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LYME'S disease ~ its NOT "Just my Fibro''~ my lesson learned
Fri, 03/05/2010 - 3:20am
I have decided I needed to share my lesson~ which I have learned the hard way~ with all who choose to read it...because if I am able to help at least one person avoid what I have gone through this past year~ it will be worth every keystroke that I type.
A year ago this month~ March~ I noticed my right side of my face, the area of cheek around the corner of my mouth was red, a rash in a blotch pattern. Then a few weeks later~ my face and lips became swollen. As I discussed this with my PCP, we thought it was part of the allergic reaction I was having at the time to the high blood pressure medicine I was taking. After that medicine was out of my system~ i continued on having these face problems.
The rash now covered the whole right cheek from chin to just below the eye~ and now my face and my right side of my lips had dropped like in Bells Palsy. The cheek tissue is also thicker, and the nerves in both cheek and lips are not as responsive as the left side and when i touch my face it feels somewhat numb.
During this years time~ I have had also 1 severe CFS crash and a couple of FMS crashes. I also noted that my pain med I take for the FMS pain just was not quite working 'good enough'...so I would take an ibuprofen or Tylenol arthritis with my script med. and it would help. I never thought any more of it.
I seemed to be having stiff necks~ low fevers~ hot/cold flashes~ joint aches(but not bad~ just thought it was ALWAYS the weather) ~ tired (but whats new there)~ I would often have a headache but again I attributed that to my CPAP machine needing adjusting. Always thought it was FMS/CFS or another illness that was causing these symptoms.
When my tongue and gums started swelling~ I went back to my PCP and she ordered another slew of blood work and CAT scans of my neck area.
The blood test showed I had Lyme's disease~ which is a bacterial infection that features a skin rash, swollen joints, flue-like symptoms.
But I never had the bulls eye rash!!! I never saw or felt a tick bite!!! how could i have it????!!!! (ofcourse this was really about all i knew of it too)
A person would get this from the bite of an infected deer tick (found in the North-eastern and North-Central USA) and the western black legged ticks (found mostly on the Pacific Coast) ~ both ticks are about the size of a sesame seed. To note: Lyme disease is also found in other parts of the USA and in Europe, Asia, and Australia.
For the blood test to show I had Lyme's meant I was in the later-stage of Lyme's, meaning I have been sick with Lyme's for over 4 weeks time, and had not taken any antibiotics.
''People who have been sick with Lyme's disease for less than a month often don't yet have antibodies to the disease. This means they wont have a positive blood test. Also if a person with early Lyme disease takes antibiotics, he/she may never have a positive Lyme disease test.''
both of these quotes from: www.nlm.nih.gov/medlineplus/lymedisease.html
''One sign of Lyme disease is a rash which may appear 3 to 30 days after the tick bite. This rash usually starts at the site of the tick bite, it may begin as a small red spot and grow larger. The center may fade, creating a 'bulls eye' or ring appearance, but this is NOT always the case. Some people with Lyme's disease have many red spots. The rash may be tender or feel warm to the touch.''
HOWEVER~
''Health care providers may have difficulty diagnosing Lyme disease because many of its more common symptoms are similar to those of other disorders and viral infections. In addition, the only distinctive sign unique to Lyme disease~the EM rash is ABSENT IN AT LEAST ONE-FOURTH of the people who become infected.''
EM=Erythema Migrans
www.3.niaid.nih.gov/about/ National Institute of Allergy and Infectious Diseases
Other symptoms of Lyme disease in its EARLY STAGE (with in 1 to 4 weeks of being bitten):
Fever ~ Chills ~ Headache ~ Fatigue ~ Joint and muscle pain ~ swelling of knees and other large joints~ Swollen lymph nodes.
''Symptoms: As the infection Spreads If the disease is not detected and treated in its early stages, it extends to more areas of the body, affecting the joints, heart and the nervous system. (about 1 - 4 months after the initial bite) Additional rashes may occur and there may be intermittent periods of pain and weakness in the arms and legs. Headaches, fainting and poor memory are other symptoms at this stage along with rapid heartbeat and some loss of control of facial muscles.''
http://arthritis.webmd.com/slideshow-lyme-disease
Although rare, the symptoms of the nervous system disorder caused by late stage Lyme disease may include:
trouble concentrating~ changes in mood~ changes in sleep habit ~ loss of memory ~ muscle weakness
"Late Stage Disease~
"This is the most serious stage of the disease when treatment was either not successful or never started (usually occurring many months after the initial bite). Joint inflammation (arthritis) typically in the knees becomes apparent and may become chronic. The nervous system can develop facial muscle paralysis (Bells palsy), abnormal sensation due to the disease of peripheral nerves (peripheral neuropathy), meningitis, and confusion. Heart."
http://arthritis.webmd.com/slideshow-lyme-disease
Note: do not know why 'heart' was at the end of the sentence all by itself, but quoted directly.
"Treating Lyme disease~ most Lyme disease is curable with antibiotics, particularly when the infection is diagnosed and treated early. Doxycycline, Amoxicillin and Cefuroxime are the drugs of choice most of the time for early illness.
Later illness such as nervous system disease might require long-term intravenous antibiotics such as ceftriaxone, and non-steroidal anti-inflammatory drugs such as aspirin or ibuprofen are used to treat achy joints."
My lesson learned you ask??? well to NOT automatically think every ache and pain is the fibro or chronic fatigue!!
Its so easy to get wrapped up in the FMS/CFS world that sometimes I forget my body really does get other illness~ and I have to say I am learning this lesson the very hard way right now. I'm also being tested for Wegeners Granulomatosis based on other problems i am having~ and yes I did the same thing~ thinking it was "JUST MY FIBRO".
When your body is NOT in a crash, but its just not quite right, like how i described~ go to the doctors~ have a Lyme's test done~ your better to be safe then sorry and get to the late stages like i have done!
Get to really know your body~ on the great days~ the good days~ the not so good days and the horrible days and then when you start falling somewheres in between the lines you'll know maybe something is up and you need to reexamine whats going on and go see your doctor(s).
wishing you happiness~
Cherie
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Hil Cherie,
My story is very much the same as yours. Diagnosed with FM years ago and then in 2000 while rafting in Hells Canyon, Idaho i found a tick on my ankle. 2 days later I woke up so sick, fever, headache, throwing up, just horrible feeling. I continued to vomit so much and so hard that I later had to have surgery to repair the damage it did to my diaphram. My health went downhill bad to the point I could not get myself out of bed with out help, fevers that I swear I must have malaria, and neuro and cognitive impairment so bad I could not remeber my own phone number, could barely speak or comprehend anything. I layed in my bed looking at the ceiling, in horrible muscle and joint pain not even able to watch tv for I could not comprehend it and the sound of anything at was too much stimulation.
I really thought I may be dying. Doctors began to do the "crazy in your head" bit, it's your fibro, blew me off when I mentioned Lyme because there is no lyme in California they said... Finally the last doctor I was seeing was great, she was concerned and wanted to help me. I was checking out one visit and from the other end of the hall she yells to me "What is wrong on you knee?" I never saw it beacause I could not turn or bend hurting so bad but on the back of my knee was the bulls eye rash! She did the labs and I was positive for Lyme...one full year after finding the tick on my ankle. Treated with iv Rocephin via a Picc line for 6 months until my insurance canceled me and I had spent all the money I had. The second month on antibiotics I got a small bit of my life back. I woke in the middle of the night, sat up and kept saying my phone number over and over-I was ecstatic to say the least! I gradually got little bits and pieces of me back but only about 50% and now am on permanent disability and dependant on someone because I can not live on my own now.
I would highly suggest that you view the film "Under Our Skin". There is so much more you must know that I could not begin to explain. The huge controversy and debate on how to treat this, if it even exists according to the corrupt doctors and insurance companies who say there is no such thing as Chronic Lyme Disease. This film exposes it all! You must have a Lyme literate doctor or you will not get the treatment you need and end up like me. I have had the residents at the hospital tell me "There is no such thing as Chronic Lyme" I can't even get them to discuss it with me let alone treat it. So my disease marches on and I really have very little if any options to help get the antibiotics in hopes for improvement because Cherie, even long term antibiotics are not always effective. It is scary!
If I can help you with anything I would be more than happy to do so. I wish you all the best on your journey to recover from Lyme. Be positive too, never loose hope for there are many who get better or go into long remissions. I will be praying for you!
Peace, Vicki
Whether it's caused by a tick bite, a virus, a bacteria, parasite, yeast, retrovirus such as XMRV, a food allergy, nutritional stress, psychological stress, chemical burden (such as heavy metal toxicity, as can be tested through a heavy metals challenge), or FULL BARREL SYNDROME from it being a little of all of it, it is my suggestion that nobody EVER say 'this is just fatigue'. Our bodies are intended to be healthy and well, and they will strive to be that way, it's just the way we are built. (Link below for The Cranial Academy which has a listing of doctors and dentists / providers who have taken the advanced training in this philosophy and skill). Please also know that the Chronic Illness Full Barrel Syndrome video at Lumigrate.com is easy to download, it is FREE and only takes about 20 minutes. Christopher Lepisto, ND is a very gifted presenter and wonderful, progressive, valid, medical provider. Peel the onion, empty the barrel, restore chronic illness to chronic wellness! It is a TON of work, but it can be done.
I really like what Vicky wrote here -- she touches factually on how she was treated by some doctors. She talks about how it was an almost miss and 'coincidence' almost that the doctor saw the bulls-eye (but hadn't examined her.. doctors don't have time to think let alone 'do' all they would like in our shortened appointment times frequently). Mostly she and I have something else in common -- I forgot to tell Ilene Spector, the DO who has turned me onto getting EVEN better through the form of osteopathy taught by Cranial Academy, that I'd been hit by a car a few years back! And she unlocked / unleashed some restrictions in my corpus collosum of my brain and then AFTER than I was like 'oh, yeah, that left side got hit by a car, I forgot to tell you that!' Basically, the moral to the story is to write notes. Have your friends and family help you -- have them email you what they know of your history and have someone mentally competent compile it into a succinct and though history. Those of us who are SICK and have cognitive impairments from it, are not the best people to be in charge of that. Look at the home page of Lumigrate and that YOU model again .. think about who YOU can put around you to be your health advocate, or how to have your current one do more for you so your receovery goes faster, smoother, less expensively and has the best outcome possible.
REALLY wonderful what you both have contributed to far, Cherie and Vicky. NICE offer to be supportive too. Please remember that if you do as much of that HERE where others can see it, they then are included and you're helping way more than ONE person. Already 25 have viewed this in just one day.
Again: Videos tab here takes you to the videos and I recommend everyone watch Full Barrel Syndrome.
Link for The Cranial Academy: www.cranialacademy.org
To Higher Health !! Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
I'd like to provide a link to a wonderful man and healer who just happens to be an ND and Master Herbalist. Dr. Phi Fritchey contracted Lyme's Disease and found relief. Here's a quote from his story:
"Within three days of starting with the very small dosage recommended by Wood (Matthew Wood) (1 - 5 drops, 3 times daily), the fog lifted, the fatigue melted away, and though it took longer, the joint and muscle pain subsided, and has continued to improve since. I feel like my life has been given back to me.
Dr. Phil's site is:
http://hisgoodherbs.com/
Blessings,
David