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Intro, long and strange story

M

mrs. vr

Guest
Hi, I hope it's ok to post here, because technically, I'm waiting to have my diagnosis confirmed, but maybe you can offer some insight for me. I am a 37 year old mother of three, and about nine years ago, I started having joint pains. At the time, I was running a fair amount, and since the initial pains were in my knees, I was told that my kneecaps just weren't tracking well, and sent for physical therapy.

The pain continued on/off for several years, and migrated to other joints (shoulders, elbows, wrists, occasionally feet) and I started getting cortisone shots when it would get to the point where I couldn't move the joint.

FINALLY a couple years ago, I found a new orthopedist who sent me for some blood work. My SED rate and C-reactive protien were both elevated, so he sent me to a rheumatologist. He just looked at my knees (they weren't hurting at that time) and said there was some minor degeneration, but nothing to write home about, and sent me on my way. About six months later, I needed another cortisone shot, ortho sent me for labs, inflammatory markers were elevated, and I went to another rheumatologist who told me i was too fat (I was a size 8/10 US at the time) and that I had hypermobile joints and never to do any exercise other than swimming and lose weight. Oh, and he also kept saying the inflammatory markers weren't important because we didn't know where I was in my "cycle" (Im on the pill, and know EXACTLY where I am, but he wasn't listening)

In the meantime, I have suffered hair loss, had recurring ulcers in my mouth, and eye inflammation. When my eyes would turn red, I'd call my primary doc, and he'd just say, oh it's probably viral conjunctivitis, just wait it out.

ANYWAY, fast forward to a few months ago, I had another bout of the eye inflammation and happened to be going to my primary that day for a flu shot. He actually SAW it this time, and sent me immediately to the eye doctor who diagnosed me with episclertitis and said it looked like a Lupus related rash. (I've been tested several times for Lupus, with negative results). A blood test at that time showed a SED rate of 51 and a C reactive protien of 26.6.

About the same time, my husband was visiting a new rheumatologist, who is known for being very aggressive about finding out what's wrong with people, and I mentioned all this to him, and he told me to make an appt. with him.

During my first exam with him, he started asking me about my bowel habits. I thought he was nuts until I started thinking and realized, I was going a LOT, maybe 7 or more times a day, and it was never, for lack of a better word, formed. Most of the time, it's not really crampy, painful, so I didn't even really think of it as diarrhea until he started asking me. I also in retrospect remembered a couple of very painful episodes that would come on after eating, but at the time, I thought they were stomach bugs.

He did MORE blood work, and while I was waiting for results, I started a period of rectal bleeding. I have hemmorhoids from childbearing, and have bled on and off for years, but this was a not insignificant amount of blood, so he sent me to a GI doc for a colonoscopy.

The colonoscopy was, to my surprise, totally clear, but when I went back to my follow up appt with the rheum, it turned out that I had tested positive for the ASCA IgG antibody.

That, in conjunction with the symptoms I've had made my rheum feel very strongly that it was Crohn's we're dealing with.

Yesterday I had a small bowel follow through, and tomorrow I'm having an upper endoscopy, then I have to do the video capsule.

Oh, I forgot, I've also had reflux for many years, so in a way, I'm glad they're doing the upper endoscopy, as i've always been a little worried about my esophagus.

I know I'll have a more definitive answer soon, and hopefully some treatment that will help with my symptoms (my knees are flaring up this week, after a high fever this past weekend), but I guess I'm wondering if it's possible to have more extraintestinal symptoms than intestinal and still have crohn's.

I certainly don't want to have Crohn's, but at this point, it would just be nice to know I'm not totally nuts.

If you made it this far, I really appreciate it. I'm not sure even *I* could read that much about myself!:eek2:

Thanks for listening.

Sharon
 
hiya sharon & welcome.

you poor thing, you havent half been through it, and for so long too! its amazing that so many factors have been happening which should really have alerted someone along the way, but have been treated separately and no-one has looked into the connection before now. thank goodness you decided to speak to your husband's rheumatologist!

i'm probably not much help regarding your questions - i am suffering other symptoms with my crohns apart from the bowel ones, but these symptoms appeared and have exacerbated with the crohns activity. i suppose i've been lucky in that i've never had ulcers on my skin nor in my mouth, and my eyes havent ever been affected, but i know these can be typical crohns signs.

i've always had the achey joint thing tho, right from being a child, in fact i used to attend hospital weekly for short wave diathermy treatment on my knees - diagnosis was 'growing pains'. lol, i still have the painful knees and i reckon i've stopped growing now.

sorry i cant be of more help right now, but i wish you all the best with your tests and hope the results do give you some indication of whats going on, and how to get you back on track.

good luck :)


dingbat.
 
M

mrs. vr

Guest
Thanks. I guess I should have clarified, when I say my colonoscopy was totally clear, I meant for any lesions. I am, apparently, growing a whole herd of hemmorhoids in there!

I guess I'll know more this afternoon. I woke up in the middle of the night with HORRIBLE reflux, so I guess the good news with that is that they'll be able to see it in action. Sigh. I don't even have to get there until three...gonna be a long, hungry, thirsty, nervewracking day.
 

Kev

Senior Member
Hi Sharon... Welcome to the forum. Chin up, the diagnostic gauntlet is probably coming to an end... I think/hope that, once you have a definite diagnosis, you'll probably feel more relieved than anything else. All of those disjointed, seemingly unconnected issues WILL make sense, and as you put it, you'll be vindicated. It is relatively common for many folks with IBD to go thru this nitemarish experience. I know no one looks forward to a diagnosis of IBD.
But, it could be worse, and once diagnosed correctly (for a change) then you'll at least be able to start treating the disease, rather than just coping with the myriad of symptoms. Anyway, regardless of the outcome, I hope you'll come back and let us know how you made out, and what conclusion the dr comes to
 
M

mrs. vr

Guest
Thanks, Kev. I just got home a little bit ago. They didn't find anything glaring, other than I have a hiatal hernia, and a schatzki ring, but they took a bunch of biopsies, and i have to schedule the camera swallow to get to the part of the GI tract they can't get to from the top or the bottom! The rheum told me if nothing shows up, they'll just start treating me symptomatically and wait for something to eventually "declare" itself, since there is clearly something inflammatory going on. I just want them to be able to find out what it is and FIX it, I'm tired of it all dragging on.

Thanks for letting me whine. :)
 

butt-eze

Superstar
Hi Sharon!

I'm happy to hear that you have found a pro-active doctor. As many people in these forums have determined, you need to be an advocate for yourself. Unfortunately, many doctors are just not interested in taking precautionary steps that can help you in determining what is really wrong.

I was wondering, what is ASCA IgG antibody? I myself have had a prometheus lab test done (blood work) that came back predicted for Crohn's. Is that the same test???

Amy
 
M

mrs. vr

Guest
Hi Amy, yes, from what I can tell, the tests are proprietary, only Prometheus runs them. To the best of my knowledge, they test for several different antibodies, which can help differentiate between Crohn's and UC. There are two different ASCA antibodies, one is the IgG and one is the IgA. (Im sure someone else can explain better than me) Here is some info from an NIH page;

BACKGROUND: Perinuclear antineutrophil cytoplasmic autoantibodies (pANCA) are a well recognised marker for ulcerative colitis. Antibodies to oligomannosidic epitopes of the yeast Saccharomyces cerevisiae (ASCA) are a new marker associated with Crohn's disease. AIMS: To assess the value of detecting pANCA and/or ASCA for the diagnosis of ulcerative colitis and Crohn's disease. METHODS: Serum samples were obtained from 100 patients with Crohn's disease, 101 patients with ulcerative colitis, 27 patients with other miscellaneous diarrhoeal illnesses, and 163 healthy controls. Determination of pANCA and ASCA was performed using the standardised indirect immunofluorescence technique and an ELISA, respectively. RESULTS: The combination of a positive pANCA test and a negative ASCA test yielded a sensitivity, specificity, and positive predictive value of 57%, 97%, and 92.5% respectively for ulcerative colitis. The combination of a positive ASCA test and a negative pANCA test yielded a sensitivity, specificity, and positive predictive value of 49%, 97%, and 96% respectively for Crohn's disease. Among patients with miscellaneous non-inflammatory bowel disorders, three were ASCA positive and two were pANCA positive. One control was ASCA positive. The presence of ASCA in patients with Crohn's disease was associated with small bowel involvement. CONCLUSION: ASCA and pANCA are strongly associated with Crohn's disease and ulcerative colitis, respectively. Combination of both tests could help the diagnosis of inflammatory bowel disease.
http://www.ncbi.nlm.nih.gov/pubmed/9691915
 
Hi and like so many others said, welcome to the forum.

I was recently diagnosed with Crohn's (It took my doctor's six months) and to give you some support, I had the ulcers in my mouth as well. I had the joint pain, but it coincided with Erythema nodosum. Erythema nodosum is a rash that forms the fatty layer of skin and it really hurts. I couldn't walk unless I was on prednisone. I didn't start bleeding until the night of my diagnosis, and it wasn't pretty.

The ulcers in the mouth was something called thrush. My suggestion: Don't look this up on the internet. The photos will make you feel like what you have is worse. Or at least it did to me.

I saw a total of 6 doctors or so in the time frame, including an ENT doc and a dermatologist.

Keep pressing your doctors for help. I wished I had done more of that, but there reasoning always made sense to me. I should have known better that something wasn't right because I had the same bathroom trips and the same stomach cramps every day.

Good luck with the diagnosis.
 
M

mrs. vr

Guest
IF my insurance approves it, I'll be having the video capsule swallow next Wednesday.

Cuddles, the thing that makes this so hard, is my husband has had a mystery illness this past year, but much much more serious symptoms than I have, so in a sense, I don't have as much energy to push to get MY stuff taken care of, which is really self defeating in the long run, I suppose.

It's all very very exhausting. I just hate feeling like people are looking at me and thinking "well, the doctors havent FOUND anything, so it must all be in your head" which, I know very well it's not. My MIL said to me last night "Is there a part of your body they HAVEN'T looked at?" :yfrown: It's not like I ENJOY feeling like crud.
 
I am curious as to what the symptoms of your husbands mystery illness are?

Given all the illness in our family lately, maybe I can throw some possible causes out there. I have spent a better part of four years studying all manners of diseases.

Dan
 
M

mrs. vr

Guest
Dan, he's had serious vertigo that landed him in the hospital a couple of times, transverse myelitis which has left him basically numb from the waist down , and retinal vasculitis. The docs have been back and forth and back and forth, with no answers. We've been to Hopkins several times, and are going back next week to meet with yet ANOTHER specialist before we throw in the towel and go to Mayo.
 
Well, it certainly could be many things, but the most likely is a bacterial infection, and likely more than one. I am guessing a tick borne illness such as Lyme disease or Rocky Mountain Spotted Fever. Not because it could not have other causes, but because while one symptom would be difficult to diagnose individually, the three are not normally associated with each other. But all three are associated with Lyme disease, and/or the common co-infections that can accompany it.

It is no wonder you cannot get a diagnosis. Doctors are really stupid when it comes to this disease.

This is just my best guess, because it is much more common than most people realize. My wife has been battling it for over three years.

If you want to rule this out or in, see a Lyme Literate Medical Doctor aka LLMD.

I would not waste time with any other doctor. LLMD's can diagnose by symptoms and are familiar with other infectious diseases as well. This is important because Lyme tests are only about accurate about 40% of the time.

I would put money on this being a tick born disease. Even if he has no recollection of being bit by one.

Do some research on Lyme disease and Rocky Mountain Spotted Fever.

Here are some abstracts concerning Lyme and some of the symptoms listed. Vertigo is so common in Lyme disease, I did not even bother to reference it.



Retinal vasculitis in Lyme borreliosis.
Leys AM, Schönherr U, Lang GE, Naumann GO, Goubau P, Honore A,
Valvekens F
Bull Soc Belge Ophtalmol 1995 259 205-14


Abstract
We observed retinal vasculitis in seven patients with clinical and serologic evidence of Borrelia burgdorferi infection.

Three patients presented with abrupt loss of
vision due to acute retinal vasculitis.

Funduscopy demonstrated engorged veins, hemorrhages, perivenous infiltrates and retinal white spots. Fluorescein angiography showed leakage from the veins, from the white spots and from the optic disc. Moreover arterial
occlusions were observed in two patients. Four patients had signs of chronic uveitis with vitritis, cystoid macular oedema and retinal vasculitis, which was associated with neovascularization and vitreous hemorrhage in
one patient, and with optic neuritis in another
patient.

Six patients received antibiotic treatment and three patients received systemic corticosteroids.

Marked improvement in the three acute retinal vasculitis cases occurred within several weeks, the fundus changes disappeared in another few months, and no recurrences were observed. The final visual acuity was excellent in these patients, although optic disc pallor and
visual field loss persisted in one case. In the four patients with chronic uveitis visual blurring improved following antibiotic treatment and the retinal vasculitis and vitritis slowly regressed. The proliferative retinopathy of one patient required panretinal laser treatment.



Here is another abstract concerning Bartonella and transverse myelitis. This is normally not a problem in a normal immune system, but if it is suppressed by Lyme disease it becomes a problem. This is a common Lyme co-infection.
The same symptom can occur with Borrelia Borgdurferi bacteria aka Lyme disease. So you have two suspect pathogens that can cause this, both common to tick bites. All other symptoms can be attributed to the same tick bite scenario.




1: Clin Infect Dis. 2007 Aug 15;45(4):e42-5. Epub 2007 Jul 5.

Links Transverse myelitis in 2 patients with Bartonella henselae infection (cat scratch disease).

Baylor P, Garoufi A, Karpathios T, Lutz J, Mogelof J, Moseley D.
Department of Medicine, Veteran's Affairs Medical Center, Fresno, CA 93703, USA. Peter.Baylor@va.gov Cat scratch disease is usually a benign, self-limiting condition.
Neurological manifestations are uncommon and may consist of encephalopathy, seizures, and coma. This report describes 2 cases of transverse myelitis: 1 case in a 46-year-old man who had lymph node biopsy and serological testing results that were positive for Bartonella henselae and 1 case in a 13-year-old adolescent boy who had serological testing results that were positive for B. henselae. These are 2 of the only 3 cases of transverse myelitis associated with cat scratch disease that have been reported since the causative organism was first reported.
PMID: 17638185 [PubMed - indexed for MEDLINE]

Here is another link of interest.

http://pathmicro.med.sc.edu/mayer/ricketsia.htm


I hope you find the answer soon.

Dan
 
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M

mrs. vr

Guest
I appreciate the info. Early on, they went back and forth about Lyme, or another bacterial infection, because he had some equivocal screening tests, and he saw an infectious disease specialist. But, they ruled all that out after extensive blood work, and a lumbar puncture. (the bartonella tests were unequivocally negative).
 
My wife was bit by a Deer Tick, brought it in to the doctor, and had the swollen area around the bite and symptoms of Lyme disease. She saw two different doctors, had two separate blood tests for Lyme and they declared she did not have it.

Her symptoms got worse while I was trying to figure out how to treat it. We knew it was Lyme, as it fit every common symptom and is not rare around here. She was losing her ability to even walk as the joint pain was so bad.

To make a long story short, after we treated for Lyme she improved. We have used various methods and currently she is symptom free. She is not cured, but we are going for a cure right now.

My point is that if it is Lyme, it is going to get worse. Doctors rely on tests to identify it and is not that simple.

The easiest way to test for Lyme is to treat it. There are any number of ways to treat it effectively. If he has Lyme disease, the treatment will make him develop flu like symptoms. This is from the herxheimer effect that comes with killing the bacteria.

This is how we confirmed my wifes Lyme disease. A simple dose of Cats Claw produced fever and flu like symptoms. I took the same dose and it did nothing. It couldn't produce the reaction in me, as I did not have the bacteria.

Same thing happened to me when I was in the height of my Crohn's problem. I had a constant burning reflux in my stomach. I had three tests for H-Pylori, one was a biopsy. They all were negative. Finally, I decided it had to be H-Pylori since there are simply very few things that cause my particular symptoms. I treated it using an experimental method I was familiar with and immediately resolved the problem for good. Yet another example of how poor some of these lab tests are. They rely on a certain amount of bacteria or antibodies to be present. If it is less than that amount, it shows up as negative. Kind of like taking a bucket of water out of a lake and determining there are no fish in the lake because the bucket had none in it.

It may not be Lyme or a tick disease, but the tests do not eliminate it as a cause.
A suppressed immune system does not produce antibodies, and the test relies on antibodies. If you want an accurate test, you would have to treat it for six weeks until enough dead bacteria can trigger the immune response. Then a positive test
is likely.

This is just what I have learned over time. I hope it is something easier to cure, but if it is Lyme, it needs to be treated soon, with or without a diagnosis.

Dan
 
M

mrs. vr

Guest
I should have said, he did a month of IV antibiotics in case it WAS lyme, as well as a week of IV steroids, and a month of oral to shrink the lesions. We haven't much looked into natural remedies yet, but it's definitely interesting to me. I did know about the tests being difficult since the bacteria moves around in the blood stream.

I'm glad to hear your wife is recovering, and hope she'll have a full recovery.
 
Glad to hear they did the IV antibiotics. At least it eliminated one possibility. It hopefully means it is something more easily resolved, providing they can figure out what it is.

It is an unusual combination of symptoms. I will dig into it a little more, but it must be rare. Lupus is the only other thing I can think of, but I do not know as much about that. That sometimes has a butterfly rash on the nose. I would think they have likely ruled that out also.

MS has many of the same symptoms. I am not sure how they diagnose it outside of a brain scan.

Dan
 
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Kev

Senior Member
Hmm, well if it does eventually express itself to be MS, then take a look into LDN. I went LDN for a couple of typical reasons; but also because my younger sister and a good friend from college have MS. Figured I could be a guinea pig for myself, and possibly my kids if they developed IBD; but also for my sister and my friend. I would even go out on a limb so far (course, it's easy for me, my family tree is obviously full of tree swinging primates).. but if they fail to dx the problem; might be worth a shot in the dark to try LDN.. since the dosage is so low, and the side effects almost non-existent, there's very little risk it could hurt
 
M

mrs. vr

Guest
Kev, that's interesting stuff. I'm definitely going to be watching and see what happens with the clinical trials. Thanks.
 
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