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From Our Readers – Comments & Suggestions 07-15-09

1 Star2 Stars3 Stars4 Stars5 Stars (28 votes, average: 3.80 out of 5)

Vitamin D Test – My Doc was In Shock!

Re: Medicare’s proposed restriction on coverage of vitamin D testing (scroll down to Noteworthy News).

When I had my vitamin D levels checked I was a low 15. Then my doc was in such shock, since he was NOT into testing D levels and he had his own levels checked and he was a low 13! …Dr. Williams in his June Alternatives newsletter emphasized the immune system too with having optimal Vit D levels. Hence, being able to fight off flu, etc. My [current] doc likes her patients between 60-80. I'm closing in at 60. And we need to keep them UP. – J


Why Cymbalta® and Lyrica® May Help Some & Not Others

Re: “Identification of fibromyalgia patients who may not be appropriate candidates for duloxetine [Cymbalta] and pregabalin [Lyrica] therapy”

This is a very detailed and interesting find. Somewhat confusing with some of the symbols, however found to be an easy read. I am or was a RN. I was diagnosed with Fibromyalgia after a work injury. I was healthy. No one doctor knew what was wrong. I ended up with the help of Google diagnosing myself first. Doctors need MORE awareness of the contraindications with the use of SSRI and Lyrica together with ultram. The pharmacy says it can cause serotonin syndrome. Cymbalta made me sweat profusely. Lyrica made me too tired all the time. Overall this was a great study. The medical community needs to do more research on this devastating disorder. GREAT JOB! – A


New International Good Doctors Database

My name is Garrett from ChronicFatigueTreatments.com. I recently built a searchable database of CFS doctors. It contains over 500 doctors in 4 countries (US, UK, Canada, and Australia). Right now the results are mostly ME/CFS-friendly doctors, but the listing will include FMS and MCS doctors also. I need your help to make the database as complete as possible. If you have a doctor that you would like to recommend to the CFS/FMS or MCS community, go to: www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-doctors/, scroll down to find “Leave a Comment,” and enter the doctor’s name, address, phone number, and any other info you have, such as email address or website. I will make sure to add it to the database, a.s.a.p. – G


For Gardeners with Fibromyalgia and Other Challenges

I found this Accessible Gardening Discussion forum (http://davesgarden.com/community/forums/f/disabled/all/). There are pages of posts with good information on gardening for people with Fibro and other physical challenges. – J


Community Meal Programs – A Great Option If Shopping & Cooking Is Hard

I haven't used it, but Meals on Wheels is very good. Meals on Wheels is run mostly by volunteers. Check with your Senior Center or Community Center to find out about it. At our local senior center, a reasonably priced meal is served every day. The Meals on Wheels program is run through there; it’s great. I have gone there for the lunch, the people here are so nice and friendly. – G

Note: To find a local meals-on-wheels program in the U.S. or Canada, go to www.mealcall.org. Their database lists 22,000 programs. Each is an independently run operation, so you’ll need to ask your local program about details. (When we searched on our town we turned up contact info for three different meal programs.)


New Jersey Senate to Vote on Bill Funding ME/CFS/FM Research Center – Please Help!

Please write to support creation of a research center in New Jersey focused on neuroendocrine immune diseases, with CFS/ME [and FM, MCS, Lyme, Gulf War Illness, and more] specifically included. This affects YOU, even if you do not live in New Jersey. This has already been passed unanimously by the New Jersey State Assembly and is now in the state Senate.

See following link for details. Thank the Assemblyman(woman) sponsors and write to the sponsoring Senators (Weinberg/Bateman), who could use the encouragement/letters: www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=14673


After a Lifetime of Frustration – Celiac Disease Is the Diagnosis

As one who suffered from “IBS” for 5 decades, I [had] a severe case, with 3 inpatient hospitalizations during my IBS years. I was tried on many different meds, including Bentyl. Unfortunately, for me, Bentyl did not help. Nor did any of the other meds I was tried on…

Serendipitously, I discovered that I was gluten intolerant. After faithfully following a gluten-free diet, within one month, my severe gut and rectal spasms evaporated. This miracle has been upheld for 5 yrs now, with only 1 relapse, when I purposefully cheated on the diet. Within hours, I was back in bed with pain…

Not that I think everyone with IBS is gluten intolerant – but I do believe at least a subset of us are. – S


The Acetaminophen Issue – It’s About Educating the Public

Re: FDA wants to ban Vicodan and Percocet

I think what the government should do, is have a huge campaign identifying that taking more than 4 g of Tylenol per day on a long-term basis will potentially cause liver damage. It's about educating the public. – K

Instead of banning meds that help people, the FDA should work on educating doctors and the people who sell the meds to the doctors. If doctors were better communicators and kept in touch with their patients on these meds… maybe if our doctors communicated with us about usage then we would all be safer. The key right now though is educating ourselves and others as much as we can, and to never forget that your pharmacist knows the most about meds and their reactions with each other. – H


When They Say “Why Don’t You Just Take Some Vitamins and Get Better?”

I have been on both sides of this issue. Many years ago my sister became ill with Lupus. I was devastated for her. I wanted to help. I was really on a health kick back then and I had not yet gotten sick with FMS and CFIDS. I remember sending her some herbs and vitamin supplements because I thought they would help her feel better. I didn't know any better. My sister, God bless her, was so kind and grateful and simply understood that I was trying to help her.

Now that I am sick I realize how simplistic my thinking was back then. I have since apologized to her, but she knows that I was coming from a loving heart. This taught me a lesson. It has helped me to be more gentle with people who recommend supplements or treatment therapies to me. If they are my friends or family, I know they are trying to help me. I just say “thank you for the recommendation.” – L


Water Damaged Building (Mold) Illness and Fatigue – New Scholarly Article

Published in the Summer 2009 issue of the Bulletin of the IACFS/ME“Exposure to Interior Environments of Water-Damaged Buildings Causes a CFS-like Illness in Pediatric Patients: A Case/Control Study” by Ritchie C. Shoemaker, MD [author of Mold Warriors ] and Margaret S. Maizel.

This is good news on several fronts.

– It shows that a subset of patients diagnosed with ME/CFS have very specific (and very important) diagnostic test results that are abnormal. Anytime we can get testable, abnormal lab tests for any ME/CFS folks, that's a good thing. Two especially important labs that are abnormal in water-damaged building (WDB) illness are melanocyte stimulating hormone (MSH) and vasoactive intestinal peptide (VIP). Both of these tests can be run through LabCorp.

• It shows that there's a genetic predisposition to WDB illness (another thing that can be further tested and explored).

• It's a peer-reviewed (scholarly) medical article, but it's available for free on the internet. That means patients won't have to go to a medical research library in order to access it. They can print it out and show their doctor.

• Note that the article specifically addresses children, but the general description of WDB illness is also applicable to affected adults.

• My take on it is that it's further evidence that the ME/CFS designation is a "place holder" and lumps many different subgroups of folks in together. Hopefully we can start "peeling" more and more ME/CFS folks away into subgroups identifiable by diagnostic lab results.

• Even though at the national level in the UK and the US there are very influential folks trying to lump all ME/CFS folks into the "it's all in your head" camp, these kind of articles help to counteract that trend. This article isn't applicable to many, many ME/CFS folks, but it's a good trend. The truth will set you free! – L


Horrible Symptoms After Levaquin®

I have the exact same symptoms as so many of you [with FM]… Mine started 6 months ago after taking a powerful antibiotic called Levaquin. Within 1 day of taking this antibiotic my body exploded in such horrific and unprecedented symptoms… I went by ambulance that first day back to the ER that originally gave me this Levaquin (I passed out 10 to 15 minutes after taking this but they said it was a "vagal" response) and they continued to give me this Levaquin and had me take it for another 6 days. I went back to that ER 2 or 3 times during this week not knowing what was making me feel like I was dying.

And each time they would ask if I was taking anything and the only thing was this Levaquin. For some incredible reason they never once told me in 6 or 7 ER visits to stop taking this medicine and I sure as heck didn't know enough to even consider this a cause, as I was given this medicine without warning brochures.

Well, since this time I have had pain in my limbs, a torn rotator cuff, my feet and heels and foot bottoms, and other weird places. I am so weak I can't work. Lost my job… For the first time in my life I am on anti-depressants. Doctors have given up on me here saying all the tests come back negative. …it is almost impossible for others like my wife and kids to comprehend what I am going through. They just can't accept something this debilitating and that can't be diagnosed or treated so it will just go away. – J

Note: though Levaquin is known as a potent antibiotic that works very well for many people, for others it “is associated with a number of serious and life threatening adverse reactions as well as spontaneous tendon ruptures and irreversible peripheral neuropathy” (see http://en.wikipedia.org/wiki/Levofloxacin). It interacts with many other drugs and natural supplements. Indeed as with any new medication, if you receive a Levaquin prescription you might want Google it, determine if your prescribing physician is aware of the possible adverse effects, and discuss with your pharmacist.


Two Things Helped My Sleep

I started using micro-current therapy (Alpha-Stim®) about a year ago and it has significantly helped my sleep. Just recently, I discovered that a local health club had a far infrared (FIR) sauna, and I have been doing these saunas for about two weeks now. I had heard that these FIR saunas can improve sleep, and it has turned out to be true for me.

I'm still not sleeping what I would consider "normally," but I am able to manage approximately 8 hours a night of somewhat broken sleep; much better than before I added these two modalities. – W


Lidoderm® Patches Help My Headache, Cramps, and Other Pain

You can cut them and make strips for your forehead for headaches and I use a full one for cramps. To get them to stay on I use 1 inch waterproof medical tape. I found that hurts the least when you take it off. You can also take it off by going slow and pushing the skin down as you go along pulling off the tape.

These patches help with pain over time. Sometimes they take an hour or more to kick in. I also leave them on for a day or a night at a time and they help more and more over time for pain that's staying in one place. They help with my ankle pain enough to make it so I can walk around pain free if the pain that day is primarily in my ankles, etc… – T

Note: these patches contain the local anesthetic lidocaine. They are used primarily to relieve post shingles nerve pain, and like most medications come with certain warnings, so as always check with your doctor or pharmacist before considering this idea.
This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, 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 collaboration with your professional healthcare team.

1 Star2 Stars3 Stars4 Stars5 Stars (28 votes, average: 3.80 out of 5)

4 thoughts on “From Our Readers – Comments & Suggestions 07-15-09”

  1. nickisam says:

    A reader recently posted his story of adverse effects from taking Levaquin. The symptoms he mentioned reminded me of Bartonella symptoms – a tick borne disease. Bartonella can give foot and heel pain amoung other symptoms. These symptoms could possibly become worse upon the use of Levaquin.

    I realize Levaquin has it’s own known adverse effects. Many with Lyme disease have greater symptoms after taking or starting antibiotics.

    I hope this reader has seen a good Lyme Literate medical doctor (LLMD) to have themselves tested for Lyme and other tick borne diseases. A Lyme literate doctor is suggested as testing for Lyme is not straight forward.

    I, myself, was misdiagnosed for 8 years with FM and CFS, but I really have Lyme.

  2. picksgirl says:

    Salopas has a new,larger patch that emits heat for 8 hours and does not have a bad odor. I recently went to a three day convention and before I left I was having a bad flare-up with my siatic nerve. I used the patch in the middle of by lower back for two days and it was wonderful. NO PAIN!!! I didn’t have to use it at all the third day. This was three days of sitting from 9-5 with a 2 hour break and walking two blocks to the parking lot. Not something I can usually do.

    1. picksgirl says:

      Sorry with my spelling. That is Salonpas patches.

    2. Sandy10m says:

      I also was blood-tested for Vitamin D, and my levels were low. So, I bought a high dose Vitamin D3 supp (2400 IU). I took it the first day and was fine, but then I had a huge migraine the next day that would not respond to medications (that doesn’t happen to me). Since I only add one new thing at a time to my regimen, I stopped the D3 to see if the problem went away. It did. A few weeks later, I tried again, with the same results. Instead, I bought 400 IU capsules and slowly worked my way up. I got up to 1200 and started having trouble with the migraines again, so I dropped back down to 800 IU each day. This seems to work. So, moral of the story is that you have to start this SLOWLY, get the 400 IU capsules, and take ONE for a few days, then add the second one for a few days, etc., and watch your symptoms. Good luck everyone!

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