Topic: National Lyme Awareness Month: team up to make Lyme info emails for friends & family!
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I thought that with May being National Lyme Awareness Month, I would share this with all of you, old and new members alike, in case you would like to do something similar with your loved ones, before Labor Day Weekend, or before the end of the month, or whenever.
This can be a place to gather information that we can each use to make a personalized Lyme Brochure email for our friends and family. We can collect and edit information and put together our own emails to send out.
Below is the email I sent out today. If you would like to, please feel free to use this as a template for your own email brochures, or to add your own introductory paragraphs(s), to use the info I have collected here, or to add your own info and resources.
Hopefully some of us that have the energy and ability can inform some others this month, with the help and information gathered from all of us in this thread. _____________________________________________
With May being National Lyme Awareness Month, I am trying to do my small part to inform the people I know. �There doesn't seem to be any single source I have found that encapsulates the key information I feel is really important about Lyme. �
So, below is a summary I put together over the last couple of weeks of how Lyme can be contracted, what symptoms can result, how to avoid it, and links and info on how to find treatment. �
Please take some time to read this, as I care about you all and want to try to keep you from going through the devastation of this disease.
News Videos:
Linked below are two very informative and important news segments on Lyme:
**From ABC TV 5, in Boston, MA, Chronicle HD. Originally aired Tuesday, April 21: "Ticked" (four parts - runtime 20:40 minutes)
**From ABC News Channel 2 in Baltimore, MD, "2 Your Health" aired May 20, 2009: "Lyme Disease" (video located at upper right of page - runtime 3:29 minutes)
Lyme is the most common and fastest-spreading 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.
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 Rocky Mountain Spotted Fever (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: 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):
1. Unexplained fevers, sweats, chills, or flushing 2. Flu-like symptoms or malaise 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen or painful glands/lymph nodes 6. Sore throat 7. Headache 8. 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. 9. Irritable bladder or bladder dysfunction, Interstitial Cystitis 10. Upset stomach, GERD, or acid reflux 11. Change in bowel function - constipation, diarrhea 12. "Sick all the time" - seem to catch every illness that comes around 13. Disturbed sleep - too much, too little, early awakening 14. Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis, Bell's Palsy) 15. Lightheadedness, wooziness, syncope 16. Increased motion sickness, vertigo, poor balance, or change in gait 17. Pain, stiffness, and/or swelling of the joints, neck, or back, traveling or localized 18. Tendon and ligament pain or stiffness 19. Neck creeks and cracks, neck stiffness, neck pain 20. Muscle pain or cramps, traveling or localized 21. Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity, loss of hearing 22. Jaw pain or stiffness 23. Twitching or tics of the face or other muscles 24. Tingling, numbness, burning or stabbing sensations, shooting pains 25. Muscle spasms; limb or head jerks 26. Difficulty swallowing, tight throat 27. Tremor 28. Eyes/Vision: double, blurry, increased floaters, light sensitivity, pain, uveitis 29. Heart palpitations, chest pain, pulse skips, heart block, heart murmur, or valve prolapse 30. Shortness of breath, air hunger, cough, painful lungs 31. Chest pain or rib soreness, costochondritis 32. Mood swings, irritability, depression, bipolar disorder 33. Unexplained menstrual irregularity or increased PMS symptoms 34. Unexplained milk production, breast pain 35. Sexual dysfunction or loss of libido 36. Testicular pain/pelvic pain 37. Unexplained weight change - loss or gain 38. Confusion, difficulty in thinking 39. Difficulty with concentration, reading 40. Forgetfulness, poor short term memory 41. Disorientation: getting lost, going to wrong places 42. Difficulty with speech or writing, difficulty with word-finding 43. Exaggerated symptoms or worse hangover from alcohol 44. New food sensitivities or allergies
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:
45. Seizures 46. Autism, ADHD, OCD 47. MS-like Lesions in brain and/or spinal cord on MRI 48. Paralysis 49. Dementia 50. Psychosis 51. Auditory and visual hallucinations
Lyme symptoms are systemic, or multi-systemic. Lyme can be the cause of, or cause sets of symptoms that can be misdiagnosed as:
For a more complete, however not exhaustive, listing of possible symptoms, complete with extensive Medical literature citations, please see this pdf file:
If you would like to know more, please ask. If you have been bitten by a tick, please see a Lyme-knowledgeable Doctor for evaluation. Testing is not generally useful within about 6 weeks of infection, as it looks for antibodies that aren't created in easily detectable amounts until several weeks after infection.
The ELISA test is very inaccurate, and misses up to 75% of DNA-proven Lyme Disease (according to recent Johns Hopkins study), so do NOT submit to an ELISA. Rather, request a kit for the Lyme Western Blot (IgG and IgM) to be sent to a Lyme Disease reference lab, such as IgeneX in California. IgeneX is considered the gold standard of Lyme testing at the moment. More on how Igenex performs a more accurate test: www.igenex.com/innovations3.htm
Even with the Western Blot, many proven cases of Lyme will be seronegative. There are many reasons for this, but suffice to say that Lyme testing is only meant to be used to support your Doctor's clinical diagnosis.
The CDC says that a negative test does not rule out Lyme Disease, and that Lyme is a clinical diagnosis. In light of that, it is in your best interest to go to a Lyme Specialist to be properly evaluated, diagnosed, and treated. I would be happy to help find a Lyme Specialists near your area.
To avoid infection with Lyme and other tick-borne diseases, please find some effective tick repellent, and use it! There are many natural repellents available that are actually MORE effective than DEET.
One that we use is Lewey's EcoBlends ( www.buzzoff.us ), and it can be found in several stores and purchased online. Whatever you buy, use it, and check for ticks frequently - especially in the hair, back of knees, and any creases, like the neck, arms, groin, etc.
For more information on Lyme Disease and its treatment, please see International Lyme and Associated Diseases Society (ILADS) website: www.ilads.org
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Thank you Tincup, for your kind words! I'll be happy if even one of my family or friends reads it.
I was surprised how it effected me emotionally to send this out to people I haven't had the energy to email or talk to in years now. Very humbling to talk about something so personal, especially without prompting. But I am very glad I did it, because I did it for them.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
If anyone is interested, please feel free to copy any part or all of what I wrote, and send it to your family and/or friends.
When I was too cognitively impaired, mired in neuro-lyme, and too sick to even try, I wished I had something I could just copy and paste and send out to people. What I wrote might be too long, but you are welcome to edit it however you wish, and make it your own.
posted
nenet, outstanding job lady!! jam packed full of good links/info xoxox
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Thank you betty - I hope it helps someone, especially with everyone outside this Memorial Day Weekend.
I hope everyone has a good one by the way!
Again, everyone please feel free to pass any of this along to anyone you know that wants or should have Lyme info. Or please feel free to add your own Lyme info letters here.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Thank you Ann!
Good luck - I was suprised to discover my email brought out a family member that had just been bitten and started a *short* 10-day course of antibiotics (at too low a dose too), and no one had told me about it. The info they received came in very handy in that case, because they hopefully still have time to try to fill out their prescription before the first one runs out.
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Wonderful job on this.
I would love to use this if I only thought my family and friends who take any time to read it or go over it.
After 10 years nobody has taken time to understand or learn anything at all about this and it is pretty much heartbreaking.
I am so supportive of family and friends down to the sniffles they have during a cold to going through cancer and more.
But what can you do?
I wish I could really teach them more and they just think I am sick. Thats it. When It told them I had Lyme they said "dont believe everything the doctors tell you." I told them it was a CDC positive test. I got back the response "i do not believe it still and I disagree?"
Disagree?
Ok Family. Thanks : (
When it tell them i have parasite infections of the blood they just act grossed out. And say "stay away from me"
Thanks again : (
Ok well sorry to vent a bit.
If will try to put together using some of your parts a email for them.I I will have to try again in small bits and pieces.
I wish I could just draw a picture because they just do not have "time" to go over things and or "motivation" do learn it if it takes energy and time to do so.
Any ideas?
THANKS
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
This is exactly what I was looking for! I'm one of the ones with late-stage neuro-lyme, and am pretty sure at least a couple members of my family have Lyme as well (we're from MN and spend weeks at the lake and the woods). My extended family is all from ND, and one uncle has "MS" like I do, so I'd love to be able to pass on this information.
thanks for putting this together!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Wow, I am so happy to see your responses! Thank you everyone!
hurtingramma,
Thank you, and you are very welcome! I hope your email helps them. Good luck!
springshowers,
Thank you so much for your very kind words. Rant all you need to, we all need to bare our souls about what this can do to us. So many of us have been in your shoes, and it hurts.
All I can say from personal experience is to do what you can to inform them and then just walk away (let go). Some people just aren't ready to accept illness or perceived difference in another human being, they aren't ready to be compassionate.
Sometimes they see or hear something from a random source, and they finally have an "Aha!" moment and realize they were wrong, but we just don't have control over that, I'm afraid.
As for protecting them from the same fate, you can arm them with some of the info they need, but it is their choice to listen to it and respond.
I expected this was a very long "brochure" for many people, so definitely feel free to take out some parts or add in others, it's just there to help, like a guide or a collection of data and resources.
Since they might not want to read much (and I understand your predicament, all too well), you might just send them the link to the first news video, as it is very effective, convincing, and moving:
**From ABC TV 5, in Boston, MA, Chronicle HD. Originally aired Tuesday, April 21: "Ticked" (four parts - runtime 20:40 minutes)
So glad I could help in some small way. I really wished I had something like this when my Neuro-Lyme was at its worst, before I started getting better cognitively and could finally compose my thoughts and type, or think at all for that matter.
I hope your email gets through to as many of your loved ones and friends as possible. Good luck, and best wishes to your ill family members.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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xoxox
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