Still Searching

I have been treating Lyme disease aggressively for the past 18 months and going to the same doctor who is a LLMD (Lyme literate medical doctor) in a neighboring state. I think this doctor has treated me with all the tools he has in his tool belt. He has put me on many of the latest protocols that are used by some of the best LLMD’s on the east coast. Currently I feel that we are kind of stuck and he doesn’t know how to help me. He has suggested that I try some natural treatments like blood ozone therapy and high dose IV vitamin C therapy. Both are very expensive and I have not found enough success stories of people who have used these treatments and have gotten better. In my opinion it is a huge financial gamble to try either one of these at this point. If I could find testimonials of Lyme patients who have had success I would be much more willing to give them a try.

The last 8 month I have been on an intensive protocol that has been very successful for many Lyme patients and most see big improvements at the end of the treatment switching from IV antibiotics to oral antibiotics for maintenance. I was not so lucky.

This has led me to search out another avenue and I have decided to make the investment (and it is large investment) to fly to California and see Dr Harris (one of the leading Lyme doctors in the world) to get his opinion on treatment for me. Many people outside the Lyme community do not realize that most Lyme treatment is not covered by health insurance and certainly not office visits and special labs that are required. Many of us Lyme patients have spent an incredible amount of money on treatment in hopes of recovering. Unfortunately when you are so sick that thinking about getting through the day is almost too much you will do ANYTHING to feel better.

I am really looking forward to seeing if there are new options for my treatment. I will share anything new that I learn from this trip with you in upcoming posts. I feel like sharing information is one of the key ways of improving treatment.  I am so hopeful that this will be the turning point for me. HOPE ultimately is what keeps me going.

I wish you well,

Heather

lyme hope

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Reason To Hope- Someday

We all need a reason to hope no matter where we are in our lives. I do think that when you are at a place that would be considered your greatest challenge you reexamine your reason to hope and you hold onto it.

For those of us who are sick with Lyme or other chronic illnesses we often feel like the sun went down around us. Someone wise once said to Turn Your Dark Yesterday’s Into Bright Tomorrows! I think having a reason to hope helps you do just that. Tomorrow might not literally be tomorrow but it will be someday!

Someday I hope to not have to force myself to eat but will once again enjoy the pleasures of food.

Someday i will have energy to be up all day without needing to lay down.

Someday I will have a reignited deep passion burning in my soul and a long lost spark will be re-lit.

Someday I will feel like this disease has not taken away more than I had to give.

Someday I will make new goals that will include exploring, traveling, and venturing past my current boundaries.

Someday my dreams will expand beyond just being well again.

My someday might not tomorrow or the next day, maybe not next year or the year after that but it will be SOMEDAY!

I need that reason to hope! I will hold on! I will defiantly continue to fall down but I know my someday will pick me up.

Until my someday comes or maybe even when I get to someday I will find inspiration in music. This song inspired me to write this post. It touched me on a deep level that spoke to my soul.

Three months down, Three to go…

I have been on that latest treatment protocol for a little over three months now. The protocol is for 6 months. At the halfway mark I was really hopeful that I would start to see some results even if they were small, heck I’d settle for tiny. Unfortunately that has not been the case. It seems that each month gets harder and harder.

I have really come to dread each of the weeks in the 4 week cycle for different reasons.

Week one brings nausea and vomiting especially in the morning, incredible fatigue (more than usual and I never thought that was possible) and a feeling like I am slowly dying.

Week two, which is that harshest of all the weeks, continues the overwhelming feeling of nausea and vomiting, fatigue, and the feeling that I am being poisoned. I guess in all actuality that is what is happening to my body. The more cycles that I go through the more this intense this feeling becomes. Joint pain usually is not as bothersome this week but it is still there.

Week three, which goes after the co-infections mostly, is difficult but in different ways. The nausea gets a little more manageable and the vomiting decreases slightly. The fatigue is more mild as well, meaning I am not sleeping half the day away then the full night as well. I can survive this week with a couple of hour naps during the day and then an early bedtime. The joint pain is starting to get intense towards the end of this week.

Week four, which I am the week I am off all antibiotics, gives me a bigger reprieve from the nausea. The main complaint for this week is the excruciating joint pain, especially in my neck, hips, and knees. This is the week that I feel like the bacteria and parasites are seriously attacking my body! This all makes sense because the philosophy behind the pulsing therapy is to fight against the active bacteria and parasites for the first three weeks in hopes of killing them off. The fourth week  is supposed to trick the ones that survived and are lying dormant to come out and basically attack me again without giving them time to multiply before starting the cycle all over again.

Here is a link to an article that supports pulsing therapy based on research:

http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

In all honesty treating Lyme disease and co-infections is still a guessing game for doctors. There is such limited funds for research that there is no sure-fire cure. The best that I hope for is to someday reach a place that I consider to be remission. This is like rolling a dice right now with treatment. There are success stories out there but there are more stories of people continuing to be sick and decline in health. I am not a pessimist and I try to be optimistic but at this stage I am truly frightened. June marks one year of heavy antibiotic treatment for me and 10 of the past months I have had a PICC line to deliver many of the drugs directly to my heart.

I don’t know what is ahead for me come September at the end of this protocol. I am hoping by then to have some notable improvements!

No matter what the outcome I will continue to fight these ugly diseases. I WILL NOT GIVE UP! I know that I will continue to fall down and am very thankful for the people in my life that help me get back up, whether that be emotionally or even physically. This is defiantly not something that one can tackle on their own.

I continue to keep talking about tick borne disease because it is a worldwide epidemic. Millions of people are suffering with this just like me. Many people are continuing to be sick and do not realize that tick borne disease are the cause.  I have had the pleasure of talking to a new friend recently who suspects that she has Lyme disease. She has all the classic symptoms. Through hearing her story and sharing mine we had so many similarities. One of the key things that I shared with her is that yes are stories are somewhat different but overall all of us suffering from these disease are the same and our stories are not unique.

I share my story, struggles, and treatment plan to help other people understand that they are not alone. Suicide is the number one killer with those of us who suffer from tick borne disease. This is very serious and very sad. Devastating pain that is unrelenting is sometimes unbearable. If you are thinking that this is something that you no longer can handle please talk to someone!

I keep saying that out of this suffering must come something good! I continue to meet people who are very sick and suspect that they have Lyme disease. I try to be a place of support and resources for them. I have found great encouragement in the local support  group that I have started. It is imperative to surround yourself with others who are battling the same illness.

As the journey continues so will my updates.

Be well my friends,

Heather

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Full List of Symptoms for Lyme & Co-Infections

Not to keep preaching about this but have you considered Lyme and co-infections. Here is the master list the symptoms:
AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE

Abnormal sensitivity to hot or cold

Allergies (nasal, other; new, increased or worsening) Canker sores (frequent)

Chills and/or shakes when hungry (may occur instead of feeling hungry) Cold hands and feet

Extreme fatigue after minimal exertion

Feeling hot or cold often

Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills

Hair loss (alopecia)

Herpes simplex or shingles rash

Increased susceptibility to infections

Low-grade fevers

Low blood pressure (below 110/70)

Low body temperature (below 97.5)

Lymph nodes painful, swollen (in neck; under arms) Night sweats (not related to menopause or fever) Orthostatic Intolerance (neurally mediated hypotension) Reactive hypoglycemia and insulin resistance

Thirst, increased

Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C)

Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto’s thyroiditis)
CARDIOPULMONARY/RESPIRATORY/CIRCULATORY

Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations; dysrhythmia)

Cough

Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion Heart attack

Heart palpitations

Heart pounds so hard it shakes body, bed

Pulse skips

Serious rhythm disturbances of heart

Sighing, frequent, not related to mental/emotional state Stroke

Vasculitis
CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC

Abnormal CAT, MRI and/or SPECT scans Alcohol intolerance

Aseptic meningitis

“Brainfog”; inability to think clearly Difficulty moving tongue to speak Diminished or absent reflexes

Fainting or blackouts; feeling like you might faint

Headaches (frequent, severe, recurring)

Hearing fluctuations (sounds fade then return)

Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV) Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)

Libido (decreased) Light-headedness, feeling spaced-out Migraine headaches

Muscle twitching

Noise intolerance

Paralysis or severe weakness of limb

Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities Photosensitivity

Radiculitis

Seizures; seizure-like episodes

Sensory alterations (hyper- or hyposensitivity) – smell, taste, hearing (noise intolerance) Severe muscle weakness

Syncope (fainting)

Tinnitus (ringing/noises in one or both ears)

Touch or weight of clothing on or against body causes discomfort or pain

Tremors, trembling
COGNITIVE FUNCTION

Becoming lost in familiar locations when driving

Difficulty with simple calculations (e.g., balancing checkbook)

Difficulty expressing ideas in words

Difficulty moving your mouth to speak

Difficulty making decisions

Difficulty following directions while driving

Difficulty remembering names of objects

Difficulty remembering names of people

Difficulty recognizing faces

Difficulty following simple written instructions

Difficulty following complicated written instructions

Difficulty following simple oral (spoken) instructions

Difficulty following complicated oral (spoken) instructions

Difficulty integrating information (putting ideas together to form a complete picture or concept) Difficulty putting tasks or things in proper sequence

Difficulty paying attention

Difficulty following a conversation when background noise is present

Difficulty making and/or retrieving memories (long/short-term memory deficits)

Difficulty understanding what you read

Easily distracted during a task

Feeling too disoriented to drive

Forgetting how to do routine things

Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)

Forgetting how to get to familiar places

Impaired ability to concentrate

Losing your train of thought in the middle of a sentence

Losing track in the middle of a task (remembering what to do next)

Poor judgment

Switching left and right

Slowed and/or slurred speech

Stuttering; stammering

Transposition (reversal) of numbers, words and/or letters when you speak and/or speak Word-finding difficulty

Using the wrong word
DIGESTIVE/HEPATIC

Bloating; intestinal gas

Decreased appetite

Digestive chemicals (acid, enzymes) reduced or absent Esophageal reflux; heartburn

Frequent constipation

Frequent diarrhea

Food cravings (especially carbohydrates, sweets) Food/Substance intolerance

IBS

Liver function impaired; mild abnormalities

Increased appetite

Nausea

Spleen tender or enlarged

Stomach ache, cramps

Vomiting

Weight gain or loss
EQUILIBRIUM/PERCEPTION

Bite your cheeks or tongue frequently

Bump into things frequently

Difficulty discriminating printed matter despite proper vision correction

Distances (difficulty judging when driving; when putting things down on surfaces) Dizziness or vertigo

Dropping things frequently

Dysequilibrium (balance problems)

Impaired coordination

Loss of balance when standing with eyes closed

Perception (not quite seeing what you are looking at)

Some patterns (stripes, checks) cause dizziness

Spatial disorientation

Staggering gait (clumsy walking)

Words on printed page appear to jump off page or disappear when staring at them
EYES/VISION

Acuity changes not related to prescription changes Blind spots

Blurred vision

Conjunctivitis

Diminished visual acuity in absence of actual vision change Drooping eyelid

Double vision

Eye pain

Flashes of light perceived peripherally Optic neuritis or atrophy

Oscillopsia (image jiggles) Prescription changes more frequently Pressure sensation behind eyes

Red and/or tearing eyes

Retinal damage

Slowed accommodation (switching focus from far to near, near to far)

Spots or floaters not related to migraines Swelling around eyes

Uveitis and/or iritis

Wandering or lazy eye
HEAD/NECK/MOUTH

Bell’s palsy (facial paralysis, one or both sides) Bruxism (grinding/clenching teeth)

Canker sores

Dizziness when you turn your head or move Dry chronic cough

Dry eyes, nose and mouth (sicca syndrome) Pain in ears, palate, gums

Periodontal disease

Prickling pain along skin of jaw

Problems swallowing, chewing

Runny nose in absence of cold, allergies Sinus infections

Sore spot on the top of your head Temperomandibular Joint Syndrome (TMJ) Unexplained toothaches

Xerostoma (dry mouth)
MUSCULOSKELETAL

Arthritic pain that migrates from joint to joint Carpal tunnel syndrome

Frozen shoulder

Intermittent joint swelling

Joint aches (arthralgia)

Joint pain, without redness or swelling Loss of tone

“Lumpy, bumpy” long muscles

Morning stiffness

Muscle aches (myalgia)

Muscle pain, stiffness, weakness

Pyriform muscle syndrome

Reduced range of motion

Stiff neck

Writing causes pain in hand, arm shoulder
PAIN SYMPTOMS

Abdominal pain

Chest pain

Generalized pain

Shooting or stabbing pains

Painful tender points (FMS: 11 out of 18 tender points)
PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS

Abrupt/Unpredictable mood swings Anxiety or fear for no obvious reason Appetite increase/decrease

Decreased self-esteem

Depression or depressed mood

Feeling helpless and/or hopeless

Feeling worthless

Frequent crying for no reason

Helpless/Hopeless feelings

Inability to enjoy previously enjoyed activities

Irritability; over-reaction

New phobias/irrational fears

Panic attacks

Personality changes (labile, irritable, anxious, confused, forgetful) Phobias (irrational fears)

Rage attacks; anger outbursts for little or no reason

Suicidal thoughts or suicide attempts
SENSITIVITIES

Acute or abnormal reactions to medications Alteration in taste, smell, and/or hearing

Chemicals (alcohol, medications; lower tolerance for) Food sensitivities

Increased perception of and sensitivity to noise

Light sensitivity

Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)
SKIN/NAILS

Abnormal scarring

Acrodermatitis Chronica Atrophician

Blotchy or mottled skin

Bruise easily

Bruises may take longer to appear, and/or longer to fade

Bull’s-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)

Dermographia (minor scratch pressure on skin leaves vivid red welts)

Dry, itchy skin

Easily scar

Eczema or psoriasis

Fragile nails

Frequent skin irritations

Lymphadenosis benigna cutis

Nails that curve under or downward

Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids) Painful skin (abnormal/excessive pain when scratched or rubbed)

“Paper” skin (feels fragile, tissue-thin when rubbed)

Rashes on body, face

Vertical ridges or beads in nails
SLEEP SYMPTOMS

Abnormal brain activity in stage 4 sleep

Altered sleep/wake patterns (alert/energetic late at night, sleepy during day Difficulty falling asleep

Difficulty staying asleep (frequent and/or prolonged awakenings

Hypersomnia (excessive sleeping)

Myclonus (restless leg syndrome; occasional jerking of entire body) Nightmares (frequent, extremely vivid and/or disturbing) Unrefreshing/Non-restorative sleep
UROGENITAL/REPRODUCTIVE

Decreased libido

Discharge from breast or galactorrhea

Endometriosis

Frequent urination

Incontinence

Impotence

Infant: premature; low birth weight; low muscle tone; failure to thrive Interstitial cystitis

Miscarriage or stillbirth

Painful intercourse

Painful urination or bladder

Pelvic and/or rectal pain

Prostate pain

Swollen testicles

Other symptoms worsen before start of menstruation

Worsening of PMS
OTHER

Abnormal or other changes in sweating

Activity level reduced to less than 50% of pre-onset level

Burning sensation (internal and/or external)

Cancer

Changed voice

Changes in sweat odor/body odor

Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion) Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)

Fatigue, prolonged, disabling, made worse by exertion or stress

Fibrocystic breasts

“Galloping” cholesterol and triglycerides

Hair loss (not related to age, hormones, diet, medication)

Hands hurt excessively when put in cold water

Handwriting changes, altering signature and/or other writing

Hoarseness

Painful, weak grasp that gives way/lets go

Periods of concentrated thinking causes physical and mental exhaustion, increases pain Sore throat

Swelling/Idiopathic edema (fluid retention syndrome)

Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel Symptoms change focus from time to time, like infection is moving through the body Thickened mucus secretions (nose, bowel, vaginal)

Thickened “sleep” around eyes in mornings

Very attractive to biting flies and mosquitoes

Weight changes (usually gain)

Struggle to keep fighting…

Well no one ever said this would be easy or quick and let me tell you it has been neither! I am almost 11 months into my antibiotic treatment for Lyme and co-infections. The latest protocol is the most promising but it is still a wait and see game against the bacteria and parasites. There are many days where I am struggling with thoughts like “Is this all worth it” or “I am just not strong enough to endure this” but I fight through each of those days in hopes that tomorrow is a little better. There are still so many very bad days that they overshadow the touches of good days I have gotten. It really is true that this disease destroys lives!

This disease has aged me. I often feel like I am dying a very slow, very painful death. There are days like today that I just feel dead!

sad

One of the biggest challenges is enduring the bone crushing pain. This is a never ending and if I get a day here and there when I can walk with minor pain I celebrate it. Overall the pain is so bad that it limits how far I can handle walking. I lost count of the times I had to leave a big box store crying because I could not make it through with the pain.

IMG_6313

I never understood how an invisible illness can affect a person until I hit rock bottom with one! It drains your spirit, it cripples your emotions, and completely devastates you! This really describes the disease:

IMG_6314

It is important to understand that these bacteria and parasites infect your entire body. They are spiral in shape so this allows them to move freely through the body. The infect your brain. your heart, your spine, and your tissues as well as destroying your immune system. Here is what they look like:

spiro3

spirochetes_21358909032356

WE need to keep fighting to get better testing for the disease so more people don’t develop late stage neurological Lyme disease. This is why I keep talking about it! WE need to keep fighting for more research for a cure so that more of us can get into the remission stage. WE need to understand the disease more! WE need to make everyone aware of the epidemic that this disease is causing. WE need to realize that yes, you can get it from a tick bite but it is also possible that you can get it from our blood supply because it is not tested for, much like HIV when that epidemic first started. I truly believe that one day the disease will be better understood because there are just TOO many of us suffering and even though we are struggling to keep fight, WE WILL!

Open Letter to the IDSA

Please consider making your voice heard and participating in the Boots On The Ground Campaign at the Mayday Rally on May 1st. Here is my open letter to the IDSA:mayday boots on the groundboots3

April 25, 2015
Dear Members of the IDSA,

I am writing this letter in hopes of getting the guidelines for the treatment of Lyme disease and co-infections modified to better treat those of us suffering with debilitating chronic Lyme.

My Lyme story is long but the abbreviated version is that I have been really sick on and off for the past 25 years. At 12 years old I was diagnosed with Fibromyalgia. Now it is thought that it is more likely that I contracted Lyme disease at age 12 as I got bit by multiple ticks in my youth. I was treated for acne at age 15 with long term Tetracycline and started to function better and was able to live a relatively normal life. During this time I was sicker than most and always very tired. I also had a lot of pain in my body, mostly in my back and neck. In February 2011 I woke up with incredible pain in my thoracic spine. As a result of trying to fix the pain I have three major spine surgeries (ACDF 5-7 that was revised again levels 5-6 and an 8 level thoracic fusion) with no pain relief. Through all of this I continued to get sicker and was unable to work as of October 2012. I have been on over 30 different medications trying to reduce the pain. Other symptoms over the past three years have been blurry vision, fatigue, memory loss, Bell’s Palsy, severe joint pain, trouble walking, tremors, rib pain, gastrointestinal problems, and depression due to all the pain. Over the years I have had several Lyme tests and always had multiple positive bands but not enough to be CDC positive. In June of 2014 I tested positive through IGeneX. I have started on a long term treatment protocol which includes oral and IV antibotics. I have been diagnosed with late stage neurological Lyme (Borrelia) disease, Babesia, and Bartonella. My prognosis is that the treatment will take a long time and be difficult since I have had the bacterial and parasitical infections for 25 years. I struggle daily with extreme pain and fatigue. Every day is a challenge to get through and stay positive that I will someday feel better. I feel like I am a shell of the person I once was.

Through all of this I have met many other people struggling with this chronic disease. I personally know over 50 people who have Lyme disease, many in my home state of Minnesota.

Thank you for taking the time to read this. Please hear our cries for better testing, improved treatment guidelines, and to have a more balanced panel.
Sincerely,
Heather
Minnesota

heatherfightelyme.wordpress.com