Topic: interviewing new infectious dr. whether he treats CHRONIC lyme; what did I forget??
bettyg
Unregistered
posted
I have lobbied our local clinic to get a replacement MD for infectious dr. who left 1-2 yrs. ago. Emphasized we needed a CHRONIC LYME DR. who treated longer than 1 month, etc.
told ceo that if he got in a LLMD that would treat LONG-TERM ABX chronic lyme patients; they could have a steady CHRONIC LYME CLIENTELE vs. us going to southern Missouri and southern Minn. I never heard back from CEO, but they started this new md 2 wks. ago, so i scheduled an appt. to INTERVIEW him.
this way i'll know whether to send IOWANS to him or not for treatment. this is what i've just quickly come up with; should have started this 2 wks. ago. MY APPT. IS TOMORROW AM!!
Do YOU believe chronic lyme exists? Or a question about the specific bands being an indication of Lyme even if a lab like Quest says the overall test is negative. What is his prophylactic treatment for a tick bite (like 2 doses Doxy etc etc)
would ask what kind of test he orders for lyme
(i think many ducks order elisa first Do you need a positive lyme test to treat lyme or do you diagnosis it clinically Do you treat CHRONIC LYME OVER 30 days? would ask what kind of TESTS he orders for lyme elisa, which is WORTHLESS?
Which antibiotics are used and the strength?
Do you use IV antibiotic; which med? Strength? Length of time? Do you TREAT CO-INFECTIONS? WHICH MEDS? LENGTH OF TIME BARTONELLA BABSIOSA EHRLICHIA HHV-6, human herpes virus 6 Which med Length of time DO YOU USE HERBS AND SUPPLEMENTALS? which ones
Which labs do you use OUTSIDE OF McFarland CLINIC? IgeneX, CALIF. MD labs, NJ STONEYBROOKE LAB, NYC FRYE LABS, ARIZONA Do you DETOX your patients? Which method? Do you test for food allergies? Gluten? Casein...dairy products? MOLD allergies? Are you aware of Dr. Brian Fallon's study results that LONG-TERM ANTIBIOTIC does help lyme patients get better that was published this summer and in MED. JOURNAL? Did you read YANKEE MAGAZINE detailed lyme article written my lyme writer? covers everything about lyme disease.
Please place my notes in my medical file; thanks!
Please send me a copy of your dictated med notes to home address! Big THANK YOU! Betty G Ps. CLINIC HAS MY RELEASE OF INFO SIGNED!! ******************************************
THANKS for your input! i have no idea what length of time i get with this new guy? sees patients only MORNINGS! uffda
BIG THANKS to both of you for valuable input! got them both put in there!
PRINTING OFF; headed to dr. now!! love ya!
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Betty - good list, but don't give him the names of the co-infections.
Instead, just ask about them. Ask what ones he routinely tests for, "..what coinfections have you run across when treating lyme?"
Frankly, you may be shocked at the silence. (Or like my last neuro, blank stare = never heard of coinfections.)
Just don't GIVE him the answers. Play naive, like, "Well, I've heard that coinfections are pretty common with lyme...what is your feeling about that?"
Remember, as an ID doc he is SUPPOSED to know. The patient is NOT supposed to know more than the doctor.
Be prepared to hear the IDSA "party line."
Good luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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great, Betty.
I would be sure immediately after arriving for the NOT to draw a chart on you. You are there as an interviewer, not as a new patient.
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Can you find out where he worked before. Call the lyme support leader and see if anyone has been treated by him ?
Google to see what memberships he has.
I found his web page easily by googling your clinic. I sent that to you.
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I would change your first question. It reads like a test, rather than as his practice.
If he says no, he thinks he got the test question right.
or you might ask "Personally, how do you treat stage I ?
are you experienced in treating stage II and stage III borrelia and in treating all stages of neuroborreliosis? "
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Ask how he would test for the different strains of lyme or babesia. In Iowa, the MO-1 strain should be considered.
(As I understand it only one strain of lyme is tested for of hundreds. Babesia has three strains ?? - or only three strains have tests ?? Hopefully, he say he'd consult the right experts to find out.
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how about first asking what of the ILADS literature he might be familar with and then asking
"according to the treatment guidelines of ILADS, and
rather than ask "Do you believe Chronic Lyme Exists?" as one poster suggests, I would ask him to briefly discuss the various stages of lyme, and what happens if it's untreated.
If you has someone if something exits that gives them the ability to deny it. We know it exists. We want to know what the doctor knows about the stages - if he does not believe it exists it will come out as then.
If he does not answer, it is important to press to find an answer to if he believes. Also, be sure to take a set of articles for him.
OR: Do you treat chronic lyme here or do you refer out to others? And who would that be, then?
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Also, know that he may not have a choice but to adhere to IDSA guidelines if he is to keep his job.
If his answers are IDSA and he's not willing to look at ILADS research, you could just politely tell him you know that he may not have a matter in how he treats and you understand. It's not fair to him or patients but, to save everyone time and money, it's important to know if he has the luxury of making up his own mind or if he is bound by higher-ups.
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Will you ask him to detail the ILADS and IDSA guidelines. Do you have the Savely article - that is so very good.
I wish that journal had a CME test for you to use.
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Can you ask him what supplements he would suggest to prevent liver damage during Rx? (Milk thistle being one)
I don't think this is the same as detox but rather preventing and protecting the liver. Again, PubMed and other med articles on protective nature of various herbs.
he should also know the timing of taking milk thistle.
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He should know about Saccharomyces boulardii as a preventative measure, too.
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You can leave him with a set of papers, ask that he take a look and schedule a follow-up appointment.
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Is your insurance paying for this or is this self-pay.
If you insurance is paying and you hope to have him for a doctor, then they would have to start a file.
But just a one comment saying "informational interview in hopes of becoming a patient. Patient has a list of questions with her."
do not let all this be part of your file.
I've taken in articles, even whole publcations for a doctor to read. Going back months later, even years in some cases, all that was just shoved in my file. No one ever read it.
I wish I had just taken the time at the appointment for them to read it then.
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A few years ago I tried to interview a MD/ND who said he had treated lyme. He did not take well at all to my interviewing him to see if I wanted him to treat me. He kept trying to stay on track by asking me the usual run of the mill questions.
I made it clear that it would be a waste of time unless I knew more about what he knew about lyme and whether he could treat me.
Early in the "interview" the furnace kicked on, triggered a seizure and I was left in a stupor for the next hour - for which I'd pay $400. cash !!! He did not even help me off the floor - he could have done some sort of treatment for the seizure and my voice paralysis from that - but he just stared and continued trying to interview me as he wanted to at the beginning.
(A magnesium and B-12 shot would have been in order - or a magnesium IV with vitamins. That office did such. But he missed a chance - and he used to be an ER doctor !!)
I could not think, or actually get my thoughts out, so it was just such a waste.
I hope your doctor takes better to you than this one did to me. I think doctors don't like to be questioned. I think they don't like to share.
So, whatever this doctor is willing to give you in his opening up, I hope it goes well and he understands the spirit and reasons around it and does not feel threatened. Good luck.
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[ 31. December 2007, 01:58 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
"...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.
----------------------------------------------------------------------------------- Clinical Advisor Clinical Feature Issue Story From the May 2007 issue of Clinical Advisor
Controversy continues to fuel the "Lyme War" By Virginia Savely, RN, FNP-C
***** 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.
Controversy over the treatment of a particular disease is not uncommon. There are many illnesses for which there are different schools of thought and more than one treatment method� _'�e.g., heart disease, prostate cancer, and breast cancer.
When it comes to Lyme disease, a bacterial infection caused by the corkscrew-shaped spirochete, Borrelia burgdorferi, the battle lines are particularly distinct, and the opposing viewpoints reach vitriolic proportions, to the ultimate detriment of the patients.
Lyme disease, which is most commonly acquired through the bite of an infected tick, has been reported in every state and has become the most common vectorborne disease in the United States.
In 2005, the CDC received reports of 23,305 cases, resulting in a national average of 7.9 cases for every 100,000 persons. In the 10 states where the infection is most common, the average was 31.6 cases for every 100,000 persons. The CDC estimates that the disease is grossly underreported, probably by a factor of 10.
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)
IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat (www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html.
Accessed April 6, 2007). 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 (www.ilads.org /guidelines.html Accessed April 6, 2007).
Diagnosis: Where it all begins
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.
However, Lyme disease is often missed during its early stage when it could be most easily treated (Table 1).
==================================================== TABLE 1. Reasons for missed diagnosis of Lyme disease (see link)
* Patients often don't realize they have been bitten.
* Patients often don't have the characteristic and diagnostic Lyme "bulls-eye" rash.
* Clinicians are unaware of the widespread prevalence of the disease and do not include it in the differential diagnosis when they think it is not endemic to their area.
* The mild flulike symptoms of early Lyme disease are usually attributed to a common virus.
* Clinicians are not familiar with the varied signs and symptoms of the organism once it starts to disseminate throughout the body.
* Clinicians are unaware of the insensitivity of commercial Lyme tests and therefore are inclined to rule out the disease in the presence of a negative test.
* 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.
* The Lyme spirochete can enter a dormant state soon after the tick bite and reappear months to years later, causing symptoms that are not readily associated with the original bite.
Since the deer tick is no larger than the period at the end of this sentence, it is not surprising that people frequently do not realize they've been bitten.
In a hairy part of the body, the tick is almost impossible to see, and even when it is noticed, it is often mistaken for a mole or scab.
When the tick latches on, it injects salivar components that anesthetize the area and decrease inflammation at the site of the bite, leaving the victim unaware of the tick's presence and allowing it to feast undisturbed.
The erythema migrans (EM) rash is commonly known as the "bull's-eye" rash for its characteristic shape. The CDC maintains that a patient presenting with a bull's-eye rash does not require testing for Lyme disease because the rash is diagnostic in its own right.
However, the rash does not always present in the classic pattern of concentric, round, red circles.
EMs can be oval in shape and/or solid in color, with shades of pink, purple, and red.
The rash may or may not contain pustules, itch, feature a dark spot in the middle, or have a denuded center. The size varies from that of a quarter to 12 in or more.
Some victims develop a diffuse rash over the entire body. EMs are commonly misdiagnosed as spider bites, cellulitis, or ringworm. To complicate matters further, as many as half the people who acquire Lyme disease from a tick bite develop no rash at all.
Frequently, a clinician mistakenly assumes that there are no Borrelia-carrying ticks in the patient's geographic area and fails to include the disease in the appropriate differential diagnosis. Lyme disease should be considered regardless of where a patient lives.
Ticks are carried on numerous animals, including household pets, rodents, deer, and birds, so it is little wonder that Lyme disease-transmitting ticks are not confined to a few distinct geographic areas.
A travel history should be obtained to determine whether the patient has recently traveled to a particularly Lyme-endemic area (the northeastern United States, north-central United States, and the Pacific coastal region).
Most clinicians are not familiar with the varied signs and symptoms of Lyme disease (Table 2), and this contributes to misdiagnosis (Table 3).
Children may present differently than adults, with predominant symptoms being changes in behavior and school performance.
In affected children, parents typically report mood swings, irritability, obsessive-compulsive behavior, and new-onset attention-deficit/hyperactivity disorder.
Physical symptoms in children may include fatigue, frequent headaches or stomachaches, urinary symptoms, and migratory musculoskeletal pains.
==================================================== Table 2. Symptoms of Lyme disease by system
MUSCULOSKELETAL
Joint pain, muscle pain and cramps, muscle joint stiffness, loss of muscle tone, back [ain and/or stiffness, neck pain and/or stiffness, heel and foot pain, temporomandibular joint syndrome
clumsiness, depression, difficulty chewing or swallowing, hallucinations, headaches, involuntary jerking or muscle twitching, irritability, poor balance, sleep disturbances, speech difficulty, weakness of limbs, hyper-sensitivity to touch, sound, light, and smell
CARDIAC Exhaustion, palpitations, shortness of breath, tachycardia, hypotension, hypertension, heart murmur, abnormal ECG, chest pain, or tightness
ENDOCRINE Low body temperature, sweats and/or chills, irregular menses, loss of libido, worsening premenstrual syndrome, pelvic or testicular pain, milky breast discharge, hypertriglyceridemia, Hashimoto's thyroiditis, weight gain
GI AND URINARY Abdominal pain and tenderness, bloating and/or gas, constipation, loose stools, nausea, urinary frequency, constant thirst, irritable bladder, urine control problems, bowel control problems
OTHER Easy bruising, hair loss, recurrent sinusitis, sore throats, tender glands, tooth pain, unusual rashes, shooting pains throughout the body ====================================================
==================================================== TABLE 3. Diagnoses that should be suspect for Lyme disease
When a patient presents with a collage of seemingly unrelated symptoms, there is a natural tendency to assume that a psychological component is at play.
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.
The testing conundrum
The CDC is aware of the insensitivity of the tests for Lyme disease and encourages clinicians to use judgment rather than a test result to make the diagnosis (www.cdc.gov/ncidod/dvbid /lyme/ld_humandisease_diagnosis.htm. Accessed April 5, 2007).
As previously mentioned, however, most clinicians do not feel confident in making this judgment call and continue to look to unreliable test results for confirmation of disease.
The Western blot test
Because B. burgdorferi is an extremely difficult bacterium to culture in the lab, testing has relied on detection of antibodies to the organism. The Lyme enzyme-linked immunosorbent assay (ELISA) gives a titer of total immunoglobulin (Ig) G and M antibodies and is currently the accepted initial screen for suspected disease.
Since a screening test should have at least 90% sensitivity, the 65% sensitivity of the commercial Lyme ELISA should lead to its reconsideration as an acceptable screening tool.
The Western blot, which is commonly used as a confirmatory test for Lyme disease, is more sensitive than the ELISA. While the CDC has published strict criteria for positivity on the Western blot to make a more exclusive cohort for epidemiologic purposes, it never intended for these criteria to be used for diagnosis.
Unfortunately, the restrictive criteria omit several of the important bands on the blot that are highly sensitive markers for the presence of B. burgdorferi (see "Interpreting the Western blot,").
Clinicians should become acquainted with the relative sensitivity and specificity of each of the bands on the blot to make an appropriate assessment for diagnostic purposes. A negative test based on epidemiologic criteria may be a positive test for diagnostic purposes.
Treatment dilemmas
The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied. Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.
Borrelia burgdorferi's stealth pathology makes eradication of the disseminated organism a near impossibility. Before the tick delivers its inoculum of spirochetes into the host, it injects a substance that inhibits the immune response, allowing the spirochete to gain a strong foothold. The spirochete itself secretes enzymes that help it to replicate and infect the host.
Once disseminated throughout the body, B. burgdorferi secludes itself and becomes difficult to detect through laboratory testing� _'�and by the host's immune system. The bacterium may hide in its host's WBCs [white blood cells] or cloak itself with host proteins. Furthermore, it tends to hide in areas not usually under immune surveillance, such as scar tissue, the central nervous system, the eyes, and deep in joints and other tissues.
Phase and antigenic variations allow B. burgdorferi to change into pleomorphic forms to evade the immune system and antibiotics. The three known forms are the spiral shape that has a cell wall, the cell-wall-deficient form known as the "L-form" (named not for its shape but for Joseph Lister, the scientist who first identified these types of cells), and the dormant or latent cyst form.
Encapsulating itself into the inactive cyst form enables the spirochete to hide undetected in the host for months, years, or decades until some form of immune suppression initiates a signal that it is safe for the cysts to open and the spirochetes to come forth and multiply.
Each of these forms is affected by different types of antibiotics. If an antibiotic targets the bacterium's cell wall, the spirochete will quickly morph into a cell-wall-deficient form or cyst form to evade the chemical enemy.
Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.
Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles. To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks.
Within the tick gut are hundreds of different types of pathogens. How many infect humans is unknown. Some have been identified and are known to intensify morbidity and complicate treatment of Lyme disease.
Awareness of three coinfecting genuses in particular� _'�Ehrlichia, Bartonella, and Babesia� _'�has increased, and persistent infection with these organisms has been described. Testing for and treating these coinfections has become part of the approach for clinicians who specialize in the treatment of Lyme disease.
Treatment methods IDSA guidelines recommend treating certain high-risk tick bites with a prophylactic single dose of doxycycline. This is recommended only if the tick is clearly a deer tick that was attached for 36 hours or more, the patient was in an endemic area, and if treatment can be started within 72 hours of the time the tick was removed. Most ILADS practitioners treat any high-risk tick bite with a full month of doxycycline.
If a patient presents with EM or has a positive Lyme test, IDSA guidelines recommend treating with either doxycycline, cefuroxime, or amoxicillin for 10-21 days.
All other antibiotics are specifically not recommended. After the prescribed amount of time, treatment is discontinued whether symptoms remain or not. However, if symptoms remain severe after the patient has been off the antibiotics for a few months, treatment with another two to four weeks can be considered. One month of IV antibiotics is recommended for severe arthritis or neurologic disease.
IDSA stresses that persistent symptoms do not indicate chronic infection and that prescribing long-term antibiotics to patients unresponsive to the typical two- to four-week course is useless and potentially harmful. "There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease," the guidelines state. "Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (six months or longer) subjective symptoms after recommended treatment regimens for Lyme disease."
Patients who continue to suffer from persistent fatigue, pain, and cognitive disturbances after a traditional short course of antibiotics are rare, the IDSA panel claims. These patients have developed "post-Lyme syndrome," probably due to an immune system that cannot shut down after the infection is gone. This syndrome can only be treated with symptomatic care and tincture of time.
ILADS, on the other hand, promotes the idea that the Lyme spirochete is very hard to eradicate and persistent symptoms are due to ongoing infection. This organization's approach is to treat with antibiotics as long as symptoms remain.
Off-label combinations are often used based on clinical experience. Variable response to antibiotics and occasional antibiotic resistance are thought due to the fact that there are over 100 strains of B. burgdorferi in the United States and 300 strains worldwide.
Since the Lyme spirochete is adaptive and morphs to a new cell type when under stress, clinicians who advocate aggressive, long-term treatment support giving two or three different classes of antibiotics at the same time and changing the treatment protocol every two to three months.
Higher-than-normal doses of antibiotics are given to achieve better penetration of both the tissue and the blood-brain barrier.
IM injections of long-acting penicillin or IV administration of antibiotics are recommended for patients with neurologic disease. Precedent for the safety of long-term antibiotic use has shown that the benefits outweigh the risks.
According to ILADS, treatment is complicated by the frequent presence of coinfections, which can intensify symptoms and prolong treatment. Therefore, antibiotics that target the coinfections are usually prescribed prior to or along with those that treat Lyme disease.
Table 4 lists treatment options used by ILADS clinicians to target the various forms of the B. burgdorferi bacterium, and Table 5 lists treatment options for the most common coinfections.
==================================================== TABLE 5. Treatments for coninfections
Babesia (treat this first and for at least four months) * Atovaquone + azithromycin * Metronidazole + azithromycin * Clindamycin + hydrochloroquine * Lariam + doxycycline Trends Parasitol. 2003;19:51-55 and Emerg Infect Dis. 2003;9:942-948
Occasionally, Jarisch-Herxheimer reactions complicate Lyme disease treatment. These symptom intensifications are due to elevated cytokines and toxins released during B. burgdorferi die-off. Many patients notice that symptoms occur cyclically (every 21-28 days).
When these intensification reactions occur, the treatment can be temporarily worse than the disease.
It is difficult to decide when to stop treating Lyme disease since there is no test that demonstrates a cure.
Because of the lack of simple culture techniques and the low sensitivity of antibody tests, a negative test does not rule out infection. Treatment cessation is based on symptom resolution, which means that symptoms may return if the infection has not been eradicated.
The road ahead
Rather than shy away from the complexities and controversies of Lyme disease, clinicians should welcome the chance to learn about this condition.
Lyme disease is much more prevalent than most realize. Clinician education will reduce patient suffering and hopefully put an end to the "Lyme War."
==================================================== AT A GLANCE
* Lyme disease has been found in every state and should always be considered in the appropriate differential diagnosis.
* While a "bull's-eye" rash is diagnostic, fewer than 50% of patients develop any rash at all.
* Lyme patients should be tested for other tickborne organisms, such as Ehrlichia, Bartonella, and Babesia.
* Eradication of the Borrelia spirochete may require use of two to three simultaneous antibiotics for up to three years. ====================================================
For a list of references used in this article, contact the editor via e-mail ([email protected]) or telephone (646.638.6077).
Ms. Savely is the owner of TBD Medical Associates in San Francisco. She is a nurse practitioner who specializes in treatment of Lyme disease and other tickborne illnesses.
*****
LymeInfoNotes:
Images (Tables 1-5 and "At A Glance") changed to type for LymeInfo newsgroup members.
Please, if you're interested and able, write and thank "Clinical Advisor" for this article.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You may sense this would be too much to ask, and it probably is . . .
but every doctor on the planet should know about porphyria and the damage excess porphyrins can do.
I would also ask what measure he would take in treating someone who has porphyria, and how to be sure secondary porphryia does not develop as can occur in any serious infection, especially complex ones.
He should know that the urine test is not adequate for all the types of porphyria, that blood and stool 24-hour tests are done - and that sometimes you can't really test unless a person is experiencing the emergency. He should now it's not always genetic.
there is some info. about that with Cpn, but any infection can relate. I think many who have strong herxes may have excess porphyrins. doctors need to be able to distinguish the difference, know which drugs use the Cytochrome P-450 pathway and which measures to put in place for the patient (glucose, beta carotene, etc. - of course glucose can be bad for candida but in a life-threatening emergency, it can save a life. I'd want my doctor to know that.)
MALARIA PROPHYLAXIS FOR PATIENTS WITH PORPHYRIA TRAVELLING IN SOUTHERN AFRICA
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[ 31. December 2007, 01:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Good point, Michelle. Don't give him the answers to the test, betty. See what he knows????
His answers will tell you immediately what he knows.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6480 | From Louisville, Ky | Registered: Jan 2002
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I think I'm too late, but you could have added probiotics to the list and if he knows to use them when treating people with antibiotics. Unless that's what you meant by "detox" on your list?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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bettyg
Unregistered
posted
thank you to the additional 5-6 folks who answered AFTER i left for dr. appt.
later when i have time, i'll implement your suggestions in my list so OTHERS MIGHT be able to use this in future when they see an infectious or a LLMD dr! thanks for contributions.
going to type my results from my visit to McFarland Clinic, Ames, Iowa new infectious dr. comments:
he read over my most current NEW PCP medical report in file.
very nice person who seemed very interested in me.
would NOT look at my 3 pages Q/A i brought him to discuss.
he took a good thorough history on me when i was dx with lyme; when i had rashes, etc. he noted i'd ONLY had rashes for 10 years.
i also told him it was a tick from live xmas tree that bite me? how do you know that? sub-zero iowa weather; had no pets nor did roommate; no gardening, and fokls always had live xmas trees plus i've kept a journal diary since age 13!
asked if i had fever...NO chills ... yes rashes and where were they located: arms then spread to most of body;
i found my detailed s. minn. intergrative drs. medical files about ALL the total body tests done. MY DR. INDICATED I WAS IMPROVED and mentioned western blot tests BOTH NEGATIVE NOW!! i informed him her note on that was WRONg! SO HE WOULD NOT TREAT ME!
now here's the list of Q/A and his resonses after my comment
Do YOU believe chronic lyme exists?
NO, HE FOLLOWS IDSA GUIDEINES ...when he sees definite relapes and thru blood tests!
Or a question about the specific bands being an indication of Lyme even if a lab like Quest says the overall test is negative. DIDN'T ANSWER!
What is his prophylactic treatment for a tick bite (like 2 doses Doxy etc etc) DOESN'T DO!
would ask what kind of test he orders for lyme
Do you need a positive lyme test to treat lyme or do you diagnosis it clinically? CLINICAL DX
Do you treat CHRONIC LYME OVER 30 days? DOESN'T TREAT OVER 30 DAYS!
would ask what kind of TESTS he orders for lyme
elisa, NOT MENTIONED he useds western blot igm/igg and send to UNIV. OF UTAH!! PCR he uses
Which antibiotics are used and the strength?
ROCEPHIN . ONE DAY only - 1-2 grams! DOXY , 100 TWICE DAY; 200 MAX!
Do you use IV antibiotic; which med? Strength? Length of time? Do you TREAT CO-INFECTIONS?
WHAT CO-INFECTIONS? WHICH MEDS?
LENGTH OF TIME BARTONELLA...I MENTIONED BELOW, "WILL TREAT, NON-SPECIFIC WITH WHT MEDS & TRIED GETTING DEFINITE ANSWERS"!
BABSIOSA EHRLICHIA HHV-6, human herpes virus 6 ...NO think he said! Which med Length of time DO YOU USE HERBS AND SUPPLEMENTALS? NO!
Which labs do you use OUTSIDE OF McFarland CLINIC?
WILL NOT USE ANY OF OUR ILADS LABS!! I ASKED SPECIFICALLY IF I REQUESTED LABS GO TO OUR LABS; NO, THEY WILL GO TO CLINIC'S LABS!
Do you DETOX your patients? NO!! Which method? Do you test for food allergies? NO, WILL SEND THEM TO ALLERGIST! Gluten? Casein...dairy products? MOLD allergies? Are you aware of Dr. Brian Fallon's study results that LONG-TERM ANTIBIOTIC does help lyme patients get better that was published this summer and in MED. JOURNAL? NO, B]
Did you read YANKEE MAGAZINE detailed lyme article written my lyme writer? covers everything about lyme disease. [B] NO, I DON'T READ YANKEE MAGAZINE!
dr. asked if i was going to establish a relationship with him? NO, YOU DON'T TREAT CHRONIC LYME; that's what i have.
told him earlier i was interviewing him for myself and others. if he DOES TREAT CHRONIC LYME, I WILL SEND OTHER PATIENTS TO HIM. SINCE HE DOESN'T TREAT DCHRONIC LYMIES, NO, I WON'T BE ENDING ANYWAY HIS WAY.
i'll give him credit also with all my meds, etc. i told him i gave my pcp EXTENSIVE typed comments from minn. llmd, and even found them in correspondecne file. he read over 50% of them!
again, super nice man; with him total of 35 minutes! bettyg
darn, I WAS HOPING IOWANS COULD GET HELP IN IOWA VS. GOING OUT OF STATE TO FULL-TIME LLMDS!! so they would be covered by our health insurance and avoiding big $$$ for travel, lodging, and food plus time off from work for those who still work!
posted
Sorry about the duck, Betty, but maybe this list could be worked on to become a Lyme/coinfections list for others to use?
Posts: 13117 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
robin,
yes, that was exactly what i was thinking of a combo antibiotics/supplements/herb LIST OF INTERVEIW QUESTIONS FOR PERSPECTIVE DRS! ///////////////////////////////////////
why reinvent the wheel! later
HAPPY NEW YEAR TO ALL! ARE YOU HOME OR OUT ENJOYING LIFE! MAKE IT A SAVE ONE; DON'T DRINK AND DRIVE!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Betty, sorry this did not work out.
I have a concern about your name, your file, now having another chapter. Will that go into to some computer system somewhere and make it look like you are doctor shopping ?
I do wish there were a way we could interview a doctor before our name even gets into the computer system as a patient.
If they were applying for any other job that we are hiring for - or contracting adivce on - they could be asked questions.
It sounds like even new cases with him will not be properly assessed or treated. Nice guy or not, Too bad.
Thanks for thinking of other regarding your question list. Most doctors probably won't get past the first few questions, though.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
BettyG you ROCK*)!!!!!!!!!!!
Great job!!!
-------------------- 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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bettyg
Unregistered
posted
forgot to say, i requested a copy of his medical notes on me as usual since i have a release of info i have signed. no problem.
i'll read that over carefully and rebut anything wrong.
guess i need to rebut the minn's MISTAKE that i don't have lyme anymore from her notes!! that one got past me!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Finding that mistake must have been a bit of a shock.
Can't they just delete your file and forget you ever came as you have decided not to hire the doctor.
posted
Sorry Betty, had almost the same experience at St. Lukes Hospital in Boise ID with the head of Infectious Disease.
Except he was NOT a nice man. He was arrogant, rude and had GOD written on his forehead!!
Told me all the ILADS Labs were bogus and so where all the ILADS MD's. Poor ignorant man could be helping lots of the people in ID who so despertly need help.
Believe me, there are plenty of them too!! Maybe you will stumble on someone that can help that is closer to home. We too have to travel.
Happy New Year
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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bettyg
Unregistered
posted
last week, i'd seem a new allergist at this same clinic.
1st time, he had his nurse give countles pricks of food//environmental allergy skin testing. NOHING showed up promptly like it did at Allergy Associates, LaCrosse, Wis. Next day i did have a couple act up on my arms but i forgot to call them in.
so i told him about 2 that did show up.
meanwhile i read an extensive 6 page write up my southern minn. alternative medicine dr. dictated on complete body labs.
he noted it was GREAT SMOKY LAB NOW CALLED GENOVA that had diagnosed me with gluten and casein. HE had noted in my 1st notes that he was "familiar" with them.
several things were WRONG in his dictated notes so i got him to change him and then queestioned the words i didn't understand.
i asked him about genova labs! "my colleagues have NO FAITH IN THEM WHATSOEVER! They may be good on some things, but not testing gluten and casein. YOU NEED BIOPSIES DONE TO CONFIRM THAT!
then he dictated his notes in front of me, and i got a few more things listed. told him i felt sorry for the woman typing up the notes! THE COMPUTER DOES IT, AND THAT WASN'T FAST! they get pretty arrogant at times!
ice, thanks for telling me about your experience as well!
our local hospital, MARY GREELEY foundation director, suggested to me to write the HEADS OF DRS. SCHOOLS to request they train as CHRONIC LYME mds. he stated they needed to know there was a HUGE NEED FOR THIS TYPE OF DRS.
so maybe we all ought to writing our own state's medical colleges! i'm game, are you??
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Betty, so sorry you had to go thru the stress of interviewing another doctor. Don't give up. Somewhere, someday, yes in the state of Iowa, you are going to find a gem. I know it.
Didn't say a doc to cure you, but a doc who can help you. Cure you doc might be a state or two over or down? I'm thinking in KY? lol
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6480 | From Louisville, Ky | Registered: Jan 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
YULK! I'd have bathed in clorox after that duck appointment! Sorry you had that result.. but nice try.
May I suggest?
When I want to know if a doctor is Lyme literate.. I ask one question and one question only. Usually it is by phone, in advance, to save time, money and LOTS of frustration. It is VERY plain and simple.
"How do you treat the cyst form of Lyme?"
By asking that specific question you are telling them it DOES exist (without an arguement)...
And you are NOT using the word "chronic" which they can't handle...
And you are seeing if they have even heard of it, are up on the current literature... and if they do know how to treat it properly.
If I can't speak to the doctor on the phone in advance.. I ask the office staff to ask and call me back.
Keep trying BettyG... good for you!
Years ago I had to do this same thing as there were NO LLMD's... only ducks who folks should NOT go to under any circumstances.
That is why I have seen over 180 medical professionals.. or shall I say "so-called medical professionals".
posted
Pam, thanks for your comments and even loaning your KY for my services! lol
tincup, thanks for your input as well, and your 1 question will be incorporated into what i retype based on the other good suggestions above!
again, since this was a FREEBIE having met my deductible for the year, and I live 5 minutes from clinic/hospital; it wasn't out of my way as I needed to pick up 5 meds from pharmacy there. I was only late for beginning of Joe Biden's speech! and possibly a seat IN the room vs. outside in the hallway.
thanks to all for your contributions; as i catch up on other NEEDED WORK especially in my house and my newest MEDS ADDED to list I carry at all times, I'll come back and work on this.
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