Search Results for 'raynaulds'

[Trudi]

@nspiker wrote:

I had never heard of the Arthritis Trust, but found the information on healing Rheumatoid Arthritis amazing. Here is an excerpt that I found most interesting, and Trudi, they recommend electrodermal testing!

Love that statement…”You must learn more than your friendly neighborhood rheumatologist. This will be easy to do, because this group of professionals knows absolutely nothing about how to get you well (according to their own statements), and you’ll know something!”.

There is an enormous amount of information on the Arthritis Trust website. One could spend weeks reading through their site.

Nancy, one of the parasites that came up on my electro-dermal screening is Leishmania. Weird! It showed up on my first screening in Dec ’08 (had my doctor scratching his head) and has showed up now and again since then, including this last time. It appears I may have contacted it in the Bahamas in the early 70’s. Coincidentally, that is also when I started having my Raynaulds symptoms (although they are very mild). I subscribe to the rule of thought that our bodies host all sorts of microorganisms which normally live harmoniously together. It is when the balance goes haywire that harmful organisms get the upper hand and make us ill.

I wish my “friendly neighborhood rheumatologist” did know everything, but I concede there is so much information out there that it’s not humanly possible. I just wish they had a reputation of checking out alternative therapies–maybe asking too much ?? I am so very glad that we live at a time where we have the possibility of the Internet to search the world over for cures.

We are experiencing a gorgeous, sunny day today. I’ve already soaked up some natural Vitamin D 😀 !!

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Anonymous]

Last year I started taking jiaogulan herb for Raynaulds. J-herb increases your production of nitric oxide which improves circulation. It is used as a pain reliever for equine foot problems. Equine dose is 2 teaspoons per day. Human dose is 1 teaspoon. One t did not make much of an improvement but 1.5 t does help me a lot. J-herb can lower your BP so you must monitor that. http://www.naturalhorsetrim.com/Jiaogulan.htm This is a link to a horse site that has info on the herb.
J-herb must be taken on an empty stomach. I mix it with a T of applesauce. Otherwise, I can not get it down.
I will post more info if I can find it.
Teresa

[Lymie]

I'm so glad to have found your site. When I feel better I'll add to my history but for now let me introduce myself. 

I've had a myriad of health problems since my 20's. I'm in my mid-50's now. In a nutshell I've had my thyroid and gall bladder removed, developed Celiac disease, Raynaulds (secondary), have suffered with severe pain, muscle weakness, fatigue and cognitive probs and horrible mood swings on and off pretty bad for about 2 years. Before that I had pain and fatigue but less severe and fewer bouts or flares. My doc said I had  mixed connective tissue disease. I was given a DX of Fibromyalgia too.

I thought I had exhausted my resources last year when I had suddenly gotten really bad and went to an endocrinologist, a top rheumatologist and my OBGYN. I figured one of them would find something. I thought for sure it was a hormone related problem of some kind. My OBGYN blew me off and told me I was post menopausal and there was nothing she could do for me. The endo-guy said everything looked fine. The rheumatologist said the same all I had was slightly elevated ANA. I resigned my self to a DX of fibrormyalgia. 

Well, only a few weeks after that, I was on a fibro board helping others to cope when a member said it sure sounded like Lyme disease to her. She sent me a couple of links and when I went to the first one I broke down in tears. I knew this was it. It just hit me in the gut – an AHA! moment. I had probably at least 80% of the Lyme symptoms on the check list.

I work outside for a living and have for 20 years. I grew up camping in a tent all over the U.S. As a kid, my idea of fun was crawling in the tall grass or tramping through the woods. I even had 2 small bulls-eye rashes in the last few years that were dismissed. Not only that but I had test after test for years and 2 times I was given the ELISA test for Lyme, so they were thinking “maybe” even then.

I kept getting new symptoms through the years. Sometimes they would go away. I was healthy enough otherwise so I think my body kept fighting “it” off successfully until it just finally got overwhelmed in the last few years. I also had some major surgery and emotional trauma within the last 10 years. I know those kind of things can trigger illness. 

I'll cut to the chase…….. I found an LLMD in my state and went to him a few months ago. I took Doxy for 2 months with no noticeable results and had to switch to Zithrowmax and Plaquenil because of the photo-sensitivity with Doxy. I'm not liking this regimen so much. It's too early to tell if it's helping. It's only been almost a month on it. I have a definite cycle of flares and symptoms – 28 days – and it just happens to coordinate with the full moon so I can keep track easily.

I had an Igenex Western Blot that tested positive for bb by their standards – not he CDC's. I had 2 ++ positive bands and one equivocal. It was IGG. The IGM was negative for Lyme with one positive band.

I'm stressing about what to tell my Family Doctor. I felt him out about how he viewed the Lyme controversy before I saw the LLMD but knew I would be seeing him. Not good. He thinks they are quacks. My LLMD is almost 2 hours away so I can't use him for a regular doctor. I don't think he does that anyway. My regular Doc is usually open minded about new ideas and didn't have a problem referring me to the specialists last spring when I got so bad. I think he has given up on me but  I don't know any other doctors I would go to. I've been with him for about 20 years. I don't want to tick (no pun intended) him off because until I get well, I need the pain meds and sleep aids he is willing to give me to help me cope. Without them I don't think I'd be here today. Life is not so good sometimes. I have such bad flares I just go to bed some days. I know others have it worse than me. I just can't imagine.

I've been on all kinds of meds. So far nothing has helped other than with symptoms. I do like Provigil for days I have to do things but don't have the energy. But I don't like to take it on a regular basis. I'm overwhelmed with all the info out there on Lyme. I don't like that my LLMD threw a bunch of new meds and suppliments at me at once. I didn't start them all at once. I slowly introduced each one to my system. How in the world would someone know which drug they were having a reaction to if they started 5 at once?

What can I say? I'm a skeptic. I've been burned too many times by too many people…… too many years of no one believing how sick I was. Am I allowed here?

I don't usually like the Lyme boards because they aren't scientific enough for me. Yes, I think Lyme is under diagnosed but I don't think everything that can't be explained is Lyme. I don't like the fact that if your post doesn't go along with their way of thinking it may disappear or you may be kicked off the site. It's never happened to me but I've known it to happen to others. It's not like that here, is it? I believe there are two sides to every story and I want to find out the answers for myself – not have them shoved down my throat. Sometimes the truth lies between the two sides.

I hate being sick like this. I pray every day to get better. I was full of vigor and vitality until about 5 years or so ago and just started really going down the tubes fast. Until recently, I was always in better shape than most people my age partly because I did physical labor type work for my job. But I've always been youthful and healthy looking. That's what I've been told. I still get  “But you look so good” which means they have a hard time believing I could be so sick. Well, I work on it before I go out! LOL! It would be a shock to someone who knows me if they were to stop by unexpectedly.;) I probably would not open the door. I get so tired of trying to explain what's wrong with me and try to avoid the subject unless it's really necessary.

So that's me in a nutshell. I left a lot of symptoms and problems out for now. I had no idea ABX was being used for autoimmune diseases until I stumbled across this site.

Anyone want to take a gander at what came first……… the auto-immune stuff or the Lyme? Or did I have auto-immune issues and then it was topped off by Lyme? I'm hoping the Lyme caused it and I can get at least somewhat better with the antibiotic regimen. Here's hoping!!

This post hs been moved from Personal History to General Discussion area of the Forum where it can receive responses to questions. The Personal History and Progress section the Board is for authors' journal notes only and cannot generate replies from others. RBFV

 

[casey]

Have you read ” Scleroderma, the Proven therapy That Can Save Your Life?” by Henry Scammell? There are case histories in there and there is one that is about a woman who had scleroderma and developed raynaulds later in her disease process.

I am not an expert at this but i do know of others that have scleroderma and NEVER had raynaulds as a presenting symptom or never developed it. Others have MCTD , like me, who have symptoms of sclero, RA, lupus and myositosis and do not have raynaulds. Some who have lupus and not scleroderma can have raynaulds as well.

I dont think you have to have raynaulds to have scleroderma though it  is common .

Casey

[casey]

Lynnie,

I recently tried to help a woman who is in her 30's and has scleroderma. Her mother died of it . This woman has raynaulds, calcinosis, has had 3 esophagal dilations or whatever the name is for that. she has stomach probs, you name it. Well i took her tons of info and even put these sites into her computer. She is choosing not to even research AP or these sites.She is going by the almighty rheumy treatments and has lived with this since diagnosed at 19.

We can only do so much and if hands get slapped for us trying to help , so be it. I, too, dont understand either why so many just choose to sit still.

My family doc has a sister with severe RA. When this started with me, i took him all the info i could and even bought him Henry scammels books. He did prescibe abx for us right away , i think due to sympathy. Bottom line in the end, his sister is still with her rheumy on the traditional meds . He is a doc AND her brother so i dont get it. On top of that, he was more than willing to prescibe mino or doxy to us , including my 12 yr old son because they are safe drugs.Having said that and knowing these are safe, i will never understand what the safety is behind his sister on methotrexate, pred, plaq etc.

If i cant convince a doc for his own sister, well i guess that says it all.

Also, i had a argument with top rheumies at a childrens hospital. When i took my son in, i thought they may agree to AP because i had pos myco tests and strep tests. Yea right, they told me all the lupus patients have chronic infections. I told them if they treated the chronic infections , they may never have a disease or at least stop it early. They were so mad at me and finally i just asked them how they look in the eyes of these kids , knowing they have chronic infections , and never treat them and how they sleep at night. I asked them why they became rheumies. Well to help children. They know they help nothing in the end but they make $600000 a yr. Thats what its about to me. I said they would do more for these kids if they went out on their own and treated these infections. But they will lose their almighty dollar. My last words were” i hope you never have to walk in these shoes” and we never went back . They also lied to me as the emerg doc told me they test for mycoplasma. The rheumies told me they didnt. :headbang::headbang::headbang::X

It all makes me mad and sick.

You did a good thing trying to help and i have done it too. Whether someone is receptive to it is another story.

Casey