posted
I'm trying to assess whether or not I have Lyme. I realize that the rash does not occur all the time (I've heard everything from 10-90%). I also have the impression that assessing whether or not you have Lyme is currently symptom-based, as testing is still very sensitive and largely inaccurate. Am I on the right track so far?
I need to assess whether or not I currently have Lyme. Since someone suggested the possibility to me last Saturday, my symptoms have gone from mild to intense. I am a very anxious person anyhow. And so, I want to sort some things out before I have a nervous breakdown. I was paranoid about my body long before this, and sooner or later I have to pull myself together and start living again.
1). There has to be ONE symptom that every Lyme patient gets, or at the very least a few symptoms among which all Lyme patients have one or more. For example, is it reasonable to say that 100% of Lyme patients at least have the rash, noticeable fatigue, or some sort of unexplained, ongoing ache or pain? Again, not ALL of these things, just one of them.
I also read in the "When to Suspect Lyme Disease" essay that the vast majority of Lyme patients have some sort of inflammation in the tibia bone. In other words, pain will be felt when pressing your thumb against this bone. Is that true?
Because if what I'm mentioning here isn't true, you see, I'm left with the impression that I should suspect Lyme Disease every time I have a headache, or a cramp, or my heart skips a beat, etc.
2). Most people by now are aware that the advice of "Natural Cures Man" Kevin Trudeau is to be taken with a grain of salt. One of his many, arguably ridiculous claims is that antibiotics are basically poison. He claims that there are purely natural alternatives to treat Lyme Disease. If this is true, why is it that I've been doing nonstop research on LD for days and his book is the first time I've heard of such treatment?
3). Outside of endemic areas, what is the approximate infection rate of these ticks? Is 5-15% a reasonable estimate?
Thank you for helping to clear some of these matters up.
Posts: 6 | From California | Registered: Jul 2006
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4). I realize that only a minority of Lyme patients remember being bitten by the tick. This is because the nymphs are small and they secrete a mild anaesthetic. However, when that anaesthetic wears off, wouldn't you feel an itch like you would with a common mosquito bite?
Posts: 6 | From California | Registered: Jul 2006
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posted
I am not sure there is one symptom that every lymie gets. It is more a matter of assessing the pattern of the symptoms you have. Are they multisystem? As in neuro, joints, etc. Some people seem to have a primarily joint disease, with neuro showing up later or not at all. Others are the reverse. Some lucky people get the whole shenbang. Think it might have to do with the length of time since the tickbite, without treatment, and what other germs you get from the tick.
BTW, CA has some good support groups and will be able to answer your questions re tick infection rates. These can be quite high in some parts of the state.
Posts: 8430 | From Not available | Registered: Oct 2000
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I was the one who responded on your other post that I have a friend whose daughter was bitten in Riverside and I was bitten in San Diego, so you are right to be concerned about Lyme.
I do not know of one symptoms that every single Lyme patient gets. When I went to see the Lyme doctor after 18 months of deteriorating health, he didn't think I had Lyme because I did not fit the typical picture. After my tests came back positive for Lyme and coinfections, and I started getting better on antibiotics, he said it never ceases to amaze him how Lyme presents differently in each patient.
So beware of generalizations.
See the newbies link on this website.
Go to www.ilads.org which is the International Lyme and Associated Diseases website for information on the diseases and the testing.
There are few Lyme doctors in this country. Many have waiting lists of months to get in.
I would recommend that you get a referral and make an appointment TODAY! By the time you get in to your appointment, you will have had plenty of time to read up on the disease.
You are fortunate to live in a part of California where there are several Lyme doctors. Most people have to travel great distances. At least get an opinion and get the testing started. Every day you wait could be another day that the bacteria replicate.
If you don't have Lyme, you'll be out a few hundred dollars in doctors' visits and tests and a little time, but you will have peace of mind.
There are non-antibiotic approaches to dealing with Lyme. Some people on this website use these approaches and discuss them. There are entire yahoo group websites dedicated to an individual non-antibiotic Lyme approach.
Do not feel that you have to make a decision about your treatment right now. Just get diagnosed!
Even those of us who have been in treatment for quite a while try different approaches - it's a constant learning, trial and error, whatever. It's not like you have to make one treatment decision now and stick with it forever.
I am very open to alternative medicine. I cured myself of chronic fatigue syndrome doing those. But I'm using antibiotics and other approaches for Lyme. I was near death by the time I was diagnosed. This is no time to waste time.
And Kevin Trudeau is a marketing guy who has been shut down by the FTC. That doesn't mean he doesn't have anything to offer. But I would not hold off on seeing a Lyme doctor because of him!
I'm sorry to sound tough on you. But I wish someone would have helped me in the early stages. It would have changed the outcome dramatically.
You are smart to have turned here for help. There are wonderful people on this board who will go out of their way to give you referrals, etc. And feel free to go to the CaliforniaLyme yahoo group for additional help and doctor referrals.
Riversinger, the woman who offered to give you the name of a Lyme doctor, is an excellent resource. Please listen to her.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
"I have heard that the odds of contracting Lyme Disease here are very slim."
If I had a nickel for every time .............. well anyway ...............
My comments below are in regular type ... your original in bold ......... I'm trying to assess whether or not I have Lyme. I realize that the rash does not occur all the time (I've heard everything from 10-90%). I also have the impression that assessing whether or not you have Lyme is currently symptom-based, as testing is still very sensitive and largely inaccurate. Am I on the right track so far?
I need to assess whether or not I currently have Lyme. Since someone suggested the possibility to me last Saturday, my symptoms have gone from mild to intense. I am a very anxious person anyhow. And so, I want to sort some things out before I have a nervous breakdown. I was paranoid about my body long before this, and sooner or later I have to pull myself together and start living again.
1). There has to be ONE symptom that every Lyme patient gets, or at the very least a few symptoms among which all Lyme patients have one or more. For example, is it reasonable to say that 100% of Lyme patients at least have the rash, noticeable fatigue, or some sort of unexplained, ongoing ache or pain? Again, not ALL of these things, just one of them. Well from reading this board for over 2 years I would say there is not even one that everyone gets. Common are muscle aches, fever, neuro problems, joint aches, buzzing, numbness and tingling ...........
I also read in the "When to Suspect Lyme Disease" essay that the vast majority of Lyme patients have some sort of inflammation in the tibia bone. In other words, pain will be felt when pressing your thumb against this bone. Is that true? I haven't heard of this ..... doesn't mean it isn't true.
Because if what I'm mentioning here isn't true, you see, I'm left with the impression that I should suspect Lyme Disease every time I have a headache, or a cramp, or my heart skips a beat, etc. Well, not really. Lymeis bing sick and not feeling well much of the time. True it can come in spurts. But we are not talking "normal" aches and pains here and there.
2). Most people by now are aware that the advice of "Natural Cures Man" Kevin Trudeau is to be taken with a grain of salt. One of his many, arguably ridiculous claims is that antibiotics are basically poison. He claims that there are purely natural alternatives to treat Lyme Disease. If this is true, why is it that I've been doing nonstop research on LD for days and his book is the first time I've heard of such treatment? There is also "Healing Lyme" by Stephen Buhner. Some here are on this protocol. Thee are many approaches. Most believe antibiotics are at least part of every treatment.
3). Outside of endemic areas, what is the approximate infection rate of these ticks? Is 5-15% a reasonable estimate? Really depends whos infoyou read. The answer to this is all over the board.
Thank you for helping to clear some of these matters up.
GMayne Member # 9579 - posted 07-11-2006 06:31 PM Ah, one question I forgot:
4). I realize that only a minority of Lyme patients remember being bitten by the tick. This is because the nymphs are small and they secrete a mild anaesthetic. However, when that anaesthetic wears off, wouldn't you feel an itch like you would with a common mosquito bite? Not usually ........ I didn't.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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bettyg
Unregistered
posted
GM, since you have private messages disabled and I can't send you a PM, I'll copy/paste my NEWBIE links to visit below. At the very end is the very long list of ALL lyme symptoms. I would like to suggest you change this; you can always block any offending member.
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.
Also if you get a SUPER WIDE post, go to the BOTTOM of the screen. Look to the left hand side and chose PRINT FRIENDLY VIEW or it's worded something like this ... on the same line as GO TO ______ section ...medical or general, etc. Carol in PA passed this along to me. I use it daily now
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!
============================================ This message is sent upon subscription, and again monthly.
There are many more links, as well as advice and "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
The website provides compilations 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, chronic fatigue syndrome, may apply to your medical condition.
The Welcome Message and Group Guidelines are in the Files section, 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."
Please let the moderators know if any links have changed.
Contact the moderators at [email protected] or for AOL subscribers: Click here
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 ************************************* 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.... ********************************* Lymeneter Kay found this list of symptoms at http://www.lymediseaseaction.org.uk/symptoms.php It says it all:
Tick Borne Disease - Symptom A to Z Lyme Disease is systemic, it can effect the whole body. This page lists the possible symptoms.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi GMaye
I would say the most common thing about Lyme and co infrctions are--
People go from feeling Good to Very sick Quickly--
From the time I was bit to the time I knew there was something Serious wrong with me was maybe 6 weeks or less --
Once it got going --It was non stop
I saw my Lyme Bullseye bruse-- but did not know what it was--
I was bit 2 years after I moved to Austin TX --No Lyme around here--
If regular doctors cant figure out what is wrong with you and you have some of the symptoms -- it could be lyme and or co infections--
Realize that the tests that are now avaiable are Very Poor at best-- To many things can sque the results--
My lyme bruse did not itch or hert-- It was Big on the back of my leg and almost missed seeing it--
Luckly after being Very sick for 18 yrs and getting no help from doctors I saw a TV show on Lyme -- Changed my life--
As far as ABX being poision-- Sure they are -- They are supposed to Kill the bugs and do as little damage to you as possiable-
Around 70 percent of meds are made from plants (herbs)
Even natural herbs work in the same way-- they are poision also --
If you think you may have lyme ect-- Take it Serious -and get help--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
GMayne
You have to trust your instincts also. When I look at the list Betty posted it is so overwhelming but there are four of us in my family (maybe 5) who have all different symptoms....but they are on that list.
For me.... my symptoms really would come and go...I'd have a day with some sharp ear pain and then a week later sharp, sharp shin pain but I had such difficulty with spelling and I could no longer read. These were daily symptoms/not sporadic.
Like I said my sons and hubby all had different symptoms.....not too many in common.
My advice: don't just think you are imagining or being talked into feeling a certain way by the power of suggestion. You have been given good advice and have an established, active CA support group to turn to. Let us know what steps you take.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Great A to Z list!
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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