posted
My son's primary does not know how to interpret his Lyme results and referred us to an infectious disease specialist. Looking for options since it seems many Drs don't know LD well.
-------------------- DanaH Posts: 3 | From IL | Registered: Nov 2019
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Please do not go to an Infectious Doctor unless they are ILADS trained. (International Lyme and Associated Diseases Society)
You have now entered into the Twight Zone. The IDSA (Infectious Disease Society) and the CDC are at war againest ILADS. They disagree on testing, on treatment, on chronic infection, and on the SCIENCE of Tick-Borne Infections. This is a long read, might have to read it twice, but it must be understood.
You must get an ILADS trained LLMD (Lyme Litterate Medical Doctor) for your son. A LLMD is a specialist in TBI'S. They can get your son well. If he does have a TBI, the longer without treatment, the harder it is to treat and can become a chronic illness.
What are his symptoms ? What did his western blot report as reactive bands ? Do you want a referral for a LLMD ?
We will help you and your son.
Posts: 2977 | From Florida | Registered: Nov 2016
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Ann-Ohio
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ILADS.org is a good place to find a doc who is trained and experienced in treating Lyme and other tick-borne diseases.
And you might get some help here Chicagoland Lyme Support Group Chicagolyme Support Group
The "twilight zone" doesn't sound like a very hopeful reference for anyone. Neither is "war". LLMD is not a specialty - it is just a term made up by patients in the 90's. And since it is not known if your son has the disease, let alone that it is a chronic case, please do not lose hope.
I hope you have found someone to help you.
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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Ann-Ohio
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Thank you both for your info. I will take a look. He has 4 reactive bands. It seems the official positive is 5 bands?
I would like the name of a Lyme knowledgeable doctor or 2 in the Chicago area, if you have that info. I'll also check the Chicago groups.
Main symptoms, over a year: (upper abdominal/lower chest) pain, painful breathing (esp taking a deep breath), trouble swallowing, fatigue/lack of normal energy.
We've done so many tests. Most normal except for oropharyngeal swallowing abnormalities documented by speech pathologist and ENT. Also low vitamin D. And now the 4 bands, if that's meaningful. We haven't been able to get an answer to what's causing this.
-------------------- DanaH Posts: 3 | From IL | Registered: Nov 2019
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posted
Welcome to Lymenet! PM sent for WI, IN, MO & OH.
You MUST be your son's health care advocate and learn all you can about this. Which bands were positive?
Here is an explanation in summary form of specific bands written by another top LLMD, Dr.C:
"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."
Read the following for a more detailed explanation by Dr. C:
Your son needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. Your son needs to go where they are. At least half of all Lyme patients go out of state for proper care.
The physician base in Illinois is poor. The one Lyme doc I know of in Chicago has only treated patients for about 4 years which is too short of a time.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Our son has been ill for 19 years now, and it took 6 YEARS just to find out what was wrong with him! Some of the symptoms your son is experiencing are the same ones my son had/still has.
When you call for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in earlier by doing this.
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. View "Under Our Skin" and "Under Our Skin2: Emergence". Check your local library or buy it online.
Posts: 8981 | From Illinois | Registered: May 2006
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Bartenderbonnie
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Member # 49177
posted
Dana
Please listen to Hopingandpraying. Make an appointment ASAP with a LLMD. Many have a wait time so the sooner the better. This is a serious disease.
Lyme disease is first and foremost, a CLINICAL diagnosis. Which means, the symptoms the patient presents, epidemiology, and labs. The CDC uses 5 reactive bands for surveillance proposes, not supposed to be used for diagnosis States clearly on their website. Very hard to get doctors to understand this..
After almost a decade ago, Lyme advocates in Minnesota, pursing Lyme doctor protection legislation, settled for a compromise from the Medical Board which issued a Moratorium againest taking action againest doctors who treat Lyme long term.
BUT, just last week, the Board decided to reinstate sanctions on these same doctors who choose to treat long term.
From Pat Smith (Lyme Disease Association President; "This is a decision that is a blow for Lyme patients in Minnesota and the Lyme community at large. It exemplifies the fact that opposition to recognizing chronic Lyme and the treatment often necessary for its victims, is alive and well."
"We have looked to the government for answers, and it still has not acknowledged the problem of chronic Lyme disease, despite 427,000 cases of Lyme in the US in 2017."
"The lack of government acknowledgement has enabled the Infecious Disease Society guidelines to prevent those with chronic Lyme from recieving necessary treatment, since doctors who use clinical judgement and treat outside "guidelines" may find themselves being sanctioned, as has happened throughout the US in the past."
I know this is alot to learn but learn you must. We stand together to help others. Healing wishes to your son and your family.
Posts: 2977 | From Florida | Registered: Nov 2016
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