Discussions By Condition: I cannot get a diagnosis.

Lyme-like Symptoms for 8+ Years

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Horstus
  • December 4, 2008
  • 09:35 AM

I hope someone can help my situation. Any educated input would be violently appreciated by my heart; even my literal heart. I'm a male in my early 20's, and I'm a darn tough son-of-gun. My pes are like tank armor. I mean, I listen to Death Metal and I'm of Viking descent and my great-grandfather was a mountain man. Last year, I walked 10 miles in a sub-zero degree blizzard with 15 ft. of visibility.

Nevermind. Seriously, I have something terrible happening to me. I'm a high school dropout and I can't work. My quality of life has spiraled down to an extreme low for the last 8+ years. I feel sick and fatigued everyday. This is accompanied by severe headaches, nausea, brain-fog, and memory loss.

My body temperature has stayed at around 96.2 for the past few years. Despite this, I sweat an absurd amount. I'm not overweight and I'm, seemingly, in normal shape. My Thyroid, Adrenal, and testosterone tests came back normal. I've had multiple tests, including an MRI, which show no abnormalities. I've been treated with various mental medications and antibiotics.

Earlier this year, an LLMD agreed to treat me for Lyme disease. In fact, I began to feel a bit better. It didn't last. My memory is so poor, I can't remember most of my life. I can't think to do basic tasks and my anxiety has become significant. I can't handle my life anymore. All I do is sleep.

Why can no one give me a concrete diagnosis? I'm sick of playing lab-rat. I hope you can help. Everyday is worse than the day before. This is my list of symptoms:


Achiness
Fatigue/Malaise/Lethargy
Stiffness
Sweating
increased thirst
Headache
Neck pain, stiffness, or pressure
Numbness/Tingling
Weight loss/gain
Shortness of Breath
Backache, back pain
Hand Stiffness
Joint pain
Daytime Sleep
Sensory abnormalities
Loss of smell
Tremors/shaking
Anxiety
Depression
Concentration difficulties
Confusion
Memory impairment/word retrieval difficulties
Task performance difficulties
Verbal difficulties, impaired or slurred speech

Is it possible to have Wilson's Temperature Syndrome while having normal thyroid levels? I'm out of options.

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11 Replies:

  • Im sorry Im not really an expert so I cant help you too much.But if it helps any, just know that you are not the only person going through this. Ive also had many of your symptoms, and more, for a long time also. I just turned 18 years old (yeah I know...) and Ive been having it bad for the past 3 years, and have had many of my symptoms for up to 6 years now. Ive noticed I havent really been right most of my life. Just in the past year Ive realized that Im not right. Ive been to the doctors (2 different doctors, a heart doctor, and hospital) about 8 appointments in the last 1 1/2 years and have had almost evey test done I can (and they) think of. I even researched a lot of things myself and asked specifically for the tests. Nothing came up at all. I took different mental medications, anti-depressants/anti-anxiety, and felt no relief. Its a sad situation, I should be at the funnest time and prime of my life, but I feel like dying and never leave the house anymore. I can barely get up in the morning. I felt this exact way for the past year now. I havent had one moment of pure joy in the past 6 years. I dont remember what it feels like to live. Im running out of hope, some days I would honestly rather die then feel like this for another year. I wonder what happens after you die...I wonder.....
    HelpinOhio 32 Replies
    • December 5, 2008
    • 00:40 AM
    • 0
    Flag this Response
  • Horstus.. I get all your symptoms and more. The cause of many with these symptoms is chronic fatigue immunity dysfunction sydrome (CFIDS) also known as ME and CFS. http://wwcoco.com/cfids/bernesx.html . The symptoms you mention are the most classical in this illness and help to define the illness in the canadian diagnostic CFS criteria. Unfortunatly most doctors are not up to date on the info with this illness and due to this.. most are reluctant to diagnose it. The CDC says that only 80-90% of ones with CFS remain sick and undiagnosed. .............. "Canadian Clinical Working Case Definition of ME/CFSA patient with ME/CFS will meet the criteria for fatigue, post-exertionalmalaise and/or fatigue, sleep dysfunction, and pain; have two or moreneurological/cognitive manifestations and one or more symptomsfrom two of the categories of autonomic, neuroendocrine and immunemanifestations; and adhere to item 7. 1. Fatigue: The patient must have a significant degree of new onset,unexplained, persistent, or recurrent physical and mental fatiguethat substantially reduces activity level. 2. Post-Exertional Malaise and/or Fatigue: There is an inappropriateloss of physical and mental stamina, rapid muscular and cognitivefatigability, post exertional malaise and/or fatigue and/or pain anda tendency for other associated symptoms within the patient's clus-ter of symptoms to worsen. There is a pathologically slow recoveryperiod–usually 24 hours or longer. 3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity orrhythm disturbances such as reversed or chaotic diurnal sleep rhythms. 4. Pain:* There is a significant degree of myalgia. Pain can be experi-enced in the muscles and/or joints, and is often widespread and mi-gratory in nature. Often there are significant headaches of newtype, pattern or severity. 5. Neurological/Cognitive Manifestations: Two or more of the fol-lowing difficulties should be present: confusion, impairment ofconcentration and short-term memory consolidation, disorienta-tion, difficulty with information processing, categorizing and wordretrieval, and perceptual and sensory disturbances–e.g., spatial in-stability and disorientation and inability to focus vision. Ataxia,muscle weakness and fasciculations are common. There may beoverload1phenomena: cognitive, sensory–e.g., photophobia andhypersensitivity to noise–and/or emotional overload, which maylead to “crash”2periods and/or anxiety. 6. At Least One Symptom from Two of the Following Categories:a. Autonomic Manifestations: orthostatic intolerance–neurally me-diated hypotenstion (NMH), postural orthostatic tachycardiasyndrome (POTS), delayed postural hypotension; light-headed-ness; extreme pallor; nausea and irritable bowel syndrome; uri-nary frequency and bladder dysfunction; palpitations with orwithout cardiac arrhythmias; exertional dyspnea. b. Neuroendocrine Manifestations: loss of thermostatic stability–subnormal body temperature and marked diurnal fluctuation,sweating episodes, recurrent feelings of feverishness and coldextremities; intolerance of extremes of heat and cold; markedweight change–anorexia or abnormal appetite; loss of adaptabil-ity and worsening of symptoms with stress. c. Immune Manifestations: tender lymph nodes, recurrent sorethroat, recurrent flu-like symptoms, general malaise, new sensi-tivities to food, medications and/or chemicals. 7. The illness persists for at least six months. It usually has a distinctonset,** although it may be gradual. Preliminary diagnosis may bepossible earlier. Three months is appropriate for children.To be included, the symptoms must have begun or have been signifi-cantly altered after the onset of this illness. It is unlikely that a patientwill suffer from all symptoms in criteria 5 and 6. The disturbances tendto form symptom clusters that may fluctuate and change over time.Children often have numerous prominent symptoms but their order ofseverity tends to vary from day to day. *There is a small number of pa-tients who have no pain or sleep dysfunction, but no other diagnosis fitsexcept ME/CFS" I think you will find you meet this diagnoses.. the canadian CFS diagnoses criteria are in fact stricter than the American criteria for it............. the biggest online CFS site is www.immunesupport.com .. this has a ton of info about it there and posts all the latest studies on this disorder.
    taniaaust1 2267 Replies
    • December 5, 2008
    • 01:27 AM
    • 0
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  • "M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. A significant number of the world’s leading M.E. experts believe that M.E., like Polio, is caused by an enterovirus, and the evidence which exists to support this theory is compelling. (See: The outbreaks (and infectious nature) of M.E. for more information.) M.E. is a distinct, recognisable disease entity which contrary to popular belief is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease (within just a few weeks) – providing that the physician has some experience with the illness. Although there is (as yet) no single test which can be used to diagnose M.E. there are a series of tests which can confirm a suspected M.E. diagnosis. If all tests are normal, then a diagnosis of M.E. cannot be correct. (See Testing for Myalgic Encephalomyelitis for more information.)Individual symptoms of Myalgic Encephalomyelitis include: Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ) in M.E. "
    taniaaust1 2267 Replies
    • December 5, 2008
    • 01:37 AM
    • 0
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  • any heart palps or blood pressure problems? research POTS syndromegood luck
    pamelasmc 82 Replies
    • December 7, 2008
    • 02:45 AM
    • 0
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  • I would try seeing another LLMD. If you felt better with treatment it seems to be the case that you have Lyme and possible co-infections. If you haven't already joined, go to Lymenet.org and join the flash discussion and post in seeking a doctor. You should get info on a doctor in your area. Good luck. P.S. I am going through the same thing right now. Although only for a little over 2 years. I am off to see a LLMD next.
    barbyfirefly 9 Replies
    • December 8, 2008
    • 02:30 AM
    • 0
    Flag this Response
  • I would try seeing another LLMD. If you felt better with treatment it seems to be the case that you have Lyme and possible co-infections. If you haven't already joined, go to Lymenet.org and join the flash discussion and post in seeking a doctor. You should get info on a doctor in your area. Good luck. P.S. I am going through the same thing right now. Although only for a little over 2 years. I am off to see a LLMD next. The drugs used to treat lyme also work on other things too.. so just cause the poster felt better some after lyme treatment.. it doesnt necessary mean that lyme or one of the lyme co infections was the cause. Thou of cause that may be the case too. ........... with things like CFS/ME .. as it alters the immune symptom into TH2? dominance it makes one more suspectable to other things. CFS/ME people thou they dont have lyme (thou 10% of CFS cases are triggered off by lyme).. sometimes feel better some after antiviral/antibacterial/antifungal treatments, due to the treatments getting rid of the other things, which have taken advantage of the persons state of unwell health eg often coming in after the CFS. Hence the treatments seem to help.. but end up not curing the person. So this is still a possibility.
    taniaaust1 2267 Replies
    • December 8, 2008
    • 05:36 AM
    • 0
    Flag this Response
  • Here's the answer.It is a 99% chance that your symptoms are caused by one of two problems. Either you have a viral infection or an endocrin dysfunction. First approach it as a viral infection since you seemed to have some relief in the past when treating it as Lyme Disease. Many times Doxicycline is prescribed for 3 weeks to treat Lyme. Many people have success with this treatment, but not all people. Sometimes it takes a regime in which the doxicycline needs to be immedicately followed by another antibiotic and subsequently that antibiotic by another. I mean this is the equivalent of carpet bombing your body for 2 months but after what you've gone through you'll be more than happy to do it. The antibiotics will lay waste to your intestinal flora (you'll be pooping gravey). At the end of the treatment take some probiotics. You can usually find some really good stuff in a health food store. Its really just a yogurt slurry thats is overloaded with essential bacteria. You can also buy some acidolpholous capsules to help replace what you need. - If this doesn't work then look into endocrine problems. Personally from the little you said I got a feeling we're looking at Addisons Dicsease. The symptoms don't entirely line up but it can still fit the bill. Addisons is an under-active adrenal. Test for it and if its the case then you'll have to take corticosteriods for life. Really, thats no big deal.
    Anonymous 42789 Replies Flag this Response
  • Check out this link about alternative diagnosis for lyme disease:http://www.wrongdiagnosis.com/l/lyme_disease/misdiag.htm
    gr8tful 175 Replies Flag this Response
  • Horstus: You say you were treated for LYME Disease for a short while. You didn't say if you were tested for it? Your story shows you to be an outdoors-type person, certainly likely to have exposure to Lyme Disease. Because your symptoms have gone on so long, if it is Lyme Disease, more stringent testing is needed. Treating a long standing Lyme Disease often takes years, not only months of treatment. Different symptoms and effects need to be treated and the longer the disease has progressed then more there are of these secondary infections and afflictions. GOOD LUCK!
    jessix 6 Replies Flag this Response
  • I hope someone can help my situation. Any educated input would be violently appreciated by my heart; even my literal heart. I'm a male in my early 20's, and I'm a darn tough son-of-gun. My pes are like tank armor. I mean, I listen to Death Metal and I'm of Viking descent and my great-grandfather was a mountain man. Last year, I walked 10 miles in a sub-zero degree blizzard with 15 ft. of visibility.Nevermind. Seriously, I have something terrible happening to me. I'm a high school dropout and I can't work. My quality of life has spiraled down to an extreme low for the last 8+ years. I feel sick and fatigued everyday. This is accompanied by severe headaches, nausea, brain-fog, and memory loss. My body temperature has stayed at around 96.2 for the past few years. Despite this, I sweat an absurd amount. I'm not overweight and I'm, seemingly, in normal shape. My Thyroid, Adrenal, and testosterone tests came back normal. I've had multiple tests, including an MRI, which show no abnormalities. I've been treated with various mental medications and antibiotics. Earlier this year, an LLMD agreed to treat me for Lyme disease. In fact, I began to feel a bit better. It didn't last. My memory is so poor, I can't remember most of my life. I can't think to do basic tasks and my anxiety has become significant. I can't handle my life anymore. All I do is sleep.Why can no one give me a concrete diagnosis? I'm sick of playing lab-rat. I hope you can help. Everyday is worse than the day before. This is my list of symptoms:AchinessFatigue/Malaise/LethargyStiffnessSweatingincreased thirstHeadacheNeck pain, stiffness, or pressureNumbness/TinglingWeight loss/gainShortness of BreathBackache, back painHand StiffnessJoint painDaytime SleepSensory abnormalitiesLoss of smellTremors/shakingAnxietyDepressionConcentration difficultiesConfusionMemory impairment/word retrieval difficultiesTask performance difficultiesVerbal difficulties, impaired or slurred speechIs it possible to have Wilson's Temperature Syndrome while having normal thyroid levels? I'm out of options.have you been tested for std syphillis ect....
    Anonymous 42789 Replies
    • December 19, 2009
    • 11:37 AM
    • 0
    Flag this Response
  • You should see a homeopathic doctor, not to be confused with a herbalist
    Anonymous 42789 Replies
    • December 27, 2010
    • 03:29 PM
    • 0
    Flag this Response
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