Hi everyone, I was wondering if anyone has some advice for me. I read a magazine article about chronic lyme disease several months ago, and was shocked by how many neurological symptoms I have of the disease. I went on a camping trip in 2000 and remember ending up about a week or so later having a bulls-eye rash on my right shin. I had no insurance at the time so I ignored it thinking it was a spider bite. I started having night time hallucinations several months later, and have had many symptoms since. The most profound ones I can think of right now are brain fog, sensitivity to sounds, light, and motion; episodes of depersonalization and dissasociation, tingling and numbness on my face (centered on the nose), and sometimes severe mood swings. The night hallucinations are really bad, but they come and go. Also, my symptoms were the most severe during my three pregnancies. I went to my doctor with my suspicions and she looked at me like I was a hypochondriac. She tested me and I had antibodies but in the negative range. I've read some information that says that lyme hides in the cerebrospinal fluid and can be undetectable by the standard tests after having the disease for a long period of time. I've also read other articles that say chronic lyme is a myth. My doctor said I have a problem with anxiety and she prescribed Lexapro. I took it for about a month and...um...couldn't have an orgasm, so I dropped it like a hot potato and opted for St. John's Wort, yoga and meditation instead because nothing could cause me more anxiety than not having an orgasm, haha! So my question is, am I nuts, or could I still have lyme? If so, how can I get a diagnosis and get my doctor to take me seriously? And if I need further testing, how can I get my insurance to pay for it? Are there any resources in southern California that I can utilize to get help? Thanks, Jenn
Posted by adamm (Member # 11910) on :
It's DEFINITELY Lyme, I'm sorry to say. The bullseye rash is
diagnostic, and, yes, the tests are crap. God--I'm so sorry that
this happened to you. Post in seeking a doctor and check out
the Lyme DIsease Association's referral database to find
a the closest physician who is a member of the International Lyme
and Associated Diseases Society, as these are pretty much
the only doctors who know how to effectively treat the disease.
Posted by webmeg (Member # 13647) on :
Hi Jenn,
Welcome - nice post, good details.
The bulls eye rash, which most do not get, is definitely Lyme. And the body doesn't get rid of Lyme on its own, however the immune system can keep it in check sometimes, meaning you can be subclinical for a while.
When this happens you may have mild symptoms that come and go. But some kind of stressor, like pregnancy, an illness, family issues, can let the Lyme really let loose. Eventually it comes out to rear its ugly head.
You have a lot of classic symptoms. I noted the "numbness on the nose" - I totally get that! The top of my nose kind of feels sunburned sometimes, taught? Annoying. I get scalp numbness in places, too - numbness, twitching and vibrations were a big thing with me when Lyme started to surface along with anxiety and mood swings.
Anyway, you need to find a different doctor - ideally an LLMD. Your current doc will likely not help you as he/she is standing on the other side of the fence on the Lyme issue.
I always wonder what a doctor like that will do one day when they are bitten by a tick and get very sick...
You can go to Finding a Doctor on this forum and post the area you live in and someone will help you find some doctors.
Order an IGeneX test for Lyme and have that done. You can take those results to your new doc.
In the meantime, despite what your current doctor says, you need to INSIST on a prescription for Doxycycline for at least 6 weeks just to get you started (I'm having good luck with 300mg/day).
Every day that goes by is another day that Lyme is getting deeper into your system. If they won't give you Doxy, go to a walk in clinic and say you had a bulls eye rash last week that faded and now you realize it was Lyme. Get some Doxy from somewhere!!!!!!!!!
Do not stop pursuing this - you are on the right track!! It may take a long time to get better so be realistic there.
Hugs,
~webmeg
Posted by justwondering (Member # 12813) on :
I have heard this story so many times...
people who know they have lyme, but then are brainwashed by their doctors into thinking
they do NOT have lyme, either b/c they took a short dosage of med when they first contracted it
or b/c "lyme just doesn't cause chronic symptoms."
i am not saying ignore every medical doctor, but you will undoubtedly come across many who will try to convince you that you do not have lyme disease.
please, please find a good llmd who believes in you and respects you.
we naturally want to believe our doctors and often take to heart what they say, especially when we are made to feel like hypochondriacs.
keep searching for answers! hang in there!!
Posted by daise (Member # 13622) on :
Hi Jenn,
Welcome!
Yes it does sound like Lyme disease. _________________
You wrote: "The most profound ones I can think of right now are brain fog, sensitivity to sounds, light, and motion ... "
_________________
Yes, there are many, many here who can totally relate, including me.
I agree with the others. Stay away from infectious disease doctors as they don't take Lyme disease seriously.
___________________
webmeg wrote: "Anyway, you need to find a different doctor - ideally an LLMD. Your current doc will likely not help you as he/she is standing on the other side of the fence on the Lyme issue.
I always wonder what a doctor like that will do one day when they are bitten by a tick and get very sick..." ___________________
What will they do! Or if their kids get it ...
Jenn, Lyme disease is common!
Look for an LLMD (Lyme-literate MD) who is also an ILADS physician.
I recommend you go to www.ilads.org, and click on the left menu for "Treatment Guidelines." That will take you to Dr. Burrascano's 33 pages of tips for 2005. Print that out: tons of excellent information.
Within that are 3 pages of a written screener. You could fill that out and show it to doctors / the insurance company / all relevent parties. Plus, type a list of EVERY sign and symptom.
If you need state Medicaid, you are welcome to send me a private message. See the little envelope icon at the top of this post--to the right of my name a few inches.
Sounds like you had the ELISA test (Lyme titers test.) That's bogus and can be used by an insurance company to deny benefits.
I just posted insurance information on this forum called, "When Your Insurance Company Won't Pay."
There is lots of information on insurance in the newbie information which BettyG will email to you, if she hasn't already.
Use the "search" near the top of this page. Type in "insurance" for lots of information.
Most LLMD's don't take insurance. But please don't be discouraged. Perhaps an LLMD can recommend treatment and a local doc can administer it. That's what I did for the first 9 months and it worked out very well.
I got a nurse case manager with the insurance company, also called a care coordinator. Look in your insurance booklets.
If you are told chronic Lyme disease doesn't exist, well, that's normal for we Lymies, but be persistent.
A nurse case manager can open doors. They are on your side--that's their job. They can arrange for testing by Western blot (although most with chronic Lyme don't test positive.)
Testing is a problem for many: As a result, Lyme disease is a clinical diagnosis.
Western blot testing: your blood is drawn locally and sent to IgeneX lab in Palo Alto, CA. Your nurse case manager can set that up.
A CD57 test is a screener for Lyme (and some use it to gauge treatment.) I tested negative three times by western blot, however, I tested very positive by a CD57 count.
That's the only reason I got treatment paid for.
Does your state have a state insurance board with an outside appeals system? That can be extremely helpful.
Most conventional docs balk at the mention of Lyme. They make you feel like it's all in your head. Make you feel stupid. We call those "ducks." Quack!
May I recommend the book, Coping With Lyme Disease, by Denise Lang and Dr. Kenneth Liegner. Maybe it's at your library.
Come back! Post your questons.
Lymeland is information overload!
I wish you the best.
daise Posted by Lymetoo (Member # 743) on :
A bullseye rash is diagnostic of Lyme. Period. Please go to Seeking a Doctor and find an LLMD in your area. You may have to travel.
This is nothing to fool around with. We're glad you found us!!
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Posted by Aniek (Member # 5374) on :
Check out the support group links to the left. CA has a number of support groups.
Posted by bettyg (Member # 6147) on :
welcome jenny, glad you found us!
WELCOME, would you like a copy of my newbie package of 112 pages info galore includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 of 112 pages since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain thigns: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR, no infrared SUNGLASSES, etc. and how to use this board!
if yes, please send me a PM, PRIVATE MESSAGE, it's 2 people standing together icon asking me to send it to you. i will send within 1 day of receipt of your pm; thanks
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