Discussions By Condition: I cannot get a diagnosis.

Lyme Question?

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: jessyleigh9797
  • June 1, 2007
  • 11:10 PM

So, I've been going through the doctor run around for quite awhile now, and just had a very interesting conversation with my mother today.

Let me start with my medical issues.

Migraines that cause loss of conscienceness (similar to atopic seizure, with no spikes on EEG). These have left me with some weird almost stroke like aftermath issues, (drooping eye, some facial numbness, shaking on the right side, slight weakness on the right side)
Also Chronic Daily Headache (CDH) with a level 5-8 pain daily.
Unexplained arthritis (In knees and wrists) that began around age 24 (I'm almost 28).
General joint aches and pains, backaches and fatigue often.
Microscopic hemmaturria (sp?) in urine since age 10 (explained originally by post strepoccoccal acute glomerolnephrits, however still remains persistant)
Kidney "aches" for about 5years, that doctors insist "You just don't get, that's not normal" I'm here to tell you, I got it!!! So I always get treated for a kidney infection, even if there is no sign of infection. Although a few of those time my creatin level was "off". (I've recently ordered my charts, so soon I'll know what "off means".)

The interesting conversation with my mother was........ "have you ever told any of these doctors that you tested positive for Lyme disease when you were 5?"

I totally forgot about that, I'm sure I knew at some point in my childhood, but I doubt I knew what that meant. When I was 2 we lived in the Ozark mountains and appartantly both her and I had relapsing tick fever. The tested both of us for Lyme, and I tested +. My titers were extremely high, however, being that I didn't show any symtoms, they didn't treat me. So my question is..... does it go away? Are the symtoms I experience now symtoms of lyme? I don't even have a GP, all I have is a Neuro, because I don't have insurance, and he isn't real excited about seeing me to begin with, I think because he can't seem to get these freakin' headaches under control.

I'll try to see if I can get one of the free clinics out here to run the test, but I'm not too hopeful.... what type of doctor do you normally see for this?

Thank you in advance!

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6 Replies:

  • have you seen a neurologist?have you seen a rheumatologist?Positive for Lyme is one considerationAutoimmune issuesMigraines, neurological symptomsIt does not just go awaytiters were high, you were not treatedArthritic painJess, if you don't have insurance, start looking for information on how to treat your symptoms. Many are saying they are getting better with herbal remedies and homeopathic/naturopathic waysI tend to believe them. A friend of mine was recently diagnosed and was positive for Lyme as well. She has improved greatly with homepathics. She states refined sugar is best left alone. Her symptoms are not as severe when she avoids it
    Anonymous 42,789 Replies Flag this Response
  • Possibly an infectious disease specialist? Contact the CDC. Lyme is not something to jack around with.
    rad-skw 1,605 Replies Flag this Response
  • No offense, but I wouldn't contact the CDC. You need to get yourself to a Lyme doctor. (lyme literate MD - LLMD). I have been dealing with chronic undiagnosed BS for the last 10+ years, and it was not until March that I even thought it could be Lyme. After some research and finding out that the basic ELISA/titer test most doctors give is almost worthless, I did a search online for a LLMD near me- the closest is 3 hrs away, in another state. He ran the basic tests, and those came back negative. However, he ran another blood test and had it sent to the IGeneX lab in Palo Alto, CA, and it came back positive. It turns out (thank goodness) that I'm also positive according to the CDC standards. IGeneX is a lab that specializes in tick-bourne illnesses, so they have more sensitive tests. They even test your urine, which no other lab does, as far as I know. So you need to find a doctor knowledgable in Lyme, as he or she will know the proper way to have you tested. If you turn out to be IgG positive, it most likely means you have had this in your system for years. Of course some people with Lyme never get a IgG + result.. only IgM +, (which can typically suggest more recent infection).. this could still mean you've had it for quite some time, as IgM can mean a "persistent" infection.
    sylvie 31 Replies Flag this Response
  • Sylvie is hitting the nail on the head. Find a LLMD. Access www.lymenet.org and you may be able to find a close one. Some alt docs also are Lyme specialists.
    Anonymous 42,789 Replies Flag this Response
  • So, I've been going through the doctor run around for quite awhile now, and just had a very interesting conversation with my mother today. Let me start with my medical issues. Migraines that cause loss of conscienceness (similar to atopic seizure, with no spikes on EEG). These have left me with some weird almost stroke like aftermath issues, (drooping eye, some facial numbness, shaking on the right side, slight weakness on the right side)Also Chronic Daily Headache (CDH) with a level 5-8 pain daily.Unexplained arthritis (In knees and wrists) that began around age 24 (I'm almost 28).General joint aches and pains, backaches and fatigue often.Microscopic hemmaturria (sp?) in urine since age 10 (explained originally by post strepoccoccal acute glomerolnephrits, however still remains persistant)Kidney "aches" for about 5years, that doctors insist "You just don't get, that's not normal" I'm here to tell you, I got it!!! So I always get treated for a kidney infection, even if there is no sign of infection. Although a few of those time my creatin level was "off". (I've recently ordered my charts, so soon I'll know what "off means".) The interesting conversation with my mother was........ "have you ever told any of these doctors that you tested positive for Lyme disease when you were 5?" I totally forgot about that, I'm sure I knew at some point in my childhood, but I doubt I knew what that meant. When I was 2 we lived in the Ozark mountains and appartantly both her and I had relapsing tick fever. The tested both of us for Lyme, and I tested +. My titers were extremely high, however, being that I didn't show any symtoms, they didn't treat me. So my question is..... does it go away? Are the symtoms I experience now symtoms of lyme? I don't even have a GP, all I have is a Neuro, because I don't have insurance, and he isn't real excited about seeing me to begin with, I think because he can't seem to get these freakin' headaches under control. I'll try to see if I can get one of the free clinics out here to run the test, but I'm not too hopeful.... what type of doctor do you normally see for this? Thank you in advance!your going to have a ***l of a time finding a doctor or ND to test you let alone treat you. The infectious disease societies guidelines all but dismiss chronic lyme, and any docs treating you w/ antibiotics more than the standard or 28 days may lose thier liscences. Go to the ilads.org or lyme.org websites for a start. Don't give up looking for help, it may be very hard to find but the lyme disease foundation may be able to point you towards help. I have had lyme for many years. The tests are really just to confirm a clinical diagnosis so go do the research as tests with no money will just drain your cash, very expensive and extremely non difinitiveI wish you luck
    Anonymous 42,789 Replies Flag this Response
  • Many people test positive for Lyme, Lupus, EBV and HH6 who suffer from Chronic Fatigue SyndromeSee if your symptoms fitgoogle symptom checkersenter symptoms and goread thread by Eatafruit78...CFS/ME/Autoimmunethere is good advice listed there on how to make yourself well again
    Anonymous 42,789 Replies Flag this Response
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