Going to Lose Insurance! my CFS story...

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kie
New Member


Date Joined Oct 2006
Total Posts : 17
   Posted 10/31/2006 11:46 PM (GMT -7)   
hi everyone, this is my first post, hope i do this right.

I've had chronic fatiuge immune dysfunction syndrome for a couple years now and am attending college part time because it's all i can handle. My insurance company will drop me in a few months unless i am either going to school Full Time or working full time and i know that my body will just crash if i put that much stress on myself. (its hard enough as is). I live in Massachusetts and my doctor knows of a test that is FDA approved for CFS to cover insurance only in a few states like california and florida but not in Massachusetts. He told me to find a forum and see if anyone knows of any tests that insurance in Massachusetts will accept as proof of CFS because he does not know of any.

**Has anyone been able to get medical insurance coverage in Massachusetts with CFS? are there FDA approved tests to prove CFS that are acceptable in Massachusetts?

here's a little history of my situation. when i was 6 i got chickenpox and i almost died of an autoimmune disease which came along for me with the illness (chickenpox) called ITP which apparently usually is not a real problem for children but for some reason was for me. i had always seemed to get sick a little easier than everyone else but wasn't much of a problem. at 12 i had severe migraine headaches and horrible cramps with heavy menstral cycles. at 13 i was diagnosed with clinical depression and with medication i was pretty much healed of it. i was also diagnosed with eczema though i see little to no signs of it. then at 14 i contracted Mononucleosis. After that i just never seemed to get better; to the contrary, i seemed to get more and more fatigued. basically every symptom of CFS i had. i've had adrenal tests done which show that my adrenal levels are very abnormal and proved why i could not get up in the morning and why i was constantly so tired yet never refreshed after sleeping. Last year i had a live blood test done which showed that my white blood cells which are basically the immune system were not functioning... at all. My doctor described them as a vaccume which is supposed to travel around the blood eating up all the bad things. My white blood cells did not move; they just stayed in one spot pulsing. a small piece of yeast (which is in everyone in small amounts and kept in check by immune system and good bacteria so not to grow which would become a problem) floated by and actually bounced off the white blood cell, and still it did nothing to try and destroy this piece of yeast. I have found that Colloidal Silver (a homeopathic immune support) to be helpful. (when i ran out, i suddenly got a very bad cold). Another thing that had helped was a homeopathic remedy called Aquaphase-V for viruses. In the begining of the year on an annual gynecology check up i was diagnosed with a bad yeast infection. we tried several different medications and it just would not kill it. one finally did but it over killed it and caused bacterial vaginosis. (it won't go back into balance) then the medication for the bacterial vaginosis caused the yeast infection again and it just isn't going away. upon research i found that many people with CFS have trouble trying to get rid of candida (yeast) infections. i've been taking lactobacillus pills on a daily basis and now taking medications for candida and sugar allergies or sensativity to candida and sugar which seem to be helping which lead my doctors to believe i have excessive yeast deeper in my body which could be causing a lot of these symptoms. (will be doing blood test for this particular allergy soon). on my mother's side we found 2 cousins who also suffer from CFS. they managed to get health insurance because of their husband and father, but i'm not married and my father doesn't own his own company. i just can't do full time, i tried optomistically and it just drained me of all my energy and i became even more ill getting sick much more often and just feeling like i have a cold 24/7. i had to leave highschool the middle of my junior year and get a GED because i just wasn't able to attend school on a regular basis and the academic stress made my symptoms worse. If i have something other than CFS i want to know, especially if it means i can cure it and be healthy or get my insurance. What tests are there that people have found success with? However, all my symptoms point to CFS. I read the latest research on CFS and see that things r being discovered that i could've told researchers a long time ago had they just asked. for example, mental stress intensifies symptoms and also, (in a nut shell...) people with CFS compared to people without health problems were both able to get up and perform the same vigorous activities without difference; however the following day, people with CFS showed significant energy decrease while people without health problems were consistant with the following day. For example, for me, getting up for the first day of school i would have no problem and would actually start to believe that my CFS was going away and that i could do this consistantly form now on and would go to bed optomistic... the following day i could barely even open my eyes and just couldn't get out of bed, my body would be so exhausted to the point i just could not move the whole day. So, all signs point to CFS. Do my other illnesses have a connection with CFS? Practically all of the illnesses i have had in my life i have found a blood relative who also has the same illness (with the exception of ITP) so there must be a genetic disposition. How do i prove any of this to the insurance company in Massachusetts so that i can keep my health coverage? are there acceptable tests in Massachusetts?

if anyone has any answers, Please Help!!

kie
New Member


Date Joined Oct 2006
Total Posts : 17
   Posted 11/1/2006 12:14 PM (GMT -7)   
thank you for your reply knickers! i have not been able to see a chronic fatigue specialist because i have only been able to find a few in my area (boston area) and they aren't accepting new patients because there are just too many people with this illness looking for help and so few doctors who specialize in this field. i actually had to switch my primary care doctor 2 years ago because my old doctor doesn't believe CFS is a real illness. (hah!) but unfortunately, while my current doctor is wonderful and very knowledgable, he doesn't know specifics about CFS. i also go to a NUCCA chiropractor on a regular basis who are also holistic counselors (i'll be seeing them again very soon) and have been extremely helpful. when i see them this week we'll be making a list of tests for my primary care to have done for me and so while they are very good doctors, no one knows everything, and people who are going through this same thing may know more. i know that there is no test to prove CFS (had a big problem with that in dealing with my school) and so i know that its basically ruling out other illnesses (anyone have a list?) and the symptoms. however, since people in certain states have been able to get insurance to cover them for CFS based on certain tests i'm wondering if there is a similar thing for MA. will they accept anything?
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