Letters From Our Readers – Comments & Suggestions 12-19-07

A Source of Info on Financial Resources

I have had chronic Lyme disease for 38 years this Christmas – after 34 years of being misdiagnosed with Fibro/CFS, etc. I want to make your members aware of an outstanding list [of financial resources that could be helpful for anyone], compiled by Lyme Disease Network (Lyme Net) member Melanie Reber from information contributed by countless other members.

The list is titled “Methods of Coping with Financial Burdens” http://flash.lymenet.org/ubb/Forum1/HTML/035162.html

Topics include:

  • Methods of Coping with Financial Burdens;

  • Getting to the Doctor;

  • Affording the Medication;

  • Emergency Funds’ Gathering your Resources;

  • Know Your Expenses;

  • Deduct Your Expenses;

  • Paying Your Bills;

  • Learn to Budget;

  • Cutting Back;

  • Disability Issues;

  • Other Programs;

  • Home Loans;

  • Bankruptcy;

  • How you can make a difference.

  • The above gives you an idea of what you will find in there. Happy hunting! – Betty G, Iowa


    DVD Will Help Family Understand

    I have Fibromyalgia, and I ordered the DVD “Living With Fibromyalgia.” I watched the movie and can’t wait for my family to look at it. Then they will understand better what I go through. I was so active before and no longer can be, but I have it pretty much under control. The DVD will help because it is a disease you can’t see, so people don’t realize how you feel since they can’t see it. Maybe the DVD will show them how it is with others and be more understanding of how I feel. – M


    Thyroid Tests Important for FM Patients

    Many of us Fibro patients are hypothyroid, and when this is properly addressed, the Fibro symptoms are greatly relieved and in some cases totally eliminated. I don’t see this addressed in many Fibro forums, but it is a fact and it is the patients who are subclinically hypothyroid who are the most affected. Doctors shouldn’t be paying attention to TSH [thyroid stimulating hormone] as it is a pituitary hormone. Instead, attention should be paid to the Free T3 and Free T4 levels [two thyroid hormones], and more importantly, doctors should be up to date on the new ranges for thyroid testing.

    Attention should also be paid to adrenal function, as this can have a bearing on Fibro and body function; if a person is under a lot of stress, or has been in a stressful situation for a long time, then issues of adrenal fatigue should be investigated and addressed. Saliva testing by a competent lab can accurately show this for the benefit of both doctor and patient. Patients should also have their iron levels tested, including storage iron. Aldosterone and renin levels would also not be out of line, as these are part of adrenal function.

    Another thing that doctors aren’t addressing is Hashimoto’s Thyroiditis. This is serious and there are two antibody tests that check for this…

    All the above can make a huge difference in the life and functioning of a Fibro patient. I should know. I am a Fibro patient who was undiagnosed hypothyroid most of my life and I eventually developed Hashi’s. This could have been prevented by an alert and caring physician. The Fibro could also have been prevented by properly diagnosing and treating my hypothyroidism… [Doctors should] treat patients as a whole person, not a bunch of symptoms; the body works as a unit, not a bunch of unrelated organs, and the endocrine system is no exception to this principle. – Catherine


    Research Discriminating Against Seniors

    Re: “New Trial of Constipation Predominant IBS Treatment Now Recruiting at 69 Centers in U.S. and Canada”

    Why is 65 the magical cutoff age for people doing drug trials? Except for Fibro and some arthritis, I am in good health for my age (74). Goodness knows, aren’t we the ones needing most of this stuff? – D


    Chemical Sensitivity Possibilities

    Regarding chemical sensitivities, I am especially sensitive to material dyes and sizing compounds. I cannot wear new clothing prior to washing even though I stick to white or light colors. Newsprint is my most difficult chemical sensitivity. I sneeze, itch, and my eyes water. I have been tested twice for allergies and was not sensitive to the test chemicals. I hope that this helps someone. – Fred


    Thanks for Giving Us a Voice

    I want to thank ProHealth for giving us a voice. We have come a long way since “It’s all in your head.” Many of us know how it felt. I used to despise that word, but today I truly believe it is in our brains – of course not in the hurtful and degrading way that was expressed in the early years… Millions are suffering from this devastating illness and we’re getting some respect back. We owe a lot to people like ProHealth, P.A.N.D.O.R.A., etc. for raising their voices as loud as a thunderstorm. – Helena


    Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, mitigate, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in consultation with your professional healthcare team.

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