posted
My husband has lost his job recently due to what I think is lyme or a co infection but both lyme tests show negative so I am taking it to the next level myself and got in to see a LLMD tomorrow. I am looking to see if there are any important questions I should be asking him on our first visit and what tests should be asked to be done. He has 32 of the lyme symptoms out of the 37 asked on the test. I have been researching to death on this subject and just want some answers. To top it all off, he cannot get short term disablilty either, that was declined so any advice on how to fight the insurance company is greatly appreciated too, since that was our source of income....anyone out there help us???????
Posts: 3 | From grand rapids mn | Registered: Dec 2010
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posted
Not clear on how someone who has lost his job would be eligible for short term disability compensation from an insurance company. Those policies are usually written for employees thru their employer.
Could you explain a little more?
And how long has he been sick?
If you are definitely going to a LLMD, one that has been recommended by other patients, then that doctor will know what tests to order. Get copies of previous testing that was done and take them to the appointment. Write down a time line with symptoms. Have your information organized for the appointment.
Since the appt is tomorrow, you will probably not get very many replies. Short notice for us. Next time, give us a bit more lead time.
Good luck. Let us know how it goes.
Posts: 8430 | From Not available | Registered: Oct 2000
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onbam
Unregistered
posted
good thing you got in with an LLMD. will send my newby message anyway.
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I agree with Lou that it is very helpful to be as organized as possible. I was such a space brain when I first started treating and I was all over the place.
Try to focus on the main symptoms.
When you say both Lyme tests were negative, do you mean the western blot and the Elisa? What did the western blot show?
Posts: 2232 | From USA | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Both tests may be negative but (as you know) that does not necessarily mean a person does not have lyme. But, without a CDC positive insurance coverage is harder. Below are some explanations as to why tests so often are negative (beyond there being no perfect 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.
- Full article at link above.
===============================
Dr C�s Western Blot explanation is discussed here:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you have not yet done so, you might talk with those at your local lyme support group regarding their experiences with your insurance company or to borrow materials, etc.
Regarding disability help, rather than lyme, go with SYMPTOMS.
If, by chance your husband has issue with his inner/middle ear, THAT would be one way to go. Many with lyme also have balance problems and severe sensitivities to stimuli. I hope he does not but, if so, below are some details: ---------------
�� Resources for Disability, Insurance, Dealing with HMOs �� -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If, by chance your husband is sensitive to scents (colognes, cleaning products or even the soaps in public restrooms) it may be easier to get some disability help with a diagnosis of MSC (Multiple Chemical Sensitivies).
MCS also often goes along with lyme and other tick-borne infections - as well as with inner ear disorders.
I've very dizzy now due to a strorm front moving over so I have to stop. See teh MCS posts in this thread: ---------------
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