And it's nt just Lyme. The US is failing in health care at an astonishing rate, and cost.
Why are you even going to an ID MD???
quai
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
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geniveve
Unregistered
posted
it's a long story but my primary and husband are giving me fits. i went to a llmd but it didn't work out.
i need reconfirmation. someone else has gone to her and had good results with her so i'm hoping i will too. i can't go into details but i need a new llmd.
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posted
I saw 15+ doctors in 6 months - I was unrelenting in my search...I knew I was sick...the M.D.s really loved me
In the fifth month of my search I got stuck in a different state at my Mom's house. Her dog was very ill and had a seizure while I was there.
We had to take him in...put him to sleep.
Moments after saying goodbye to my Mom's dog the vet looked at me and said with great conviction - You have Lyme disease...he had only met me once before.
I had bruising all over my legs and a little dot rash around each bruise - I had lost thirty pounds - He said I have seen it in my collegues and I know what it looks like.
So a veterinarian without asking me one question or taking one vital sign knew what was wrong with me...but 15+ doctors didn't.
Only one suspected who works at John's Hopkins - but the Quest results were negative. He knew too as he gave me a clinical diagnosis and told me to search for a specialist once I got back home.
So it is just crazy!!!!
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
Ironically, the only LLMD in my area happens to be an ID, and he is terrific. All I can say is keep the faith, and hope he will be the right one!
Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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posted
The ID doctor I saw at the beginning of my journey with four positive bands, said my problem was psychaitric.
The first LLMD I saw laughed and said he has heard this all of the time. ( I consult 2- I'm really bad and geography has to play in my equation)
Perhaps, if ID doctors did not use the CDC criteria as absolute diagnosis and were knowledgable about coinfections, quite a few of us would not be in this boat.
Perhaps, if ID were LL, the controversy in two standards of care would not exist. Insurance would not fight us and doctors would not be persecueted on their licenses and treating lyme patients.
Just a thought..... I would find a LLMD before going to an ID doctor first.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
Unfortunately there aren't many LLMDs out there seeing new patients so it isn't easy to find anyone BUT an ID. I am lucky in that my internist has a desire to become knowledgeable about Lyme and actually diagnosed me with chronic Lyme.
I am still seeking a second opinion (not that I don't trust him, but he is not the most experienced yet), and cannot find an LLMD in the populous area of D.C. who will take new patients!
I understand some of these folks' need to see SOMEONE/ANYONE who MAY understand their plight and maybe get lucky that they will not be a "duck."
Posts: 331 | From virginia | Registered: Nov 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I met someone who had an ID duck tell her that her lyme disease came back just a little positive, so it's not lyme. I told her that's like being alittle pregnant. Either you are or you're not.
ID's just seem to be so closed minded in my experience. To those that have an ID doc and are getting good care, that is the expection and not the rule.
I think it's must be the system that they follow and are not being taught and experienced in vector borne illnesses.
I guess the day lyme get the publicity that West Nile has been getting the last 3 years, everything will change. Let's hope so.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I guess that you are right about LLMD and ID. Sad statement to think that LLMD are so overwhelmed with number of patients to care for that they can't take any new ones.
So, what does that say about lyme disease? I guess we must be more numerous than the general public thinks.
Posts: 719 | From Delaware | Registered: Jan 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Because when it comes to Lyme disease, here is their mantra.
Notice the CDC likes it so much it's linked on their website.. The IDSA Practice Guidelines for the Treatment of Lyme Disease.
There might be a few good ID docs around but it sure isn't because they're following THESE guidelines.
posted
To be fair, I don't think that being a infectious disease doc equates to being the worst kind of physician for Lyme patients.
It really just boils down to whether or not the doctor has taken the time to learn about Lyme disease to become Lyme literate.
Most doctors, whether they're in internal medicine, neurology, emergency medicine, infectious disease etc., know little to zilch about Lyme.
BUT there is at least one infectious disease doctor I know of that is an LLMD.
So it's really about whether or not the physician has taken the time to educate themselves.
If the LLMD happens to be an infectious disease doctor, try to give him/her the benefit of the doubt.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
Given that Lyme disease is the fastest immerging INFECTIOUS disease in this country, I can't excuse ANY ID doc their ignorence.
Maybe this is just the end result of our incredibly screwed up medical system?
I had an ID at Lahey Clinic in Boston tell me that Babs would clear up on it's own.
I later found out that a friend of mine's brother in his 30's and in good health, died from Babs very quickly.
Posts: 175 | From ma. | Registered: Aug 2005
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Foggy
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posted
It's not the duck per se, but the pond that they swim in. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I also noticed that there seems to be a lot of negative comments regarding ID docs and felt apprehensive about seeing an ID doc for the first time last month when my family doc referred me to him.
So I was prepared to ask him a lot of questions regarding lyme disease. To my surprise (or not so according to others), he waved away any mention of lyme disease as if it was a bunch of hogwash.
Needless to say, when my family doc received the diagnosis report from the ID doc, it stated that I do not have lyme, but rather that I have chronic mono. Go figure?? Last time I had mono was way back in 1982...hmmph! I was like in disbelief, "Yeah right, chronic mono causes me to have all these miserable joint pains, eh?!!"
I was supposed to go back to see the ID doc again yesterday, but after I learned the diagnosis from my family doc last Monday, we decided it was best for me to cancel the appt and any further visits.
Posts: 90 | From Maryland | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Foggy-
Really funny and good analogy about the pond
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Perhaps they are ignorant or perhaps some have been told it's an untreatable disease (at least with conventional antibiotics alone). KEEP OUR SUPPLEMENTS FREE! sorry about that outburst if they are ignorant on borrelia they are ipso facto (is that a word?) also ignorant on disease. funny stuff.
Borrelia burgdorferi persists in the brain in chronic lyme neuroborreliosis and may be associated with Alzheimer disease.
University Institute of Pathology, Division of Neuropathology, University Medical School (CHUV), 1011, Lausanne, Switzerland. [email protected]
The cause, or causes, of the vast majority of Alzheimer's disease cases are unknown. A number of contributing factors have been postulated, including infection. It has long been known that the spirochete Treponema pallidum, which is the infective agent for syphilis, can in its late stages cause dementia, chronic inflammation, cortical atrophy and amyloid deposition. Spirochetes of unidentified types and strains have previously been observed in the blood, CSF and brain of 14 AD patients tested and absent in 13 controls. In three of these AD cases spirochetes were grown in a medium selective for Borrelia burgdorferi. In the present study, the phylogenetic analysis of these spirochetes was made. Positive identification of the agent as Borrelia burgdorferi sensu stricto was based on genetic and molecular analyses. Borrelia antigens and genes were co-localized with beta-amyloid deposits in these AD cases. The data indicate that Borrelia burgdorferi may persist in the brain and be associated with amyloid plaques in AD. They suggest that these spirochetes, perhaps in an analogous fashion to Treponema pallidum, may contribute to dementia, cortical atrophy and amyloid deposition. Further in vitro and in vivo studies may bring more insight into the potential role of spirochetes in AD.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
ID I have met qualifies as 'evil'.
He is familiar with Dr. Burrascano reports but choose to negate LD for the sake of his career in medicine. He was very open about it.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
True humanbeing, Lack of reputable test gives IDs option to choose if LD is real or not. And they choose the easier and cheaper option of negation.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Of all the possible reasons for the outrageous denial by the "so called" medical professionals concerning Bb $ Co., I always come back to the same thing. Past misdiagnosis that have contributed to the destruction of patient health and lives. Do you really expect them to admit serious mistakes like these?
Posts: 33 | From Oregon | Registered: Sep 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Bugmenot, I agree with you! The liability would be enormous. For example, I have 3 leaking heart valves and 2 heart conduction disorders, as well as brain damage in the "severe" range, because of being misdiagnosed twice in the 20 yrs. it took to finally get dx'd with Lyme. Multiply that by many thousands of cases like mine.....need I say more. Always look for who stands to lose money when seeking answers to injustices. Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Hey Foggy, Thanks for the laugh. I needed that. Laughter is soooooo healing. In greatfulness. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by Healing in Santa Cruz: Hey Foggy, Thanks for the laugh. I needed that. Laughter is soooooo healing. In greatfulness. Joyce
Amen Healing and 5Dana! The Patch Adam's effect is essential. If not for the laughter, I'd have never made it through the long road of recovery.
BTW: I think I just stepped on a duck. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Not all are bad. My well-known LLMD is ID.
Posts: 2275 | From NC | Registered: Oct 2000
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posted
A year ago, I would have been right with the majority of you in dissing my ID. Though he treated me for Lyme, and meningitis, and encephalitis, he still had enough doubt to run blood tests every freaking day for a month.
Over the past year, he's picked up a handful of other LD sufferers, and continued his research into the disease. (He always had something (for me) that he'd read on sites like this during my initial treatment.)
I had my first appointment in over a year with him last week, and he's impressed me with his knowledge, understanding, and admittance that LD is a clinical diagnosis. He's very concerned for my well-being.
He is driving me a little crazy with his requests that I go to more and more specialists, but he genrally cares... I vividly remember him sitting next to me in the hospital (last year), and telling me he's doing for me what he'd do for his own sister.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
Many times, the lyme bacteria lowers the immune system to the point that something like mono ( EBV virus) registers positive.
Therefore, you have had an exposure to mono somewhere in your past: the lyme is making the titers for mono shows as if they are an active infection right now.
once again, the ducks don't know this, the lyme patients do.
I will try to find some literature for this.
Posts: 719 | From Delaware | Registered: Jan 2006
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quote:Originally posted by klutzo: Always look for who stands to lose money when seeking answers to injustices. Klutzo
In regards to borrelia we need to think careful as to who is the cause of "injustices" or "crymes". (Y is a usenet joke). As the pubmed post above suggest when we talk about "lyme" disease we are in a sense talking about disease in general. We now know Alzheimers , ALS , etc in all probability has borrelia invloved.
If you're the government what do you do next? If you announce it, you'll have a mass rush of thousands upon thousands for abx which would quickly make them useless if not harmfull. Tough situation.
Are there people to blame for all the #%$@ we've gone through? imo yes, but this might be more appropriate in the activism area.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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posted
The doctor who orginally DX.ed me was a ID doctor
I would have never thought about Lyme--I was lucky that he figured it out--otherwise I would have just progressed along---and most likely been given the "Thrash Can" DX of MS
I say that because I know many of the posters here knew what they had before the doctors did--and searched out an LLMD for themshelves
Interesting story:
I was on LTD( Long term disability) some time ago--and was sent out to an IME by UNUM --to an ID doctor in Dallas
A sad thing to note---with the leaving of another LLMD in Texas---but this guy did know quite alot about B.B---and did not want to treat it---and told us point blank why:
He was busy enough trying to stay abreast of all the developments in AIDS--Lyme is just as complex--and required almost double the time and commitment of the average AIDS patient( these days)
Insurances do not even begin to cover the needed treatments---and getting the patient started on IV ABX, and then having to "Pull the plug" due to insurance refusal of payment--can be worse than no treatment at all ( this is his opinion--I am just repeating it)
Concern about clinical dx's--but not for the reasons typically thought---He stated that Lyme can also mimic other serious infections, and with the problematic testing---you could think( clinically) that it's lyme--and it could well be another,just as serious zoonotic--and they all require different types of ABX, ect.
If you don't really have a clue to what you are treating--but you suspect some sort of pathogen like lyme----throwing multiple rounds of ABX over and over again at the patient--with little to no sucess---can create resistance in other pathogens that may be aquired along the way--as well as causing re-activation of latent pathogens
My husband attended the IME appt. with me---and per Texas law--one person can be taping the whole conversation at the IME ( BTW, That means Independent Medical Examination) So He wore a "Wire" thru the whole examination.
So we have this all on tape--pretty interesting, huh?? I wonder if/when they get more accurate testing---will the ID doctors be jumping on the bad-wagon---trying to treat us due to the money to be made on us lymies??? ( due to it being the fastest growing infectious agent in the USA--I'm not suggesting greed here....)
PS, the ID doctor did find me disabled from the lyme and it's symptoms--much to the disenchantment of UNUM.
He also made some pretty interesting observations regarding other areas of my health---which later proved to be correct.
Posts: 468 | From USA | Registered: Jul 2003
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Many times, the lyme bacteria lowers the immune system to the point that something like mono ( EBV virus) registers positive.
Therefore, you have had an exposure to mono somewhere in your past: the lyme is making the titers for mono shows as if they are an active infection right now.
once again, the ducks don't know this, the lyme patients do.
I will try to find some literature for this. ----------------------------------
As I mentioned earlier, I did have mono years ago while in high school. Then nearly 3 years ago when I became so sick and just crashed, my doc dx me with EBV and told me to take it easy for a while, reduce my stressful life and avoid going back to work.
At that time, I was working for a school, and luckily for me it was like a month left until school was out for the summer, so I had a summer break to recover.
By August, when it came time to consider going back to work, I was hardly much better and was NOT ready to go back to work.
Doc said I should be feeling better to go back by then, but I wasn't... thus getting a bunch of other tests for sleep disorders, ongoing sinus infections and chronic fatigue, leading to other docs dx me with mild sleep apnea and some sort of (borline) narcolepsy, etc.
2 1/2 years later after I'd crashed, my doc finally dx me with "false neg" LD, which was recent Dec. My brain fog is not as bad, only occuring whenever I overdo things on some days, when I am really tired or feeling stressed-out.
On the other hand, joint pains which started in my knees gradually became more common and would pop up periodically, until last summer when it just became constant pain alternating in various parts of my body with very little relief in between.
So when that ID doc I'd seen recently told my doc that I had chronic mono...I couldn't help but hit the ceiling about this ridiculous dx. Who wouldn't, smile.
Anyway, I'd appreciate it very much if you have more info regarding the EBV popping up as an active infection exacerbated by lyme. Is this considered a co-infection? What do I about this?
My doc is not lyme literate, but is very willing to hear me out on whatever info. and considerations I find and acting on some of them.
TIA
Posts: 90 | From Maryland | Registered: Jan 2006
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quote:Originally posted by yankee in black: Insurances do not even begin to cover the needed treatments---and getting the patient started on IV ABX, and then having to "Pull the plug" due to insurance refusal of payment--can be worse than no treatment at all ( this is his opinion--I am just repeating it)
This has to be a hard part on the doc. I told mine I was going to kill myself if it was pulled. I have 2 kids and wanted to live (depression had nothing to do with it, kinda why i believe most suicides are disease related.) However I knew my disease and death in that manner was not an option. I also talked with many other patients who were scared to death of "pulling the plug." Anyway mine was pulled and got infected with MRSA. Can't really blame them, it was more maintenance IV than any possible cure. chronic strep cannot be beat with abx. Turns out the Curad bandage which cured my wound had an interesting ingredient (silver). "pulling the plug" does not have to kill us!
Also please tell Congress to Keep America CODEX-Free, A sizable chunk of the world now lives under supplement tyranny and now they are after us!
Anyway, I'd appreciate it very much if you have more info regarding the EBV popping up as an active infection exacerbated by lyme. Is this considered a co-infection? What do I about this?
TIA
Just a ditto. I also had/have EBV. I've never really explored what that virus is or does.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Solei says it best. Just because an MD is ID doesn't mean he/she is a duck when it comes to LD. I saw the "top" LD research MD who was a Rheumatologist. This MD said I did not have LD, despite super positive tests. Was told I had a rare intestinal bug (not so - tests were negative). My ID MD told me to ignore that diagnosis and is treating me, successfully, for Lyme. My IDMD is Lyme Literate. The other MD I saw was called an "LLMD" - NOT! Depends on the Doc not the speciality.
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if they are ignorant on borrelia they are ipso facto (is that a word?) also ignorant on disease. funny stuff. 
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