either and I'm going to have to either keep searching for doctors or keep running more tests that aren't trusted.  If I may be so bold as to suggest that we all hope the doctors start listening and trusting us when we say what our symptoms are and that they find us all effective treatments for all that ails us.  Having Lyme disease and its associated co-infections is no laughing matter.  (Don't get me wrong, I laugh, but some days it's either that or cry, you know?  I'm hoping for a new diagnosis and treatment course that starts to make me feel better.  

I'm so tired of feeling so miserable.

If anyone happens to be reading this, I could probably use all the prayers and good thoughts sent my way.  

So I took myself to the beach tonight to be out in the breeze and hear the waves endlessly crashing.  I wanted to remember that even the two years I've been fighting all this, is a short amount of time.  At least two years is a short amount of time when you consider the gradual work of the waves eroding the cliffs and the shells crumbling into sand.  Lyme disease is a terribly miserable thing to deal with (co-infections included in this) but I need to remember that it will pass and that the time will soon be distant when I lived this chapter.  I need to focus on the long term and remember that everything will be ok in the end.  I can weather a few more years if I have to.  I need to stand firm like the waves, chipping away at the cliffs until I crumble them and am healthy once more.  I need to harness the strength of wind, blowing gently at times, changing directions, following what I must, but always eroding the cliffs one gust at a time.  Of course, I'd like to bring the whole Lyme cliff down in one terrible storm.  And yet, even if I don't, I'll make it out the other side.  

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

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

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

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 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 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

How to Find the Right Doctor for Lyme Disease

Finding the right doctor to treat your Lyme Disease is a serious problem and question.

The short answer is that you need a Lyme literate Doctor.

What is that?  That's a doctor that understands Lyme Disease and knows how to treat it.

It makes perfect sense when you think about it, but if you've never heard of a Lyme literate doctor how would you know you need one?  We live in a society where we think Doctors know everything.  Of course, we know there are specialists for really specific things, but we sort of think that our normal doctor can diagnose us and send us to a specialist.  Or at least know when to send us to a specialist.

Lyme gets a little bit more complex.  Lyme literate doctors are sort of specialists in Lyme.  But they aren't viewed or described that way.  Your normal doctor may completely overlook your symptoms or be unable to diagnose you with Lyme.  Some doctors don't believe in "post-treatment Lyme disease" or "chronic Lyme disease".  

You essentially have to be your own advocate.  If you're not better and the treatment isn't working you have to be vocal, tell the doctor, find a new one when your doctor or treatment isn't working.  It's all a lot of hard work, but you have to be a firm advocate for yourself or you won't get better.

But it can all be very overwhelming where do you start?

I don't have all the answers, and I won't pretend I do.  But I was struggling to find Lyme literate doctors in my area.  I looked on different websites, I searched for all kinds of doctors.  I didn't like the way most of the doctors I found sounded, that is, the philosophies they believed in. 

So I kept looking.  My previous doctor is just not an expert in Lyme.  He's a great doctor and I'm grateful that he thought to test for it and we diagnosed it before years of misery passed.  But we hit the limitation of his knowledge on how to treat Lyme.  He started to say things like "well, maybe you don't have Lyme and I think you need to see a specialist in arthritis."  That wasn't the answer I needed, I needed someone to treat the Lyme disease I have, or to help figure out if I have a co-infection that came with Lyme that I need to treat.  So I kept looking.

Email ILADS (the International Lyme and Associated Diseases Society)

One option is to email ILADS (the International Lyme and Associated Diseases Society) for a list of Lyme literate doctors in your area.  I emailed them at the following email address:

contact@ilads.org

I made the mistake of only asking for Lyme literate doctors in San Diego.  I should have asked for a list of a broader area or several different areas.  But it was a starting place.

They also sent the following information:

Then it's a question of essentially interviewing the doctors.  Call all of them, ask if they treat Lyme and all related diseases, ask if they treat until the symptoms are gone and anything else you've had trouble with before.  Ask them if they treat symptoms regardless of whether you get positive test results back.  (Not that testing isn't a wonderful tool, but Lyme Disease and its common co-infections are notoriously difficult to test for and you need someone to work with your symptoms, not rely solely on tests.)  If they don't believe in post treatment Lyme and that's what you're dealing with, don't go to them.  Keep asking questions until you find one that's willing to work with you, to keep digging, and more importantly to keep treating you until the symptoms are gone!

Lists of Lyme Literate Doctors

LymeDisease.org has a list of Lyme Literate Physicians.  There are a few other sites that I know of that have lists.  I haven't tried looking at other lists but I know this website has a list.  You do have to sign up for an account to get the list.  But you can create a FREE account that will give you access to the list of Lyme Literate Doctors (or LLD).  

I found Dr. #3, who I have high hopes for on this list.  I also found the people recommended by ILADS on this list.  The particular doctors recommended to me by ILADS weren't accepting new patients when I tried calling.  But Dr. #3 was on this list and seems to be wonderful.  So this is an option if you get stuck and overwhelmed.  At least it's a list to give you a place to start.  

It's your health and it's your life.  Don't settle.  Keep looking until you find the right one.  

Keep fighting.

For Other Posts about Lyme Disease see the following:

How Did I Get Lyme Disease?

So, I have Lyme Disease

Lyme Disease a List of Symptoms

Lyme Disease the Great Masquerader of Diseases

A Doctor who Listens, Hallelujah!

How Did I Get Lyme Disease?

Ok, so Lyme Disease to the best of my knowledge is transmitted only by tick bites.  But I never found a tick on my body, so how did I get Lyme Disease?

My story, or at least my best guess as to how I got Lyme Disease is this:

In December of 2018 I went to Rhode Island to visit my family.  While there I went to a cute little store in an outbuilding on someone's farm.  I wandered around and then went outside to look at all the animals.  They had donkeys, lamas, goats, chickens and an adorable farm dog.  

Well, I played with the farm dog and petted him.  And I'm fairly certain that this is where I got a tick bite and became infected with Lyme Disease and possibly other co-infections.  

Why do I say that?  

While I never found a tick or had a ring rash around a bite, I came home from this trip and start having flu-like symptoms a few weeks later.  I felt like I was constantly on the verge of coming down with the flu, but I never did.  My muscles ached, I had headaches, and I sort of expected to have the flu at any moment for about a month or maybe two.  But I also explained away the headaches and muscle aches as barometric pressure swings, or because I'd been doing something that made me sore and stiff.  

It wasn't until my hands started aching like I had suddenly developed arthritis that I knew something was really wrong.  This happened sometime around Feb-March of 2019.  I finally went into a doctor and we started the process of figuring out what was wrong.  

It took from March until October, after running tests for auto-immune diseases, and every arthritis test imaginable to end up thinking about testing for Lyme Disease.  Don't get me wrong I'm grateful he thought of it at all or I'd still not know what was wrong.  

Unfortunately we are a long way from done.  I'm waiting on test results from new blood tests to see if I have co-infections that I'm fighting too.  I wish it were sooner rather than later, but I'm still fighting. 

Do you have Lyme Disease?  How long did it take you to diagnose it?  

For Other Posts about Lyme Disease see the following:

How to Find the Right Doctor for Lyme Disease 

Lyme Disease a List of Symptoms

So, I have Lyme Disease

I Feel Like I'm Playing Lyme Roulette.

So, I have Lyme Disease

Ok, it's time that I start talking about a thing I'm constantly dealing with.  

I have Lyme Disease.

It's not that I'm ashamed to say it, or anything.  I sort of keep it to myself in most contexts because it seems inappropriate to just walk up to people and start talking about how miserable your body feels all the time.  Not least because of fear of covid-19 and the fact that I'm immuno-compromised because of Lyme Disease.  Even if we weren't living in a pandemic it seems wrong to just answer every "how are you?" with "Pretty miserable, thanks for asking."  But it is nonetheless true.  And it is something, like it or not, that is part of my ongoing reality.  So, I think it's finally time to start talking about it.

I don't have any illusions that I'm going to really make a difference for anyone with my discussion or posts of Lyme.  But, one of the things that I deal with currently is "brain fog" or confusion and memory troubles.  I try to laugh it off.  I'm just being extra "lymey" today I jokingly laugh at myself.  What other option do I have?  But it may in fact be helpful for me to write about it here as a sort of Lyme Journal.  Perhaps it'll help me keep track of more of my symptoms and if it helps anyone, that's great.   

If you don't want to read about Lyme Disease, I get it.  I'm sorry this topic isn't as random, and fun, as most of my other posts.  I will keep writing random and fun posts, but these Lyme posts are going to start figuring into my writing too.  Skip them over if you're not into it.  Ok, that said, here we go:

I have Lyme Disease.

I was finally diagnosed with Lyme Disease in October 2019. 

(I had several slight positives in several bands of the IGeneX Lyme test. - note it's not enough for the CDC to consider me a Lyme patient, but it's enough for several doctors to take it seriously and perhaps more importantly to begin treatment.)

Because it's hard to ever be certain you have Lyme Disease and not something else, I can't say too much for a certainty.  I have been diagnosed with Lyme, but it could be another infection or any number of other things.  I've been tested for mold poisoning, auto-immune diseases and arthritis (I don't have it and yet my hands are arthritic).  With the help of not one but two doctors, I am currently operating under the assumption that I have Lyme Disease and possibly another co-infection that we are still doing testing to identify.  Nonetheless, I will tell you the facts as I currently know them.  I'll amend anything as we go along and find out more.

So, I was diagnosed with Lyme in October of 2019.

But I have had Lyme Disease since December of 2018.  

It took nearly a year to find out what was wrong with me, and now it has been almost a year and I'm still fighting.  I still feel miserable.  So, in roughly six weeks I'll have been dealing with this for two years.  While I am hopeful that the most recent tests will give me a better path forward, I'm just tired of dealing with Lyme.  Mainly because it's a nightmare.

A multi-year nightmare.

I am lucky that I don't have it as severely as some people and I recognize that.  But I am really not well, and the thing with Lyme is that nobody really knows what is going on with Lyme disease, not science, not doctors, there are competing philosophies on Chronic Lyme disease and whether it even exists.  Even your friends and family, they don't really understand, or sympathize in some cases.  You don't look sick to them, so they don't know how bad it is for you.  

Anyway, I don't want to go on today.  I just wanted to make a start.  If you have Lyme Disease or a co-infection, or anything like it, I'm terribly sorry.  If you want to share your story with me, successes, or tearful tales, I'm here.  

Other Lyme Disease Posts:

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

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

Lyme with a side of Babesia

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