What has worked the best?

[whitedove]

Hi, Everyone, I am whitedove.

I joined a few months ago, lost my way a couple of times, and now I have found my way back. This time I wrote everything down so I wouldn't forget! Does everyone with this disorder have memory difficulties?

I have a question. I know some of you have had this, Morgellons, for a long time. Will you please share with me what you think the most important things to do, or take or whatever is needed to deal with this disorder?

I am doing so much better, but some say it gets worse, as time goes on. I don't want to make any mistakes. I want to continue to improve or at least not get worse.

Thanks, so much,
whitedove

[carla]

Hi White dove ,
We all have the short term memory loss and concentration difficulties.
I think one of the best things you can do to help yourself is take good quality supplements.
Carla xx

[tcmgpt13]

If you have parasites, an herbal cleanse may help. I liked the Dr. Natura system, which is best used for a few months. It is expensive, but less so if you purchase the three months at one time. There are other products out there in health food stores, but this was the one suggested by my TCM practitioner after she had been treating me for some time. It was a way to switch from the TCM herbs she was using (thereby perhaps targeting different parasites and toxins) and I felt at the time it did help some. Actually no one thing has helped me to improve over time. It is a series of things, but this is one which I noticed made me feel somewhat better. Actually I only used it for one and a half months as I was sharing this with another person. Here is one of my old posts where I discuss what I was doing/had done:

internal antifungals and Chinese herbs

In addition to bubba's treatment steps you may want to look at these suggested treatments from a phd who has treated some gulf war veterans and evidently has some experience with morgellons as well:

More Treatment Steps

I do feel I am not as sick as I was three years ago. I recently went to a doctor who is treating me with an antiviral medication. I think this is helping me as well, but so far I cannot claim I am "cured." I just feel better than I used to, which is progress I think. The main thing is to detoxify the body as I am sure that is a common connection we all have. It may be that our metabolic pathways are slow and we do not get rid of toxins as easily as most people do.

[Jo]

Hi Whitedove,

I just wanted to highlight one supplement that I believe has helped me get my brain back!

Its Coenzyme Q10 which is mentioned in the 'More Treatment Steps' in TCM's post.

Coenzyme Q10 is an essential ingredient in the body's production of energy and in the normal metabolism of fat and energy.

It helps reduce blood pressure, reliefs brain fog, headaches, fatigue and cardio-vascular disease. Very effective at reducing the number of angina attacks in clinical trials.

Some researchers recommend 2 milligrams of CoQ-10 for each kilogram of body weight. Co Q10 is fat soluble. To be effective, it must be taken with some fat for absorption.

It's not the cheapest of supplements but very worth it. I take between 60-90mgs a day.

Cardiovascular health, Co Q10, Coenzyme Q10, Benefits of Co Enzyme Q-10 Supplementation in Cardiovascular Health, Heart Health Infocenter, Holisticonline.com
Coenzyme Q10 - Wikipedia, the free encyclopedia

Good to hear from you

Jo xxx

[carla]

I wanted to second what Jo has just said. This supplement brings instant relief from my brain fog .
carla xxxxx

[whitedove]

Originally Posted by carla

Hi White dove ,
We all have the short term memory loss and concentration difficulties.
I think one of the best things you can do to help yourself is take good quality supplements.
Carla xx

Hi, Carla, Thank you for your answer.
I do take vitamins from Maximun Living products, you know, the ones Maureen Salaman offered on the PBS Network. The Vita Sprout is really great, I noticed a difference right away. I Hope these are good enough for this kind of problem.
Take care, whitedove

[2manyfibers]

Hey Jo, Carla and Whitedove (and anybody else I missed) - just wanted to throw a quick bit of information in on CoQ10 here and tell you where you can get good quality CoQ10 on the cheap.

CoQ10 is a vitamin like enzyme that is generated naturally in the body from several B vitamins, vitamin C and a few others and it acts as a co-factor in many processes in the body including building many different enzymes. CoQ10 is believed to be at least partly responsible as a co-factor for up to 95% of the body's energy requirements. It is used in Japan by prescription to prevent and treat strokes, treat congestive heart failure and several other ailments. It is probably one of the most important nutrients our body's need and it can't be obtained directly from food (the vitamins mentioned earlier are in foods, but it is often hard to get them all from food alone, and if there is a deficiency in any of these vitamins the body simply can't produce CoQ10 effectively - and the body produces less CoQ10 as we age as well). It is considered to be very important for heart health and also helps regulate blood pressure.

The best prices I have found anywhere are from Puritan's Pride and until 5/31/08 you can get 70% off and shipping is only 26 cents anywhere in the US for any size order. They also have good prices on all their products including high quality multivitamins and many other things - shipping would still only cost 26 cents no matter how many different things you order (and I am not connected with them in any way except that I order vitamins from them). Here's a link for CoQ10 - scroll down the page to see the different potencies and quantities available. For instance 200 capsules of 30 mg are $6.97 (which is about 3.5 British pounds for my friends across the pond).

CoQ10: CO Q-10 50 mg. Softgels

And for at least the next several months, Puritan's Pride has flat rate shipping to several countries including the UK (check the "international shipping" part in the upper left hand corner if interested). For the UK, the rate is $3.95 handling plus $14.99 shipping (which is about 9 British pounds total). I checked out Holland and Barrett in the UK (apparently the largest vitamin company in the UK) for pricing on CoQ10 and the same quantity and potency (30 mg, 200 capsules) is 35 pounds per bottle which is ten times the cost for the CoQ10 from Puritan's Pride. Thus, even if you're in the UK you could buy 8 bottles from Puritans Pride with shipping included for about the same price as 1 bottle from H&B (without shipping).

To the best of my knowledge, the quality of products is at least as good from Puritan's pride as anywhere else. For instance, they use rice bran oil as a "filler" in their CoQ10 which is supposed to be the healthiest type "carrier oil" available (rice bran oil contains small quantities of several vitamins itself and it is not hydrogenated oil which means it should be healthier than other types used). Many more expensive CoQ10 products from other places use hydrogenated canola or soybean oil as a "filler" or "carrier" oil which is not considered very healthy in and of itself - these are basically the trans-fat oils that are considered very unhealthy(some products use vitamin E oil but it is also often made with hydrogenated vegetable oils). I personally think the Puritan's Pride CoQ10 is very good quality when compared to similar offerings from other places, and independent lab tests that can be found on the web have verified that their CoQ10 is exactly what the label says it is.

There are more expensive (quite a bit more expensive) CoQ10 products available called ubiquinol - this is the actual form the body uses. However, the standard CoQ10 formulation discussed above is simply a very common enzyme reaction or two away from being ubiquinol (the body naturally performs these enzyme reactions so the CoQ10 becomes ubiquinol in the body in very short order). Thus, I personally think the standard product works quite well without paying extra to get the actual ubiquinol in the capsule.

Just thought I would post this so everyone that is interested could take advantage of the deal at the link posted above if they wanted (and order other vitamins if interested) - especially the folks in the UK (I don't know where you get your CoQ10 Jo, but this might be a better deal for you too, even with shipping ).

[Jo]

Hey Thanks 2manynanofibers!!

Thats great info and VERY thoughtful of you. I usually get them from a large supermarket (Tesco) - I'll check out how it compares. I think your source could be a winner.

cheers

Jo xxx

[hilly]

Thanks so much 2manyfibers.... I've ordered 4 times as much for less than 1 of my usual bottles.... brilliant... thanks again. Hilly x

[carla]

Thanks Fibers,
Thats about the lowest prices l ever seen.All good quality as well.
carla xxxxxxxxx