I currently live in San Antonio, TX, but I spent my entire childhood in Northern Minnesota and upstate New York.
I am 35 years old (but feel like I'm 80) and none of the doctors I have seen over the years have been able to tell me what is wrong with me. They will run a couple of general blood tests to placate me and then tell me there is nothing wrong.
I've been thinking I may actually have (late-stage) Lyme for a few years now because, after doing some research, I've discovered that many of my symptoms seem to be "classic" symptoms of Lyme.
I know that as a child, I received plenty of tick bites and honestly wouldn't have really thought much of it. I even specifically remember getting a couple of bites on my scalp where any target rash would have been easily overlooked.
However I am afraid to even try to bring it up to my GP or my Neurologist (I'm being treated for idiopathic hypersomnia) because I know they won't take me seriously.
I'm hoping you all might be able to help me find a doctor who won't treat me like a hypochondriac and who knows enough about Lyme that I can feel confident in their diagnosis if they eliminate the possibility or can confirm that it is Lyme and hopefully treat me.
Here are the symptoms that I have been suffering from for many years now (symptom list copied from another post):
1. Unexplained fevers, sweats, chills, or flushing 3. EXTREME Fatigue, tiredness, poor stamina 4. Unexplained hair loss 8. Unexplained menstrual irregularity 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur 18.Joint pain or swelling: frequent neck pain 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles (mostly near eyes) 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains (frequent tingling sensation in my fingers and toes as well as "electric shock" feelings) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity (increasingly frequent "aura vision" and blank spots in vision...as though there is a window shade pulled down about an inch in front of my right eye) 28.vertigo, poor balance 29.Lightheadedness, wooziness 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory (really bad!!) 35.Difficulty with speech or writing 36.Mood swings, irritability, depression (severe depression and recently diagnosed as bipolar) 37.Disturbed sleep-too much!!
These are all experienced frequently...I eliminated many symptoms that are only occasional.
Also I notice that over the past couple of years I have more and more frequent bouts of "the yawnies" as I call them. It's not a tired yawn, but more like a really big yawn that I get stuck in until my body feels like it gets enough air.
I don't know how to describe them any better, but they are completely uncontrollable and they are so big and last so long that they often cause horrible jaw pain. They are also physically draining...it feels like they suck the life right out of me.
I don't know if that is a symptom of Lyme, but I do know that they are very weird and very disturbing for me.
I'm so sorry this post is so long. I guess you could say that many years of pent-up desperation just came pouring out of me.
Any help or advice anyone could provide would be greatly appreciated.
I have a seven year old son that I desperately want to be able to play with and do other Mommy things with, but right now it seems like it takes everything I can muster just to make it through the work day.
Thank you, Rachel
Posts: 19 | From San Antonio, TX | Registered: Apr 2009
| IP: Logged |
posted
I got your PM. Thank you SO much for your help! I am so glad I found this site!!
Posts: 19 | From San Antonio, TX | Registered: Apr 2009
| IP: Logged |
posted
Hi, I'd love to get that list too. I just moved back to Austin from overseas and am desperately seeking a wonderful LLMD. Thanks for any help.
Posts: 29 | From Austin, TX | Registered: Apr 2009
| IP: Logged |
bettyg
Unregistered
posted
welcome to both anemone and addix!
sending pm to anemone w/texas/louisiana llmds check your profile above for this.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and near Seattle you also have some ILADS-member LL NDs (naturopathic doctors):
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007). . . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information. -===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present. ==========================
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. ===========
IP: Logged |
posted
i an also looking for a LLMD in Texas or Louisiana, any help would be appreciated. thanks
Posts: 57 | From Texas | Registered: Apr 2009
| IP: Logged |
bettyg
Unregistered
posted
jessie poster her own post; i sent info requested.
IP: Logged |
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/