posted
Hello. I am curious as to whether it is common to develop Lyme's symptoms almost 1 year after appearance of rash. I have been dealing with symptoms for over 3 weeks (was hospitalized for 4 nights). I had blood taken yesterday to check for Lyme, Ehlrichia and Q-Fever. I should have results in a few days, but after reading these boards, I'm a bit nervous about the accuracy.
Any insight that can be offered is greatly appreciated!
Thanks so much! jwick25
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
| IP: Logged |
quote:Originally posted by proudtoserve: Welcome, It is rather common to have symptoms that much later. Were you treated for lyme when you had the rash a year ago? Even if you did recieve treatment it may not have been enough for long enough. Lots of knowledge here, hope you get the help you are looking for. Ultimately though if you think you have lyme it is in your best interest to see a LLMD (Lyme Literate Medical Doctor). I hope you dont mind me asking but what was it that had you in the hospital for 4 days? Proud
Hi Proud (and other members),
Thank you for the response! Here is a little background (I apologize if this post is too long):
In May 2007, I was on a cruise with my husband and wound up with a bullseye rash on my arm. Upon returning home, I had a doctor's appt., so I took my digital camera that had a picture of the rash (arm had already healed). Doctor advised that there was no reason to test for Lyme because I had no physical symptoms.
A few weeks ago, I started to feel sick with flu-like symptoms. My first day out of work was March 17th. I have not yet returned. I was experiencing shaking (mostly at night), diarrhea, major lightheadness, chills, extreme fatigue, weakness, etc. I spent 4 nights in the hospital. The doctor believed that I had a nasty viral infection but ran many tests to rule out other problems. Since being released, I have had some days that are not too bad and others that make me feel I am trapped in a nightmare. Symptoms include: Stiff neck, bone pain (legs), heavy limbs, shaking, weakness, extreme fatigue, trouble falling asleep, motion sickness (when reading or watching tv), weight loss, loss of appetite, blurry vision at times, memory loss (short term), difficulty concentrating, headaches and unexplained menstrual pain.
A copule of days ago, I had a follow up with my doctor. I took some printed information on Lyme Disease with me and discussed it with her. I also brought the picture of my rash from last year. I was sent to the blood lab to be tested to Lyme, Ehrlichia and Q-fever, as well as a few other general tests. I am actually hoping that I test positive for Lyme Disease, as it is treatable, and I will finally have a concrete answer as to what has been affecting me.
After reading several messages on these boards, I am concerned about test accuracy, proper diagnosis and treatment. I have begun the search for an LLMD (Philly and surrounding areas) so that I can plan my next steps once my results are in.
I am growing more frustrated and scared by the day, as I feel I am in a race against the clock to figure out what is making me so sick. The thought of an undetected problem affecting me while no one is able to diagnose me is horrifying. I would greatly appreciate any insight that could be offered, as I know little about this disease and its treatment.
Thank you for taking the time to read my message. I appreciate it!
jwick25
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
| IP: Logged |
posted
Trust me you have Lyme and or co-infections.
ALSO Most people are asymptomatic for Lyme, or do not present many classic clinical symptoms, at least to start.
Lyme takes several forms in your body, and can lie in a cycst form, until stress or something we don't know triggers it to be active. Think herpes or chicken pox.
Lyme is also CLINICAL DX, and CANNOT ONLY be confirmed by a simple blood test. Co-infections are easier to test for objective finding, but you should use a qualified lab to make sure they are testing for all mainstream known strains.
However since you have so many classic symptoms I would expect you to test positive. Positive for anyone here with Lyme is ANY band your body has produced to defend against the lyme bacteria, not just 5 or more on your Western Blot test as the CDC states.
Get your tests and then go from there, as many people do test positive, and respond to treatment which in your case will mean months if not years of abx. NOT 2-3 weeks.
Your Doctor-- who did not initially did not test you for Lyme- really F_CKED Up. The bull's eye rash is a classic symptom's of Lyme and one of the mainstream medical community's benchmarks for the disease. It is due to his/her incompetence that you find yourself ill today and suffering.
I take the time to write (and most people on this board) because we want to help others like you that have gotten bad advice and or information.
I got lyme 10 years ago, was given the standard two weeks of antibiotics-- and never got better. Finally 4 months ago I found a LLMD who DX me with Lyme, Babesia and Bartonolla. I am now under proper treatment, but due to the long time lapse I am very sick today. During this 10 years I have experienced and learned too much about Lyme and their friends.
YOUR Dr is not testing for common co-infections. Also a big problem with standard labs, and not Lyme literate labs is that they are using outdated- 15 year old algorithm's and specimens.
Also the most common CO-INFECTIONS;
Babesiosis Explanation: Protozoa that invade, infect, and kill the red blood cells Symptoms: Fatigue, night sweats, fever, chills, weakness, weight loss, nausea, abdominal pain, diarrhea, cough, shortness of breath, headache, neck and back stiffness, dark urine or blood in urine Treatment: Atovaquone (Mepron) plus Azithromycin (Zithromax), Clindamycin and oral Quinine Other: Alternative treatment may include Riamet or Artemisinin
Bartonella Explanation: Bartonella spp. bacterium Symptoms: Fever, chills, headache and severe pain in the tibia, weight loss, sore throat, papular or angiomatous rash Treatment: Erythromycin, plus a Fluoroquinolone or Rifampin
Ehrlichiosis (HGE and HME) Explanation: Rickettsiae that infect the white blood cells Symptoms: Anemia, fever, chills, headache, muscle pain, rigors, gastrointestinal symptoms, anorexia, fatigue Treatment: Doxycycline, Rifampin
Rocky Mountain spotted fever Explanation: Rickettsia rickettsii parasite that invades the cells lining the heart and blood vessels Symptoms: High fever, severe headache (especially behind the eyes), maculopapular skin rash Treatment: Tetracycline, Doxycycline, or Chloramphenicol
Colorado Tick Fever Explanation: Reovirus that lodges inside the cells Symptoms: High fever, chills, severe muscle aches, back pain, headache (especially behind the eyes), light sensitivities, nausea, vomiting, diarrhea Treatment: No antiviral therapy is available Other: Aspirin
Powassan encephalitis Explanation: Flavivirus that invades and infects the brain Symptoms: Fever, headache, pain behind the eyes, light sensitivity, muscle weakness, seizures, paralysis, brain inflammation Treatment: No effective treatment
Tick Paralysis Explanation: A toxic reaction to saliva from female ticks Symptoms: Paralysis begins in legs and spreads throughout the body within hours Treatment: Recovery is rapid following the removal of the tick
Mycoplasma Explanation: A genus of small bacteria which lack cell walls. M. fermentans, M. pneumoniae, M. penetrans, M. hominis and M. genetalium Symptoms: Fatigue, headaches, muscle pain and soreness, nausea, gastrointestinal problems, joint pain and soreness, lymph node pain, cognitive problems, depression, breathing problems and other signs and symptoms Treatment: Slow-growing mycoplasmal infections are not rapidly susceptible to antibiotics. Doxycycline, Minocycline, Ciprofloxacin, Azithromycin, and Clarithromycin may be used.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
Chronic lyme set in for me about 26 months after the initial infection. I read in "Healing Lyme" that the average time-from-initial-infection-to-chronic is 2 years.
Another feature of Lyme to be aware of is the approx. 4-week cycle of symptoms (with me it was recurring sinus infection, sore throat, and other flu-like symptoms).
Best of luck to you.
Posts: 175 | From Colorado | Registered: Feb 2007
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi ALL
Having a Lyme Bullseye is as Positive as Positive Gets --
Tests are Mostly useless - Very inaccurate at best -- results get less accurate with time also
Best results usually 2 to 6 weeks after infection
If you saw a Lyme Bullseye bruise on you than you Have lyme and OR co infections -
Did you take pictures? - there Important --
I saw bullseye on me - started getting sick in a few months - One year I was perty sick -
Then went down hill quickly --
Get help soon-- Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yep. If you have/had the rash (or bulls-eye) you don't need a test to confirm lyme. You only get the rash if the bite was infected with lyme and probably co-infections.
And yeah, you can get symptoms years later (or of course some people get sick right away). It was that way for many of us. I was bit nearly 10 years ago and had some annoying symptoms on and off but didn't get very ill until about two years ago...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
daise
Unregistered
posted
Welcome, jwick25,
You say you had a bulls-eye rash. That means the Lyme pathogen had entered your body. The bulls-eye rash was a reaction by your body to the Lyme pathogen.
I got a bulls-eye rash many years ago. Didn't know what it was.
Nine years later, SUDDENLY I had signs and symptoms: Bell's palsy, severe right side muscle pain, arthritis on my right side, cognitive symptoms (awful) and much, much more.
Essential: Go to www.ILADS.org, to the left menu, to "Treatment Guidelines," click that and it will take you to Dr. Burrascano's 33 pages of tips for 2005.
I suggest you print all of it. You might also print the ILADS Guidelines, above it. Turn and run from any infectious disease doctors: they do not take Lyme seriously.
You may post at another forum here for finding an LLMD who is also an ILADS doctor.
Proper treatment is prolonged, multiple antibiotics.
quote:Originally posted by daise: Welcome, jwick25,
You say you had a bulls-eye rash. That means the Lyme pathogen had entered your body. The bulls-eye rash was a reaction by your body to the Lyme pathogen.
Thank you all so much for sharing your knowledge and advice. To say I'd like to strangle the doctor who dismissed my rash picture is an understatement. However, I could strangle myself for not going to another doctor at the time. Regardless, I will certainly follow the advice that has been offered. I am seeking a nearby LLMD who I will see whether my tests come back positive or negative. I set up an appointment (early May was the 1st available) with a doctor in Jackson, NJ (Dr. E). If I find someone closer, I will do that instead.
Thanks, again, for all of the support. I have already learned a good deal from the wonderful people on these boards, and it is greatly appreciated!
I'll let you know what happens. Best wishes to everyone! jwick25
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
| IP: Logged |
daise
Unregistered
posted
You have an appointment with an LLMD. Great! It's in just a few weeks--that's record time.
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/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic