divine spark

I have received permission from the author of this Co-Cure message to post it here: Date: 03/07/05 19:15:40 If there are any PWCs who have experienced abuses from their Long Term Disability Carriers, I'd be greatly appreciative in hearing of same. Abuses are to be inclusive of either being unfairly denied, paid late, or only in part, or being abitrarily terminated, or harassed, etc. - via ERISA or private policies, and via very, very short summary of your experience (equavalent to no more than one half an 8x11 sized page - if I need more information, I'll let you know) to be e-mailed to me privately (address below). I absolutely will keep your contact info entirely confidental. This is to support a presentation regarding LTD issues as my testimony for the US CFS Advisory Committee, which reports to the new head of the HHS. Although I do have a lot of expertise in this area over my many, many years in Advocacy, there may be particular experiences that will be more illustrative, or that I haven't heard of as yet (the more I've heard the more I realize I haven't heard everything yet <BG>). Also, only if you have had an unusually difficult time obtaining SSDI, I'd like to know of this also. What should be included: Name City & State e-mail address LTD Company & very short synopsis of the LTD abuse (& ERISA or non) Or SSDI issue Please send synopsis to: tritt2@optonline.net Deadline for inclusion is this presentation is March 11, Friday. If this is not possible, I'll still be interested to gather more info thereafter. TIA Appreciative Regards, Suellen

Ernie, I have been through a couple sleep studies. Both times I arranged ahead of time to stay in bed until about 10 or 11 a.m. because I was so vulnerable in the mornings also. I always took my medications. Some of the measurements included: Left and Right EOG, Chin EMG, Abdominal Chest Movement, Nasal and Buccal Airflow, EEG, EKG, Anterior Tibialis EMG, Thoracic Chest Movement, Ear Oximetry, Intercostal EMG. Sleep architecture included the amount of time spent in each stage of sleep and also included the following: Total time in bed, total sleep time, sleep efficiency index, wake time, latency to sleep onset, wake time after sleep onset, latency to REM onset, number of REM periods and arousal index. They measured respiratory rate, the number of respiratory disturbances producing arousals per hour of sleep, the number of apnea/hypoapnea episodes lasting greater than or equal to 10 seconds causing 4% oxygen saturations. In addition to oxygen saturation, they recorded body position, leg movements and something else I can't read on my report. The sleep technicians virtually sat in front of their monitors all night keeping an eye out for any aberrant behavior. Once they finished hooking me up, I felt like an astronaut ready for takeoff. Overall not a bad experience.

I received the following information in a Co-Cure e-mail today regarding the handling of LTD claims by UnumProvident: The New York State Insurance Department today reached a settlement with UnumProvident. UnumProvident has agreed to a fine of $15,000,000, probably the largest fine levied against an insurance company in history. ALL claims denied by UnumProvident since 1997 will be REASSESSED--more than 200,000 claims. The UnumProvident claims process will be monitored for two years. UnumProvident must give weight to Social Security findings. Rules for handling future claims will be adopted. Yea for our side! Patti

Hi I thought I might share a meditation tape which a friend sent to me that might help you (or anyone who needs to heal for that matter). I just love this one. It is called General Wellness by Belleruth Naparstek. One side is instructions with 20 minutes of guided imagery. The other side has about eight to ten minutes of affirmations which you can do at any time, doing anything. She says that affirmations are more effective for some people than meditation is. Belleruth has many meditations available geared toward various health problems, including stress and relaxation. I bought the one on sleep but the General Wellness tape is my favorite. Patti

You might see if Dr. Grubb would write a report or letter for you. It could cost you some money but since he is an expert in this area and he has already seen you, I think his opinion would be extremely valuable in this effort. For some reason some doctors are afraid of the whole disability issue and refuse to support their patients no matter how unjust it is. They don't seem to consider what the additional stress they create does to the patient. They are forgetting the "First, do no harm." of the Hippocratic oath and I wish there was a way we could call this to the attention of medical doctors as a whole. Sometimes it is a matter of being uninformed. My friend's primary doctor wouldn't write a disability letter for her because he said he didn't know how. Now she and another CFS patient prepare a draft for him when they need this documentation. I would seriously consider another doctor also. You don't need a doctor who is making you sicker by creating the burden of additional stress. I, too, thought I was headed for a wheelchair and have just started trying to walk a little outdoors. I lived in my bed and on my couch for years also so please don't give up hope. And don't forget, the stress is working against you right now also.

I guess it is okay to say that I was using Tide powdered detergent. It also makes a neighbor of mine itch. I did not research this topic at all--just went with a detergent that was on sale--now using Safeway Select. Also am in the process of researching products containing propylene glycol (industrial anti-freeze), laurel sodium sulphate, sodium laureth sulfate, cocamide DEA, tallow, bleach and synthetic fragrances. One of these dries out the skin and might cause problems for people with eczema but can't remember if it is the propylene glycol or the next two I listed. Propylene glycol is made from natural gas. These chemicals are in sooo many products.

Interesting idea and one I have wondered about. Before my body totally gave out I put myself on a diet and started jogging for the first time. I lost 18 pounds and experienced a big increase in energy but although I "jogged" faithfully every other day for over three months, I was never ever able to go farther than one mile--and it took me 15 minutes!

I was having episodes of itching accompanied by sweating. After I read on another POTS discussion board that my laundry detergent contains fiberglass, I switched brands--problem solved.

Danielle, You talked with the wrong attorney. I went through this too, applied way too late and ended up living on credit cards for a long time. I have posted ad nauseum on this topic here and at ndrf.org. If I can help with suggestions, please write me at divinespark@dslextreme.com. Patti

Hi All, Haven't been here for a while and I haven't checked out that NIH link yet but I can tell you that one condition which contributes to B12 deficiency is small intestinal bacterial overgrowth (SIBO). I learned this from perusing the SIBO chapter in a gastroenterology textbook which I found on a shelf of my GI motility specialist's office. At the time I was a research participant during his study of SIBO in fibromyalgia and chronic fatigue syndrome patients. (Over 90% of about 50 FM patients were positive for SIBO by the way.) SIBO occurs as the result of infrequent/absent Phase III motility which is commonly called the housekeeper function. Basically, the small intestine is not kept clean so bacteria which reside in the large intestine migrate into the small intestine where they do NOT belong and they interfere with B12 absorption, among other things. SIBO is diagnosed via a hydrogen breath test and is BOTH treatable and preventable. The motility function is assessed via an antroduodenal motility study. While SIBO is a condition which has medical science has known about for decades, I was told that it was not easily or inexpensively diagnosed until the last few years. A culture of the small intestine is impractical because it is about 21 feet long. In addition, some of these bacteria (there are 300 to 400 species) are anaerobic and die upon exposure to oxygen. You might want to consult with a GI motility specialist. Treatment and prevention of SIBO has brought about major improvement in patients' lives. I had had an elevated sedimentation rate for at least seven years which my primary care doctor unable to lower with medication; once the SIBO was addressed, it returned to normal. In addition, I had been made extremely ill by both Mestinon and Ambien; after treatment for SIBO I was able to tolerate both of these medications. Please feel free to contact me with any questions as I have had quite a bit of experience with the treatment and prevention aspect.

An antroduodenal motility study revealed I had infrequent Phase III motility, commonly called the housekeeper function, and I took erythromycin for it at bedtime for an extended period of time (1/4 tsp. in 8 oz. of water at night). It worked pretty well until I became intolerant of it. After that I tried Zelnorm which made me terribly ill. I have read on posts here from Dan that there is at least one supplement which may improve GI motility but am not personally familiar with this approach. The hair loss might be due to the hypothyroidism and I am betting (just my opinion) that you will get your hair back. Stress can cause it to fall out also. So can low estrogen.

I assume you have already looked into this but have you checked to see if any other meds you might be taking could be contributing to the depression? I started having crying spells when I was on propanolol which lifted when I stopped taking it. Just a thought........ I, too, am experiencing the worst depression in years and am housebound so getting out for support is impossible. I just tell myself that this is just one more of life's challenges and I will overcome as I have in the past. I hope you feel better very soon. I know how hard it is.

Hi, The following group is invaluable in helping one understand the process for applying for SSDI, SSI, ERISA and non-ERISA LTD and it includes links to information on the Canadian Pension. It also helps one get through the review processes that follow after approval. http://groups.yahoo.com/group/Disinissues/ Disinissues has expert advisors on board to answer questions, as well as patients who share their experiences.

You are welcome. I have purchased supplements from Pro Health for at least 11 years and that is how I know the immunesupport.com site. Their owner, Rich Carson, is a CFS patient. I had forgotten that Co-Cure has a good doctor list; my bookmarks got all messed up and disorganized with a computer change also, although I still subscribe to their daily emails. The other one belongs to the National Fibromyalgia Association which is headquartered in my neck of the woods. My doctor is a long-time medical advisor for NFA, is editor of the supplement for physicians in their magazine, Fibromyalgia Aware, and I know some of the Board members. Had my health permitted, I probably would be an active volunteer for this group. In fact, I have been pondering whether I should inquire about possibly getting an article on POTS published in this magazine since it appears that a number of us have FM or CFS or both.

Here are two sites which list support groups in your area: fmaware.org and immunesupport.com. I don't know what the requirements are for the kind of disability benefits you are seeking but these groups should be able to recommend a doctor who is willing to support a disability claim when appropriate, a doctor who knows how to write a disability evaluation report and a competent attorney. I found both of my treating physicians and two disability attorneys this way. Last month I found an SSDI attorney for a friend who was injured at work via an FM support group.

What state are you in? (Other than disgusted, of course. )

Just about everything you need to know about the SSDI or SSI application or review process can be found at the following address: http://groups.yahoo.com/group/Disinissues/. This site and the information shared by its members is a gold mine for people with illnesses like ours. Also, Jenn, if you look under the topic, Disability Doctor, at ndrf.org, you will find a current lengthy post about finding an attorney. The topic was LTD insurance but some of the information is still relevant to SSDI.

Jersey Girl, You might want to try the referral service of The National Organization of Social Security Claimants Representatives: http://www.nosscr.org/refer.html Also, I am assuming you posted a request with the Disinissues group to see if one of the members can give you a referral? If not, then I recommend you do that also in seeking an attorney. Best Wishes.

I highly recommend that anyone going through the approval process for SSI, SSDI, LTD (both ERISA and non-ERISA) or going through a review join the Disinissues group at Yahoo. com.: http://groups.yahoo.com/group/Disinissues/ The advisors in this group include attorneys who specialize in these fields, as well as patient representatives. In addition, patients offer what worked or didn't work for them. The information provided by this group is invaluable; I have learned a great deal from them just from reading the emails and wish it had been available when I was going through the initial application processes. (Even though I already had a very capable attorney fighting my LTD review battle last year, I read these faithfully every day.) Their links also include information on Canadian pension matters although the emails have been limited to U.S. plans only. You can win disability with the right stategy. I hope you find this information empowering! Patti

Here's a site you might enjoy as it relates to the brain fog so many of us experience: http://www.geocities.com/cfsdays/follies.htm I stumbled across a chat room in December just before Christmas with a lot of very nice and witty people. It's addictive. I have laughed more in the last month than I have in years. On three nights in one week I was still laughing after I went to bed. It has really helped me through a very difficult time.

Yes, I have those twitches; they usually occur at night when I am trying to go to sleep. I never know which part of my anatomy is going to do the twitchy dance. Last night I was watching television and felt one strong and somewhat painful electrical sensation in the ball of my right foot, accompanied by milder shocks. Following these events my entire right leg jerked so strongly upward that I was pretty amazed and impressed. I was wondering what on earth I would do should they continue. They have not.

lalalisa, I am SO exhausted and am basically home-bound also. I only go out for medical appointments and I don't even do enough of that. ling, I hate having to get out of bed and face the day too, even though I don't have to go anywhere. Patti

Nina, Pain will definitely increase BP. I discovered that when I used to have fibromyalgia pain (same for other FM patients). I've taken BP meds for quite a long time; some I couldn't tolerate. One, a calcium channel blocker called Norvasc, contributed to restless legs syndrome. Was on Diovan for a long time until I became intolerant of it. After discontinuing Diovan my BP "normalized" and I had some of the healthiest BP readings since becoming ill many years ago. Then last July along came full-blown POTS; sometimes BP is as high as 180/100-120 in the doctor's office. I'm still in a state of flux and don't take my BP often because I just started a beta blocker and I just refuse to subject myself to more worry. My bet is that your GI problems are contributing to the increased BP. My BP always increased with GI bacterial overgrowth and I don't even experience pain with it.

Yeah, Michelle, no wonder I've been so confused.

Add me to the list of people who experience this symptom. It often occurs with a morning rollover. I have never measured my HR when it happens so I don't know how much it increases.