• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

In a crash, I am a mess...

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@soxfan -do they really have a program like that at Duke for mystery illnesses? Seriously, that would be great! I would try and do that. Why not? There has to be something to this. The whole Lyme thing is one big mystery to me. I have friends that do the abx and get so sick. Like deathly ill, from the Herx, I guess. Then they switch to another abx for the other co-infections. They get sick from all of that, but they have chronic Lyme and now major yeast. I get doing it. I get the abx, but the wear on the body is intense. My one friend was just diagnosed with IC with Lyme after years of having lyme and doing IV abx. It sucks. She thought the diagnosis was better than CFS and I was like....how? Lyme folks rarely get well unless they get it from the beginning.

Anyway, I would pursue it. Even if it is Lyme...there has to be something to settle down that muscle twitching. Like IV lidocaine. Or some sort of nerve conduction in that calve. There are treatments, I know it. I read so much because of my own pain. Mine is all over, but treating the calf can happen. But still....what caused it? DUKE...I would try that.
 

Kati

Patient in training
Messages
5,497
If all people with Sjogren (or RA, or HIV or Kupus were told that sugar was the culprit and they stopped eating sugar, would they all be instantly cured or ont the path of recovery? The answer is no. i am very sure that @Misfit Toy has a very good diet and I am very sure that all these patients who are blamed and shamed for their diets are doing nothing wrong.

What is so wrong is the blame and shame and the wellness industry which is selling products, books, diets, detox products, vitamins, supplements, etc to make us believe we's been doing it wrong and that's why we god sick. no, no, and no. Save your money, and save your sanity.

Now can i have a piece of warm apple pie with a scoop of vanilla ice cream on top? :cool:
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Misfit...Luckily my PCP is in the Duke system so she might be able to get me in. I am definitely going to pursue that! I have been treating with abx off and on now for 8 years. I feel like I don't have the same illness now as in the beginning except for the nerve/muscle twitching in my calf. The fatigue feels different too.

At first it was total exhaustion and now it is well....just a weary tiredness all the time. It took the doctors 2 years to believe something was really wrong with me other than anxiety and depression....I had been a very healthy person all my life and then overnight my life changed. It was horrible the doctors not believing in me.

I am really on my last dose of abx and if this doesn't work then I am finished for good. I know it isn't good for my body. I do take VSL#3 as a probiotic so I can keep the yeast away....

I am probably going to try Neurontin for the nerve pain as I have before and it helped. But sometimes it flares so much I can hardly stand it...

I won't ever give up trying to get well...I would love to go to see Dr. Klimas etc...in Florida to find out if she can give me something definite..I did see Dr. Komaroff in Boston but he was of no help at all..
 

maddietod

Senior Member
Messages
2,859
Yo, @madietodd -I tried it. I know one woman with MS who really does great on it. And many with SS do well on LDN. I have heard. Here's what happened...I couldnt' sleep at all on it. I was on such a low dose. Like 2.5 mg, I think. Insanely low. My sleep is such a mess and then it got nuts on LDN and my pain went beserk. So, I would love to take it, but not sure how. I took it in the AM and the same thing happened. I know it helps so much with inflammation. GOSH, it pisses me off...I want that!

I started at 0.1. I had tried to start at 0.5 and couldn't handle it. I started feeling good at 0.3.
 

brenda

Senior Member
Messages
2,266
Location
UK
Dietary advice is not there to shame or blame. You either take it or don't. It's your life and your choice. There is a risk however of being in denial about the dangers of sugar which has been clearly demonstrated to have a very bad effect on the immune system. But all is not lost and there are ways of satisfying the sweet tooth and pretty damn tasty ones at that.

You can make your own chocolate and it is very good indeed, with cocoa butter and cocoa solids, easily purchased online and if you get the raw organic ones you are giving yourself very useful nutrients at the same time. Just chop and put in a container with coconut nectar which is low glycemic and liquid, and some vanilla powder and a pinch of salt if you are like me. Melted together in a pan of water then spread on buckwheat or rice crispbreads is very yummy indeed.

I have had to quit it though due to high blood sugar and weak adrenals, but instead I am making it with carob powder but may have to cut out the coconut nectar and use xylitol instead. It is nearly as good with the vanilla and guilt free.
 
Last edited:

Kati

Patient in training
Messages
5,497
Dietary advice is not there to shame or blame. You either take it or don't. It's your life and your choice. There is a risk however of being in denial about the dangers of sugar which has been clearly demonstrated to have a very bad effect on the immune system. But all is not lost and there are ways of satisfying the sweet tooth and pretty damn tasty ones at that.

No rheumatologists or immunologists would tell their patients to quit sugar because 'it has a bad effect on the immune system'. Perhaps @Jonathan Edwards would like to confirm that here.

This is myths from the alternative community, just like cancer patients should quit all sugars because 'it feeds the cancer". False.
 

Kati

Patient in training
Messages
5,497
@madietodd
that sounds about right for starting @Misfit Toy , maybe try again at something like that when you feel up to it.

The problem with LDN is that in order for it to work the patient has to relinquish all opioids use for a lenghty period of time which could prove difficult for some who rely on it for pain relief.
 

brenda

Senior Member
Messages
2,266
Location
UK
No rheumatologists or immunologists would tell their patients to quit sugar because 'it has a bad effect on the immune system'. Perhaps @Jonathan Edwards would like to confirm that here. This is myths from the alternative community, just like cancer patients should quit all sugars because 'it feeds the cancer". False.

You are right, they won't. It's not how they work. They are not about healing. Their game is control of symptoms with medications.

Glucose Causes Cancer

First scientists Yasuhito Onodera, Jin Min Nam and Mina J Bissell report in the Journal of Clinical Investigation (2014, Jan 2, 124(1), 367 - 384), that increased sugar uptake actually promotes cancer via two pathways - EPAC/RAP1 and O-GicNAc.

sugar.jpg
They showed that the theory that increased glycolysis was a result of cancer was actually wrong and that increased glycolysis (caused by the use of glucose as a fuel) actually caused cancer to form.

This seems to end the debate about the dangers of sugar - although why it was still going on is a surprise. There has been repeated studies against it (For example research from Johns Hopkins that starving patients of sugar is important in people with colon cancer - Click Here)

in the UK there is repeated concern from patients that the NHS dieticians put out booklets advising people having chemotherapy to eat cheeseburgers and drink milky, sugary tea; while the Charity MacMillan has just said that it´s OK for cancer patients to consume sugar and cows´ milk; and the Royal Marsden has just bought out a cook book featuring lashings of cream and sugar!

Her team found that sugar affects DNA metabolism and people who drank sugary soft drinks tended to have shorter telomeres: Drinking just one 8 oz can a day equalled 1.9 years of additional ageing while drinking 20 oz a day was linked to 4.6 more years of ageing. This is equivalent to the effects of smoking on telomere length.

http://canceractive.com/cancer-active-page-link.aspx?n=3615
 

Jonathan Edwards

"Gibberish"
Messages
5,256
You are right, they won't. It's not how they work. They are not about healing. Their game is control of symptoms with medications.


So my life as a rheumatologist was wasted? That's fairly rude Brenda, if you don't mind me saying so!
Sugar itself has no effect on the immune system that I know of unless you have diabetes. If we are going to talk scientific stuff about biochemical things like sugar it's best to have some facts based on evidence.
 

Kati

Patient in training
Messages
5,497
You are right, they won't. It's not how they work. They are not about healing. Their game is control of symptoms with medications.
http://canceractive.com/cancer-active-page-link.aspx?n=3615

i was a chemo RN beofre getting ill. The suggestions to add cream and sugar in the oncologic population is recommended for those who have much trouble maintaining weight and have cachexia. Moreover my mother died of breast cancer when i was 20 years old. She cut sugars and ate a variety of 'healing diets' which did not help one bit. Her cancer kept growing. Not only that, but cancer cells in general are known for using nutrients for replication to the detriments of the host. Cut sugars from your diet, and the cancer will use muscle tissus in order to get the nutrients. Cutting sugar in order to prevent cancer from growing is a myth. Your body and brain needs glucose in order to survive.

Eat whatever you like. Try to eat healthy. Simple.
 
Last edited:

brenda

Senior Member
Messages
2,266
Location
UK
I apologise @Jonathan Edwards l did not mean to insult you and quite forgot that we have a retired rheumo here, but you must admit that your training was not about how to get the the body to heal itself through lifestyle changes. Correct?
 

brenda

Senior Member
Messages
2,266
Location
UK
i was a chemo RN beofre getting ill. The suggestions to add cream and sugar in the oncologic population is recommended for those who have much trouble maintaining weight and have cachexia. Moreover my mother died of breast cancer when i was 20 years old. She cut sugars and ate a variety of 'healing diets' which did not help one bit. Her cancer kept growing. Not only that, but cancer cells in general are known for using nutrients for replication to the detriments of the host. Cut sugars from your diet, and the cancer will use muscle tissus in order to get the nutrients. Cutting sugar in order to prevent cancer from growing is a myth. Your body and brain needs glucose in order to survive.

Eat whatever you like. Try to eat healthy. Simple.

Just because your mother was unable to reverse her cancer, sad as it was, it does not mean that cancer cannot be cured through other means than the slash burn and poison available in allopathy.
 

Kati

Patient in training
Messages
5,497
I apologise @Jonathan Edwards l did not mean to insult you and quite forgot that we have a retired rheumo here, but you must admit that your training was not about how to get the the body to heal itself through lifestyle changes. Correct?

How many auto-immune diseases or infectious diseases have you seen being healed through "lifestyle change" and what lifestyle changes are you talking about @brenda?

Because while lifestyle changes such as stress reduction, eating well and sometimes exercise can help a person feel better, the immunological processes in lupus and rheumatoid arthritis, and HIV are still happening.

'Lifestyle changes' are usually recommended so the patient can feel in control of his own destiny, and if that is not working then the patient can be blamed for their failures.
 

Kati

Patient in training
Messages
5,497
Just because your mother was unable to reverse her cancer, sad as it was, it does not mean that cancer cannot be cured through other means than the slash burn and poison available in allopathy.

Please Brenda, provide scientific litterature proof of that. Snake oil is being sold every day for patients to dish their money in the hope of curing their cancers. i have seen it over and over.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Okay, wow...first, I didn't know we had a rheumatologist on here. Does he have CFS?

So, I think anything can be bad for you. I admit, I am sure sugar or eating junk foods can't be good for us. Many may feel better eating a natural plant based diet with proteins. I know for one, alcohol causes me to have MAJOR pain. The alcohol it's self, sulfites or sugar...who knows. I don't want anyone fighting over sugar. Or diets.

The thing for me is not who's right...it's just that I don't want to completely give up sugar. It could work. It couldn't hurt. I know this...eating tons of sugar messes up my adrenals, especially chocolate. Chocolate can rev me up, if I gorge on it...so that can't be good. It also can bloat me and cause yeast, so that's not good either. I try to eat it in small amounts, but every now and then, I fall off of the wagon and BINGE. I am a sugar lover. I can't have it in my house. I have mostly Stevia here.

I need to not eat sugar everyday. It can't be good to have a chocolate bar a day. I know this.

I think there has to be eating anything in moderation. I don't want to feel that sugar, not eating it is the only way to get healthy, because I know for MYSELF it would be unrealistic for me to keep not eating sugar on top of the other things I already can't eat. That's the big thing. I already can't eat so much. I went to my friends the other day and did nothing but eye her cheese on the table and the coke. I love cheese and can't have it and coke...not so much. Love it, too.

I know years ago, when I went off of sugar and did the yeast free diet, I felt better, but the problem was....it was short lived. That lasted for 4 months. I think in normal bodies, people can do stuff like that and it's like a miracle for them, but I have and most of us have something much bigger here. We do things, they work for a bit and then our body finds a way to override it.

The end result...it sucks.

In some ways, I wish doctor's could actually say, "Hey, you might want to cut down on this." I agree with Brenda on that. It shouldn't be all medicine on a physician's end and on the same side...it shouldn't be all natural holistic stuff from a holistic doctor. They hate medicine, but some medicines have saved my life, whereas vitamins and supplements take forever and a day to work. We need both and both working together. There is no vitamin or supplement that helps my allergies as much as zyrtec. And cat's claw and Oregano does zip for me with an infection, but an antibiotic gets the job done.

On the same note, aloe vera and magnesium is the only thing that gets me to go to the bathroom. No medicine can help me to poop...yup, you heard that...only supplements get me to go.