posted
I know many of you are familiar with this story. I am tired to trying to figure out what's wrong with me and having docs just think it's depression, anxiety, lack of exercise. And the "chronic fatigue syndrome" and fibromyalgia labels don't help, most docs think "hypochondriac", and depressed and lazy. I have desire to do a lot with my life but am not ABLE@!#
So would a Lyme diagnosis be any different? Or if an LLMD did find one of those other tick/parasite infections. I can just imagine the docs saying oh, that's common, and thinking it doesn't have a lot of disabling symptoms, and still thinking I must be some anxious person if I sought out a diagnosis so much, and that I am depressed and want an excuse to be lazy. I mean it's something that most docs and people won't understand, so is there much point to getting that label put on me too?! If I managed to find a good LLMD and if I tested positive, which is a long shot.
Anyway I am not sure how far it's worth driving to see a good (referred from a good source) LLMD. I've driven to see other docs before, thinking it was important, only to be disappointed. If the doc were nearby I would do it. I do have doctors nearby I like who would probably put me on antibiotics or other things without having the diagnosis. And would probably order certain blood tests that I wanted.
It's kind of stupid but yes, I do kind of WANT to have some weird 'serious' diagnosis. Since I already have the symptoms. I know others have felt that way too. But I have exhausted most options I can think of. I've been thinking that I got sick due to a mosquito-bourne virus, but maybe there was a tick that had a nibble too.
-------------------- Sick since childhood, a long time ago. Posts: 15 | From Midwest | Registered: Mar 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome seeking...
You said.. "I do have doctors nearby I like who would probably put me on antibiotics or other things without having the diagnosis. And would probably order certain blood tests that I wanted."
If you start there... and educate yourself... and think you are getting better...
Go for it.
I am sure there are many who would beg for a chance to see a LLMD... but if you prefer to stay local... and teach your doctors... and they will learn and help you....
Good for you.
That said..
If I were just starting on this Lyme journey, knowing what I know now...
I would crawl to a LLMD if I had to.
But no one wants you to feel forced to go when you can work with a local doctor just as well.
If you do decide to go... I don't think you will be disappointed.
The ones I know are wonderful. You won't be treated like a dirt bag or made to feel like a worm.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with TC. If you can get to a real LLMD it will be well worth the drive. I drive 6 hours round trip and would drive there every day if I had to.
Most LLMD's wouldn't expect you to drive too far that often. Some every 2 months or even 3 months.
It's not like a committement for life to at least try a LLMD out. Why not go and just see if it's where you need to be?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
If it were me, I would go straight to the LLMD.
If you want, you could get your local Dr to order an Igenex western blot IgG and IgM, test #188 and #189....$200. www.igenex.com
Get a copy of the results and post them here...only on the Medical Questions board.
The overall interpretation can be negative (and that's all the Dr would probably tell you), yet you can have lyme. There are species specific bands that are indicative of lyme.
Lyme is a clinical diagnosis....made on the basis of your history and symptoms, and can be supported by labwork.
Lyme is never ruled in or out based on just a lab test....although the tests are done anyways.
Think about it, and read as much as you can from the sources recommended on this site.
Come back again and ask questions....we're all here to help.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Lyme disease treatment is very complicated, you don't want just any doctor treating you. If you really have no other choice then have whoever will offer to treat you, treat you. But, someone other than a person treating it regularly will not know all the things nesscary to give the best treatment.
Posts: 526 | From NJ | Registered: May 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lyme steals your life. It did mine. Took away my ability to work at a desk job F/T, go on vacations, do activities around my home, etc.
I say do WHATEVER is in your power mentally and financially to get the best doc you can. NOTHING makes up for experience. Most docs couldn't find their ### if they looked in the mirror. I learned this the hard way.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Hm, yeah. I know I will end up getting myself to a good LLMD sometime. This is a very nice community I always keep trying another thing when one fails. Just feels like maybe only 25% chance I have it. But maybe it'll be what I have, when all the others I was so sure of and I maybe don't have. My father was always so worried about ticks biting us, if we'd been outdoors, but I think there were plenty of times at camp or a friend's house when I wouldn't have been careful. In a way it seems extremely unlikely to NOT have been bitten by some ticks in all those years.
-------------------- Sick since childhood, a long time ago. Posts: 15 | From Midwest | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Seeking, you said: " I know I will end up getting myself to a good LLMD sometime"
Do you know that lyme and other TBD can paralyze or kill ? These are serious infections. If you suspect you may have a TBD, you owe it to yourself to take serious measures for the best diagnostician.
Radfaraf said: " Lyme disease treatment is very complicated, you don't want just any doctor treating you."
Precisely. No matter how brilliant or committed, you cannot possible educate yourself to the level necessary in the time necessary. You need someone who has successfully treated hundreds - or thousands - of other patients with a variety of tick-borne diseases (TBD).
In addition to TBD, there are several other chronic stealth infections that many LLMDs are familiar with.
Your regular doctors will not have the time to learn and they may be limited by the local or state medical boards. In my state, even if a doctor wanted to treat with ILADS guidelines, the state medical board would pull their license.
It may be better to keep the lyme friendly doctors as your support team but get the experts to fully assess, diagnose and design your treatment plan.
Please, if you can, get to an expert LLMD for a proper diagnosis and treatment plan.
Even if the majority of the medical community does not take this seriously, I urge you to do so. You've been ill for 24 years. Something is behind that and it's not just going to disappear on its own.
Best of luck at finding what you need to make the choices that will give you a chance at a future. It is possible.
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
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:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
i see our regulars have stopped to welcome you and pass along their wisdom to you! good; i sent you my welcome note in another post.
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I always keep trying another thing when one fails. Just feels like maybe only 25% chance I have it. But maybe it'll be what I have, when all the others I was so sure of and I maybe don't have. My father was always so worried about ticks biting us, if we'd been outdoors, but I think there were plenty of times at camp or a friend's house when I wouldn't have been careful. In a way it seems extremely unlikely to NOT have been bitten by some ticks in all those years.
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