Search results

The latent virus placement, esp herpes family viruses, makes sense to me. How ironic that in high school I was a science geek and wrote a research paper on the role of herpes viruses in chronic disease states. The paper was submitted to the states science fair. I at one time, wanted to be a...

Hi knackers, yes it was the ab therepy that improved my cfs. After about a year and some months, I had days where I woke up in the am and felt normal. It felt fantastic. After being taken off, I regressed a bit but I can still work full time as a teacher, which takes a lot of energy. I also took...

Hi everyone, I have not posted for a long time but want to chime in here. I had scleroderma saw a doctor in Boston, placed on antibiotic therepy for 2 or 3 years and achieved complete remission. My local rheumy now uses it on his sclero patients. There are some studies looking at tick borne...

Hey FunkOdyssey, I am trying to remember through this awful fog. It was either 100 mg (50 in the am, 50 in the pm) or 200. I remember it had to be name brand, my doctor was adamant about this, generic didn't work. Hope this helps. Wendy

Minocin got me back on my feet I believe that my partial recovery was due to three years of minocin treatments, followed by some anti-virals. I am on my way down again, and will try to get my PC to consider minocin. I was initially put on this medication by a Boston rheumy for what he thought...

I thought the article was fair. I read it multiple times. I think she is writing for a public unaware of CFS or XMRV. Of course, she is forgetting the aids controversy, I remember how political ACT UP was and they didn't have the internet. Wendy

Grape funk, didn't mean to offend you. I was just making a quick opinion. I am too tired to judge anyone right now and prefer to wait and see, think positively until proven otherwise. It is the only way I can get by, day to day. WEndy

Pken, it is all so confusing. I am, I think, a classic undermethylator, yet when I started to try to improve this, Whammo. There has to be another link, another issue. I have been supporting and treating methylation (my own way) since I think 2004 or so when I decided that methylation was key...

Hi Pken, Freddd, I will be talking to my doctor about running tests on folic acid, B6, copper and zinc, in the meantime my B12 levels came in at over 1,000. Maybe I should back off the B12. I have methionine tablets but they contain folic acid and B6, so am not sure if I should take these. I...

Well said Cort, I don't buy into guilt by association.

Thanks for your replies, I really want to improve methylation, but do it gradually. I have researched and histamine is a classic sign of under methylation. It is just so weird that it happened when I tried to improve methylation. My rash is not on my scalp, just all over my body. I have some...

Some time ago, I began the simplifed protocol. I had to stop because of itching and a rash that has never gone away. My PC doctor was mystified, I went to a dermatologist who wrote with a stick on my skin and voila, raised welts. He said allergic reaction, histamine is being expelled through my...

Thanks again for the replys. I am just too tired to thank you individually and having a rough time of it. These snowstorms must stop! No more shoveling! I quit! I have lots of food and don't need to leave the house for a month. Oh but then there is the job, guess I can't quit. Rats. The doctor...

LaurieL, Could you list all the supps that you take? Could you suggest a time line for gradual addition? I tried the simplified protocol but had to discontinue due to rashes. I wonder about the sulfur. My family has a history of being allergic to sulfur based meds such as sulfur based...

Thank you all, for your replies. Yes I am skeptical but I think I'll go a few times. My gut is a mess again, so perhaps they can help with that. We'll see. Wendy

Hi ixchelkali and thanks for the reply. My pain is very minimal at this point, more like stiffness and muscle fatigue, so I am really hoping to get my endochrine system back in line, esp the thyroid and also the detox pathway. I will most likely try it for a few sessions but I am sick and tired...

I am thinking of going to a Chinese herbal/acupuncture doctor. I don't want to waste my money. Has this helped anyone? I was thinking of working on liver, detox and HPA axis as well as thyroid. Let me know. Wendy

Hi everyone, I just started yoga a month ago and it has been transformative and breathing is a central part of it. I crashed at first but now don't crash. The only problem is insomnia (too much energy) if I do it late in the afternoon. Wendy

Very interesting and enlightening post. I have struggled finding the me without the action, the doing. Me, self, exists as it always was, but have to find and connect to it again. We in the West so often define ourselves by action and when action and accomplishments disappear, we are lost, for a...

Hi Helen41, I would look up tests for hemochromatosis and note the 5 blood tests that should be done as well as the genetic tests. I am heterozygous for the illness (very common among the Irish, by the way, 1 in four or five carry the gene). My iron levels are watched very closely and I was...

Hi Tuliip, Many of us here had endo first, you may want to search past posts, there may even have been a poll. I have always thought that researchers should culture endo tissue and lymph tissue to find XMRV, rather than the blood. My endo is finally cleared up, now that menopause has struck. I...

warnings about boniva, fosamax Hi sicktoolong, Sorry to hear about the bone loss. I am assuming that you take D3, magnesium, calcium? I have heard that the three need to be taken together? My sister just told me of new problems with fosamax and boniva: Actonel, Boniva, Didronel, Fosamax...

So many but here are my tops, more than 3 though B12, sublingual every day and injections twice a month Mitochondria Ignite with NT factor CoQ10 Glutathione Omega 3 SAMe olive leaf extract (anti-viral, anti biotic) Tumeric Biotin and B complex (for hair, I am vain you know) Milk...

Hi everyone, my post has nothing to do with the last page but I thought I would put my 2cents in. I have had to stop the protocol. The rash is out of control even with pulsing. My family has a history of allergy to sulfur and am wondering if this is playing into it. As far as the rash, my back...

Hello, inositol is in undenatured whey protein which I took for about three years. One of the supps that helped me to recover a bit. I no longer take it but you have me thinking perhaps... Wendy

Hi aquariusgirl, yes I take lots of b12, including shots and flax seed oil everyday, cook with olive oil, eat avocados etc etc. Believe it or not, the cranberry juice seems to be doing something. I was out of work yesterday but returned today. Now if my sore throat would just go away, and the...

I am officially whomped. Sleeping almost 12 hours a day. My arms and legs weigh a ton and I am so tired. I had to go off the protocol for three days because of this intense rash which now covers my back and upper arms and thighs. The rash has improved so I am going back on, probably pulsing, one...

Early in my disease my doctor had me on sterioids, they worked for a while and then nothing (except to make me fat and puffy). Then I tried provigil and hated it. It was a very caffinated, nervous energy that did not help concentration at all. B12 is much better :-) Just my 2cents Wendy

Hi Jeffy, I can no longer tolerate the sun even for short amounts of time. It exhausts me and makes me ill. I am not sure if it is the sun or the heat it produces. I can't tolerate even moderate temperature changes. I used to love to ski and be outside in the winter but can't do that either. As...

Thanks Sushi, this rash is uncomfortable. I just don't like not knowing what to do. Wendy