Struggling with Lyme disease

A personal blog about nightshades, grains, dairy, Lyme Disease… oh my!
Also see my listing of Nightshades

Creating a National Advisory Committee for Lyme disease?

September10

For those of you following the topic of Lyme disease, did you know that the Senate is debating creating a National Advisory Committee for Lyme disease?  From what I can tell, it’s basically a committee to try to get both sides of the Lyme controversy to play nice together.

I think it’s a shame that we have to use tax payers’ money to create a committee to try to make these two sides of the issue play nice together.  sigh.  But, I suppose if it’s the only way to lead to better diagnosis, and treatment, of Lyme disease in the future I’m for it.

Senator Blumenthal of Connecticut has a page on his website where people can enter their stories of Lyme disease for public record:  http://www.blumenthal.senate.gov/lyme-disease So, if you have a Lyme story, feel free to pop on over there.

Oh, and if you scroll to just after where you can enter your story, you’ll see the article about the issue.

Response to questions regarding Lyme and tick borne diseases

September4

I received a few questions via a comment on one of my posts and my response was really too long to put in a little comment box, so I’m going to turn my response into a post instead.  Okay, here are the original questions:

“Hi, I just wanted to ask you a question about Bartonella and Lyme disease and Babesioses. Are all of these the same thing? I go back to my doctor this month and I have Lupus, MS and other things that I have been to over 100′s of doctors for help on. Nothing helps, of course, but do I ask the doctor to test my blood for these? Can it be detected from blood test? I hope you can help me. Thank you, Michele”

Okay, I’ll start with the first question: Are all of these the same thing?
Answer:  Not technically, no.  They are different kinds of bacteria that ticks (and other blood sucking critters) can carry and transmit to humans and animals.  There’s a whole slew of things that they carry and researchers are discovering more and more strains of them as time goes on.  You typically need different medications to kill off the different kinds of bacteria.

Next question: do I ask the doctor to test my blood for these? Can it be detected from blood test?
Answer:  There are 3 tests for Lyme (Borrelia).  The first one is called the ELISA test and is the typical test a regular doctor will have you take.  For most of us, this test was pretty much useless as it only tests one strain, B-31.  I think there are like 13 strains of Borrelia found so far.  Most of the people I’ve met so far came back with a negative ELISA tests at which point the doctors say “you don’t have Lyme” and then it’s dismissed completely.  ugh.

Also, if they ask you if you’ve had a bullseye rash, and you say “No”, then they say “then you don’t have Lyme”…. then smile, nod, and find a doctor who knows what they are talking about.  A whole bunch of us don’t remember ever having a rash.  And, you could have had one on your back where you couldn’t see it or even up under your hair.  You would never know.

The next test is called the Western Blot.  It tests for an IgG response as well as an IgM response.  The IgG is useful for a new infection whereas the IgM is useful if you’ve had it for a long time.  Here’s an example of my IgM Western Blot results:

The pluses on the right indicate a positive result.  The IND indicates that they found something but it wasn’t very strong.  Most Lyme doctors will consider those positive as well.  Unfortunately, you can also get false negatives on this test as well.  So, you’re back to a clinical diagnosis.

There’s a third test which is very new and it actually attempts to culture the Lyme spirochetes from a sample of your blood.  The problem with this falls to those people who have had the disease a long time and the bacteria has settled into your muscles and joints.  If they are hiding there, they won’t be in your blood for them to culture from.

For Babesiosis, I took a test called Babesia Microti IFA.  It came back negative.
I also took a test called the Babesia FISH test.  It was also negative.
I also took a test for Ehrlichiosis, it also came back negative.
I also took a test called A. Phagocytophilum IFA to test for Anaplasmosis. Negative as well.
And, I took a test called the Bartonella Henselae test.  Also negative.

All of these tests can also have false negatives.  I spent $920 on my testing.

More on testing here:  http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/108294

So, now what?  There’s no reliable testing, so doctors now have to rely on a clinical diagnosis instead.  This means that they listen to all of your symptoms and try to figure out if is seems like you have them or not.  And, to make it even worse, a lot of the symptoms overlap so it seems like doctors are taking a stab in the dark with each antibiotic they try.  The hardest part is finding a doctor willing to listen to all of your symptoms and think out of the typical box that the CDC and IDSA have put them in.  Which leads me to:

The POLITICS of tick borne illnesses

If you look back up at my IgM test results and see at the top that it says IGENEX POSITIVE and then beneath that it says CDC NEGATIVE.  That means that by the standards set by the Center for Disease Control I’m considered negative for Lyme.  But, the lab that did my bloodwork says I’m positive.

You’ve now put yourself right in the middle of a big huge debate between the two sides of the coin when it comes to this topic.  One side of the coin is the IDSA (Infectious Diseases Society of America) and the CDC (Center for Disease Control).  They believe that 21 days of Doxycycline (an antibiotic) is sufficient to treat Lyme and that if you still have symptoms later it’s either damage from the disease or it’s something else.

The other side of the coin is ILADS (International Lyme and Associated Diseases Society) and many patients who feel they have chronic Lyme.  This side feels the testing is unreliable and that 21 days is not nearly enough plus most people tend to have more than one bacteria.

Then there are the poor Canadians who feel these infected ticks somehow stop at the border and that there is no Lyme in Canada.  Whole different topic.

So, what do I suggest?

Okay, so now that you’re completely overwhelmed, what do I suggest?

1. What the video “Under Our Skin”.  Here’s a link:  http://www.hulu.com/watch/268761.  It’s kind of long (an hour and 45 minutes), so carve out a chunk of time to watch it.  It also focuses on the most extreme cases.  But I think a ton of us are sitting at the “I don’t feel well, but I’m still functional” stage.

2.  You HAVE to find a Lyme literate doctor.  Not just a doctor who has heard of it, but one that has successfully treated cases of Lyme.  If you’re short on cash, look out for those doctors who sell their own supplements/vitamins.  At one point I was spending $500 per month on supplements (not including the prescribed medications) because they convinced me I needed them.

So, how do you find a doctor?  I suggest going to the LymeNet website (http://flash.lymenet.org/ubb/ultimatebb.php/forum/2) in their “Seeking a Doctor” area of their message board.  You then request a doctor by state.

WARNING:  They don’t necessarily know of GOOD doctors in your state, just ones that people have suggested themselves, but there’s no good way to know if they are going to help you enough or not.

So, after you have the first list of doctors, then see if you can locate a Lyme support group for your state, or a state near yours and see if they have a list of suggested doctors.

Take these two lists and see if you can find common ones between the two. Then see if you can Google them and find more info.  You will most likely NOT find much information linking them to Lyme disease.  The reason for that is because some of the Lyme doctors had their licenses suspended for going against the posted guidelines for treating Lyme.  So, to avoid the witch hunt, we’re all very hush-hush about the doctors we see.  Some doctors are no longer taking new Lyme patients.  I found that out when I started calling for appointments.  You’ve suddenly become a pariah to doctors because of the danger you represent to their license.  It’s a shame, really… just think of the information we could all share!

If you have the money, completely ignore all other Lyme doctors and go see Dr. Jemsek in Washington DC.  Here’s his website:  http://www.jemsekspecialty.com/ A lot of us are ending up there eventually because other doctors just aren’t knowledgeable enough to treat tough cases.  He cured Mandy Moore from the Under Our Skin movie I mentioned above.  That’s amazing!  I haven’t gone there myself because I just can’t afford to.

3.  Remember that you do NOT have to tell your Pharmacists what you’re being treated for.  Most people I’ve run into have said not to mention it.  Side step the issue if you have to.

4.  If you’re not seeing results, or don’t feel like the doctor you choose is working for you, don’t be afraid to find a different doctor.  I’ve now hopped to a new doctor in hopes they can help me and this one is out of state.  Takes me about 5 hours to drive there.

Poor Man’s Disease … Rich Man’s Cure

And, to top it all off, most insurance won’t cover these Lyme literate doctor visits.  It’s going to come right out of your pocket.  It won’t cover supplements.  It will cover some antibiotics, though.

On a positive note, though, they are building a lodge in Gilman, Wisconsin, called “The William D. Geiser & Dr. Randy Ceaglske Lyme Disease Retreat” that provides housing for displaced or homeless Lyme patients.  Also totally amazing!   The resort doesn’t have a website yet but here’s a link to a tiny bit more info:  http://www.wisconsinlyme.net/2012/07/the-william-d-geiser-lyme-away-lodge-is.html

Funny YouTube video about gluten free diets

August31

If you’ve ever tried to follow a gluten free diet, you might find this video humorous  :-)

http://youtu.be/k9QbC41oQRo

It’s called “One Grain More”.

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Going to start treatment for Bartonella

August30

I had my visit with the new doctor last Tuesday.  I left at 5:00am in the morning in order to get there in time and I was almost late.  ugh!  On a positive note, I didn’t need to get gas until I got home and I still could have driven another 70 miles.  I love my Prius  :-)

Okay, so, after seeing this doctor, she thinks we should treat for Bartonella which completely went with what I was thinking when I went in there.  I’ve started anti-fungals first (Nystatin, Diflucan) and then I’ll start the first antibiotic next week.  Then I’ll add the second antibiotic a week after that.  My fingers are crossed that treatment will help this time.  I think most doctors treat bartonella last, so I was happy to hear that she looked at my symptoms and examined me and said bartonella first.

I wish I could get my money refunded for all of the past treatments that did nothing.  sigh.  Just think of all the money I would have now!  I was gathering my things into a plastic bin to take with to see this doctor and I had a whole plastic bag full of empty prescription bottles.  Reminded me of that scene in the movie “Under Our Skin” about Lyme disease where it showed one man emptying all of his empty pill bottles into a huge pile.  He said he spent hundreds of thousands of dollars on treatments that didn’t work.

I was more prepared for my appointment than I thought I was going in to the appointment.  If I have any advice for you it would be to keep journals of all of your pains and weirdness every day.  Also make note of what you eat and drink.  Because I had been doing that, I was able to go back to early 2011 and read my reaction to an antibiotic that I was given for bladder infection.  I remembered “not tolerating it” but going back to read it made me realize that I was actually Herxing on it.  (A herx is a die-off reaction when you kill off a bug)  This lead me to look into what that drug would affect and Bartonella showed up on the list.  Yay me for writing it down!

Here’s a link to my post about keeping a journal:  http://nightshadejournal.com/2010/11/tip-start-your-own-food-and-activity-journal/

Lyme disease co-infection: Bartonellosis Symptoms

August22

From:  http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Also See:  Borreliosis (Lyme Disease),  Babesiosis

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called “Cat Scratch Fever.”

Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats).

Bartonella can also be transmitted by ticks that transmit Lyme Disease.  In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is “Bartonella-Like Organism” (BLO) that is yet to be fully identified.  While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.

Common symptoms of bartonellosis include:

___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of “coming down with the flu or a virus”

___Sweats, often morning or late afternoon (sometimes at night) – often described as “thick” or “sticky” in nature

___Headaches, especially frontal (often confused with sinus) or on top of head

___Eye symptoms including episodes of blurred vision, red eyes, dry eyes

___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity – so-called hyperacusis)

___Sore throats (recurring)

___Swollen glands, especially neck and under arms

___Anxiety and worry attacks; others perceive as “very anxious”

___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

___Poor sleep (especially difficulty falling asleep); poor sleep quality

___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

___Muscle pains especially the calves; may be twitching and cramping also

___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

___Tremors and/or muscle twitching

___Heart palpitations and strange chest pains

___Episodes of breathlessness

___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

___Gastrointestinal symptoms, abdominal pain and acid reflux

___Shin bone pain and tenderness

Lyme disease co-infection: Babesiosis Symptoms

August22

From:  http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Also See:  Borreliosis (Lyme Disease),  Bartonellosis

Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.

As with other tick borne infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Fatigue and often excessive sleepiness

___High fever at onset of illness

___Night sweats that are often drenching and profuse

___Depression

___Decreased appetite and/or nausea

___anxiety/panic (more common with Bartonella)

___Lymph gland swelling (more common with Bartonella and Lyme)

___Arthralgias (joint pain, more common with Lyme and Bartonella)

___Myalgia  (muscle pain, especially the large muscles of the legs, quads, buttocks, etc.)

___Drenching sweats

___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)

___Emotional lability

___Depression

___Dark urine

___Splenomegaly (enlargement of the spleen)

___Hepatosplenomegaly (enlargement of both the liver (hepatomegaly) and the spleen)

___Dizziness

___Nausea and vomiting

___Cough

___Dyspnea (Shortness of breath, breathlessness, air hunger, and/or cough)

___Fever

___Chills

___Jaundice (yellowish pigmentation of the skin)

___Malaise (a feeling of general discomfort or uneasiness, of being “out of sorts”)

___Bleeding tendencies, bruising

___Thrombocytopenia (decrease of platelets in blood)

___Hemoglobinuria (in which the oxygen transport protein hemoglobin is found in abnormally high concentrations in the urine)

___Hyperesthesia (abnormal increase in sensitivity to stimuli of the sense: sound, taste, touch)

___Pulmonary edema (fluid accumulation in the air spaces and parenchyma of the lungs)

___Neurological symptoms often described as “dizzy, tipsy, and spaciness,” similar to a sensation of “floating” or “walking off the top of a mountain onto a cloud”

___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)

___Anorexia

Lyme disease symptoms (Borreliosis)

August22

(From:  http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386)

Also See:   BabesiosisBartonellosis

Lyme disease (Borreliosis) is the most common and fastest-growing vector-borne infection in the United States. Lyme is in every state of the US, even Hawaii (as well as in many other countries). You can catch Lyme, and other infections (viral, bacterial, and protozoal), from several species of ticks, not just the most publicized Deer tick.  These ticks are more commonly spread by small rodents, not just deer.  So, if you think you don’t have Lyme in your area because you don’t have deer, you’re wrong.

You can contract Lyme as soon as the tick is attached, not just after the commonly publicized 24 hours. Nymphal (and adult) Deer ticks are a common transmitter of Lyme Disease, as they are so small they are very difficult to detect and remove before attachment; they are the size of the period at the end of this sentence. Adult Deer Ticks are not much larger, and can appear to be a speck of dirt or a dark freckle.

Some co-infections like RMSF can be contracted from simply touching the tick or its fluids or excrement. Always handle ticks with a “tick removal kit” (like this one: http://www.lyme.org/tickkit/tickremovalkit.html ), which can be purchased in many drugstores or found online, OR with good tweezers and a steady hand, making sure to remove the head without smashing the tick.

If at all possible, save the tick in an airtight container, and send it to be analyzed by a Tick-Borne-Disease specializing lab.

Below is a sample of the many possible symptoms of Lyme disease. The first symptoms can start immediately after a tick bite, or they can first appear weeks, months, and in some cases, even years later.

Symptoms generally relapse and remit, meaning that they can come and go. One hour, day, week, or month, you can be feeling sick, then the next you’re feeling better for a while, and so on.

You can have one symptom or a spectrum of symptoms – some may not manifest until the infection spreads to particular tissues, particularly the CNS, but it is interesting to see how it can mimic other ailments (dissemination to CNS can occur in as little as 12-48 hours, as observed in some animal studies).

Lyme Disease Symptoms (Partial List – there are many other possible symptoms)

___Unexplained fevers, sweats, chills, or flushing

___Flu-like symptoms or malaise

___Fatigue, tiredness, poor stamina

___Unexplained hair loss

___Swollen or painful glands/lymph nodes

___Sore throat

___Headache

___Rash – either bulls-eye or other forms. Can vary in form, color, and number, and appear in areas other than tick bite. Less than 50% of confirmed Lyme cases report remembering a rash. A bulls-eye rash from a tick bite is DIAGNOSTIC for Lyme Disease.

___Irritable bladder or bladder dysfunction; Interstitial Cystitis

___Upset stomach, GERD, or acid reflux

___Change in bowel function – constipation, diarrhea

___”Sick all the time” – seem to catch every illness that comes around, or old infections seem to resurface (e.g. Eppstein Barr)

___Disturbed sleep – too much, too little, early awakening

___Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis, Bell’s Palsy)

___Lightheadedness, wooziness, syncope (fainting or near-fainting)

___Increased motion sickness, vertigo, poor balance, or change in gait

___Pain, stiffness, and/or swelling of the joints, neck, or back, traveling or localized

___Tendon and ligament pain or stiffness

___Neck creeks and cracks, neck stiffness, neck pain

___Muscle pain or cramps, traveling or localized

___Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity, loss of hearing

___Jaw pain or stiffness

___Twitching or tics of the face or other muscles

___Tingling, numbness, burning or stabbing sensations, shooting pains; areas of skin sore to the slightest touch; sensations of hot or cold

___Muscle spasms; limb or head jerks

___Difficulty swallowing, tight throat

___Tremor

___Eyes/Vision: double, blurry, increased floaters, light sensitivity, pain, uveitis

___Heart palpitations, chest pain, pulse skips, heart block, heart murmur, or valve prolapse

___Shortness of breath, air hunger, cough, painful lungs

___Chest pain or rib soreness, costochondritis

___Mood swings, irritability, depression, bipolar disorder

___Unexplained menstrual irregularity or increased PMS symptoms

___Unexplained milk production, breast pain

___Sexual dysfunction or loss of libido

___Testicular pain/pelvic pain

___Unexplained weight change – loss or gain

___Confusion, difficulty in thinking

___Difficulty with concentration, reading

___Forgetfulness, poor short term memory

___Disorientation: getting lost, going to wrong places

___Difficulty with speech or writing, difficulty with word-finding

___Exaggerated symptoms or worse hangover from alcohol

___New food sensitivities or allergies

___Postural Orthostatic Tachycardia Syndrome (POTS)

___Neurally-Mediated Hypotension (NMH)

Symptoms that can be found in disseminated Lyme Disease (called Disseminated late-stage Lyme Disease, or Neuroborreliosis) can generally appear anywhere from several days after infection, to many years later:

___Seizures

___Autism, ADHD, OCD

___MS-like Lesions in brain and/or spinal cord on MRI

___Paralysis

___Dementia

___Psychosis

___Auditory and visual hallucinations

Lyme symptoms are systemic, or multi-systemic. Lyme can sometimes be the cause of, or cause sets of symptoms that can be misdiagnosed as:

___Fibromyalgia (FMS)

___Chronic Fatigue Syndrome (CFS)

___Lupus

___Rheumatoid Arthritis (RA)

___Parkinson’s

___Multiple Sclerosis (MS)

___Autism

___Alzheimer’s

___Reynaud’s Syndrome

___Amyotrophic Lateral Sclerosis (ALS)

___IBS (Irritable Bowel Syndrome)

___Ulcerative Colitis

___Chron’s Disease

___and many, many others.

For a more complete, however not exhaustive, listing of possible symptoms, with supporting references from Medical studies, please see this pdf file:

http://www.lymeinfo.net/medical/LDSymptoms.pdf

Staring in the general direction of things

August21

And another new symptom lately… staring the general direction of something but not actually looking at it.  This happens a lot when I’m driving – scary, huh?  I’ll be looking straight ahead at traffic and then my focus would shift towards me just slightly so that I’m not really looking at the car in front of me.  I can’t see the details of it, and I’m not looking right at it, but I’m focused on it like a fly to a light.  I’m aware it’s there and it’s all I’m really thinking about, but I’m not really looking at it.  These are moments when I’m not as alert as I should be.

Starting to question whether I should be driving at all.  My scales are starting to shift towards unemployment (see earlier post).  Panicking some more!

What would I do without my second brain?

August21

Just the other day my daughter asked if I had a different cell phone before I had my current iPhone.  I scrunched my face in thought and then turned to my significant other and asked him if I had.  He kind of stared at me for a second and then said that I did have a different cell phone before this one.  So, then I turned to my daughter and said “Yup, guess so!”  What would I do without my second brain?  :-)

For those of you who are just tuning in, my tick borne illnesses cause memory issues.  This was a prime example of this.  I’m only 43, my memory shouldn’t be that bad yet.  I can now understand that look of extreme thought that used to be on my grandmother’s face.  She had Alzheimers.  When you would ask her a question she would think really hard about what you said.  I get that same look on my face now.  Scary.

Lovely new symptom… bugs? nope.

August21

Well, I have acquired a lovely new symptom… feels like a bug crawling along my skin.  It’s not the “OMG I’m just crawling with bugs” kind of thing.  It’s like a fly lands on your head and shifts around a bit.  It’s really strange.  First I thought I had a spider on my shin and I would swipe at it.  Then I would feel it again shortly afterwards, finally look down and nothing is there.  I felt it on my head today.  Lasts only a few seconds or so, then goes away.  Then comes back a while later.

When I really think about how it feels it’s like a nerve or a muscle spasming (is that a word?) so fast that it feels like something crawling on you.  Like a buzzing.  Really weird!

My new doctor appointment is next Tuesday.  So, I’m spending my time trying to organize all of my notes and get my thoughts in order.  With my brain on vacation, I need all the time I can get to get it all down.  I also have a cheat sheet of my notes.  I’m running out of steam, though, in my organization efforts.  I’m in a phase where I don’t want to move or think at all.  Stupid disease!

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