Discussions By Condition: I cannot get a diagnosis.

strange symptoms, no diagnosis after 18 months

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: myestrella42077
  • April 22, 2007
  • 08:44 PM

I am a 29 year old female who prior to March 2006 was completely healthy. I first had a suspect tick bite. I developed a rash at the site. There was no pain or itching. It was only a hard plaque. Within 2 days I went to the dermatologist. It was biopsied and came back unknown. He tested me for Lymes disease and it was negative. Since then I have read that Lymes wouldn't show up in the blood stream that quick. I have not been tested for it since then. Now every day I have something new. I first lost 25 pounds in 2 months, but have gained it all back. I began seeing floaters, having blurred vision, and eventually double vision. I was diagnosed with orthostatic hypotension after passing out multiple times and finally had a positive tilt test. I was put on Florinef with no results except higher blood pressure. I am constantly dizzy and sometimes things are moving, but they really aren't. I can barely drive. I am losing feeling in my hands and feet. My short-term memory is horrific. My head feels unlike anything I've ever known. It's like I have a permanent hangover. I have seen 3 internists, a dermatologist, a rheumatologist, and a neurologist. This week I finally have an appt. at Duke Hospital in NC. However, I expect the same results as before. Most doctors have tried to refer me to a psychiatrist because they think I'm depressed. Well, I'd say. I would like them to walk in my shoes for only one hour and see how good they feel about life because what I am doing right now does not constitute living. I have 2 small children that I can barely care for. I'm too exhausted. I'm in school also. I used to be a 4.0 student. Now I can barely maintain a C average. Please help.

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13 Replies:

  • Most doctors have tried to refer me to a psychiatrist because they think I'm depressed. Well, I'd say. I would like them to walk in my shoes for only one hour and see how good they feel about life because what I am doing right now does not constitute living Don't you just love docs who say stupid idiotic things like this:confused: . I am sorry for all you are going through, but this is NOT depression! You mentioned Duke University Hospital - they are one of a growing number of institutions that are incorporating alternative (CAM) medicine into their medical school. Please look into this - they may have a program, or perhaps an acupuncture school, where you can get reduced rate treatments. I really think an alternative approach may be very helpful, in addition to the western testing you are getting. Is there someway you can research this or ask them when you visit? Chinese medicine takes a very holistic approach to illness. It helps get your body back in balance. You sound very depleted, and I still think it likely you have undiagnosed lymes. Make sure they test you again for this, and use the BOWEN test. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • You're having all of these symptoms and NONE of the doctors have thought to re-test for you for lymes disease? Even when you tell them this began with a tick bite and a rash? Based on what you posted, I'm shocked you weren't put on antibiotics from day 1 at the dermatologist. The rash- what do you mean it came back unknown? As in the pathologist couldn't identify the sample or that it looked perfectly normal and was thus caused by an unknown problem? If the lab couldn't ID the cells then I'd seriously consider asking for them and bringing them to another lab. Of course a test taken 2 days after the rash appeared won't show anything- the localized rash is a reaction to the bacteria not an indication that the entire body has already been "tainted". Though scientifically a bit off, it's the same general idea why normal testing for HIV immediately after a suspected infection won't usually show anything. You definately should have asked to be retested 2 weeks- 2 months later. If at all possible get a blood test for lyme disease TODAY and hopefully you'll have the results before the appointment at Dukes. What you describe sounds like a classic infection.
    Anonymous 42789 Replies Flag this Response
  • Thank you for replying so fast. That is correct. I started seeing the latest internist in January 07 and I explained to him all of my symptoms including the tick bite and rash and the first thing he asked me was,"are you under a great deal of stress?" I don't see how these two correlate but anyhow he scheduled me back for June. I couldn't believe it. As for the rash, it only came back unknown etiology. I actually called the derm office last week to ask them about the rash and time of testing for Lymes and also told them everything I was going through. They told me to explain it to my family doctor seeing as the rash is gone. I'm really just tired of all of this. I will have to wait to get tested for lymes again until Duke but I will keep you posted on the outcome. The other proposal has been MS. That terrifies me. I guess I'll find out Tuesday.
    myestrella42077 2 Replies Flag this Response
  • I am 22 yrs old from about 19-21 i was constantly depressed, i've always had a problem with it but not like this, strnage thoughts etc. my body always hurt i had no motivation and about 3 doctors had told me you had lymes but its not active and i dont want to treat it! and im like well i feel like ****, all i want to do is sleep my body is killing me i'm always naseuous i'm 21 yrs old and i feel like im 80!. But still nnone wanted to help me. So i went to this accupuncturist he did all these crazy things and said yea you def have lymes. he put me on this stuff called borrellia once a week sublingualy. and this stuff called samento. 15 drops twice a day in a lil water and take on an empty stomach. i serisouly feel like a new person. i only take them once a day but even that has changed me dramatically! check it out. it really helps!
    Anonymous 42789 Replies Flag this Response
  • Where do you live BTW? If it's not in a location where lyme disease is endemic then doctors probably don't know what to look for (the rash) or else don't want to accept the possibility that you might have it. As for the bit about stress, that's usually the first thing out of their mouth when a patient comes in and has a specific diagnosis already in mind- they must have an anxiety disorder. It's insulting.
    Anonymous 42789 Replies Flag this Response
  • I am a 29 year old female who prior to March 2006 was completely healthy. I first had a suspect tick bite. I developed a rash at the site. There was no pain or itching. It was only a hard plaque. Within 2 days I went to the dermatologist. It was biopsied and came back unknown. He tested me for Lymes disease and it was negative. Since then I have read that Lymes wouldn't show up in the blood stream that quick. I have not been tested for it since then. Now every day I have something new. I first lost 25 pounds in 2 months, but have gained it all back. I began seeing floaters, having blurred vision, and eventually double vision. I was diagnosed with orthostatic hypotension after passing out multiple times and finally had a positive tilt test. I was put on Florinef with no results except higher blood pressure. I am constantly dizzy and sometimes things are moving, but they really aren't. I can barely drive. I am losing feeling in my hands and feet. My short-term memory is horrific. My head feels unlike anything I've ever known. It's like I have a permanent hangover. I have seen 3 internists, a dermatologist, a rheumatologist, and a neurologist. This week I finally have an appt. at Duke Hospital in NC. However, I expect the same results as before. Most doctors have tried to refer me to a psychiatrist because they think I'm depressed. Well, I'd say. I would like them to walk in my shoes for only one hour and see how good they feel about life because what I am doing right now does not constitute living. I have 2 small children that I can barely care for. I'm too exhausted. I'm in school also. I used to be a 4.0 student. Now I can barely maintain a C average. Please help.oh boy do as the doctors say
    Anonymous 42789 Replies Flag this Response
  • check this out www.ahummingbirdsguide.com see how many sx you have...good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • At the time of my tick bite I was living in Wilmington, NC, which I know is not a prominent place to have Lymes according to every physician I've seen. My appt at Duke was moved to May 3rd. Only 6 days away. I'm excited but also fearing it will end up just like all the other doctor visits I have had. As for the hummingbird website. That is very interesting information. Throughout all of this I have been told I have the Epstein Barr Virus, Cytomegalovirus, hypoglycemia, tricuspid regurgitation, an unbelievable amount of bigeminy unifocal PVCs, neurocardiogenic syncope, orthostatic hypotension, and more. With the orthostatic hypotension I thought that meant your blood pressure bottoms out when standing from a lying or sitting position. That's funny because I pass out while lying and sitting also. Not to mention now I am getting several UTIs back to back and kidney infections. Obviously something is up. It's very tiring. I will look more into that. Thank you.
    myestrella42077 2 Replies Flag this Response
  • There are only a couple of labs that test correctly for Bourrellia/Lyme. The best is Igenix, Palo Alto, California. We have kits for those tests here in my Santa Cruz clinic. You can reach us at 831 685 1125. All of your symptoms are lyme-like, and are not in your mind. You have some form of infection, for sure, unless you have a brain tumor or the results of a head trauma, but these are unlikely.dr dan beilin (www.fortifyhealth.com)I am a 29 year old female who prior to March 2006 was completely healthy. I first had a suspect tick bite. I developed a rash at the site. There was no pain or itching. It was only a hard plaque. Within 2 days I went to the dermatologist. It was biopsied and came back unknown. He tested me for Lymes disease and it was negative. Since then I have read that Lymes wouldn't show up in the blood stream that quick. I have not been tested for it since then. Now every day I have something new. I first lost 25 pounds in 2 months, but have gained it all back. I began seeing floaters, having blurred vision, and eventually double vision. I was diagnosed with orthostatic hypotension after passing out multiple times and finally had a positive tilt test. I was put on Florinef with no results except higher blood pressure. I am constantly dizzy and sometimes things are moving, but they really aren't. I can barely drive. I am losing feeling in my hands and feet. My short-term memory is horrific. My head feels unlike anything I've ever known. It's like I have a permanent hangover. I have seen 3 internists, a dermatologist, a rheumatologist, and a neurologist. This week I finally have an appt. at Duke Hospital in NC. However, I expect the same results as before. Most doctors have tried to refer me to a psychiatrist because they think I'm depressed. Well, I'd say. I would like them to walk in my shoes for only one hour and see how good they feel about life because what I am doing right now does not constitute living. I have 2 small children that I can barely care for. I'm too exhausted. I'm in school also. I used to be a 4.0 student. Now I can barely maintain a C average. Please help.
    drbeilin 8 Replies Flag this Response
  • Thank you for replying so fast. That is correct. I started seeing the latest internist in January 07 and I explained to him all of my symptoms including the tick bite and rash and the first thing he asked me was,"are you under a great deal of stress?" I don't see how these two correlate but anyhow he scheduled me back for June. I couldn't believe it. As for the rash, it only came back unknown etiology. I actually called the derm office last week to ask them about the rash and time of testing for Lymes and also told them everything I was going through. They told me to explain it to my family doctor seeing as the rash is gone. I'm really just tired of all of this. I will have to wait to get tested for lymes again until Duke but I will keep you posted on the outcome. The other proposal has been MS. That terrifies me. I guess I'll find out Tuesday.Please have your self retested for Lyme; u can get more info by just going to Google and searching for all of the symptoms for Lyme; Doxycycline is given for it's treatment. An Infectious D's specialist would be best to go to. hope this helps.
    Anonymous 42789 Replies Flag this Response
  • I'm crying as I type this to you. I've been sick for 4 years. I just found this info a few days ago. I decided to look around the site to see how many other people are having ME sx...you would not believe. Almost every thread had people listing these sx and no one can get a correct diagnosis or one at all. When I set out doing this, I thought if I could just help one person then my illness is there for a reason. Best of luck and please let me know how things turn out...mommy cat
    mommy cat 1654 Replies Flag this Response
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  • Please have your self retested for Lyme; u can get more info by just going to Google and searching for all of the symptoms for Lyme; Doxycycline is given for it's treatment. An Infectious D's specialist would be best to go to. hope this helps.I only saw this today -please let us know what happened. I am POSITIVE you have Lyme disease. My daughter got the same and other really horrible symptoms (temporary blindness for one) - the elisa test (the one most doctors use) will come back negative 45% of the time, because the lyme spirochete does not throw out antibodies into the blood very often. Go to ILADS (google it) - it is the Lyme disease association. Get a physician from their website - only they can truly treat you. Do not go to an infectious disease guy unless he is a member of ILADS. Many of the infectious disease society doctors have conflict of interest issues with insurance companies and will not treat you long term - they will try to give you 1-2 months worth of antibiotics, which is way not enough for Lyme that has become chronic, like yours. The insurance companies do not like to pay for the long term therapy, but will if the doctor writes it up correctly. My daughter saw 11 physicians before she was diagnosed properly as having Lyme. She was told she was a hysteric and crazy. The only test laboratory that does correct testing for Lyme is in California - they use an enhanced Western Blot, and all the Lyme literate doctors use this lab. The lab' s name is IGenex - google it. Only intravenous doxycycline or stronger antibiotic will help you - then oral for many months. You must take probiotics (available at any health food store) to counter the negative effects of antibiotics. The probiotics will enhance the effectiveness of antibiotics and prevent them from wrecking your intestines. My daughter is now off antibiotics (after 3 years) and is much better. She uses cat's claw (from Nutricology - use the purified one) drops and teasel root drops to maintain her undeterminate - negative profile now. These wonderful herbs were given to her by a great lyme savvy doctor and they work - they kill the lyme spirochete like antibiotics do. God bless you and let us know what is going on with you and anyone else who has symptoms.
    Anonymous 42789 Replies Flag this Response
  • Absolutely get TREATED for Lyme. Have a doctor put you on 3 months of Doxy immediately. You are not crazy!Good luck!
    Anonymous 42789 Replies Flag this Response
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