posted
I would appreciate some advice from the experts out there.
After having some bands positive on Quest, I asked my doctor to do an Igenex test (IGM only). The results came back positive but he tells me that few doctors would treat and that his recommended treatment is 4 mos of antibiotic treatment (minocin) and if the symptoms do not go away then it isn't Lyme.
I do have many of the symptoms of Lyme and have many other things (MS, RA, Lupus etc) ruled out.
Thank you.
Denise
Posts: 18 | From canada | Registered: Feb 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Your doctor is grossly uninformed. Please go to the Seeking a Doctor forum and ask for info for a Lyme Literate Doctor in your area.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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I'm not sure why you did IgM only Western Blot test. The tests show your exposure to Borrelia and IgG shows that as well.
If this is an IgM result, you are definitely CDC postive for Lyme with active infection.
You need to find a Lyme Literate doctor. You have no idea if you have any coinfections along with Lyme. How does your doc know that minocycline is the antibiotic that will treat your particular strain of Borrelia?
I don't know where you are in Canada but there is a great Canadian website called canlyme. I can't remember what the ending is .net .org .com. One of those. Maybe they can point you in the right direction for a doc that knows how to treat tick born diseases.
I don't know how up on Canadian LLMD's our people from "Seeking a Doctor" are but it never hurts to try there too.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
Ho Boy! You have Lyme all over the place! Four months of treatment MIGHT be OK if you received the tick bite VERY recently. [like within the last few days or weeks]
The 4 mo of treatment will likely cause you to herx [a worsening of symptoms], but that is a GOOD sign that you are on the right track.
When you kill off the spirochetes they throw off toxins. That makes you FEEL worse, but you're actually on your way to getting better. Hope that makes sense!!
Please read through this link carefully. You will see that your test is POSITIVE.
Many drs in Canada and the US like to IGNORE Lyme patients because they don't want to lose their licences for treating longer than the usual "4 weeks" they are taught to do.
posted
Your test showed these bands as positive or equivocal (IND) Read in the link I gave you about "equivocal" and what it means. That is now referred to as IND or "indeterminate."
18: An outer surface protein.
23-25: Outer surface protein C (osp C).
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.
This was written by Dr C of MO. He is one of the best LLMD's in the US.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
93 kDa is usually expressed in late Lyme.. So is 18 kDa.
Agreed- you need a Doc that knows someting (hopefully alot) about Lyme. There's no doubt you have Lyme, and with your IgM antibodies this active- it means the spirochetes are active.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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My doctor is in the U.S. but I have recently been referred to a (Lyme) specialist here in Toronto. I am now glad that I have the referral.
I do not remember ever being bitten by a tick. However my father had chronic Bells Palsy, eye infections, limb pain, numbness and many of the other symptoms that I now have.
Thank you again,
Denise
Posts: 18 | From canada | Registered: Feb 2006
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posted
Bells Palsy is a BIG red flag for Lyme, along with the other symptoms you mentioned. Here is a list of Lyme symptoms:
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Glad you have an appointment. Now it's time to work on your dad! Wish I'd had the chance to do the same for my dad.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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