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Immune Mystery
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Immune Mystery

I need help finding out what is wrong with me. I have been to several doctors over the past 9 months and nobody has been able to figure out what is wrong. All the doctors agree there is something definately wrong, but have not figured it out. I have literally had dozens of tests. Two main symptoms are painfull exessive swelling of multiple joints to the point of immobility, knee, big toes, ankles. Intestinal issues are loose stools, diarrhea, anal fissures(past), abdominal pain, gerd, mouth ulcers. As well i have fatigue, and experience very bad unexplained muscle pain in the arm, legs, and back. calf muscles extending to achiles tendon being the worst. I have been told that i DO NOT HAVE: crohns, lyme, lupus, celiac, behcets. I am really scared of this condition, not knowing what it is is making things worse. Most recent doctor treating me believes i may have lyme and has sent a western blot off, with no posetive elisia. She also believes that my immune system may be reacting to some sort of insult in my body, and that i may have some form of IBD. Any ideas, suggestions, advice would be greatly appreciated. I can provide a list of all diagnostic tests and procedures if necessary
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434278 tn?1324709825
How many times did they do an ANA and other antibody type testing?  Autoimmune diseases don't always show up.  Retesting is usually helpful.

To me, it sounds more like lupus.  If they retest your ANA, I would encourage you to spend time in the sun prior to your next ANA.   (about 15 min on a hot day)
1450453 tn?1293764571
I only had the ANA test once, about 3-4 months ago. There is no lupus in my family and i have never had the Lupus rash but i guess anything is possibly. Do Lupus patients go into remissions? For the past month the majority of my symptoms have goine away. What will going in the sun do for the Lupus test?
434278 tn?1324709825
Yes, lupus and any autoimmune can go into remission.  I know right before the really high ANA I had, I went awhole month w/o any symptoms.  I was jumping around so happy.  (when you've been as sick as I was, and it all goes jump!...and praise the Lord!)  

You've just been sick for 9 months.  I know the rash didn't become prominant right away.  It seemed like some of the symptoms would become evident.  Or they would come and go.  So I got to where I would keep a journal. (actually, I printed out a calendar and wrote the symptoms on the day I had them).  

I don't have lupus in my family either, but my mom has arthritis.  Osteo, although rhematoid hasn't been confirmed, she does have some joints that look like rhematoid.  But nowhere near as bad ad another friend of mine.  Her joints look horrible.  

What the sun does in lupus patients is it causes an immune response to occur in your body, thus causing the ANA level to spike.  I can spend time in the sun (just a short period) and might not feel the effects the next day, but usually the 2nd or 3rd day after sun exposure.  It makes me feel tired, achy, joint pain, weak muscles.  I also get the malar rash from just being outside.  My face gets magenta red.  Then in a day or two, I get skin erruptions.
1450453 tn?1293764571
It's been a really confusing ride for me. I have had doctors literally tell me that they have given up on trying to find out what is wrong. The problem that i have with this sickness is that all of my symptoms seems to fit a huge variety of conditions and diseases. I almost wish that I did have that typical Lupus face rash. Some of the things other people say in these forums really stand out to me. Like when they are in remission some people describe that when they sleep they wake up stiff all over like they slept in wet cement. I feel like that everymorning. These disease symptoms seem to fit me so well (like so many others) but I am afraid to push my doctor test me more for it. I have lost SO much mnoney trying to find out what is wrong.
1450453 tn?1293764571
one other thing another person on this forum said that stood out to me because i had the exact same thing happen.... before she was diagnosed she had a negative ana but had a really elevated sed rate. my tests were like that too
Avatar m tn
When you speak of mouth ulcers you should look at your teeth.  Do you have alot of root canals and amalgam(mercury) fillings.  Do you have bleeding gums.  That could be the answer to your problem.  You could look at a detoxification program which will give you the various supplements you need to get the mercury out of your body.  I followed one by Dr. Tom Mcquire.  You can google his name online.  If you take the supplements he recommends in his book and you get better you should look at your teeth as the problem and have them taken care of.  You can google oil pulling which will explain to you an Indian remedy for removing bacteria from your body.

You should realize that our health is decided by what we put in our bodies.  Eating a diet consisting of raw fruits and vegetables will allow our bodies to heal.  There is no majic pill and it is not easy to stay healthy.  Putting things like HFCS, artificial sweetners, MSG, mercury, lead, arsenic, pesticides, hydrogenated oils,  and all the chemicals that we put in our food now will make you sick if you get enough.  Try reading the back of a package of process foods and see if you understand all the chemicals listed.  Eating the raw fruits and vegetables which our bodies were designed to eat will give you the vitamins and minerals which will let your body get rid of these poisons.  Google paleo diet and it will explain to you why we are seeing all these neurological disease.  There are many chemicals which can effect our nervous system.  Try to eliminate as many as possible and think you will see a difference.  Good Luck.  
1450453 tn?1293764571
I've never had a root canal, i don't have any murcury in my teeth. I don't just have "mouth ulcers". When i had my gastroesophegealcolonoscopy thing they found 2 stomach ulcers as well. At that time I had an anal fissure also from constant diarrhea.
434278 tn?1324709825
Do you have a face rash (when you spend time in the sun)?
434278 tn?1324709825
Yes, please provide test and their results.
Did they test for Rocky Mountain Spotted Fever or any of the other tick borne illnesses?
1450453 tn?1293764571
I don't have the exact number for the results but I can provide the name of all the tests i have had since january. From what all of my doctors have told me, every test was negative except for having elevated sed rate and low white blood cells i believe. Do you still want the list of diagnostic tests performed without the actual numerical results?
1450453 tn?1293764571
I also have noticed that alot of Lupus patients have low Vitamin D. I have very low Vitamin D as well.
434278 tn?1324709825
Yes, low vit D seems to go hand in hand.  Did anyone put you on prescription D?

I would like to see what all they have tested.  That way I or someone else might have a suggestion.
1450453 tn?1293764571
I was on 10,000 units of vitamin D for 2 months. This is a list of the tests I have had.

DHEA-S blood test
FSH blood test
Immunoglobulin blood test
LH blood test
Noninfectious antibody test
Outpatient consultation
Total testosterone blood test
TSH blood test
Vein puncture
Vitamin D-3 blood test
Special staining method
Surgical pathology  
Upper GI endoscopy with biopsy
Outpatient consultation
Antinuclear antibody (ANA)  
Bacterial culture  
Body fluid cell count
Complete blood count  
ESR test
Rheumatoid factor assay
Smear staining
Lyme disease antibody test
Emergency medical care  Emergency medical care

I do not get facial rashes ever, i do get blistery rashes on my fingers and toes, doesnt seem to have anything to do with the sun. The last time my ankle swelled up i got a bad rash all over my ankle and foot that looked like hundreds of tiny bug bites.
Knee X-ray
1450453 tn?1293764571
Did any of these tests bring to mind any ideas. Maybe any other tests i should request or repeat?
434278 tn?1324709825
I will have to think on this some more.  Perhaps your dr. could test for other tick borne illnesses (Rocky Mountain is one, I know there are others I can't spell or pronounce)  Another thought is chronic fatigue.  But I'll try to do more research.  

Praying for you, Kara
434278 tn?1324709825
check this out, this maybe a possibility.

The IBS may be a symptom related or non-related.  

Let me know what you think.  There is actually a new forum on medhelp for this condition.
1450453 tn?1293764571
thank you, i checked that out. unfortunately that doesnt really sound like me. there are some of my symptoms on that list but it excludes some of my main ones also. ive found that i can look up almost any immune issue and find some of my symptoms on every problem, disease, condition. my most recent doctor who i thought was going to be a big help has refused to release my last set of tests results to me and i do not know why. i am really upset and angry because i am comming out of a month long remission. after 10 months, i was almost symptom free for a whole month, that changed 2 weeks ago though. i have contacted the UPENN hospital and requested an appointment with one of their rheumatologist specialists, i am starting to have mental disturbances that are concerning me. thank you so much for all of your help, suggestions and your prayers. good luck to you in life. =)

434278 tn?1324709825
Sorry for taking so long.  Our family goes camping in October. I'm back now.

When I look at your symptoms, I see so many lupus symptoms.  I know with myself, the symtpoms were not all screeming at first.  Well, the joint pain and fatigue was.  But like the rash was not.  I think it was because I felt soooo bad that I didn't go outside.  When I spent time in the sun prior to my ANA being tested is when things became very evident.

Here is a list of symptoms for tick borne illnesses:  I will try to send the symptoms of lupus on a different post. (I'm on the wrong computer)

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Poor sleep (especially difficulty falling asleep); poor sleep quality
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.



As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___Anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
1353650 tn?1429466974
I read your post and wanted to see if I could help. My husband has a very similar condition as you. He is 45,5'6", 150bls., eats very healthy and is very athletic. He suffers with a blister like rash on his fingers that come and go, IBS, hair loss on head, arms and lower legs, joint pain in knee and shoulder, lower back pain, muscle twitching and cramps, headaches, neck stiffness and pain, mouth sores, rash on abdomen that comes and goes (haven't seen it for a while), chronic fatigue ( can never sleep enough), restless sleep, tight muscles, muscle weakness, muscle pain, soles of feet have pain, vision is one eye went bad over night, at times a rapid heart rate and more. We went to an endocrinologist and he was tested and found to be pre diabetic with hypoglycemia. The doctor also said that his good cholesterol was below normal and his bad was above normal. Along with him having this condition I (his wife) and his son (19) also have similar problems. We all suffer from blood sugar issues, cholesterol issues and poss. thyroid issues. The thyroid blood levels were all high normal and we all suffer with symptoms of a thyroid problem. Our endocrinologist recommended that we all get checked for lyme disease and any co-infections. We went to a lyme specialist and got tested. Our results came back inconclusive and my husband showed signs of having been exposed to lyme. We were all put on antibiotics (doxycycline) for a month. We will then get retested to see if we have positive results for lyme or co-infections. We have been on the antibiotics for a week and already see mild improvement. Lyme disease along with it's co-infections is what you should definitely be looking into. These bacteria effect everyone so differently and they mimic so many other illnesses. They run havoc on the endocrine system setting you up for low thyroid, blood sugar problems, digestion problems and adrenal fatigue. One test you should have done is a 3 hr. glucose test with insulin draw every hour. My husband is now able to control his diarrhea by not ingesting any sugar and only eating small amount of complex carbs. He can also not eat dairy unless lactose free (in moderation), some fruits or pasta. The diarrhea has something to do with the digestion of sugar. If you need any help you can message me.
1353650 tn?1429466974
One last thing. I read that you are having mental disturbances. We have that too. Short term, long memory problems. You feel like your getting Alzheimer's. We also suffer from vision problems and much more.
If you go to you can search for a lyme literate doctor of lyme specialist. Some take insurance and some do not.
No matter what anyone tells you, you do not have to have a bulls eye rash to have lyme disease.
You should also watch the movie Under Our Skin. It is a documentary about lyme disease, how it's epidemic, misdiagnosed, has very poor reliable testing and pretty much ignored by the medical society. My husband, myself and my son are on a long road of antibiotics, supplements, and a low glycemic, high fiber diet to get rid of this disease.
I went to a rheumatologist for my condition and was told I have fibromyalgia and an elevated rheumatoid factor almost 2 years ago. My rheumatologist wanted to put me on anti-depressants, pain medication and auto-immune suppressants so I wouldn't get rheumatoid arthritis. I don't have rheumatoid arthritis to this day and have controlled my pain through diet and supplements. Steroids and auto-immune suppressants will destroy your only chance of surviving this disease. They will lower your immunity and the virus will take over. You should start helping your immune system fight the disease by taking supplements that support your immune system and adrenals. Doing this has helped us quite a bit. Good Luck to you. It is a long journey.
1450453 tn?1293764571
Thank you, both of you for the long posts on Lyme Disease. I have been seeing a lyme specialist out of Maryland since the start of the summer but my treatments have been tricky due to complications. I spoke with my Lyme doctor today who finally got my Igenex results back, which were equivocal... so something showed up but not enough to call it posetive. I will be repeating these tests in a few week. I have already been put on medication for Babesia, which my doctor thought i probably had. My lyme doctor is also going to run more bloodwork related to immune diseases, repeat my ana, sed rates, and blood counts... she will be looking into any other tests that may help with the diagnosis. She still suspects Lyme strongly but she believes that the lyme bacteria may have triggered something else. Immune disease runs in my family slightly. I have done extensive research into Lyme, ive read all the books, read every bit of the websites, ive read dr. burascono's treatment guide, ive seen Under Our Skin. My gut tells me this is either definately Lyme, or definately Lupus. I have been going on these forums trying to get Lupus' patients opinions and such because I really believe that in alot of these cases patients know more about the disease than doctors do. It is scary for me to let somebody (my doctor) treat me with such strong anti-biotics simply because if i don't have Lyme, the antibiotics are going to worsen the condition of my immune system with no benefit. After we repeat my ana, sed rate etc. my Lyme doctor is going to put me on intramuscular antibiotic injections to see what happens. Another thing that makes me suspect lyme strongly is that when i start the antibiotics i get 5x sicker immediately, this is known as a Herxiemer reaction in Lyme patients. I have also scheduled another appointment with a rheumatologist whom i saw twice about 7 months ago.
1450453 tn?1293764571
I will probably message you within the next few days with more specific questions about your journey with Lyme. I am really tired tonight, lol. I can't think of the right questions. I want to talk more about the diagnostic tests you and your husband had.
434278 tn?1324709825
OK, I'm back on my regular computer.  Here are the symptoms of lupus:

They are:
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflamation (inflammation) of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
muscle pain and weakness
poor memory
poor circulation in fingers and toes
tingling in extremities
weight loss
abdominal pain
blurred vision
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat name a few

It takes more than a possitive ANA for a dx of lupus, you also must have at least 4 of the 11 criteria.  It's like they put all the puzzle pieces together.  Meanwhile, you are the one suffering.  We've all been right where you are....out in dx limbo land.  But many of us are praying for you and care about you. :)

God's blessing on you my dear.
Avatar f tn
1353650 tn?1429466974
We had the typical ELISA test, Western Blot, DNA testing, antibody testing through MDL labs. I don't know the specific names of all the tests but, I will ask on the 26th when we go to get re-tested. If the testing doesn't come back with some kind of positive results this time, then we may go through IGENEX  Labs for testing. If you get off of sugar and white flour it will really help your situation. It has helped my husband a great deal with his loose bowels. We tried extra fiber because doctors told us that my husbands condition was caused by IBS. It was actually caused by the sugar and white flour intake. I hope you are taking good pro-biotics with your antibiotic treatment for lyme. We are doing well and have noticed some improvement with pain. I believe the antibiotics are causing us to be fatigued. It is really effecting my son. We have to discuss this with our doctor when we see him. Hope you are doing well. Is your treatment making you more fatigued or have you been this way for a while? If you need some one to talk to just send me a message. I wish you the best.
1353650 tn?1429466974
You need to read Dr. Burrascano's recommendations on treating lyme disease. He recommends certain kinds of supplements and diet to help get through this condition. You can not get through this on antibiotics alone. You can also look on the ILADS web site to find guidelines given by Dr. Burrascano. He is one of the doctors in the lyme documentary Under Our Skin. He has been studying lyme disease for the past 25 years and is one of the best doctors on the subject.
667923 tn?1421466324
Hey guys, I was in awe when I read this. I have been stuck in bed for almost 3 years and THIS is hard. I read all of the symptoms for each Karajo and @ the Lupus symptoms. I am definitely not intolerant to cold, it is just the opposite..I can't stand to get hot and I get so hot easily and in the winter too. I run the A/C when it was 45 outside with fans(2) running ALL the time. I have to stay baricaded in my room because everyone else says that it is cold in it. I keep this low-grade fever, but I was always a person that had a fever at 98.6 because my norm was 97.9. I had a lot of the symptoms from that Lupus list, especially this malar rash over just the cheek bones not over the nose and it looks like I just put a little blush over it,not much. I don't know @ the blood in urine or my hair falling out, but it had gotten thinner. I don't really get a sore throat, hardly ever, but every other symptom that u have listed, I have. I wish I could find a dx and I have to mention that I did get bit by a tick @ 3 yrs. ago and I try to think back if all of this got worse then, but my memory is gone and everyone else is tired of hearing @ it..I think.:(
It could be Lyme and I have terrible cramps in my calf muscles. They stay so tight and they hurt so bad with the muscle cramps, pains, sensitivity and my overall body sickness. I did find a Lyme Doc that I am trying to get in to see that is the closest. He is @ an hour or so away, but worth finding this answer.
I do have my blood work results, if anyone can help me figure this stuff out.I do have ALMOST everyone of the Lupus ones, but I have been a small town. Does that make a difference?  
I just want to say that I thank u sooo much for the effort u put forth in giving everyone this list to check out and to compare. I pray that we can ALL have a wonderful Christmas together and hopefully with a limited amount of, we can give love as well as receive it.:)) Merry Christmas and Happy New Year.:))
1756321 tn?1377771734
Differential diagnosis of polyarticular joint pain (pain in more than four joints):

Viral infection: human parvovirus (especially B19), enterovirus, adenovirus, Epstein-Barr, coxsackievirus (A9, B2, B3, B4, B6), cytomegalovirus, rubella, mumps, hepatitis B, varicella-zoster virus (human herpes virus 3),
human immunodeficiency virus

Indirect bacterial infection (reactive arthritis): Neisseria gonorrhoeae (gonorrhea), bacterial endocarditis, Campylobacter species, Chlamydia species, Salmonella species, Shigella species, Yersinia species, Tropheryma whippelii (Whipple’s disease), group A streptococci (rheumatic fever)

Direct bacterial infection: N. gonorrhoeae, Staphylococcus aureus, gram-negative bacilli, bacterial endocarditis

Other infections: Borrelia burgdorferi (Lyme disease), Mycobacterium tuberculosis (tuberculosis), fungi

Crystal-induced synovitis: gout, pseudogout (calcium pyrophosphate deposition disease), hydroxyapatite

Systemic rheumatic disease: rheumatoid arthritis, systemic lupus erythematosus, polymyositis/dermatomyositis, juvenile rheumatoid arthritis, scleroderma, Sjögren’s syndrome, Behçet’s syndrome, polymyalgia rheumatica

Systemic vasculitis disease: Schönlein-Henoch purpura, hypersensitivity vasculitis, polyarteritis nodosa, Wegener's granulomatosis, giant cell arteritis

Spondyloarthropathies: ankylosing spondylitis, psoriatic arthritis, inflammatory bowel disease, reactive arthritis (Reiter’s syndrome)

Endocrine disorders: hyperparathyroidism, hyperthyroidism, hypothyroidism

Malignancy: metastatic cancer, multiple myeloma

Others: osteoarthritis, hypermobility syndromes, sarcoidosis, fibromyalgia, osteomalacia, Sweet’s syndrome, serum sickness
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