Desperately needed help in ILLINOIS

Discussion in 'Fibromyalgia Main Forum' started by tangie, Jul 10, 2008.

  1. tangie

    tangie New Member

    I have been diagnosised for 5 and a half years now, and I constantly feel like I have completely relapsed. I have only had one "good" week since I have been diagnosed. I constantly feel like im having a heart attack, or feeling like im about to pass out. I dont know what to do or how to go about feeling any better!!! Any suggestions would be extremely appreciated!!! HELP!!!! I dont know how much longer I can stand to feel this terrible. I cant tell when I wake up if I will have a good day or a completely terrible one, here lately, even the good days have ended horribly. I just dont know what to do. Any ideas or thoughts on what I should do? Any course of treatment that might work?

    HURTIN New Member

    Hugz Tangie

    Have you spoken to a doctor about these symptoms because what you're describing sounds pretty severe. If you're constantly feel as though you're about to have a heart attack and passing out, you should get to the nearest emergency room. It may not be serious, but then again, it may be life threatening. Please don't neglect your health. See a professional.
  3. jasminetee

    jasminetee Member

    I have the same problem. My CFS and FMS have become very severe and if I do feel good, soon enough I feel horrible. I just try to get through min by min. I pray to God a lot these days. I'm unable to take pain or sleep meds so I just deal as best I can. It's like being constantly tortured isn't it?

    I have a laptop and put it on my stomach on a laptop tray with a beanbag bottom since i have to lay down most of the time.

    I look for the good things in life to be thankful for and that helps.

  4. PVLady

    PVLady New Member


    Chicago, IL
    Dr. Alan F. Bain, D.O., Director
    Internal Medicine, Bio-Energetic Therapy
    The Center for Integrated Health Care
    111 North Wabash Avenue, Suite 1005
    Chicago IL 60602
    Tel: (312) 236-7010 Fax: (312) 236-7190
    Web site:

    Chiropractical Solutions
    Dr. Jeremy Weisz
    1148 W. Diversey
    Chicago, IL 60614
    Tel: 773-598-5851
    (FMS. "We take a natural approach to patient care."
    "Dr. Weisz is the most caring doctor I ever had.")

    David Edelberg, MD
    WholeHealth Chicago
    2522 N. Lincoln Avenue
    Chicago, IL 60614
    Tel: (773) 296-6700
    Web site:
    ("He's a kind, attentive and well-informed physician. Even after several years of treating my symptoms, he continues to actively listen to me describe them and discusses other treatments even if only a small improvement is possible.")

    Fibromyalgia Treatment Centers of America
    Michael McNett, MD
    4332 N. Elston Ave.
    Chicago, IL 60641
    Tel: 773-604-5321
    Fax: 773-604-5231
    Web site:
    (Note: This center is self-referred to the list.
    "By the way, we a have 5-day intensive program for out-of-area patients. We've had patients from as far away as London, Alaska, and Australia come for our program.")

    Dr. D. Michael Kaye
    5720 North Ashland
    Chicago, Illinois 60660
    Tel: 773-334-0575
    (If it weren't for [this] supportive, symathetic neurologist I'd be a 25 year old with a masters degree on disability and unable to move without pain. As it is, my pain is controlled enough that I work full-time and live at least a semi-normal life.)

    The Rehabilitation Institute of Chicago
    Chronic Pain Clinic
    Dr. Joanne Smith, M.D.
    Dr. Norman Harden, M.D.
    Dr. Michelle Mullner, M.D.
    Dr. Patricia Cole, Ph.D.
    345 E. Superior Street
    Chicago, IL 60611
    Tel: (312) 908-6900
    (FMS) ("The Rehabilitation Institute is an amazing resource because it offers a wide variety of resources, including psychological service (helps with anxiety and depression), occupational therapy (shows you how to do daily living activity less painfully), physical therapy, biofeedback (relaxation/natural pain decrease techniques), and solid medical care. They also will work with your particular health insurance plan to maximize benefits -- or even help you if you don't have coverage at all. They helped me get my life back!"

    "Anyone seeking diagnosis or treatment of Fibromyalgia in the Chicago, Illinois area should check into the Chronic Pain Clinic of the Rehabilitation Institute of Chicago. There are numerous physiatrists (physical medicine and rehabilitation doctors) who specialize in treating Fibromyalgia. ")

    Crystal Lake, IL
    Dr. Oberg
    31 North Virginia Street
    Crystal Lake, IL 60014
    Tel: (815) 455-1990
    (Allergy and Environmental Medicine)

    Elk Grove Village, IL
    Patrick B. Massey MD, PhD
    Medical Director, Complementary and Alternative Medicine, Alexian Brothers Hospital Network

    President, ALT-MED Medical and Physical Therapy Program

    1544 Nerge Rd.
    Elk Grove Village IL 60007 USA
    Tel: (847) 923-0046
    Web site:
    (Note: Dr. Massey is self-referred to the list.)

    Freeport, IL
    Dr.Jaun Ibarra
    Freeport Health Network
    1006 West Stephenson Street
    Freeport, IL
    Tel: (815) 235-0159
    ("He's an excellent doctor and I must say that his treatment for pain has helped me many times.")

    LaGrange Park, IL
    Tony Lu, M.D., F.A.A.M.A.
    Loyola Family Health Center at LaGrange Park
    321 N. LaGrange Road
    LaGrange Park, IL 60526
    Tel: (708) 485-1020
    Fax: (708) 485-1173
    Online Appointments
    ("Dr. Lu is an internist and an expert accupuncturist.")

    Moline, IL
    Dr Michael F Miniter, M.D.
    500 Valley View Drive
    Moline, Illinois 61265
    (309) 762-3621 Ext. 417
    (Has been very helpful with my fibromyalgia. He LISTENS to his patients.)

    Park Ridge, IL
    Keith Berndtson, MD
    Park Ridge MultiMed
    15 N. Prospect Ave.
    Park Ridge, IL 60068
    Tel: (847) 232-9800
    Fax: (847) 232-9810
    (From Dr. Berndtson: "Early in my 20 year career as a generalist, I would cross the hall the avoid CFIDS and fibro patients. Now that I have the experience and the time to use an integrative clinical mindset, I actually look forward to helping them."

    From a patient: "I have been his patient for the past 10 years. I believe that he represents the best that medicine has to offer. He is competent, well-informed, professional, compassionate, personable, and empathetic about the difficulties both physicians and patients face in today’s health-care system. I have absolute confidence in him as a medical doctor and as an integrative care specialist who can call on the strengths of alternative therapies to maximize benefits to the patient. I can recommend him without reservation.")

    Peoria, IL
    Dr. Joseph 'Joe' Couri and Dr. Vaughn Hannah (Both are rheumatologists)
    120 N. E. Glen Oak Drive
    Peoria, IL. 61602
    Tel: (309) 671-8270
    Fax: (309) 672-3171
    (Dr. Joe is from a huge family ( 5 are Doctors) in East Peoria, IL., and he is currently Chapter president of the Arthritis Foundation.)

    Schaumburg, IL
    Carey Dachman, M.D.
    455 S. Roselle Road, Suite 104
    Schaumburg, IL
    Tel: 847-352-5511
    Web site:

    Warrenville, IL
    Patrick B. Massey MD, PhD
    Medical Director, Chicago Integrative Medical and Wellness Center
    28373 Davis Parkway
    Warrenville IL 60555
    Tel: (630) 393-8801
    Web site:
    (Note: Dr. Massey is self-referred to the list.)

  5. Slayadragon

    Slayadragon New Member

    Hi Tangle,

    My Chicago doctor is Keith Berndtson,just north of Chicago. He's really smart, has a lot of experience with CFS patients, and is by far the nicest doctor I've ever met. I started seeing him several months ago in order to get nutritional IV's (Vitamin C), but like him enough that I would continue even if I didn't need them. He takes BCBS insurance (as well as Medicare), and I've gotten great coverage in-network.

    My longtime CFS doctor is Dale Guyer, in Indianapolis. I can safely say that he is by far the most educated doctor in the country in terms of the variety of different treatments that might help CFS patients. I've spoken to a great number of his patients, and almost all of them have improved significantly (usually to around 80% functioning) after a minimum of a year or so in his care. He also is extremely nice. I've been seeing him for 11 years. However, he's expensive ($375 for a follow-up) and a bit harried these days. Anyone who sees him should be prepared for the way his office is run to drive you nuts, and to view that as a cost of getting good care.

    One thing I like about both of these doctors is that they are not believers in the idea that you have to get a whole lot worse for a long time before you get better. Their belief seems to be that supportive treatments upfront are really important, and that pathogen killing should be done only at a pace that the body can tolerate without getting really weakened. Dr. Guyer is especially skilled at that, having used antivirals on hundreds of patients and eventually arriving at this approach.

    That being said, you are quite ill and so trying to make a guess upfront with regard to what is wrong with you before you make a huge effort to see a physician (especially one out-of-state) seems warranted.

    After reading this board closely for nearly two years, I've come to the conclusion that there are at least two things that make CFS patients really really sick: 1) parasites (such as babesia and other lyme co-infections, toxoplasmosis, etc.) and 2) high amounts of toxic mold in the environment.

    Attempting to look into them first thus might be a good strategy. I do not think this is a substitute for a good basic CFS doctor (I highly recommend Dr. Berndtson for this if you want to see someone in Chicago), but taking matters a little more into your own hands seems to me that it's warranted.

    To consider the possibility of mold poisoning, I would take a look at a book called "Surviving Toxic Black Mold Poisoning" by Mary Beth Short-Ray, D.O. This should give you enough information to consider whether this might be a problem for you. If it is, perhaps some of us on the board who have looked into this can give you some ideas.

    In order to consider lyme "co-infections," I would suggest looking at the list of symptoms that I am going to paste below. These are defined as "lyme" symptoms, but the more serious ones seem to be related to the parasitical co-infections associated with lyme. If you find that you match this list, finding a good Lyme Literate MD seems appropriate. Unfortunately, it seems there aren't any of these in Illinois. I've seen some folks have good experiences with one in Missouri though.

    I personally think that a whole lot of people who are really sick have both of these things going on. Addressing one or the other tends to be less than optimal in getting people well. And again, having a CFS doctor who can work with you on the basics of supporting your system through a variety of measures seems crucial to me.

    (As I noted, there are other parasites that also can make people really sick. I'm not absolutely sure what the best way is to pursue those. Dr. Guyer might be able to find them and undoubtedly would attempt to treat them if they were found though.)

    I hope this is of some help.

    Best, Lisa
  6. Slayadragon

    Slayadragon New Member

    This is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstrual pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover
  7. PVLady

    PVLady New Member

  8. Honora88

    Honora88 Member

    Look in up online...tong ren..there are so many free conference calls.

    There are 3 women who used to have it and they are not doing free conference calls. I've been doing it for 1.5 years without paying anything and it really works! I'm off all my supplements right now.

    Please promise me you will look it up! I keep posting about it but nobody has ever responded. It's the best kept secret there is for cfid!
  9. Chilene

    Chilene New Member


    we seem to have alot in common.

    i got this health mess (cfs, fibro, herniated discs, severe allergies...)... when i was 30. i also live in Illinois (Chicago). and i am very much working the 12 Steps (currently, Al-Anon).

    i saw many doctors in the first years of my illness (they originally thought i had MS)... and found little help with Western medicine (but for clinical things like MRIs...). i did find much more understanding with some of the MDs that also practiced alternative therapies... but eventually could no longer afford most of those doctors. nothing truly seemed to help with the alternative therapies, either. (i, too, saw Keith Berndtson at one point, but he was NOT helpful for me. i am glad he has been able to help others; it also could be that i saw him about 12 years ago, and he may have more insight about cfs now).

    i finally "gave up" with the doctors, and threw myself further into the 12 step program and found that, wildly enough, it was there that i learned to take care of myself, with intuition. quit working (but for 12 hours a week on some jobs, then altogether--to see if that helped)... as i lived on disability and then learned to get 8-12 hours of sleep a night. PACE myself daily, and let go of others' expectations of me. and also got very into my passion for photography and began to sell my work at shows when i could.

    eating much better has helped a little, too. i ADORE sugar, but have cut this out alot in the last few weeks, and THAT seems to help, too. oh, and THIS site!!! ... have gotten more here than anywhere else. though i AM seeing an MD/alternative doc when i need to/can afford, again.

    hang in there, tangie!;)


  10. gapsych

    gapsych New Member

    Your symptoms sound serious.

    This is not the time to speculate what could be wrong.

    It sounds like you first need to get to the nearest emergency room and take it from there.

    Take care,


    PS. Did not realize this post is a week old. Tangie, how are you doing? Let us know.
  11. munch1958

    munch1958 Member

    I'm sorry you are having such a bad time of it. Finding a decent doc in IL is tough. Maybe because of malpractice laws? Even my OB/GYN of 30+ years has scaled back her OB practice.

    I've been seeing Dr Edelberg for 18 months. At this point, I don't know what I'd do without him! He is taking care of the things my MO Lyme doc isn't (pain, sleep issues, etc.) The LLMD would take over these things if I asked but there could be some issues with the RX's being from out of state.

    I've been seeing the MO LLMD since 4/07. I was a patient at the Detroit FFC first but they wouldn't treat me for Lyme even though I have many positive bands that show significant Lyme activity.

    I'm also seeing a great endocrinologist at Rush, Dr Levy. He is an advisor to the Magic Foundation in Oak Park. He is mainly a pediatric endo who sees lots of kids with growth hormone disorders. For me, HGH has been a miracle therapy.

    My IGF-1 was very low when I went to FFC. Something like 86 or 88. I've been on HGH since Sept 07 and have found all my muscle type pain is gone. No more feeling like I've been out all night drinking with a bad hangover then had been hit by a truck.

    My protocol is certainly not for everyone but I've had a lot of success with it. I think it's because it is tailored to me based on my labwork. It's all in my profile.

    I have given up my quest to find the one dream doc that can do it all. Medicine is so specialized that doc doesn't exist anymore.

    Good luck! I hope you find the help that you need. Lisa has all my contact info if you'd like to know more.

    [This Message was Edited on 07/21/2008]
  12. Slayadragon

    Slayadragon New Member

    I've seen a whole lot of patients on the board with your symptoms and who have gone to emergency rooms.

    None of them have been helped at all. Nor have they been helped by visits to a series of regular primary care physicians.

    You could be the exception though, I guess.
  13. gapsych

    gapsych New Member

    Better safe than sorry. Chest pains are nothing to fool around with. Maybe you can even get some medication to ease the symptoms.

    We can not rely on antedotal reports as each of us is different.

    Munch, my hospital was also Rush and I had the best rheuatologist there. He studied under someone famous who is well known for FM/CFS. I can not think of the rheumy I had but I was certainly impressed.

    I had already been diagnosed before I saw him. THe first thing he said after he read the referral notes was- "Don't ever think that this is in your head. It is a real condition."

    I burst into tears from hearing those words.

    TAke care,