Welcome to the forum.
Sorry about all your suffering.
It is likely that you have a multi-systemic condition along with Sjogren's Syndrome that is initiated by a very difficult to detect infectious agent like
borrelia or Pathogenic Mycoplasma.
You need an LLMD infectious disease specialist or an LLMD internist who are knowledgeable in this.
Check the following:
ILADS, immed.org, IGENEX.
Extra virgin coconut oil as a replacement of cooking oils and "oil pulling"
daily will help a lot with your symptoms.
Look it up at the coconut research center website.
Also a wholesome and low carb diet is helpful.
Hope this helps.
Wish you well.
Niko, Thanks so much for the info. I made an appointment with an infectious disease specialist as well. My rheumatoid doc seems to think I have lupus. They couldn't do any bloodwork though because I have had so much bloodwork done over the past couple of weeks that I started passing out when they were trying to get the first tube. So I have to build my blood back up first and then they are gonna take blood on Dec 19th to confirm what is going on with me.
The nice thing here is that you are able and determined to get to the bottom of
this. There are a lot of people who are in limbo in similar situations like yours,because of various reasons, like lack of health insurance or relying on one specialist's "guessgnosis" (I just made this word up-lol!) and thus perpetuating the suffering with diminished possibilities of getting any better.
You give me the sense that you will never accept anything like that.
Make sure you ask for a complete Borrelia , Pathogenic Mycoplasma
and Co-Infection Panel and request a high quality reference lab like IGENEX to run the tests, as the majority of the labs are not capable to test accurately. False negatives and to a lesser degree false positives has been
a serious issue with most labs, as quality has declined over the years (cost cutting measures).
A friend of mine said if they hired monkeys to shoot darts on the wall, they would produce better results and save a ton of money!
Now health and medical authorities are implementing new standards and policies to improve the situation.
Take time to check things out-visit the IGENEX website and the other sites I mentioned before. The more knowledgeable and proactive you become
the better chances you have to beat this.
That's what I did- in very overemphasized way actually- to the point that I knew more than the MD who was supposed to treat me. And that was the turning point for me. The inefficiencies of the medical system and also the fact that I did not like the idea of taking drugs, drove me to get educated in Holistic and Natural Health. Today I'm thankful for that, as I managed to overcome a "mystery" undiagnosed condition on my own and now for years my health has been very good.
You can definitely get cured and it would a good thing if the tests come back positive for an underlying pathogenic infection, as these infections are treatable once identified!
Check out immed.org for more details on that.
Wishing you well!
Hey Niko, yeah I have health insurance but I know the bills are going to be HIGH!! Especially if I end up needing any kind of surgery. The worst part about this is that I start a very gruelling nursing program in Jan. I have busted my butt for the past year to get in, and now this happens. I just hope I can get my symptoms under control by then, and then I would like to pursue a natural path for healing once its under control. I am just scared because I feel like my blood pressure is dropping too low some nights when I try to sleep, and sometimes I have trouble catching my breath. I went to my primary care physician with this concern and she took my blood pressure and said it was fine just on the low side (of course whenever I go to doc my blood pressure is acting normal). I just keep getting dismissed over and over again. She said the neurologist will have the answers about the low blood pressure perhaps if something is effecting my nervous system. I just feel like I'm going to die before I get treatment because my symptoms are so so scarey. Yet when I go to hospital or doc office I get sent right back home being told I'm fine. My doc even told me to consider that its all in my mind. It isn't in my mind! I have neurologist visit Wed along with a visit to my allergy specialist for food allergy testing. I'm very curious about the food allergy testing because what kicked this whole thing off was my glands in my throat swelling really big after I ate shrimp and my chest getting tight so I took benadryl and probably a couple hours later I felt better. I thought I had developed an allergy to shrimp out of the blue, but now I think perhaps it was the autoimmune disorder firmly taking hold. I have been going downhill since although I have felt better over the past few days, I still don't feel right though. So if the food allergy tests show that I'm not allergic to anything then I'll know for sure it is autoimmune related and not food related. I also think I'm having night sweats now. I just hope the docs can get to the bottom of this soon, and I hope I can hang in there.
If you don't mind me asking Niko what were your symptoms? Also, you say you had a mystery disorder, do you have a theory of what yours was? My rheumatoid doc says she wouldn't mind requesting a test be done on the infectous disease stuff, but I think she may only test for Lime disease. Would you recommend me goign to the infectous disease specialist for this or allowing the rheumatoid doc to request the tests. However, if she doesn't agree to do the whole workup that you suggests I will probably go to the infectous disease specialist anyways. My problems seem to be related to my nervous system, like something else has taken control and I can't have a normal day because of it.
Btw Niko, about 4 years ago I had a mystery illness and I wonder if it could be related to all this. I ended up developing a cyst on my groin area, and I had flu like symptoms. My primary care phsycian (a different one than now) kept giving me the run around. I was in excrutiating pain. Whenever I would stand up pain would run all the way from my groin area up through my ribs. Plus I was running a fever, and had chills, and felt miserable. Finally one day I got so mad at my primary care physcian that I stormed out of his office and went to the ER. The ER doctor referred me to a very good doctor who immediately started trying to diagnose me. He arranged for a bioposy and everything. They ended up putting me on antibiotics for a week and then they removed the lump and bioposied it. I had a huge gaping hole in my groin. The doc said the results of the bioposy were that it was just some sort of mystery infection. He asked me if I had a cat and if the cat had scratched me. I said yes but that was months and months ago that my cat Percy had gotten me deep in the calf. He said perhaps it was bacteria from that finally making an appearance but he really wasn't certain. So now I have to wonder if that mystery is related to this one?
Some underlying infections can lie dormant for years.
First they enter the body during some "unfortunate" event, ranging from a
a hike in the forest and getting Ticked (Borellia or commonly called Lyme)
having sex with your unsymptomatic partner that returned from a mission with the Armed Forces ( Golf War Syndrome and Stealth Pathogen/Mycoplasma Fermentan-Incognitus) or playing with a pet -and one doesn't have to be bitten necessarily, it can be transmitted by fluids like cat's saliva on the fur and just petting and afterwards rubbing one's eyes! ( Bartonella or other coexisting infectious agents).
Most people are unsymptomatic or their original symptoms gradually disappear, usually following some short term antibiotic treatment.
It's usually the immune system that kicks in to take care of things until
the immune system gets weakened by excess stress- this could mean a lot of things like emotional events, traumas, illnesses, accidents etc.
There's a critical point where the scale tips and then this is the trigger for the infectious pathogen to get activated. Once activated it starts feeding off sterols from the host's cell membrane-as cholesterol is their preferred fuel.
This weakens the cells structure and impacts on the mitochondria -energy production-until apoptosis or cell death. Eventually the pathogens take over
entire organs or systems this way. Of course the most vulnerable and weakest parts of the body get affected first.
The problem with all this is that these pathogens are extremely invasive
using cellular membrane to disguise themselves as regular cells, escaping detection from most tests and the immune system as well!.
This explains the negative results that patients are getting. It is too easy for many physicians to claim that there's nothing wrong with the patient and it is in all their head!
One more reason to deal with specific Labs, specific tests and expert doctors. I would recommend an infectious disease specialist who has the LLMD designation. This is very important as the IDSA dictates the protocol and policy regarding most of these -difficult to detect- infectious diseases.
And the Protocol is going against the health and well-being of the patients,
suffering from chronic autoimmune, neurodegenerative and undiagnosed conditions for various political and financial interests
Most MDs that might be knowledgeable in this field WILL NOT risk their careers, breaking protocol. So the patient is riding the medical merry -go-round from test to test from specialist to specialist.
Unfortunately, most patients get multiple medications to manage all their symptoms and never get well!
Here in Ontario there's not even ONE Lyme Disease Specialist, because
The College of Physicians and Surgeons reprimands every Doctor that
treats Lyme and Mycoplasma Infections beyond the "recommended"
short course of antibiotics according to their protocol.
The last LLMD who I recommended to someone in Ontario, was going under the name of Dr. B for anonymity between his Lyme patients.
Well now, as of November he is no longer treating Lyme Disease patients
and I heard that he's been muzzled!
I do hope you find some answers. There are still a few good doctors that care more about their patients, than the system and the policies.
Next time I will explain more about my situation.
You are welcome to comment or ask any questions and if you prefer you can pm me directly.
Wish you well.
I have recently been dx with sjogrens also, I have had symptoms severe enough to send me to doctors and specalists for the last 4 years. A lot of dissmisal by most, and the rest left with no clue. I too began having symptoms after a severe allergic reaction. My was to a medication. I was placed on steroids for it.
I had to join a clinical trial for sjogrens to get a diagnosis. I tend to have mild dry mouth and dry eyes. What bothers me is the severe weakness, fine motor tremors, Loss of control in my hands dropping things, all over body pain, I too have times where its difficult to breath almost like my chest is too heavy to allow me to breath. I have a lot of other symptoms too. Trying to find a rhuemy that knows what sjogrens really is and can walk the walk with me.
How were you diagnosed with sjogrens? During the clinical trial I learned that alot goes into the dx. UCSF is still conducting this trial.
Could you share what the criteria for Sjogren's dx is? Does everyone have an elevated sed rate? Exactly how were you dx w/ Sjogren's.
@Nikodicreta, thanks for all your help. If I have an autoimmune illness going on I really do think it could've been caused by an infection of some sort. I'm starting to feel a whole lot better now since I have been resting and eating well. Once I get diagnosed I think I'm going to take a natural route and really change my diet instead of taking meds. Now that my symptoms have subsided I think I do without meds. Of course if the infectious disease specialist tells me I have been infected with something then I am not sure a natural route will be possible to take care of the infection. I am having HORRIBLE acid reflux right now and I'm seriously wondering if I have a candidas overgrowth going on as well.
@heljell, yes Sjogrens seems to be such a rare thing that most people have never heard of it. My primary care physician diagnosed me just with blood work. The bloodwork showed I had a certain antibody. However, I have read that other tests must be performed to confirm, so I think that's what my rheumy must be doing at this point. However, my rheumy is now saying that maybe its lupus. I think I definitely have Sjogrens because I do have the dry eyes and mouth. Heljell, how was the clinical trial? My rheumy says that if I have lupus she wants me to join a study that's going on. I'm leary about this because I don't know how I feel about taking experimental meds if that's offered, however I don't mind simply being studied I just don't know if I want to be on meds, especially ones that are experimental still.
@karajo, I don't know what the criteria for Sjorgren's is, except that I know sometimes your bloodwork will show a certain antibody and I have heard they do a biopsy of your lip tissue as well. I don't really know because my primary care physican just diagnosed me by bloodwork alone, but I thought there were other tests needed to confirm for sure. You might ask Nikodicreta because she knows alot.
The UCSF study was soo great all nice and willing wanting to share all their knowledge, they did blood work, eye tests with stains, saliva tests and lip biopsy, I was pos for 1 antibody for sjogrens minimal on the eye and saliva, pos lip biopsy. the lip biopsy was no worse than bitting your own lip really bad, i didnt even get stiches
Thanks for the insight into partcipating in studies heljell. That will really be helpful to me. Sounds like you learned alot about your condition as well. So guess what Niko? I went to the infectious disease specialist and just wanted to punch him in the face. He was a jerk!!!! He kept laughing at me, and shaking his head and telling me I am HEALTHY and scolded me for all the tests I have had run, as though its a bad thing to be thorough. Hello, I pay 20% for health insurance so trust me, this is a big chunk of change coming out of my pocket as well, so its not like I'm having these tests done for fun. He was telling me that I have had too many xrays done etc, and I was so mad because I am the one who tells these doctors everytime I go that I've already had an xray and I don't need another one and they do it anyways, I had to force my rheumy to get my chest xray from my primary care physcian because she wanted to do it AGAIN and I'm the one who refused it, yet this doctor is down my throat like I'm telling doctor's to xray me or something. I was too through with him. He told me "what do you want me to do because I'm not running anymore tests" and I was like, nobody asked you to run anymore tests, I'm just here for a second opinion! One good thing though is that my rhuemy is being very thorough and running all kinds of bloodwork including lime disease so that is comforting to know. I will just wait and see what comes of that. I have been feeling much much better though. I don't know why some of these doctors are even practicing when they obviously don't like people. I even asked my rheumy if I should go to the infectious disease specialist or not since she was being so thorough and she told me to go on ahead and go. So its not like I didn't check with her first either. Oh and the other doctor (I think he might have been retired of something) who took my bp to help the nurses out asked me why I was there and I told him I have heard that some autoimmune diseases are the result of an infection by a pathogen so I wanted to get the specialists opinion and he looked doubtful and said "looks like you have been on the internet." What a jerk! Its a fact, not something read in a chain email. I couldn't believe the attitudes at that place.
Interesting comments from both of you, yet very different experiences.
Here's something worth reading from some recent activity in the Lyme Community:
What consititues a negative or positive IGG or IGM for Lyme?
Happy and Safe Holidays! You too Karajo!