Hi, I'm new here... [Crossposted from CFS/ME board]

Discussion in 'Lyme Disease Archives' started by Shooter, May 1, 2008.

  1. Shooter

    Shooter New Member


    I'm a 33 year old male with a wide range of chronic symptoms that would fall under the 'invisible illness' banner. I'm a bit lost among all of the competing theories and treatment protocols I've read about on this site and others. I'm hoping that some of you might share the wisdom you've learned on your journeys thus far...

    I want to be better equipped to manage my own medical care, but I'm largely clueless as to what tests to ask the docs to run. Lyme disease, for example, seems to be a common diagnosis, but the first two books I picked up said that it is essentially 'impossible' to accurately diagnose or treat Lyme disease. I'm not big on "Abandon Hope All Ye Who Enter"-type signs, so I'd really like to get a better idea of what I CAN do and what I CAN find out. Specific tests and protocols. I can understand controversy etc., but I'm open to any ideas about how to get better - especially ones that point to a hormonal or viral issue that can actually be detected and treated. Rest, 'graded exercise' and nutrition have only gotten me so far.

    I've had a string of doctors that either don't take me seriously, or simply say that my symptoms are too 'weird' or 'vague' to be helpful. I've had to ask (and sometimes beg) to have them run tests. Then, if they do find anything abnormal, they either shrug it off or else they fixate on it to the exclusion of all the other symptoms. I had to beg to get my doctor to test my Vitamin D and testosterone levels, for example, and then both turned out to be absurdly low. The doctor then gave me an 8 week course of Vitamin D supplements and now he thinks I'm cured. I'm having trouble finding a competent, thorough physician in the Chicago area. I have Aetna insurance and live in Illinois where there don't seem to be any LLMDs, which doesn't help.

    Any advice at all would be greatly appreciated.

    Thank you,



    My symptoms, if it helps:

    SLEEP: I have unrefreshing sleep. I do not have insomnia. In fact, I will sleep for 15-20 hours if left unattended. Even after sleeping 10 hours, I feel like I need a nap after being up a couple hours. I had a sleep study done and they diagnosed sleep apnea and low sleep efficiency, so I now wear a CPAP mask. There's been no improvement in my fatigue level after a year of wearing the mask. My sleep stages were also near normal during the sleep study, so it doesn't seem like I'm missing REM sleep (at least during the time of the study.) The word 'fatigue' always makes me think of muscle fatigue, which I vaguely remember from when I used to be able to exercise. I dunno, I'm just tired most of the time.

    Even more weirdly, I simply cannot control my sleep schedule. I always migrate back to a sleep schedule where I'm wide awake until 4 or 5am. I've been lectured about sleep hygiene etc. but I simply cannot maintain a normal sleep schedule...I'm only awake and alert at night. Whenever I try to switch my schedule around, it just makes my symptoms worsen for a few days.

    - Rapid onset weight gain. I gained 120 pounds in less than 7 months, with no changes in my diet or exercise habits. I've had my thyroid tested about 50 times, but they always say it's normal. I don't think they're running the right tests. I read about Leptin and some other things that can affect weight, but I've never had them tested.

    - Chronic aching pain in joints. A cold, pulsing, arthritic-type pain.

    - Chest pain (extreme tightness) and heart palpitations (rapid flutter, and the "Ohmygodmyheartjuststopped" ones.) I had a stress test and they said my heart was fine. These pains and palpitations are all episodic, occuring in clusters every few weeks. The doctors say they can't tell me what's going on unless I happen to have the issue while I'm in their office. Which, of course, never happens.

    - Intense, shooting pains that migrate all over body. (These pains are mostly episodic. I can go weeks without them, and then I'll have them frequently for a few days. The worst days of aching joints and shooting pain tend to cluster around each other, and are more frequent if I've tried shifting my sleep schedule around in order to attend an event or something.)

    - Mind fog. Trouble concentrating. Short-term memory issues. Aphasia.

    - Migraines.

    - Low Vitamin D and testosterone. I supplemented with Vitamin D for awhile (100,000 IU), but then the doctor gave up on testing my levels. I have no libido whatsoever, but I don't want to take testosterone because of the fertility issues.

    - Trouble regulating body temp. Night sweats. Shivering in morning. My hands and feet are usually like ice, and my hands get a mottled blue appearance (Raynaud's phenomenon.) My circulation has been tested and it is normal (?!)

    - Groin pain, only on left side. No prostatitis, UTIs, etc. Urine is clear of blood and bacteria.

    - Occasional light and noise sensitivity.

    - Dry skin and swelling gums. Digestive system issues.

    - Frequent colds and low-grade fevers. Sinus congestion.

    - Hand tremors off and on for about two months. Stopped on their own.

    - My left hand recently went completely numb (two plus weeks now.) I had xrays and there is no nerve impingement, etc. A chiropractor said I should get tested for MS, but my PCP shrugged it off. Hand is still numb and typing is not fun.

    - I had a brain scan checking for a pituitary tumor. They said my pituitary was fine, but I had "punctate areas of hyperintensive signal abnormality in my deep white/grey tissue." They never checked my spine. I also had a weird spot in the center of my brain, but the neurologist thinks it was an issue with the stain on the slide and is not actually there. Gee, that's comforting. Insurance will not pay to repeat scan because of doctor's note about 'possible slide stain artifact.'

    - Etc. Etc.
  2. mollystwin

    mollystwin New Member

    You definatly have quite a few lyme syptoms. We have a couple people on this board who also live in Illinois. They travel out of state to see an LLMD and are now recovering from lyme.

    I would definatly suggest finding an LLMD to help you figure out these syptoms. Many of us here went years without a proper diagnosis and can feel your pain.

    Illinois has a new lyme association who can also help. They have a message board on their forum at lymezone.

    Take care,

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