What worked for me

[Jenny]

I was just looking again at the 'What worked for me' thread on the Pro Health ME message board. There are over 30 pages here listing treatments that people feel helped them. Apart from anything else it's encouraging to read people's reports of improvement when you've been stuck in bed for months.

I was wondering whether we might start something like that here, but in a more organised way, perhaps a bit like Revolution Health which has ratings for treatments.

Is there any way this forum software could help us do this? Also it would be great if we could have something where when people start on a new treatment they can track their progress over time so that others can see.

Jenny

 

[xlynx]

Hi Jenny,

that's a lovely idea, that would be great again I arranged.

Would you mind to post a link where I can find the pro health me messageboard and this thread as I can only find the fm board.

Thanks Jerry

 

[Jenny]

http://www.prohealth.com/me-cfs/blog/boardhome.cfm

 

[m1she11e]

I started reading that very long thread on Pro Health. What I found (maybe I didnt read down far enough) is that alot of people found things that helped them a little. I wish there was a thread of people who truly get well, or at least 70 percent better...

 

[Victoria]

I started reading that very long thread on Pro Health. What I found (maybe I didnt read down far enough) is that alot of people found things that helped them a little. I wish there was a thread of people who truly get well, or at least 70 percent better...

Mishelle,

although I am not well now, I DID feel completely well & pain free from FM for 3 months July-Sept 2005 on a 100% dairy free, grain free diet.

There must have been other contributing factors at the time I suppose, OR maybe it was just co-incidence.

I've only ever been able to last 3 months on grain/dairy free though. Early last year I was starting to improve dramatically when I was mostly grain/dairy free (& then I took a nose dive down again later in the year).

My MCS is bad at the moment. Not sure why. I started going downhill when I got a home computer & scanner on/around 9th October last year.

But once again, that could have been purely co-incidence. I use a computer every day at work.

When I stop full time work in a couple of weeks, I will once again try to get 100% dairy/grain free & go right through my flat, shelf by shelf, room by room & see if I can find some hidden source of the problem.

Unfortunately, I can't remember how many of my current supplements I was taking back in 2005.

Diet plays a major part in my wellbeing, I know that for sure.

So it will be "trial & error" again. I hope to narrow down what is causing my decline.

An interesting thing happened in my office at work about an hour or so ago. By the way, I have been experiencing dizziness & vertigo as well as other symptoms in recent months at work. A couple of staff (who had heard I was leaving) came to visit me. One of them came to the other side of my desk (where I am sitting right now) & all of a sudden she felt dizzy & rather odd. She quickly went over & sat on the chair near my office doorway.

She said it was the weirdest thing, she felt disorientated & dizzy (thought she would pass out).

Now wouldn't it be "funny" if my replacement got "sick" & it turned out there was something in my office that was causing "symptoms"?

 

[JPV]

I read parts of that post over at ProHealth, and although I found it interesting, I also found it very confusing... as I do most information about this damned condition that I find on the Internet.

I think what would be more useful, is some kind of database of treatments and supplements with percentages of people that have benefited from them.

Unless there is way to analyze the data, and put it in some sort of context, I find it to be pretty useless.

 

[mezombie]

Ken Lassesen, moderator of CFSMExperimental, put together something like what you are looking for, JPV

http://www.lassesen.com/cfids/protocols.htm

 

[JPV]

Ken Lassesen, moderator of CFSMExperimental, put together something like what you are looking for, JPV

http://www.lassesen.com/cfids/protocols.htm

Thanks for the link.

 

[Jenny]

Thanks for the link.

Thanks the kind of thing I was thinking about JPV. Something more organised that people's narratives about how they did on certain medications, supplements and protocols. And perhaps a way of tracking your progress when you start something.

Ken Lassesen's chart is helpful but quite old now - done in 2005 - and people here are starting lots of new treatments.

Jenny

 

[liverock]

Mishelle,

although I am not well now, I DID feel completely well & pain free from FM for 3 months July-Sept 2005 on a 100% dairy free, grain free diet.

There must have been other contributing factors at the time I suppose, OR maybe it was just co-incidence.

I've only ever been able to last 3 months on grain/dairy free though. Early last year I was starting to improve dramatically when I was mostly grain/dairy free (& then I took a nose dive down again later in the year).

My MCS is bad at the moment. Not sure why. I started going downhill when I got a home computer & scanner on/around 9th October last year.

But once again, that could have been purely co-incidence. I use a computer every day at work.

When I stop full time work in a couple of weeks, I will once again try to get 100% dairy/grain free & go right through my flat, shelf by shelf, room by room & see if I can find some hidden source of the problem.

Unfortunately, I can't remember how many of my current supplements I was taking back in 2005.

Diet plays a major part in my wellbeing, I know that for sure.

So it will be "trial & error" again. I hope to narrow down what is causing my decline.

An interesting thing happened in my office at work about an hour or so ago. By the way, I have been experiencing dizziness & vertigo as well as other symptoms in recent months at work. A couple of staff (who had heard I was leaving) came to visit me. One of them came to the other side of my desk (where I am sitting right now) & all of a sudden she felt dizzy & rather odd. She quickly went over & sat on the chair near my office doorway.

She said it was the weirdest thing, she felt disorientated & dizzy (thought she would pass out).

Now wouldn't it be "funny" if my replacement got "sick" & it turned out there was something in my office that was causing "symptoms"?

Victoria
Besides the "usual suspects" such as computer EMF radiation (particularly CRT monitors), cell phones and fluorescent lighting etc, the new energy saving bulbs which are used in the home can be a source of "Dirty EMF".

Might be worthwhile trying to persuade your employer to get the office tested for the level of EMF radiation. If more than one person is feeling symptoms then they might be persuaded that there is something more than 'its all in your head'.

People with MCS seem to be particularly sensitive to stray EMF levels.

http://www.lifeenergysolutions.com/blog/2/the-hidden-truth-on-energy-saving-bulbs/

 

[JT1024]

I was just looking again at the 'What worked for me' thread on the Pro Health ME message board. There are over 30 pages here listing treatments that people feel helped them. Apart from anything else it's encouraging to read people's reports of improvement when you've been stuck in bed for months.

I was wondering whether we might start something like that here, but in a more organised way, perhaps a bit like Revolution Health which has ratings for treatments.

Is there any way this forum software could help us do this? Also it would be great if we could have something where when people start on a new treatment they can track their progress over time so that others can see.

Jenny

Hi Jenny,

I agree that having a tool to track symptoms, treatments, and their outcomes objectively is invaluable. For that reason, I use the tools on www.patientslikeme.com. The forum will most likely drive you nuts but the tracking tools and the ability to view aggregated data from many patients is helpful.

Many in the FM/CFS Community haev been seeing rheumatologists since the FM Community was started before the CFS one. That have FM and CFS together due to the overlap (I think) in symptoms.

The tools are simple to use. Check it out!

~ JT1024

 

[Jenny]

The patientslikeme site is just amazing JT! I'll have no time for our board now!

The tools are just what's needed (though of course most people are on so many different treatments it'll be hard to say which are helping over time.)
Interesting that gluten free diet has high ratings, though only a small number of people have tried it. Seems that getting a great dane is good for anxiety!

My only disappointment with this site is that the closest thing to our illness is the category 'fibromyalgia and cfs'. I would never describe my condition as CFS. No mention of ME. And most of the people in that category seem to have FM as their primary diagnosis. Also the emphasis is on the effectiveness of various treatments for pain, stiffness and fatigue. Many of us get all these of course, but I would say my worse symptoms are the extreme flu-like malaise and 'poisoned' feeling and the awful vertigo I sometimes get and these aren't mentioned in the pre-set categories.

The main treatments evaluated are pain medications. Nothing much on anti-viral drugs (valcyte and ampligen don't appear for example).No-one's mentioned Rich's methylation protocol though B12 is there. Low-dose naltrexone's been evaluated by a handful of people, with positive ratings.

But there are over 700 people on there charting their progress.

Could we incorporate this site on this board somehow (though I guess this would be difficult for commericial/copyright reasons)?

Could we all get on there and ask them to have an ME category?

Jenny

 

[readyforlife]

I would also really like an area on this website where we could read about what is working for people. Cort could you give us some ideas, maybe blogging would work.

 

[Amyiable]

What Helped Me (free t3)

I was taking Humira, Enbrel, Methotrexate, cortisol shots for pain. Difficulty, using hands to open doors, turn knobs, dress, and sometime walking. Doctors insisted that my pain was from arthritis.

Later, I learned that my ft3 was low, began researching, and eventually taking desiccated thyroid hormone. I had no idea the pain would actually disappear once ft3 was in the top 1/3 of the lab range. But, disappear it did. My rheummy doesn't understand why I no longer need any the arthritis drugs, & she says I'll be back. Maybe I will, But I'm on year 8, since I've stopped those meds.

Other benefits since getting ft3 up, my bones. My bones were steadily declining, every year, and I was osteopenic, bordering osteoporosis. After starting desiccated thyroid meds, the bone decline stopped and then began to improve. As of last Dec, I am no longer osteopenic. Other benefits, food allergies. I still have them, but not nearly as bad. Depression better. Fatigue - much much better, and I can make it through a full day at work.

The main reason doctors did not recognize a thyroid problem is that I they like to rely on TSH test to tell how the thyroid is doing. The TSH test measures a pituitary hormone, not a thyroid hormone, and is terribly unreliable. I learned this from an online group, and then had to find a doctor who also understood this. There are plenty doctors out there who understand. In fact, all Integrative Wellness doctors know that the TSH test is faulty. Mainstream doctors rarely know it.

I still have problems with other low hormones. My growth hormone is at the bottom or below the lab reference range. I also have low sex hormones, but do not tolerate taking them, or haven't figured out the right mix.

I would like to know if anyone else has tried growth hormones. I know hormones are very individualistic. We are all different and respond differently. I've been searching for hormone related posts, but am having difficulty finding those.

Amy

 

[Niceguy]

Hi Amy

What kind of desicated Thyroid hormone are you using?
NG

 

[Amyiable]

What Helped Me (free t3)

Hi Amy

What kind of desicated Thyroid hormone are you using?
NG

Hi, Niceguy. I began Armour Thyroid in 2003, and that is what eliminated my pain. When Forrest Labs change the formula of Armour in 2009, I switched to Thyroid made by Erfa, the Canadian brand. This gives me equally good results. The Erfa brand is quite easy to get if you have any prescription that says thyroid on it. It doesn't have to say Erfa. Please let me know if you would want other information about ordering it, or something else.

Amy

 

[consuegra]

Hi ,

Thanks for your information on desiccated thyroid. How much do you take and how did you build up? I would be interested in your experience. Also do you have CFS/ME?

Chris

http://cfspatientadvocate.blogspot.com

 

[Amyiable]

What helped me (free t3)

I have been on 4 grains (4 x 60 mg = 240 mg) most of the 8 yrs that I have taken thyroid meds.

I had trouble finding a doctor. I went to various specialists, who insisted TSH level was the basis for treating thyroid. A problem would be indicated when TSH level is above 5.0, or even 3.0, depending on the lab. My TSH was only 1.0, suggesting that everything was just dandy.

The pituitary produces TSH as a message to tell the thyroid to produce thyroid hormone. The pituitary watches to see if it's TSH message has been received and complied with. If thyroid hormones do not increase, the pituitary produces more & more TSH until the thyroid gets the message & does its job of producing more thyroid hormones. So when TSH level is high, doctors know that the thyroid gland hasn't been producing enough thyroid hormone. This is how it works if you are h.e.a.l.t.h.y.

Well, mainstream doctors want to pay attention to the TSH, without paying attention to ft3, which is the active thyroid hormone. Ft3 stands for free thyroid hormone 3. It is the only thyroid hormone that can get into the tissues. Insurance pays for this test.

There are actually many reasons why one should not pay attention to TSH. One reason is that TSH will not tell you how much ft3 is in the peripheral limbs - incidentally, that is where I felt it first. Forearms and feet. All parts of the body, muscles, everything, need ft3.

Another reason not to rely on TSH is that the pituitary might not be doing its job. This was my case. My pituitary did not seem to care and did not produce more TSH in response to low ft3. This is actually quite common, but mainstream doctors are in denial. I had a pituitary scan, but there was no tumor.

Early on, I did some testing myself. Ordered the tests myself, based on info I got from StopTheThyroidMadness.com & their email group. I tested my sex hormones, cortisol and thyroid.
I followed a lot of advice from that group, except that I didn't need to take cortisol but for a couple of months.

My biggest problem was doctors. Once I got a halfway decent one, I raised my level pretty quick. It was almost like drinking water, & I was very thirsty. I was afraid of all the medication because my bones were losing density on my bone scans. I thought the thyroid hormones would make my bones worse. Sunavagun, but my bones improved. Year after year. .01 on spine and .02 on hip, etc. Little by little.

I did take the synthetics for a little while in the early days. Doctors gave me stories about how I wouldn't be able to get stable on desiccated, or that it wasn't a 'clean' medication. I didn't find that to be true at all. My labs have been very stable. I took estrogen once & that did lower my ft3, but it came back up once I stopped that. So there are substances that will bind t3 so that it is no longer free and unattached.

Amy

 

[consuegra]

Amy

Thank you for this wonderfully specific post on t3. My daughter and I have been wrestling with this thyroid problem now for over two years. She is at 120 mg of Armour and 10 mcg compounded t3. Her recent tests indicate that she needs more hormone. Both free t3 and t4 were below the normal range (free t3 - 2.1, free t4 - 0.7). Her TSH, which had been completely suppressed, came up into the very low normal range. Her TPO antibodies have dropped in a perfect arc from 400 to 56 over the time that she has been taking thyroid hormone. Dr. Lowe would say that this is what happens once you start treatment, that the antibody attack is blunted. Dr. Chia would say something different, that the virus, probably coxsackie b, attack and destroy the thyroid and the diminishing TPO indicates that the thyroid is going out of business.

Several things concern me. One is that the new Armour does not seem to be as good as the old Armour. My daughter is thinking of switching to Naturthroid. Another thing is that my daughter has trouble raising the thyroid hormone without getting side effects and has to raise the Armour or especially t3 very slowly. It seems though that there is only one way to go on this and that maybe she needs twice as much as she is taking.

Do you get the free t3 into the upper normal range? Do you get the free t4 also in the upper normal range? Do you have elevated TPO antibodies? Do you have any opinion on how the thyroid ties into you CFS/ME?

Thanks again for your response as it is very helpful to me.

Chris

http://cfspatientadvocate.blogpot.com

 

[L'engle]

Be careful with Armour if you have adrenal problems. I seem to get worse every time I add it to my adrenal protocol. Still, it seems excellent for those with mostly thyroid problems, and you won't know if it's thyroid or adrenals unless you try the treatments, since the lab tests can be sketchy. If you can find a doctor who will prescribe Armour you have probably found a doctor who will help you more with your CFS than most GPs!