posted
Hi everyone...for a couple of weeks I have been reading all of the posts here and I have finally decided to join and introduce myself.
I am a 34 year old registered nurse and I have been suffering from what "appears" to be Lyme disease. I have had to educate myself so much on all of my "misconceptions" of the disease when I started with symptoms about a year ago which include:
I had been tested for many things until I requested a lyme test even though I had not recalled being bitten by a tick...ironically, as I was sitting in the MD ofice discussing it with her, she spotted a tick crawling up my leg...what are the chances.
Anyway, my ELISA test came back equivocal and she had automatically run the WB at the same time which only came back positive for, you guessed it IgM 41. She has me waiting three weeks and wants me to be retested.
I am so sorry this is so long...I guess I just feel so alone in this battle. My heart is telling me it is LYME. But, at this point...no diagnosis...
Posts: 68 | From Massachusetts | Registered: Nov 2007
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Welcome to LymeNet. There are many people here who will help you and get you going in the right direction.
Why is your doctor waiting 3 weeks for retesting. Lyme is a clinical diagnosis ... you have many, far too many symptoms. Heck with the waiting ... find a LLMD and start treatment.
I'm moving this Topic to the Medical Questions forum. You will get a better response in that forum.
I suggest you post in the Seeking a Doctor forum if you need to find a LLMD.
Take care of you,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Welcome becky. Are you taking some antibiotics during that time period? Why is this doc waiting three weeks?
I'm sorry you are having some rather unusual symptoms that could be lyme related symptoms.
Is this MD what this support group calls lyme literate?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Was the blood test done by IGeneX? If not, you might want to run an IGeneX test without the wait.
As mentioned before, Lyme is a clinical diagnosis. As you know from your own misconceptions on the disease, it's unlikely that your MD will know the ins and outs of treating Lyme. I'd highly recommend seeing an LLMD.
Even if your MD is willing to treat, you will still want to at least complement that with an LLMD who is more highly experienced. If you had another disease, you'd go to a specialist .... you need a specialist for this one, too.
You might want to also look over the www.ilads.org website, particularly Dr. B's guidelines on treatment and diagnosis.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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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
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Thank you Map and Lou for your replies...no, I have not been started on any type of abx treatment...and for the reason she is waiting three weeks to be retested...your guess is as good as mine...the only thing I can think of is she is thinking it is early Lyme and she is hoping I will convert to positive with the next set of testing...ridiculous.
As for the unusual sypmtoms Map...from what I have researched...I have found that a lot of the research done our of Canada supports the nuerosensory symptoms such as the ear and eye pains and the low body temperature etc...it is odd though that those symptoms dont show up as much on the research I have found here in the U.S.
In addition to the symptoms above...I forgot to mention the knee pain I have in both knees.
Posts: 68 | From Massachusetts | Registered: Nov 2007
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I am really glad I decided to join this group...I already dont feel so alone!
Posts: 68 | From Massachusetts | Registered: Nov 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
becky, If I was you....I would make appt with this doctor now, tomorrow, this week and tell her you want to take doxy 300mg a day for the next 4 weeks. I suggested doxy because that's the abx that is in the docs big book for lyme treatment.
Wait for 11-14 days after your last abx day and then do another Lyme Western Blot. Really consider getting the next blood test supplies through the Ingenex lab mentioned.
I hope you are able to assert yourself and guide this doctor on how you want to proceed with your health and your life. Now the real story is that this equivical Elisha is really enough to proceed with the clinical treatment and suspicious lyme test you've already had done.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Absolutely get some HELP now, especially if you think this is early Lyme. Waiting can be disastrous.
It IS true, however, that early cases will show negative on the testing. She may be waiting for the antibodies to form.
However, you should be "waiting" while on antibiotics!!! Then go off for 2 wks and THEN test. Read the Western Blot link I provided. Everything is explained there.
I would REALLY respect an equivocal ELISA as they are notorious for showing negative!
posted
Thanks for the support...I just made an appt for tomorrow and I am going to push the issue...I'll let you know what happens!!!!
Posts: 68 | From Massachusetts | Registered: Nov 2007
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Greatcod
Unregistered
posted
Massachusetts is insane when it comes to a diagnosis of Lyme. The widespread influence here of the "bad guys", the IDSA, make a diagnosis of chronic Lyme very hard to come by. And if it is diagnosed, it will be hard to get the agressive treatment you need. You might think of getting in touch with a LLMD.
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posted
Yes, make an appointment now with an LLMD. It takes awhile to get in.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Becky,
Your symptoms sure sound like lyme. I had all of them, and a couple of others like tremors that you do not mention.
You have gotten great advice above; I started treatment over 15 months ago with 400 mg doxy/day, one-half in the morning and one-half in the evening. I had such a huge and fairly quick response to that, I knew we were 'hitting' something!
As you have probably read, the blood tests are very unreliable and biased towards false negatives. Despite two known tick bites, two bulls-eye rashes, symptoms and a great response to abx treatment, I never had a positive blood test. (although I did have a positive blood test for babesia, a common co-infection to lyme.)
Please get to a lyme literate doctor as soon as you can! Take care and keep us posted.
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
Glad you are here. I would see an LLMD asap. Time matters. Sooner treated, sooner well- I don't understand the re-testing -no point to that I can see- if she has other tests she is still running that makes sense- otehrwise- not-
What happened??!?!?! (Make an appt with an LLMD if it did not go well- don't waste more time!) Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
BECKY-
the people that posted on this thread are some of the most knowledgeable people about lyme in the US.
i know this sounds ridiculous, but trust me, they are.
in addition, i would humbly suggest YOU find a llmd, not this lady you are dealing with, and get on doxy NOW min 400 mg day until you can get testing, dx, and treatment worked out.
from you list of symptoms, it sounds like stage 3, so hopefully you know not to mess with that
it can turn from manageable to bed ridden over night, trust me, many of us had and have this experience.
lyme is one of the most horrific diseases known to man. get on abx NOW, see a llmd asap, and do away w the md. YOU need to take control NOW, and avoidm much further heartache.
good luck, take care
humbly,
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hi Becky! Welcome-
I am from MA too. You would figure that MAssachusetts being Number 4 (last I knew) in the country for Lyme, that we would have some kind of advantage.
Sadly we don't. You are lucky to be a nurse and know how it can be. You are in the right place.
I don't get why docs make people wait for abx-
Lets wait till your real sick and then try to fix you up. It is just plain DUMB.
Not sure what part of MA your from but I started a support group in Whitman a few months ago. The next meeting is 12/3 6:30-7:45 pm at the Whitman Library.
We are growing fast and we have a great group of people.
It is the only support group in Plymouth County.
Please do not hesitate to send me a private message, or email me at [email protected]
There is also a Yahoo group that is great and just for MA if you are interested in joining.
There is a great NSAID that I have been given for pain and it is great. It is Piroxicam (Feldene) taken once a day. I can barely walk with out it...
Maybe since you are a nurse you could call the doc and tell them you want to go on Doxy at least until the western blot comes back (even though it still could be neg)
Like others said 300-600mg Doxy per day. I started on 100mg TID
Well best of luck-
If you need anything please let me know! Melissa Posts: 3905 | From USA | Registered: May 2007
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posted
WOOHOO...so there are some PCP's out there that care!!! Mine did research and spoke with an old colleague in New York and decided she was NOT GOING TO WAIT FOR NEW TEST RESULTS!!! She gave me a dignoses of LYME today and started me on DOXY...
It's a start!!! She said we will go from here!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thanks everyone!!!
Posts: 68 | From Massachusetts | Registered: Nov 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
becky,
Welcome, glad that you got the abx!
also wanted to let you know that my body temp is consistently low ( 95.2-97.6 ). There are others here who have low body temps too....really not that uncommon.
Good Luck, Rhonda
Posts: 3975 | From usa | Registered: Aug 2007
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