 |
| Author | Post |
|---|
newfriend
Member
| Joined: | Fri Oct 17th, 2008 |
| Location: | Shellbyville, USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Fri Oct 17th, 2008 21:27 |
|
Hi, this is all new to me but I would like to find an MP doctor in Gainesvile, FL
I appreciate any words and success stories. I am 47 year old female.
I am in the initial discovery stage to see if I do have this. It makes sense but my first blood test and physical tests so far have been negative and the rheumatologist said it is highly unlikely after my physical. I have a CT scan and more blood work out there and will get the results next week. Too long for me too wait.
I will get a lip biopsy next Tuesday from an ENT.
I had a surgery 7 days ago and I think the trauma kicked in this autoimmune disease.
My hope though is that I am still healing from surgery and as my system is doing it's thing, it will go back normal as my injuries healed. I had scar revision and liposuction and mt arm are still bruise like a bad banana. I figure if this is what I see on the outside, my inside must be in bad shape. I hope that even if I do have Sjogren's Syndrome, I can get the immune system to settle down back to a managelable place. I only have the one symptom but it is fierce with not being able to get to a manageable level.
Prior to surgery I felt parched maybe a few times here and there but nothing too alrming for me, especiallevery once in awhile but nothing too abnormal, it is hard to think that it went from being in the normal range to total loss of saliva, not just a little. But I am ultra aware of my physical symptoms, I have a high threshold for pain, but if I feel a heart palitation it gets me going. I also did that with my heart palitiations, I went to every dr, every website looking for what that was. I got palps every day and especially when I was anxious. Funny thing is I have not gotten any, maybe a few here and there. I traded one for the other. I would rather have the palps back.
All of my test come back negative to as well as any other autoimmune diseases, CT is normal.
As I have read, especially at the beginning stages of an autoimmune disease, the antibodies may not be present yet. My only symptom is SEVERE dry mouth. The fact is that I have no salivation secretion at all unless I take Salagen. Every specialist I see has no answers.
That is creating this vicious cycle, I am anxious I may have this.
As soon as the Salagen wears off, it is like a desert. Even when I am on it it feels chalky and I am fully aware and focused onevery swalllow.
I was told it may be psychosomatic and not disease connected. It is hard to believe for me because it is not just an anxiuos dry mouth, it is that I had a concern about the dryness and I even did look up dry mouth before the surgery and saw the Sjogren's Syndrome listed. But one of the drs said that you had a concern about it prior to the surgery. You had been recovering at home for 2 days and were on antibiotics. Your throat got extemely dry and you freaked out. I mean I strugglerd that day to get any saliva to flow and to feel quenched. I had a dry mouth from surgery, anethstesia, and intibation, but it was not totally desert no saliva dry. I could take it if there was even a little flow.
I think it is hard to be a dr because eveyrone wants answers now and it takes time to do get test results back. But it is hard to be the patient too. Especially if it is an urgent situation where living from hour to hour is hard and the tests are normal.
My doctor told me she thinks the tests will come back normal and then we will have to take more test and play the waiting game. And as with many autoimmune diseases sometimes the test do come back normal, especially at the beginning stages of the disease. I would hate not to treat an underlying disorder that they are not able to detect. Especially if it is in the initialk stages, maybe I can catch it in it's tracks.
I would like to get my treatment coarce in order and ready to role when I need it becasue when my test come back normal I need somewhere to go with a treatment.
Any ideas or success stories would be greatly appreciated.
I look foreward to your replies.
Hi!
I am here in Gainesville and I am new to this. My story is developing at this time but I was hoping for some guidance. So far my tests are all negative but I have a severe symptom of total salivary gland shutdown. I always have to be taking Salegen to create my saliva flow but is does not last long and I am dry most of the time.
It may be Sjogren's Syndrome but so far it is not at a detectable stage and I only have the one symtom but it is one that is a bad one. Hard to swallow at times and never feel quenched.
I just had liposuction and 2 dast post surgery is when this kicked in. It could be that my immune system is trying to heal my body and kicked into high gear and set of the Sjogren's Syndrome. It is in such an early stage that it does not show up in tests.
I would like to get the immune system suppressed now and was wondering if you have a doctor in the area that you consult with or use. I know the dr's I am seeing now are traditional University doctors who are all great, but it is ahrd to find one that deviates from that because they sometimes are viewed as out there. It's a shame because not all therapies work for the masses.
I look foreward to your reply,
Roxanne
|
Julia
Advocate (on leave)
|
Posted: Sat Oct 18th, 2008 01:32 |
|
Hi Roxanne,
You've come to the right place to find out about the so-called autoimmune diseases, but you'll learn as you read here of the most recent research that they aren't strictly autoimmune at all!
Sjogren's syndrome (dry eyes and mouth, decreased tears and saliva, and resulting dental caries) is known to be related to diseases such as rheumatoid arthritis, sarcoidosis, lupus, scleroderma and polymyositis.
We now know that the 'autoimmune' diseases are actually caused by Cell Wall Deficient (CWD) bacteria, which have learned to live within the very cells of the immune system that are supposed to kill them. The Marshall Protocol (MP) is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants may make you feel better temporarily, but will allow the bacteria to flourish and multiply, without anything to kill them.
If you do some reading here or on our main study site MarshallProtocol.com, you'll meet a large group of people with various 'autoimmune' diseases, including some with Sjogren's, being treated with this new antibiotic protocol, and you can read the Success Stories of many who have got their lives back.
No-one is trying to sell you anything - you have to get a doctor to prescribe the medications, and get them to join the private forum for medical professionals, in order to access the whole of the protocol and receive advice and support. The MP is still fairly new, and your doctors may not have heard of it yet. It isn't a quick fix, but it's well worth it.
Here are some links you might like to have a look at...
What is the Marshall Protocol?
Simple Explanations
Diagnostic test for the MP: D-metabolites tests
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
Interview with Bonnie B- Lupus, Sjogren's syndrome
Please ask any further questions here at your own personal thread 
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
newfriend
Member
| Joined: | Fri Oct 17th, 2008 |
| Location: | Shellbyville, USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Sat Oct 18th, 2008 09:14 |
|
Hi,
Someone brought this to my attention about medications and I am not on any medications. Also this level of mouth dryness is different than an anxious dry mouth, it is a level of severe dryness with no saliva unless I take the salagen.
The only reason why I am leaning towards an autoimmune disease is because all else has been ruled out. I have had negative test results to the autoimmune disease but I have read that sometimes especially during the beginning stages of some of these, the levels are to low to detect as the tests sometimes are not that sensitive to low levels are what is considered abnormal.
Also the degree of which I have the dry mouth is incredible. I have absolutely no salivation unless I am on the Salagen. And that is not always that effective because it creates a rush of saliva for a short time and then it's over.
One thing the plastic surgeon talked to me about was psychosomatic disorders. It is interesting that maybe this has some sort of psychosomatic component. He said he does not even know if he believes there is such a thing but pointed out I was very anxious about the surgery and I was concerned about a dry throat. Sometimes these things are so deep seated it is hard to fathom that you can't control it on a conscious level. I am so worked up about this and if I am stuck in this state it is hard for me to get to a state of being relaxed.
I also wanted to mention that I have anxiety and sometimes panic disorder but at a very manageable level.
What I have decided to do is get on a healthy schedule of care . At this time I am not eating right, not sleeping right and just overall consumed by this because the level of discomfort in my mouth is so bad.
I am going to document my progress. I am still pretty bruised up from my surgery that my body is also working on healing that part of me, my arms look like bruised bananas.
I hope as the bruise disappear the dry mouth will return to a normal level.
Also my tongue has been so gross, I never feel quinched and I am guzzling water. It is a horrible feeling to drink because your thirsty and the thirst never subsides. What is bizarre is that I went to the Urgent care the first night my mouth became intolerable (I was full of antibiotics and stil taking them) and I doubt he was convinced I had thrush, it sure felt like I hade a mouth full of filmy gunk (sorry so gross!), but he had limited resources and for urgent care it is just to get you to the point you are not in danger and you can get to the next day. He gave me an anti-fungal rinse and I used it until I went the next morning to my dr. She gave me salagen and I stopped using the oral rinse. During the next week mt tongue was white again with those cottage cheesy bumps. It is such a bad feeling but once again the dr said no thrush, it is just very dry. But I could feel the film on the roof of my mouth traveling down my throat. I started to use the anti fungal anyway, she said it would not hurt, and it feels and is getting better. I think the feeling I was getting was called burning mouth syndrome.
I have been trying to find information on pyschoymatic disorder with hyposalivation and I found an interested pear reviewed paper on that and candidas connection. I had been told that the thrush or candidas does not cause the dry mouth, but the dry mouth causes the thrush. But the paper had raised some questions for me. I think they sometimes call it hysterical something or other.
I am going to keep treating this as if I have the candidas because I do fell a difference in feeling of my tongue. I am going to track if my mouth feels less dry. I have recently been keeping track of when I need to take the salagen, how long it is effective, and when I have to take the next one. I am also tracking when I take the antifungal and what those effects are. I am curious to see if my dry mouth remains mess dry for longer. Tonight I got a little excited becasue it seems like I was able to get a little saliva still a bit longer, but at this moment I am completely dry again. I realize this be slow moving, I think of it this way. As my arms are less bruised so will my system be, which really takes a long time and visually from day to day it barely looks like there was improvement. In fact for the first week it gets worse before it starts to get better. Maybe what is causing my dry mouth will heal also. As I see improvement even in a small degree fro my dry mouth, it will break that anxiety chain and maybe unlock this if it is psychosomatic. I am just scared I am stuck this way and it is hard for me to see that any improvement, I am hoping for even a little minute amount, then it gives me hope that it can get better.
I was hoping to find someone that can tell me that they were where I am too. That it was an intolerable level of dryness and then it got to a manageable level.
Thanks for the ear.
I look forward to any thoughts you may have.
Roxanne
|
Julia
Advocate (on leave)
|
Posted: Sat Oct 18th, 2008 09:56 |
|
Roxanne,
Please follow all the links in my reply to you - I know there's a lot of reading, but you're clearly someone who can do a bit of studying
You ask for someone who's been where you are - did you read Bonnie's interview? Bonnie B- Lupus, Sjogren's syndrome The MP is the only therapy that will deal with the most likely cause of your condition - tiny bacteria hiding in your immune system.
The way to find out for certain if this is the cause, is to have your D-metabolites tests done.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
newfriend
Member
| Joined: | Fri Oct 17th, 2008 |
| Location: | Shellbyville, USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Sat Oct 18th, 2008 12:47 |
|
Thanks,
I would love to start with the diagnostics but I do not know how to find a dr in my area.
I requested the referral with no reply and I made some inquiries to some members with no luck.
Any help with that would be so much appreciated.
Roxanne
Last edited on Sat Oct 18th, 2008 12:48 by newfriend
|
Julia
Advocate (on leave)
|
Posted: Sat Oct 18th, 2008 12:56 |
|
| Roxanne, your request for the doctor list should be answered within a few days. We're all volunteers here, so please be patient!
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
|
newfriend
Member
| Joined: | Fri Oct 17th, 2008 |
| Location: | Shellbyville, USA |
| Posts: | 5 |
| Status: |
Offline
|
|
Posted: Sat Oct 18th, 2008 13:16 |
|
Hi Julie,
The one thing I forgot to mention is that I have no other immune disorders or inflammations, my glands are not swollen or abnormal. So they will not even treat me with anything.
The only treatment is what they gave me for the dry mouth symptoms; Salagen. I have gone through all the tests they normally give for this and they all say I do not have it, but as I have read many times they do not show up at low levels, especially at the start of the syndrome.
I would be fine with that if the dry mouth was at a level I could function, but my dry mouth is so severe that when I take the salagen it only helps for a couple of minutes and goes away. Any of the other products like slaiva substitutes do not offer any help. I really go from minute to minute on trying to manage this. My mouth is so white and cottage cheese like but the dr says it is not thrush. I never can quench my thirst.
So in other words they will not even give me steroids for this anyway.
I have not been able to find anyone else that just has dry mouth symptoms to the degree I have. Most people SS with other autoimmune disorders.
I did read Bonnie B, how can I contact her to ask her questions?
Sorry to bombard you but you have been a real nice person to answer me as I am looking for some solutions and answers so I can at least be proactive.
Last edited on Sat Oct 18th, 2008 13:18 by newfriend
|
Current time is 22:10 | |
|
|
|
|
