posted
Hi, I have just found this forum and I have a - maybe stupid - question, to which I could not find an answer so far.
Is it possible to have Lyme Disease for years and not really know about it?
This is my situation: 7 years ago (and I can pinpoint the day) I worked outside (Southern California) and about 2 days later I started to have an unbelievable pain in one of my shoulders (joint). I have this pain on and off to this day, after x doctors, two physical therapies, one MRI, cortison shots and one chiropractor. I also experience fatigue, but probably from the pain.
I recently saw a documentary about a girl who had pain in her knees for quite some time and they finally diagnosed her with Lyme disease, this is why I even got the idea.
So, is it possible?
Thanks for any answer...
Posts: 4 | From California | Registered: Jun 2006
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posted
Its quite possible, however its strange that the only symptom you have experienced since then is a localized joint pain in your shoulder. It seems that this disease usually brings up a whole host of symptoms, especially over a 7 year time frame.
With that said I still think you should send a blood sample to a lyme reputable lab to make sure! this bacteria affects people in so many differen't and bizzare ways Posts: 170 | From Vancouver | Registered: Apr 2006
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posted
Thank you for your answer. The pain in my shoulder is arthritis-like and affects sometimes the whole right half of my body. The cortison shots had no effects and I think, the doctors started to believe it is psychological... the pain is very real, though, and over the counter drugs like Tylenol help (I got off Vioxx and Celebrex early enough...).
Posts: 4 | From California | Registered: Jun 2006
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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: 96239 | From Texas | Registered: Feb 2001
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi simba,
Yes, I think it's possible to have lyme disease for years and not know it. I had it for years and didn't know it, I thought many of my symptoms were normal.
Good luck to you.
Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
Thank you for the list. I am in the process of learning more and I checked the list and found about 15 items that would match. However some of the items in the list seem either very common or happen only very sporadically.
Does prolactin have any connection to Lyme disease? I could not find a clear answer.
Posts: 4 | From California | Registered: Jun 2006
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bettyg
Unregistered
posted
simba, on lymenet, there is NO stupid question ok! We were all newbies trying to figure out this awful lyme disease. Also use SEARCH at the top below POST REPLY ... it works very well.
Welcome to this 24/7 LYME support group board!
Before I forget about it, all PM, private messages go to YOUR HOME email address.. If you want to keep info, file it in your HOME FILE FOLDERS. Lymenet PM allows 60 notes only & they add up fast; so delete them promptly from lymenet folder.
Make sure on ``MY PROFILE'' you edit it to show you ALLOW PMs so folks can send you a private email vs. On public board. Also change the viewing notes to VIEW ALL NOTES vs. 30-60 days only. Very helpful when you do searches on specific topics.
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
Here is what I post for all on SSDI/SSI/LTD... I tried the link of the female MD ``template''; you are right; it's no longer good!
2 alternatives: use what I provide below as guidance since you have LYME disease and not filing for chronic fatigue.
OR go to the bad web site, click on REFRESH, and go to that site! Ask Mary, web owner, the question since she posted this on disinissues; SHE started that site! It was her close friend who okd to post her info for others. Betty Gordon
TRYING TO GET SSDI, SS DISABILITY INSURANCE BENEFITS OR LTD:
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!
\============================================= What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs, etc. It's critical that you KEEP A COPY FOR YOURSELF! ================================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them! Look & read only the secretative ``RFC & MFC'' done by the the in-staff DDS DRS & PSYCHOOGISTS!
You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
NOTE: I'D DO THIS DIFFERENTLY NOW!
SEND 1 COPY TO ALJ and 1 to your lawyer! Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info! Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist....the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!
================================================== IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS ========================================================= This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.
There are many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
BETTY NOTE: Look at the female MD''s DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future! NO LONGER GOOD 5-17-06: http://www.cfids-me.org/socsec.html
These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS may apply to your medical condition.
The Welcome Message and Group Guidelines are also in Files, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address." Contact the moderators at [email protected] or for AOL subscribers: Click here -----------------------------------------~--> Disinissues website - http://groups.yahoo.com/group/Disinissues
DO NOT FORWARD ANY MESSAGE FROM Disinissues WITHOUT PRIOR WRITTEN PERMISSION FROM THE AUTHOR Do not distribute any member's email address.
NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE--------------------------------------------~-> Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Disinissues/ To unsubscribe from this group, send an email to: [email protected] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
************************************* An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet.
I too plan on including this info when I send my FINAL packet of info to chief ALJ before my June 16, 2005 hearing...my last chance! =======================================
Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also.... bettyg, Iowa
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posted
I think I've had Lyme for years.I live in a hot spot for it and have had several bites that I know of, but it is only in retrospect that I believe it so and my symptoms were very few.
Mostly S/I joint pain and though I'd struggled with back issues for years they were never there. Also, it seems like my body would "over-react" to muscle strain. What might be a slight soreness from a physical exertion would affect me as a much more significant soreness.
Also, around my period, I'd start having swollen glands under my arms and feel like I was getting a cold, which would never come.
I suspect I've had Lyme a long time, though of course, there's no way to know....
Posts: 175 | From ma. | Registered: Aug 2005
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posted
Thank all you guys for your answers and extensive information. I will go through all this as fast and thoroughly as I can to at least be able to show up at the doctors and provide him with a few information as well...
Posts: 4 | From California | Registered: Jun 2006
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posted
simba....I was in a hurry earlier and didn't mention that I had Lyme for 42 yrs before being dxd 6 yrs ago. I had been previously dxd with fibromyalgia.
Betty....if you'll erase some of those dotted lines, the thread won't be so wide.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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