posted
I am a 22 year old female, and I really need someones help. I have been sick for about the past 4 years and have bene progressively getting worse in the past 10 months. My symptoms are as follows (I pulled the ones that applied from the symptoms list...it was easier then typing all of them) Please bare with me. I really need someones help.
Abnormal sensitivity to hot or cold Canker sores (frequent) Chills and/or shakes when hungry (may occur instead of feeling hungry) Cold hands and feet Extreme fatigue after minimal exertion Feeling hot or cold often Flu-like symptoms, on-going or recurrent Hair loss (alopecia) Increased susceptibility to infections Low-grade fevers Low body temperature (below 97.5) Lymph nodes painful, swollen (in neck; under arms) Night sweats (not related to menopause or fever) Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C) Sighing, frequent, not related to mental/emotional state Alcohol intolerance Aseptic meningitis "Brainfog"; inability to think clearly Fainting or blackouts; feeling like you might faint Headaches (frequent, severe, recurring) Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen) Libido (decreased) Light-headedness, feeling spaced-out Migraine headaches Muscle twitching Noise intolerance Paralysis or severe weakness of limb Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities Severe muscle weakness Tinnitus (ringing/noises in one or both ears) Tremors, trembling Difficulty expressing ideas in words Difficulty remembering names of people Difficulty following complicated written instructions Difficulty following simple oral (spoken) instructions Difficulty following complicated oral (spoken) instructions Difficulty integrating information (putting ideas together to form a complete picture or concept) Difficulty paying attention Difficulty following a conversation when background noise is present Difficulty understanding what you read Easily distracted during a task Impaired ability to concentrate Losing your train of thought in the middle of a sentence Losing track in the middle of a task (remembering what to do next) Slowed and/or slurred speech Stuttering; stammering Transposition (reversal) of numbers, words and/or letters when you speak and/or speak Word-finding difficulty Using the wrong word Bloating; intestinal gas Decreased appetite Esophageal reflux; heartburn Frequent constipation Frequent diarrhea Food/Substance intolerance IBS Nausea Stomach ache, cramps Vomiting Weight gain or loss Bite your cheeks or tongue frequently Dizziness or vertigo Loss of balance when standing with eyes closed Acuity changes not related to prescription changes Blind spots Blurred vision Drooping eyelid Optic neuritis or atrophy Red and/or tearing eyes Slowed accommodation (switching focus from far to near, near to far) Spots or floaters not related to migraines Bruxism (grinding/clenching teeth) Canker sores Dizziness when you turn your head or move Pain in ears, palate, gums Sinus infections Joint aches (arthralgia) Joint pain, without redness or swelling Morning stiffness Muscle aches (myalgia) Muscle pain, stiffness, weakness Stiff neck Abdominal pain Joint Pain Pain that migrates from joint to joint Shooting or stabbing pains Painful tender points (FMS: 11 out of 18 tender points) Abrupt/Unpredictable mood swings Appetite increase/decrease Depression or depressed mood Inability to enjoy previously enjoyed activities Irritability; over-reaction Panic attacks Personality changes (labile, irritable, anxious, confused, forgetful) Suicidal thoughts or suicide attempts Acute or abnormal reactions to medications Chemicals (alcohol, medications; lower tolerance for) Light sensitivity Blotchy or mottled skin Bruises may take longer to appear, and/or longer to fade Dry, itchy skin Fragile nails Vertical ridges or beads in nails Difficulty falling asleep Difficulty staying asleep (frequent and/or prolonged awakenings) Hypersomnia (excessive sleeping) Myclonus (restless leg syndrome; occasional jerking of entire body) Nightmares (frequent, extremely vivid and/or disturbing) Unrefreshing/Non-restorative sleep Decreased libido Frequent urination Interstitial cystitis Painful intercourse Painful urination or bladder Swollen testicles Other symptoms worsen before start of menstruation Changed voice Fatigue, prolonged, disabling, made worse by exertion or stress Fibrocystic breasts Hair loss (not related to age, hormones, diet, medication) Hands hurt excessively when put in cold water Handwriting changes, altering signature and/or other writing Hoarseness Sore throat Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel Symptoms change focus from time to time, like infection is moving through the body Weight changes (usually gain)
Also, I have lost 15lbs in the past 10 months,
been diagnosed with optic neuritis, found a scar on kidney during ultrasound, been diagnosed with ADD, been diagnosed with IBS, been diagnosed with fibromyalgia, been told I have a FUO (fever of unknown origin), can barely get out of bed in the morning, becoming hopeless and suicidal, and been told I having recurring UTI's and likely have neuropothy. I also walked into a deer tick nest when I was 6 and had to have hundreds of them washed off me. Few, if any, actually attatched themselves to me.
I am recently married and I am going down hill fast. Wecalled a specialist but they had a wait list for a year. I have been hospitalized 3 in the past 6 months due to severe dehydration, and once to remove a 6cm cyst on my ovary. I don't know what to do and for the first time I really just wish I would die. Please give me any advice you have. People (friends) have mentioned lyme adn celiacs and yet my internist won't do anything for me. Help.
[ 28. May 2008, 07:58 PM: Message edited by: sheep ]
Posts: 1 | From overland park, ks | Registered: May 2008
| IP: Logged |
bettyg
Unregistered
posted
sheep, welcome; so glad you found us!
you're going to get help galore ok!!
i'm sending you missouri's no. 1 llmd by private message; no drs. last names can be mentioned on public board!
pms can be found in my profile!! *********************************
please edit your post and break it up; instructions are below ... to help us neuro lymies out so WE CAN HELP YOU !!
*************************************
WELCOME, would you like a FREE copy of my newbie package of 120 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
IP: Logged |
emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
I sent you a private message.
Posts: 1223 | From U.S.A | Registered: Jul 2007
| IP: Logged |
posted
hey girl. I just turned 28 but your post sounds like my life history. it is the most awful feeling to know something is wrong and then thinking you are nuts when they cant find anything wrong with you.
just because lymes tests come back neg, does not mean you dont have it.
when i was 16, i was diagnosed with mono. still feeling tired a yr later, i was diagnosed with mono again. then at 18, they ran more tests and found out that i had lymes. they treated me with 30 days of meds. 6 months later, still feeling awful, they diagnosed me with Lupus. since then, i have been diagnosed with a million things, all "more frequently seen in people with lupus" including: IBS, Panic disorder, PCOS, PMDD, interstitial cystitis, polyps in my bladder, 37 kidney stones, endometriosis twice, ovarian cysts, manic depression, bipolar disorder, hypochondira, the list continues....
the whole time, i said "i bet i still have lymes disease!" but every test done came back normal.
about 3 weeks ago, i got really sick with bronchitis and was given meds to get better. three weeks later, i still had a fever. i went to the hospital and they did blood work....my lymes test came back positive. upon further tests, they suspect it has been lymes all along and that i never had lupus. i almost threw up and wanted to knock out every doc I have seen over the last 10 years.
based on my experience, I have a few words of advice:
1. hurting yourself will get you no where. if anything, it may make your situation worse because some docs will think that if you are crazy enough to hurt yourself, then you must be imagining your symptoms as well. its screwed up, but that is just what i have seen. so keep positive because even if it takes 100 years, you will get help eventually....hopfully sooner rather than later.
2. do a ton of research. find out the available tests for lymes and make your doc run them. worse case, they are negative and you have to start over, but at least you will know.
3. some docs treat lymes even with neg tests. may not hurt to find one of those.
4. i believe ciliac (or however you spell it) an be managed mostly with diet right? if so, try the diet. if it doesnt help, at least you can rule that disease out.
5. visit www.wrongdiagnosis.com. it may help give you ideas of other illnesses it could be if it isnt lymes.
6. the best docs are the ones who can take all of your symptoms and try and find one diagnosis instead of treating each one separately. specialists for your stomach or brain are only going to concentrate on those areas, not the whole picture.
please let me know how you are doing because I know how you feel to an extent that i can not even explain. and i have been going through tons of docs over the past 10 years....i know it isnt fun at all!
Posts: 8 | From new york | Registered: May 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
Printer-friendly view of this topic