I found out a few things about the Pic-line today that would have been nice to know sooner and will hopefully be helpful to anyone else who gets one of these.
The clamp was getting very uncomfortable so a few weeks ago so I asked the nurse if she could cut it off - no problem- the next nurse that did my dressing change made it very clear that it was not a good idea because if the cleave broke I could bleed to death (nice to know). It is extremely rare, I then said to her that I had the special line that has a valve on the internal end, she then told me that this kind of IV line has only been out for about 6 months and should work fine - but did I want experiment with it. No.
The other thing she said is after doing the saline push at the end of each treatment try not push the syringe all the way down, try to leave a 1/4 inch of solution in the syringe because this prevents creating an airlock, if an airlock exists this can create a problem leaving one end open where the blood could back into.
I asked her what were the benefits for a slow push of the antibiotic, she said because it is very irritating to the veins, so a slow dilution is much better.
In general the pic-line is easy to live with, if you have it for awhile the the skin can become a little irritated so ask the nurse when having the to dressing change to go slowly or it may tear the skin a little.
When taking a shower in general they say use plastic wrap and tape, (but this is time consuming and leaves lots of tiny areas for water to seep into) for some reason they don't promote pic-line covers much. But I have to say the cover has given me just a bit of freedom back and well worth looking into. You can find this on my links section.
Monday, June 1, 2009
Saturday, May 23, 2009
Never Give Up
In this is a battle you really can't turn your health over to the medical profession. You can not rely on normal or quick Lymes testing because over 40 % of the current testing will result in many False Negatives. If you rely solely these tests you will have a false sense of security when actually you may still have a raging case of Lymes or a Co infection.
Testing
You may have to battle your doctors to get the most accurate testing - I suggest IGENEX. Your doctor may say Lymes is not in your area and there is no need to worry about it - Don't believe it. The doctors or health clinics are not really aware of what may be happening in you area and during that time you are gradually getting sicker and sicker. The doctors may continue testing you for everything else under the sun and still not know what is wrong with you, while not even considering Lymes.
Antibiotics
You can not put all of your faith in your doctors, if they say a short 28 day coarse of antibiotics will take care of your Lymes problem - that is NOT true. If you have just been bit and they caught it within the first week or so that may be true (this scenario is very unlikely).
If you have tested positive and had symptoms for 1-2 months more than likely you will need to be on Doxy for up to 4 months 200-400mg 2-3 times a day. If you have had the spirakeet longer (mine was undiagnosed for at least 2 1/2 years, I had classic symptoms and they didn't catch it). If caught early you will need antibiotics for 4-8 months or longer and depending on the severity up to 1-6 years or longer. So the key is to catch it early. You may have to fight with your doctor for the treatment or find a Lymes literate doctor. One reason for the duration is the need to kill it during the many cycles it goes through, Lymes spirakeets will go into a cyst form to protect itself when it feels threatened or mutate, so you need to extend the treatment well beyond the time frame to make sure that you have gotten the bacteria.
If doctors tell you not to worry - it was not in long enough. Wrong - if it was not properly removed - you could have just squeezed the bacteria and parasites into you. (Never squeeze the body use a fine tweezers and remove it by the head).
Not all Doctors think the Same
Not all doctors think in the same way, you will need a doctor that uses integrative medicine (I wasn't interested, I just wanted them to napalm this thing but learned very quickly you really need both or you will be one very sick puppy). I would NOT suggest infectious disease doctors, you may be lucky and have one that really understands Lymes, but from what I have seen I am not impressed, most doctors are not educated in Lymes or only know basic information.
Most doctors will rely on the quick Lymes test which produces too many False Negative results. (I had 3 False Negative tests, my body was not making antibodies to fight this disease off).
When you get tested I would prefer to have a full panel Lymes test not all doctors know how to read them, so get a copy for yourself and look over the results and see if there is positive anywhere in the results. Some doctors will see that most of your results are negative and that is what they think. (Once I got the right testing done and got the results my doctor thought it was fine she didn't notice the 1 small positive result, I got a copy saw the small positive and called the director of the lab.) I showed my results to other doctors first, they were not interested, it was not their speciality and would not even look at it.
I thought I was Crazy
Most important follow you intuition, you MUST be your own advocate. - I hit every obstacle imaginable along the way, I was so wiped out but still tried to function, I thought I must be still recovering from the Bells Palsy or just lazy but actually the Lymes was systematically moving through my body, and it wasn't until one of my students pointed me in the right direction to the right lab where I started to get some answers. At this point I was feeling better and thought I must be crazy for pursuing more testing, but I also knew at some point another weird thing would attack me. I think of myself as a healthily person and all of this was just to strange so I knew there had to be an underlying problem. That is why I suggest the 6040 full panel Igenex test (and even then you may need more testing to find it) any other testing will lull you into a
false sense of security until it hits you again!
Get Accuarte Testing
The most common and cheapest tests are Enzyme-linked immunosorbent assay (ELISA), Indirect fluorescent antibody (IFA), and Western blot test. These are quick tests with results back in a few days these tests are used to look for the Lyme disease antibodies..... the problem is you may not be making anitibodies, meaning your body is NOT trying to fight this bacteria off. (I had no antibodies but still had a raging case of Lymes / Babesia.) The only chance you may have in finding the disease with these tests is if you are on a coarse of antibiotics which create a die off reaction that can then be detected. Insurance companies only pay for a very small portion if at all due to suggest CDC guidelines, these are hopefully in the process of being changed. This disease is very good at hiding and if you are on any antivirals or steroids or other meds or have any other variables you will have false negative results. Reasons for False Negatives more info on False Negatives
The Best and most accurate test -is much more in-depth and extensive it takes about 3 weeks for results, and if by chance that one comes back negative or the results are inconclusive you go to plan B. That means a very short coarse of antibiotics then the urine is tested. Please read How To Get Reliable Testing. For testing, IGeneX More information
Never Give Up you will have to fight for your answers.
Why insurance doesn't pay much if at all
Lyme diagnosis is not within standard of care There is not such thing as Lyme disease (in this area) Lyme testing used are not FDA approved or CDC approved i.e. Bowen, MDL, etc. There is no clinical evidence of Lyme disease with this patient (based on being ill informed and lack of understanding of the stages and symptoms of Lyme disease). Treatment with IV’s for Lyme disease is not within standard of care Length of treatment is not standard of care Antibiotic used is not standard of care Supplements are not within standard of care More information on this article
Also suggested is to watch the Under Our Skin trailer or visit their blog available on links
Testing
You may have to battle your doctors to get the most accurate testing - I suggest IGENEX. Your doctor may say Lymes is not in your area and there is no need to worry about it - Don't believe it. The doctors or health clinics are not really aware of what may be happening in you area and during that time you are gradually getting sicker and sicker. The doctors may continue testing you for everything else under the sun and still not know what is wrong with you, while not even considering Lymes.
Antibiotics
You can not put all of your faith in your doctors, if they say a short 28 day coarse of antibiotics will take care of your Lymes problem - that is NOT true. If you have just been bit and they caught it within the first week or so that may be true (this scenario is very unlikely).
If you have tested positive and had symptoms for 1-2 months more than likely you will need to be on Doxy for up to 4 months 200-400mg 2-3 times a day. If you have had the spirakeet longer (mine was undiagnosed for at least 2 1/2 years, I had classic symptoms and they didn't catch it). If caught early you will need antibiotics for 4-8 months or longer and depending on the severity up to 1-6 years or longer. So the key is to catch it early. You may have to fight with your doctor for the treatment or find a Lymes literate doctor. One reason for the duration is the need to kill it during the many cycles it goes through, Lymes spirakeets will go into a cyst form to protect itself when it feels threatened or mutate, so you need to extend the treatment well beyond the time frame to make sure that you have gotten the bacteria.
If doctors tell you not to worry - it was not in long enough. Wrong - if it was not properly removed - you could have just squeezed the bacteria and parasites into you. (Never squeeze the body use a fine tweezers and remove it by the head).
Not all Doctors think the Same
Not all doctors think in the same way, you will need a doctor that uses integrative medicine (I wasn't interested, I just wanted them to napalm this thing but learned very quickly you really need both or you will be one very sick puppy). I would NOT suggest infectious disease doctors, you may be lucky and have one that really understands Lymes, but from what I have seen I am not impressed, most doctors are not educated in Lymes or only know basic information.
Most doctors will rely on the quick Lymes test which produces too many False Negative results. (I had 3 False Negative tests, my body was not making antibodies to fight this disease off).
When you get tested I would prefer to have a full panel Lymes test not all doctors know how to read them, so get a copy for yourself and look over the results and see if there is positive anywhere in the results. Some doctors will see that most of your results are negative and that is what they think. (Once I got the right testing done and got the results my doctor thought it was fine she didn't notice the 1 small positive result, I got a copy saw the small positive and called the director of the lab.) I showed my results to other doctors first, they were not interested, it was not their speciality and would not even look at it.
I thought I was Crazy
Most important follow you intuition, you MUST be your own advocate. - I hit every obstacle imaginable along the way, I was so wiped out but still tried to function, I thought I must be still recovering from the Bells Palsy or just lazy but actually the Lymes was systematically moving through my body, and it wasn't until one of my students pointed me in the right direction to the right lab where I started to get some answers. At this point I was feeling better and thought I must be crazy for pursuing more testing, but I also knew at some point another weird thing would attack me. I think of myself as a healthily person and all of this was just to strange so I knew there had to be an underlying problem. That is why I suggest the 6040 full panel Igenex test (and even then you may need more testing to find it) any other testing will lull you into a
false sense of security until it hits you again!
Get Accuarte Testing
The most common and cheapest tests are Enzyme-linked immunosorbent assay (ELISA), Indirect fluorescent antibody (IFA), and Western blot test. These are quick tests with results back in a few days these tests are used to look for the Lyme disease antibodies..... the problem is you may not be making anitibodies, meaning your body is NOT trying to fight this bacteria off. (I had no antibodies but still had a raging case of Lymes / Babesia.) The only chance you may have in finding the disease with these tests is if you are on a coarse of antibiotics which create a die off reaction that can then be detected. Insurance companies only pay for a very small portion if at all due to suggest CDC guidelines, these are hopefully in the process of being changed. This disease is very good at hiding and if you are on any antivirals or steroids or other meds or have any other variables you will have false negative results. Reasons for False Negatives more info on False Negatives
The Best and most accurate test -is much more in-depth and extensive it takes about 3 weeks for results, and if by chance that one comes back negative or the results are inconclusive you go to plan B. That means a very short coarse of antibiotics then the urine is tested. Please read How To Get Reliable Testing. For testing, IGeneX More information
Never Give Up you will have to fight for your answers.
Why insurance doesn't pay much if at all
First is: Diagnosis is not within standard guidelines.
Second is: Treatment is not medically necessary because of one of the two following reasons: 1) Not adequate data supporting diagnosis and/or 2) the treatment is not within the standard of care for Lyme disease
Also suggested is to watch the Under Our Skin trailer or visit their blog available on links
Growing wings
May 23 10:30 pm
I can hardly stand it, I feel as if my back is going to rip apart on the flanks and grow wings - at least that is what it feels like. I know this is part of the Herx reaction so it is all good - but ....whew ...this can be tough.
May 24 12:57 pm
Wow ... I am not horizontal in bed or on the couch for the moment and I might even try to do a tiny bit of painting. Right now my back is alright so maybe I have popped my wings, I have just a bit more than minimal energy. This is a big improvement!
I can hardly stand it, I feel as if my back is going to rip apart on the flanks and grow wings - at least that is what it feels like. I know this is part of the Herx reaction so it is all good - but ....whew ...this can be tough.
May 24 12:57 pm
Wow ... I am not horizontal in bed or on the couch for the moment and I might even try to do a tiny bit of painting. Right now my back is alright so maybe I have popped my wings, I have just a bit more than minimal energy. This is a big improvement!
Thursday, May 7, 2009
Starting to Herx
I got my picc-line last week and am starting to get use to giving myself the infusions and see what my limitations are. I am giving myself a little down time for the moment so I can try to heal.
I have been having the Herx reaction (which is what I expected). I have energy from about 7-11am - then I am down for the count. This totally sucks, I have plans of what I am going to do for the day, thinking that I am going into the studio ....but I never seem to make it....I am lucky if I can take my meds, take a shower without getting the bandages wet, wash the dishes, light house keeping, then I am down for the count again.
I figured this was going to happen and that was why I wanted give myself a couple of weeks, and see how the die-off goes before I made new commitments. One minute I am fine, usually from 7-11am I am thinking no big deal - I can take on the world, but at 11:30 everything changes, meaning headaches, large muscle and joint pain, fatigue etc - this is all a good sign, the IV meds are doing their job. The problem with the Herx, is that it goes in cycles every 3-4 weeks and the reaction can last 1-3 weeks itself, when I was really bad in Nov / Dec I had more bad days than good.
Many people once the start reciveing treatment for Lymes (oral or IV) want to stop the treatment due to the fact that the healing process is so tough the herx reaction brings back many of the original symptoms, is also called the Healing Crisis and the trick is not to give up. " Herxing" events have even been likened to an "exorcism" that is "a necessary evil to be endured."
-------
Wow - it has been 3 1/2 weeks since I have started the IV therapy ..and I really feel horrible . I thought this Herx reaction would be only for a couple of days but from my last ones knew this could happen.
I go between wondering if I am just lazy or really not feeling well, I can't make it off the couch and am sleeping alot again. Mom just called and was complaining about the 90 degree heat, I told her I am wearing a down vest and am using a down blanket....well I guess that answers my question.
May 19 - today is a good day, I actually did a little painting - I am trying to find me again.
The Herx reaction
Herxing
I have been having the Herx reaction (which is what I expected). I have energy from about 7-11am - then I am down for the count. This totally sucks, I have plans of what I am going to do for the day, thinking that I am going into the studio ....but I never seem to make it....I am lucky if I can take my meds, take a shower without getting the bandages wet, wash the dishes, light house keeping, then I am down for the count again.
I figured this was going to happen and that was why I wanted give myself a couple of weeks, and see how the die-off goes before I made new commitments. One minute I am fine, usually from 7-11am I am thinking no big deal - I can take on the world, but at 11:30 everything changes, meaning headaches, large muscle and joint pain, fatigue etc - this is all a good sign, the IV meds are doing their job. The problem with the Herx, is that it goes in cycles every 3-4 weeks and the reaction can last 1-3 weeks itself, when I was really bad in Nov / Dec I had more bad days than good.
Many people once the start reciveing treatment for Lymes (oral or IV) want to stop the treatment due to the fact that the healing process is so tough the herx reaction brings back many of the original symptoms, is also called the Healing Crisis and the trick is not to give up. " Herxing" events have even been likened to an "exorcism" that is "a necessary evil to be endured."
-------
Wow - it has been 3 1/2 weeks since I have started the IV therapy ..and I really feel horrible . I thought this Herx reaction would be only for a couple of days but from my last ones knew this could happen.
I go between wondering if I am just lazy or really not feeling well, I can't make it off the couch and am sleeping alot again. Mom just called and was complaining about the 90 degree heat, I told her I am wearing a down vest and am using a down blanket....well I guess that answers my question.
May 19 - today is a good day, I actually did a little painting - I am trying to find me again.
The Herx reaction
Herxing
Tuesday, April 28, 2009
Got the picc-line today
Finally had the IV picc-line today April 28 2009. I was so not looking forward to this but since no improvement in my CD57 numbers I finally felt resolved and went through with it. The toughest part up until now is the emotional roller coaster, were on then off, thinking I was doing better and finding that I wasn't really. Since my CD57 numbers did not improve there were not many other options for improvement, I could have opted for the painful injections but after talking to many nurses they all suggested a picc-line would be best and less painful.
Emotionally it is pretty hard not to be freaked out, imagining a line is going into a vein on your arm then threaded through your chest into a main vein just above your heart. The advantage of having the rocepcephin administered this way is that I will benefit 100% from the antibiotics instead of only partial absorption. 12 hours old - so far so good
The procedure was done in ICU, everything was sterile, I had a GREAT nurse (Val) she studied at Stanford and now teaches other nurses how to apply picc- lines. The only thing I felt was the Linacane to numb the area, it was no different than having my other IV's with the advantage of this one being much more effective. The hardest thing about this was the emotions leading up to it and the unknown limitations, how to take a shower, how much time would be involved taking all of my other drugs along with this IV, fear of infection etc.
After it was done I felt like I was released from a leash and since I feel so good I just have to remember I do have limitations and there is quite possible an upcoming Herx reaction. Meaning a die off of the bacteria that can make you feel horrible. But today is good and if anyone else is in fear about having one of these, it is not as bad as it has been built up to be. - (so far)
Picc-line information
Emotionally it is pretty hard not to be freaked out, imagining a line is going into a vein on your arm then threaded through your chest into a main vein just above your heart. The advantage of having the rocepcephin administered this way is that I will benefit 100% from the antibiotics instead of only partial absorption. 12 hours old - so far so good
The procedure was done in ICU, everything was sterile, I had a GREAT nurse (Val) she studied at Stanford and now teaches other nurses how to apply picc- lines. The only thing I felt was the Linacane to numb the area, it was no different than having my other IV's with the advantage of this one being much more effective. The hardest thing about this was the emotions leading up to it and the unknown limitations, how to take a shower, how much time would be involved taking all of my other drugs along with this IV, fear of infection etc.
After it was done I felt like I was released from a leash and since I feel so good I just have to remember I do have limitations and there is quite possible an upcoming Herx reaction. Meaning a die off of the bacteria that can make you feel horrible. But today is good and if anyone else is in fear about having one of these, it is not as bad as it has been built up to be. - (so far)
Picc-line information
Saturday, April 11, 2009
Lyme symptoms
Head & face
Headache, migraine
Pressure in the head
Tingling of nose, cheek, face
Flushing
Twitching of facial or other muscles (motor tics)
Jaw pain or stiffness (TMJ-like problems)
Difficulty chewing, swallowing, speaking
Facial paralysis (Bell's palsy)
Sore throat, swollen glands, phlegm
Runny nose
Sinusitis
Hoarseness or vocal cord problems
Increase in allergy symptoms
Change in smell, taste; smell or taste hallucinations
Unexplained hair loss
Eyes
Double or blurry vision
Oversensitivity to light
Floaters, spots, flashing lights
Phantom images in corner of eyes
Decreased perception of light or color
Vision changes incl. blindness, retinal damage, optic atrophy
Eye pain
Wandering or lazy eye
Drooping eyelid
Swelling around eyes
Red eyes
Conjunctivitis or "pink eye"
Ears
Decreased hearing
Plugged ears
Pain in ears
Ringing, buzzing, tinnitus
Oversensitivity to sounds
Digestive & excretory systems
Diarrhea or constipation
Upset stomach (nausea, vomiting, pain)
GERD (gastroesophageal reflux disease/acid reflux)
Irritable bladder (trouble starting or stopping)
Unexplained weight gain or loss
Loss of appetite
Musculoskeletal system
Bone pain, joint pain, joint swelling, or stiffness
Shifting joint pains
Carpal tunnel syndrome, tennis elbow
Neck is stiff, painful, creaks or cracks
Muscle pain or cramps (fibromyalgia)
Burning sensation in feet
Shin splints
Plantar fasciitis
Drooping shoulders
Poor muscle coordination
Muscle weakness
Loss of muscle tone
Respiratory & circulatory systems
Shortness of breath, can't get full/satisfying breath
Cough
Bronchitis
Chest pain or rib soreness
Night sweats, unexplained chills
Heart palpitations, extra beats or pulse skips (arrhythmia)
Heart blockage, murmur, valve prolapsed, heart attack
Stroke
Swelling or enlargement of heart
Diminished exercise tolerance
Neurologic system
Burning or stabbing sensations in the body
Peripheral neuropathy
or partial paralysis
Weakness or paralysis of limbs
Tremors or unexplained shaking
Loss of reflexes
Seizures
White matter lesions
Numbness, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Light-headedness, wooziness, brain fog, fainting
Meningitis (inflammation of the protective membrane around the brain)
Encephalopathy (cognitive impairment from brain involvement)
Encephalomyelitis (inflammation of the brain and spinal cord)
Psychological well-being
Mood swings, irritability
Agitation
Anxiety, panic attacks
Depression
Overemotional reactions, crying easily
Disorientation: getting lost or going to the wrong place
Aggressive behaviour or impulse violence
Obsessive-compulsive behaviour
Bipolar disorder, manic episodes
Schizophrenic-like states
Personality changes
Depersonalization
Increased suspiciousness, paranoia
Hallucinations
Suicidal thoughts
Feeling as if you are losing your mind
Eating disorders, anorexia
Difficulty falling or staying asleep, too much sleep, or insomnia
Cognitive symptoms
Forgetfulness, memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration, reading, or spelling
Word retrieval problems (can't remember words, stop at mid-sentence)
Dyslexia-type reversals, difficulty with writing
Problems with numbers
Difficulty with speech (slowed, slurred or stammering)
Forgetting how to perform simple task
Attention deficit problems, distractibility
Difficulty with organization and planning
Difficulty with multitasking
Slowed speed of processing
Poor school or work performance
Reproduction & sexuality
Loss of sex drive
Sexual dysfunction
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Extreme PMS symptoms
Endometriosis
Miscarriage, stillbirth, premature birth, neonatal death, congenital Lyme disease (passes from mother to foetus)
Testicular or pelvic pain
General well-being
Extreme fatigue, tiredness, exhaustion, poor stamina (Chronic Fatigue Syndrome)
Unexplained fevers (high or low grade)
Low body temperature
Narcolepsy, sleep apnea
Swollen glands, swollen/painful lymph nodes
Continual infections (sinus, kidney, bladder, eye, ear, etc.)
Chemical sensitivities
Symptoms seem to change, come and go; pain migrates to different body parts
Early on, experienced a "flu-like" illness, possibly not feeling well since
Exaggerated symptoms or worse hangover from alcohol
Increased motion sickness
Decreased interest in play (children)
Skin problems
Livedo reticularis
Benign tumor-like nodules
Acrodermatitis Chronica Atrophicans
Erethyma Migrans (rash)
Other organ problems
Liver inflammation
Enlarged or tender spleen
Dysfunction of the thyroid (under or over active)
Bladder & kidney problems (including bed wetting)
Headache, migraine
Pressure in the head
Tingling of nose, cheek, face
Flushing
Twitching of facial or other muscles (motor tics)
Jaw pain or stiffness (TMJ-like problems)
Difficulty chewing, swallowing, speaking
Facial paralysis (Bell's palsy)
Sore throat, swollen glands, phlegm
Runny nose
Sinusitis
Hoarseness or vocal cord problems
Increase in allergy symptoms
Change in smell, taste; smell or taste hallucinations
Unexplained hair loss
Eyes
Double or blurry vision
Oversensitivity to light
Floaters, spots, flashing lights
Phantom images in corner of eyes
Decreased perception of light or color
Vision changes incl. blindness, retinal damage, optic atrophy
Eye pain
Wandering or lazy eye
Drooping eyelid
Swelling around eyes
Red eyes
Conjunctivitis or "pink eye"
Ears
Decreased hearing
Plugged ears
Pain in ears
Ringing, buzzing, tinnitus
Oversensitivity to sounds
Digestive & excretory systems
Diarrhea or constipation
Upset stomach (nausea, vomiting, pain)
GERD (gastroesophageal reflux disease/acid reflux)
Irritable bladder (trouble starting or stopping)
Unexplained weight gain or loss
Loss of appetite
Musculoskeletal system
Bone pain, joint pain, joint swelling, or stiffness
Shifting joint pains
Carpal tunnel syndrome, tennis elbow
Neck is stiff, painful, creaks or cracks
Muscle pain or cramps (fibromyalgia)
Burning sensation in feet
Shin splints
Plantar fasciitis
Drooping shoulders
Poor muscle coordination
Muscle weakness
Loss of muscle tone
Respiratory & circulatory systems
Shortness of breath, can't get full/satisfying breath
Cough
Bronchitis
Chest pain or rib soreness
Night sweats, unexplained chills
Heart palpitations, extra beats or pulse skips (arrhythmia)
Heart blockage, murmur, valve prolapsed, heart attack
Stroke
Swelling or enlargement of heart
Diminished exercise tolerance
Neurologic system
Burning or stabbing sensations in the body
Peripheral neuropathy
or partial paralysis
Weakness or paralysis of limbs
Tremors or unexplained shaking
Loss of reflexes
Seizures
White matter lesions
Numbness, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Light-headedness, wooziness, brain fog, fainting
Meningitis (inflammation of the protective membrane around the brain)
Encephalopathy (cognitive impairment from brain involvement)
Encephalomyelitis (inflammation of the brain and spinal cord)
Psychological well-being
Mood swings, irritability
Agitation
Anxiety, panic attacks
Depression
Overemotional reactions, crying easily
Disorientation: getting lost or going to the wrong place
Aggressive behaviour or impulse violence
Obsessive-compulsive behaviour
Bipolar disorder, manic episodes
Schizophrenic-like states
Personality changes
Depersonalization
Increased suspiciousness, paranoia
Hallucinations
Suicidal thoughts
Feeling as if you are losing your mind
Eating disorders, anorexia
Difficulty falling or staying asleep, too much sleep, or insomnia
Cognitive symptoms
Forgetfulness, memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration, reading, or spelling
Word retrieval problems (can't remember words, stop at mid-sentence)
Dyslexia-type reversals, difficulty with writing
Problems with numbers
Difficulty with speech (slowed, slurred or stammering)
Forgetting how to perform simple task
Attention deficit problems, distractibility
Difficulty with organization and planning
Difficulty with multitasking
Slowed speed of processing
Poor school or work performance
Reproduction & sexuality
Loss of sex drive
Sexual dysfunction
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Extreme PMS symptoms
Endometriosis
Miscarriage, stillbirth, premature birth, neonatal death, congenital Lyme disease (passes from mother to foetus)
Testicular or pelvic pain
General well-being
Extreme fatigue, tiredness, exhaustion, poor stamina (Chronic Fatigue Syndrome)
Unexplained fevers (high or low grade)
Low body temperature
Narcolepsy, sleep apnea
Swollen glands, swollen/painful lymph nodes
Continual infections (sinus, kidney, bladder, eye, ear, etc.)
Chemical sensitivities
Symptoms seem to change, come and go; pain migrates to different body parts
Early on, experienced a "flu-like" illness, possibly not feeling well since
Exaggerated symptoms or worse hangover from alcohol
Increased motion sickness
Decreased interest in play (children)
Skin problems
Livedo reticularis
Benign tumor-like nodules
Acrodermatitis Chronica Atrophicans
Erethyma Migrans (rash)
Other organ problems
Liver inflammation
Enlarged or tender spleen
Dysfunction of the thyroid (under or over active)
Bladder & kidney problems (including bed wetting)
Friday, April 10, 2009
Got the IV appoinment
I am on a break with the Ceftin for about 6 weeks trying to wake up the limes again, so we can then blast them with IV antibiotics. Don't know how long that will last - at the minimum 2 months but more likely 4-6 months. I'm still on the Azithro and Mepron for the coinfection while on the brake. Got a call yesterday that they weren't going to schedule my IV do to not having enough picc nurses in the county. Got another call today have an appointment for the IV on the 28 what a roller coaster, one minute upset not having an appointment the next the reality of it happening and just wanting to break. Humor is what keeps me going, I found when talking to someone that is unreasonable just say picc line and they run away how amazing is that!
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