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    Old 03-12-2007, 05:04 PM   #1
    tarapags1107
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    Please help me

    Hi everyone,
    I am new to this forum. My name is Tara and I am a 22 yr old girl who just graduated from college. I have had some issues for about 2 years as of April that no specialist has been able to diagnose. My symptoms are as follows:
    - butterfly rash (daily)
    - rashes over entire body when exposed to sunlight or heat
    - numbness and tingling in body with some muscle twitches
    - dry mottlely and slightly discolored skin
    - extreme fatigue
    - anemia and vitamin D definciency
    - hair brittleness
    - horrible gas
    - raynauds phenomenon
    - blepharitis
    - joint pain in knees
    - twitching all over my body
    - low grade fever
    - general malaise
    - severe shortness of breath
    - incontinence (urinary)
    - hives (uticaria) and random swelling of the lip (mainly alleviated with benedryl)
    - pulsing in my ear

    My PCPreferred me to a neurologist, endocrinologist, gastroenterologist, dermatologist, rheumotologist, allergist/immunologist and an infectious disease specialist. These doctors ran a battery of test and are befuddled with my results. The only test that came back positive were a "slightly" elevated ESR (sed rate), and my vitamin D deficiency and anemia. I am going to list the tests performed on me which supposedly, according to my rheumotologist, rule out any possibility of rheumatic disease such as SLE.
    These tests are as follows:
    BLOOD SERUM LEVELS:

    FANA: <1:40 (normal)
    Cardio IgG AB <10 (normal)
    Cardio IgM AB <10 (normal)
    Bun 13 (normal)
    Creatine .8 (normal)
    Estimated GFR > 60 (normal)
    Albumin 4.7 (normal)
    Calcium 9.2 (normal)
    Magnesium 2.0 (normal)
    Phosphorus 4.1 (normal)
    Alk. Phoshate 91 (normal)
    GOT 19 (normal)
    GPT 17 (normal)
    CPK 73 (normal) was elevated once after working out
    CRP <.5 (normal)
    WBC 6.9 (normal)
    ANC 4.3 (normal)
    RBC 4.78 (normal) * now that I am on ferrous sulfate for anemia
    HGB 14.0 (normal)
    HCT 41.8 (normal)
    MCV 87.4 (normal)
    MCH 29.2 (normal)
    MCHC 33.4 (normal)
    Platelet CT 305 (normal)
    RDW (16.3) (*HIGH*) * associated w/ anemia
    NEUT 62.9 (normal)
    Lymph 26.8 (normal)
    Mono 8.3 (normal)
    EOS .9 (normal)
    BASO 1.1 (normal)
    Sed Rate 24 (*HIGH*) was as high as 39 on previous labwork
    PES-TOT. PROT: 7.5 (normal)
    PES-Albumin: 3.9 (normal)
    PES-Alpha 1 .2 (normal)
    PES-Alpha 2 .8 (normal)
    PES-Beta 1.3 (normal)
    PES-Gamma 1.3 (normal)
    PES-Interp. normal pattern
    Thyroglob. AB <20.0 (normal)
    Thy. PEROX. AB <10 (normal)
    Tryptase 3(K) NG/ML (normal)
    Delta ALA,RU 2.1 (L) (normal)
    COPROPORPHYRIN: 72.9 (normal)
    PENTAPORPHYRIN 1.1 (normal)
    HEPTAPORPHYRIN 3.9 (normal)
    HEXAPORPHYRIN NOT DETECTED
    UROPORPHYRIN 18.4 (normal)
    TOTAL PORPHYRIN 96.3 (normal)
    HEP C (NEGATIVE)
    HIV 1&2 (NEGATIVE)
    Syphillis (NEGATIVE)
    VITD 25-OH 4 (D) NG/ML (*LOW*) but I live in NewEngland!
    BILT. Total .4 (normal)
    BILI,Direct: .2 (normal)
    T4 6.9 (normal)
    TSH .86 (normal)
    Sodium: 139 (normal)
    Potassium 3.9 (normal)
    Chloride: 103 (normal)
    CO2: 25 (normal)
    Glucose (rand): 25 (normal)
    Vitamin B12: 323 (normal)
    Folate: 12.0 (normal)
    Free T3: 304 (normal)
    Anti SSB (normal)
    Anti SSA (normal)
    Anti DNA (normal)
    C3 (normal)
    C4 (normal)
    CH50 (normal)
    IgA (normal)
    IgM (normal)
    IgG (normal)
    C1 enterase inhibitor (normal)
    Lyme Titer IgG and IgM (NEGATIVE)

    Urine Specimen:

    Color: yellow
    Appearance: Clear
    Spec Gravity: 1.030 (*HIGH*)
    Leukocytes: Neg
    Nitrite: Neg
    Protein: Neg
    PH: 5.5
    Blood: Neg
    Ketones: Neg
    Glucose: Neg
    Micro WBC 1-4 (normal)
    Micro RBC 1-4 (normal)
    Epith Cells 1+ LPF (*unsure what this means*)
    Bacteria: None LPF
    Renal Epith: None LPF
    Casts: None LPF
    Mucus 1+ LPF (*unsure what this means*)

    Stool Specimen:

    STOOL WBC: NEGATIVE
    C.Diff-stool: NEGATIVE


    I have a brain scan on myself to rule out Multiple Sclerosis. I have no evident signs (Ms plaques) on my current MRI done one month ago, no signs of white matter disease. I am puzzled by my results. My immunologist ordered some more, but I have not taken them yet. Please let me know what you guys think. Is it still possible to have some sort of autoimmune disease? My Pheumotologist says I have some sort of unspecified autoimmune complex. Please help me....
    Thanks.
    Tara

    Last edited by moderator2; 03-16-2007 at 10:43 AM.

     
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    Old 03-12-2007, 05:15 PM   #2
    tarapags1107
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    Re: Someone help me please...

    I also have recurrent mouth ulcers and severe photosensitivity

     
    Old 03-12-2007, 05:51 PM   #3
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    Re: Someone PLEASE HELP me......

    Hi Tara.

    Sorry to hear you are sick. It stinks to be so young and at such at a great stage in your life with the world at your feet ... and then to not have your health.

    I know there is a disease/condition where a butterfly rash is prominent. I'm sorry but I can't recall the name of it (my brain fog is bad today).

    I also had a long period of strange symptoms where one doctor after another could not find a cause.

    I finally found a Lyme Literate Medical Doctor (LLMD) and had my blood tested by Western Blot at Igenex labs in CA. My results came back positive for Lyme and I began treatment.

    I feel better than I did last year, so don't give up hope. There is help out there for you, and plenty of support here.

    Peace and health to you.

     
    Old 03-12-2007, 05:57 PM   #4
    tarapags1107
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    Re: Someone PLEASE HELP me......

    Thanks for the encouragement... I have looked up a LLMD in New York (3and 1/2) hours from my state!..... Were your original lyme titers (western blot) IgG and IgM negative... I've heard that it is indeed possible to have negative lyme titers and still have the disease.... Good luck to you as well.
    Tara

     
    Old 03-12-2007, 05:58 PM   #5
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    Re: Someone PLEASE HELP me......

    Hi!

    I'm sorry that you have been so ill and never finding out the cause. That is frustrating. I think it sounds like Lyme can be a possibility for you. Here are some of the symptoms of Chronic Lyme Disease:

    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
    Headache
    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
    Tremor
    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

    There are over 100 different symotoms of L.D., so the ones that I mentioned are only a few of the many symptoms. Lyme is a really complicated and misunderstood disease and most doctors don't know much about it (even, surprisingly, infectious disease doctors)! There are Lyme specialists called LLMs (Lyme Literate Medical Doctors). There are ver few in the country, so if you need help finding one, I'm sure someone on here can help to guide you in the right direction.

    There are 2 tests to check for L.D., the ELISA and the western blot. They, in my opinion, are completely useless because they are known to give false positive and negative results. LLMDs can treat Lyme without a positive test.

    I hope you feel better soon! Don't worry, you will find out what is wrong with you. Sometimes it just takes awhile, you know? Hang in there! Everything will work out. Keep us posted on how you're doing. I think you've come to the right place, there are so many nice people who can probably answer some of your questions and support you.

    ~Victoria

     
    Old 03-12-2007, 06:01 PM   #6
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    Re: Someone PLEASE HELP me......

    Quote:
    Originally Posted by 6Blues View Post
    Hi Tara.

    Sorry to hear you are sick. It stinks to be so young and at such at a great stage in your life with the world at your feet ... and then to not have your health.

    I know there is a disease/condition where a butterfly rash is prominent. I'm sorry but I can't recall the name of it (my brain fog is bad today).

    I also had a long period of strange symptoms where one doctor after another could not find a cause.

    I finally found a Lyme Literate Medical Doctor (LLMD) and had my blood tested by Western Blot at Igenex labs in CA. My results came back positive for Lyme and I began treatment.

    I feel better than I did last year, so don't give up hope. There is help out there for you, and plenty of support here.

    Peace and health to you.

    Hi, 6Blues! Lupus is the disease with the butterfly rash, but she tested negative for that, I believe, and saw a rheumatologist. *shrugs*

     
    Old 03-12-2007, 06:03 PM   #7
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    Re: Someone PLEASE HELP me......

    Victoria-
    Thank you for all your advice. I am going to see an LLMD, however, they do not accept any insurance agencies! I do not understand this very well, but I have to pay in full. I would like to see Dr. Raxlen who cured the girl on the mystery diagnosis show on discovery health. I will keep you posted when I find out some more info. Thanks again.
    Tara

     
    Old 03-12-2007, 06:05 PM   #8
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    Re: Someone PLEASE HELP me......

    Hi Tara, welcome to the board!

    I am sorry you have been so sick. One disease that can cause a butterfly rash and some of your symptoms is Lupus. Did you have an ANA test? I don't see it listed. Realize though that some people who have Lyme have a positive ANA.

    Below is a Lyme symptom list. You can have any combination of symptoms.

    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
    Headache
    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
    Tremor
    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

    No Lyme test is completely reliable, and results can vary by lab. It is my understanding the ELISA or titer is the least realiable and the one most doctors run first.

    When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

    Babesiosis can cause shortness of breath and anemia. Do you ever have night sweats and/or heart palpitations?

    If you would like a doctor recommendation, let us know.

    It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

    Do not give up, you will find out what is wrong.

     
    Old 03-12-2007, 06:07 PM   #9
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    Re: Someone PLEASE HELP me......

    Hi Tara. Many Lyme doctors do not take insurance because insurance companies often do not reimburse them. It is terrible.

    Some insurance companies will reimburse you for your expenses.

     
    Old 03-12-2007, 06:12 PM   #10
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    Re: Someone PLEASE HELP me......

    Quote:
    Originally Posted by tarapags1107 View Post
    Victoria-
    Thank you for all your advice. I am going to see an LLMD, however, they do not accept any insurance agencies! I do not understand this very well, but I have to pay in full. I would like to see Dr. Raxlen who cured the girl on the mystery diagnosis show on discovery health. I will keep you posted when I find out some more info. Thanks again.
    Tara
    You're very welcome! I'm glad to help! I watched that episode of Mystery Diagnosis. Dr. Raxlin seems like a really nice person and a great doctor. I think I remember that he said that he sent Jackie to another doctor or something and then I saw Dr. Leslie Fein's name in the credits for the show. She is a LLMD inNew Jersey. Either way, he seems like he could help you.

     
    Old 03-12-2007, 06:20 PM   #11
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    Re: Someone PLEASE HELP me......

    ticker-
    Thanks for the information. I did realize some of these issues with the false negatives/positive ELISAS. I do get chest pain, but not any palpatations. I have faith that my doctors will get to the bottom of it (someday), its just very discouraging to go through this. I am engaged to my fiance who is very supportive, but can only hear so much sometimes. He tries to keep me thinking positively, but my subconcious always reverts itself back into negative. I am trying to live day by day, but am constantly worried. It also doesn't help that I work in the medical field and know alot about certain illnesses! I believe God will figure this out sometime. Thanks again for all your support and a kind warming welcome to this forum.
    Tara

     
    Old 03-12-2007, 06:57 PM   #12
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    Re: Someone PLEASE HELP me......

    Hi Hun

    I'm so sorry you are having so much trouble getting a dignoses. Many people here go through the same thing. I just wanted to tell you that if you have a butterfly rash, it usually means it's Lupus. You may want to get further tested for that. ****** Lupus and see if the rash you have looks the same.

    Chantel

     
    Old 03-12-2007, 07:12 PM   #13
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    Re: Someone PLEASE HELP me......

    chatel-
    Thanks for the advise hun.... I've been tested for lupus and still test negative to this day. I have had the ANA, ANTI SSA, ANTI SSB, and ANTI DNA (double strand) test all come back negative. My rheumotologist is puzzled. She keeps retesting me but the only test slightly abnormal is my elevated ESR (sed rate) which is just an indication that "some kind" of inflammation is present in my body...
    Thanks Tara

     
    Old 03-13-2007, 01:24 AM   #14
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    Re: Someone help me please...

    Hmmm. Well your symtoms fit lupus and/or lyme disease, which I'm sure the docs thought of.

    Did they test you for Epstein-Barre?

    5% of lupus patients are ANA negative, according to literature, though I've never met anyone with lupus who was not positive. Mine was positive for two years while shuttled between an incompetent rheum and dermatalogist who said I did not have lupus, when I actually did and was ANA positive.

    Might want to go to a rheum that uses RDL - rheum diagnostics laboratory as their lab for bloodwork, my doc says the results are more reliable, plus the ANA can go positive to undetectable off and on I have heard. Also you could read my doc's book - The Lupus Book - by Daniel J. Wallace - it's sort of a lupus bible. It's sold on ******.

    Notable also is that you did not test positive for syphillis or HIV, both of which I've heard can show a false positive for lupus or other autoimmune disorders.

    Other than getting another lupus panel of bloodwork, you should also get a deep tissue biopsy, or a few from different lesions, that go all the way down to your blood vessel walls. For several years I got biopsies taken of surface lesions that tested negative for immunofluoresence and was finally properly diagnosed when my dermatologist took a huge, deep chunk out of my arm and studied it personally under the microscope, then had it confirmed by another derm at UCLA. Apparently the deep tissue cells look different and they can tell that way, even though there is no fluoresence.

    Glad to hear you don't have MS. Is it possible that you have drug-induced lupus? Might want to look into that.

    And in the meantime modulate your actions as though you have lupus - avoid sunlight, try not to overstress, wear sunscreen, cut down or out on alcohol, get enough sleep, drink water, try to take walks when you can.

    Hair: Kerastase and Terax both have good hair products for periods when my hair is brittle and breaks off, but it's not a cure. Feels softer and takes my stress level down to try and do something to avoid losing clumps of hair after washing. Also try combing wet hair out very slowly in small sections starting with the ends and holding the hair at the roots to avoid pulling on your roots. That helps. Also works is to skip combing it out and put some leave in conditioner on it and just lightly finger comb it and let it airdry. Never use a hairdryer or curling iron on it when it's brittle. Hair goes through 3-6 month cycles so remember that it is probably a temporary condition. There are some types of lupus where the hair loss leaves permanent bald spots, but your brittle hair complaint sounds more like mine - cyclical breakage. Sorry to go on and on - but when it first happened to me I was freaking out and no one could give me any advice or treatment for the hair loss. My rheum was not so concerned about it, but I felt like I was losing pieces of my identity. I wear a lot of cute winter ski caps and hats now - even year-round in Los Angeles. At least the trend is in.

    I hope you find some answers soon, at least the docs have thoroughly tested you. I wish you the best of luck.

    Jennifer
    __________________
    JJ
    (SLE Aug. 2003)

    Last edited by jjcali; 03-13-2007 at 01:25 AM.

     
    Old 03-13-2007, 03:21 AM   #15
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    Re: Help me please....

    Where was the test sent for Lyme? There are only a few labs that are reliable to test for Lyme Disease - IgeneX in Palo Alto California and Bowen Lab. If your blood wasn't sent to one of these labs I would do so and don't let the docs tell you it doesn't matter what lab you use. It does! I had many of the symptoms you are reporting. You might want to also check out the Lyme board here.

    All the best

     
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