Does anyone else NOT REMEMBER when/how they got CFS? Help me plz

Discussion in 'Fibromyalgia Main Forum' started by rochar12, May 23, 2008.

  1. rochar12

    rochar12 New Member

    I am trying to piece together exactly what happened to me, if it was viral or acute onset or gradual, and what triggered it, but I do not even remember. This is mostly due to the fact that my cognitive symptoms are my worst symptoms [aside from fatigue] and I have forgotten almost my entire life's events.

    Lits bits and pieces of my memory of what happened are still there.

    Keep in my mind I was about 19 years old (6-7 years ago) when this happened. I remember parking near my girlfriend's dorm and not having the energy to walk to her place. Fuzzy memory. I remember a lot of random incidents around the end of 2001 where I just kind of collapse [or get reaaally dizzy and tired] trying to get to class. It's all so vague though I can't really piece it together. I know I dropped out of college that semester, but the thought process or exact events are totally out of mind [I know this type of amnesia is hard to believe, but I tell the truth].

    Then my memory has a few working bits of at being at random doctors and hearing I have hypotension when standing up. I remember them giving a bunch of drugs to raise my blood pressure. I don't remember how I found these doctors or any of the months preceding it. I do remember the doctor who said I have chronic fatigue syndrome, and researching it online and having a panic attack when I found out there was no cure.

    Somewhere in the middle of this I also had severe tonsillitis and needed surgery to remove my tonsils because it was obstructing my breathing. I'm not sure how it all fits in. The whole period is such a blur, it almost feels like I had some type of post trauma induced amnesia of it all.

    Don't most people have some type of acute flu that they never recover from that they always remember? I have no such thing. I found an email I wrote to my girlfriend at around the exact time I think this began, and I make a joke about how maybe I have anthrax [was in the news at the time], because I have a 'very strange' flu and 'weird head sensations', but apparently it couldn't have been that bad, because weeks later I have an email about going to a concert. I also don't and it couldn't have been such a bad flu because I'm pretty sure I never went to a doctor for it].

    What kind of complicates thing is, the year before all of this my mental abilities declined INCREDIBLY in terms of performance in school and I remember being in shock over how I was suddenly so stupid [my energy might have been less too, but when you're 18, you don't really think about it much if you're still doing things, its hard to quantify]. I also had some strange heart pains and sensations at the end of my senior year of highschool I could never understand [but chose to ignore]. I stopped smoking marijuana because it would cramp up my heart and made me go nearly blind [the year before the profound fatigue]. Also I lived in a neighboorhood in the woods filled with deer, in which everyone got lyme disease [and I was bitten a few times]. I test negative for lyme though [except for one positive from igenex, which I suspect is a fraud lab that gives everyone positives].

    I spoke to some friends about it, and they said around the end of 2001 I began to complain I could never get out of bed, and suddenly they never saw me out anymore [don't remember these conversations]. Is it connected to the severe tonsillitis I had at the end of 2001 that required surgery, or the strange flu I wrote about in the email I don't even remember having?

    Does anyone else have a story similar to this? Or any ideas about what happened to me and what is going on now some 6 years later? There was never a period where I was totally bed ridden, whereas it just seems I got into a REALLY low energy state and have remained there. The cognitive symptoms seem to get worse and worse by the year, the low energy seems static.

    I also have some rather unusual cardiac findings for someone my age, including left ventricle hypertrophy that appears and disseapears on echos.

    [This Message was Edited on 05/23/2008]
  2. rochar12

    rochar12 New Member

    btw, sorry for such a long post, just kind of needed to wrie it all down
  3. dragon06

    dragon06 New Member

    I have exhibited symptoms almost all of my life. My mom said as early as 3 years old. The only event we could maybe pin it down to was me having mono when I was 3. But I really have to memory of it starting cause it was such an early age. I do remember being unhealthy my entire life though...I have never felt good!
  4. Waynesrhythm

    Waynesrhythm Member

    Hi Rochar12,

    I have a sister with CFS/FM who has lost chuncks of memory from this illness. Though I haven't had the same experience, I do experience serious cognitive difficulties.

    I would suggest doing some research on this board regarding Lyme and the significance of the Igenix test. My understanding is that it is the most accurate and reliable Lyme test available. You may want to consider that this may be an underlying problem for you.

    Wishing you the best as you go forward.

    Regards, Wayne
  5. rochar12

    rochar12 New Member

    I'm really skeptical of Igenex: it seems like everyone who uses them has lyme disease

    there's something shady going on there

    there was an article about it in the new york times

    [This Message was Edited on 05/24/2008]
  6. Kathleen12

    Kathleen12 New Member

    I also have no memory of when exactly this dd started. I know that there were periods where I couldn't finish my shopping details, but those periods were brief and few. But followed no flue or anything that I remember.

    But then I had surgury and was never able to recover from it. The fatigue got worse and worse and the "remissions" were brief. So I think I had this a few years before the surgury and then the surgury just made it worse for some reason.

    I tend to agree with you on the igenex labs, though I have done no research on it at all. Just a gut feeling of mine. I may be wrong though.
  7. rochar12

    rochar12 New Member

    thats interesting regarding diagnosing lyme clinically

    based on the wikipedia page, i dont seem to have lyme symptoms

    i dont have ANY arthritis or joint pain: I have pretty classic CFS with terrible circulation problems, a variety of cardio issues, terrible cognitive issues, bad fatigue with all my symptoms a ton worse when i try to exercise [intolerance to exercise], autonomic problems, severe constipation and IBS, weird neurological issues

    the thing is, when people say these are lyme symptoms, they tend to say every symptom is a lyme symptom, so it is confusing

    but im open to the idea

  8. rochar12

    rochar12 New Member

    also, if I do have lyme, wouldnt it be post-lyme or chronic lyme since ive had this for so long: a doctor many years ago put me on antibiotics for 6 weeks just in case, and i didnt feel any better or worse, nothing changed

    and in that case, the empirical data tends to say antibiotics dont work for chronic lyme

    [This Message was Edited on 05/24/2008]
  9. rochar12

    rochar12 New Member

    i hear what you're saying, many people want it to be lyme, because fm/cfs is so ambiguous

    but like you, i might give lyme treatment a shot again, not because its too rational, but im so desperate, and desperate people need hope

    i tend to be evidence based though, so its hard for me to put myself through faith based treatments, but heck, i might do it anyways

    in terms of 'LLMDS', im skeptical of them too: there's a cult mentality around them and a lot of conspiracy theories about medicine: maybe im naive and the conspiracy theorists are right, but im a bit on guard about 'LLMDS': lot of them see to be opportunists to me

    ive seen some really top notch infectious disease specialists when i suspected possible lyme, and they tend to be very dismissive about the lyme thing and LLMDS: are they in part of some conspiracy or not doing enough research? its doubtful to me, but hey, who knows

    [This Message was Edited on 05/24/2008]
  10. Mikie

    Mikie Moderator

    There appear to be subsets of CFIDS/ME and not everyone has his or her illness triggered full blown in the same manner. In fact, no one knows which came first, the genetic abnormalities or the events which might have altered them. Such events include, trauma, stress, and illness. Many felt their illnesses gradually getting worse and some can pinpoint when they knew they were sick. Many of us feel we have had our illnesses all our lives and kept recovering from events until one specific event put us over the edge. For me, it was a mycoplasma infection which hit on Dec. 24, 1990; however, I can look back into childhood, knowing what I now know, and see early warning signs. It appears that everyone from my Mothers side, including her Mother, down to my own daughters, have some kind of illness which includes immune dysfunction, pain, and fatigue.

    Memory can improve as one heals and so can cognitive function. I find that I do better now than I used to but if I get run down, the cognitive problems come back.

    I know it can be scary not to be able to remember but those memories are probably not lost forever. One woman here who recovered was able to remember again.

    Hope this helps.

    Love, Mikie
  11. frango2

    frango2 New Member

    than a joint/rash disease. It was falsely classified in the beginning and unfortunately that definition has stuck.

    I saw the tick that bit me and had a rash, but not a bullseye ( again, misleading info about the bullseye rash ). Within three months,I was seriously neurologically disabled. My earliest symptoms where vision, balance, tremors, headaches, seizures etc. I have never had joint pain.

    Not everyone tests positive at Igenex. I know a lot of people who don't... some of my own family members included. In fact, my first test was indeterminate but I had several Lyme specific bands show up. Because I had seen the tick and we live in a highly endemic State, I knew my illness was most likely Lyme. My LLMD was an Infectious Disease Dr. I asked him to retest me after months of antibiotics and I tested glaringly positive because the antibiotics had helped my body to recognize the illness and mount an immune defense. You see, Lyme is very good at 'hiding' from the bodies immune defenses. Your body does not recognize that there is something there to fight, so it does not produce antibodies.

    My current Dr. specializes in CFIDS, Fibromyalgia and Lyme. She tests all her patients for Lyme and she told me that something like 80-90% test positive for Lyme specific bands.

    Lyme and the Lyme co-infections ( which are actually, I think the bigger problem for many people ) are not just transmitted by ticks and only 30% of people infected with these illnesses develop a rash.
  12. Leaknits

    Leaknits New Member

    There are years-long gaps in memory. I'll never know now whether those gaps are due to hideous childhood traumas or the d'd.
    Doesn't really matter, anyway.

    There's no cure for CFS/Fibro just as there is no cure for years of multi-faceted abuse and being told one is useless.

  13. landra

    landra New Member

    In your post you seemed to think that people got CFS following a flu that they never recovered from. Well that describes my crash, but I had been struggling with getting more and more sick, more and more times off work, stopping activities that seemed to lead to a "cold" for about 6 years.

    My early history includes Hepatitis B at 12, mono-like something for months in college, and life-long severe allergies.

    I don't know what made me start getting more and more sick. Could have been stress (both parents died within 6 months of each other), could have been Lyme - visited family in Colorado, I really don't know. But I am older than uyou and less likely to recover.

    The younger you are the more likely you will recover! Take good care of yourself, and bless those friends who can help you fill in the gaps. We all forget things when we do not feel well - and usually we do not need to remember it all - just recover so that we can function again.
  14. ladybugmandy

    ladybugmandy Member

    hello. i am sorry for all the suffering you have been through!

    i do not understand why people are suddenly saying that Igenex is fraudulent. i haven't been keeping up with Lyme news, but i know that i had a negative lyme test from that lab and that the lab is used by some of the best internists in the world.

    if you had a positive lyme test and know you were bitten by deer tick, you should really see a specialist. that could well be what all of the symptoms you experienced stemmed from, and the reason for your declining health.

    please take my advice and don't give up do know at least one infection that you have and that CAN be treated. perhaps you got mono after the lyme and that made things worse??

    i do hope you see a CFS/Lyme expert soon.

  15. i was bitten by a insect in my garden.

    it had bitten me the whole length of my spine.

    my doctor was extremely shocked when he saw the insects trail.

    take care,love fran
  16. hopeful4

    hopeful4 New Member

    I am sorry that you are experiencing such difficult health problems, and having such difficulty making headway towards diagnosis and treatment. It seems that many/most of us here have also had great difficulty in piecing it all together, and finding answers and doctors who can get to the bottom of it all, and actually help us. We understand.

    As individuals, we all have differences in our constellation of symptoms. However, in reading your post a number of things jump out for me:

    Worst symptoms:

    ** Cognitive symptoms (memory loss, extreme decline in mental abilities and school performance, had to drop out of college; "The cognitive symptoms seem to get worse and worse by the year")
    ** Fatigue ("around the end of 2001 I began to complain I could never get out of bed"; I got into a REALLY low energy state and have remained there)

    **DX of CFS
    **Tonsillitis (infection, surgery)
    **'very strange' flu and 'weird head sensations'
    **Heart symptoms: (strange heart pains and sensations; "unusual cardiac findings for someone my age")

    In addition to these symptoms, you have stated:

    "Also I lived in a neighboorhood in the woods filled with deer, in which everyone got lyme disease [and I was bitten a few times]. I test negative for lyme though [except for one positive from igenex, which I suspect is a fraud lab that gives everyone positives]."

    Hmmmm. Looks like, sounds like, gives evidence of chronic lyme disease. Think about it. You say yourself that you were BIT A FEW TIMES in a NEIGHBORHOOD FULL OF DEER. EVERYONE GOT LYME DISEASE. I repeat: EVERYONE GOT LYME DISEASE. Hmmmm.

    The test you were negative on was most likely the ELISA test, which is very unrealiable and for which most people test negative. The IGENEX Western Blot is not fraudulent, but the article which appeared in the NY Times was incorrect. The IGENEX test is considered very reliable.

    Lyme disease is a clinical diagnosis. That means that a lyme aware/literate doctor takes into consideration your symptoms, history, possible exposure, and lab results and makes a diagnosis based on all evidence. It is crucial to find a LLMD who follows the guidelines of ILADS for proper diagnosis and treatment.

    You must also be tested and treated for other tick-borne infections (such as babeosis, bartonella, ehrlichia), and other underlying infections and imbalances (mycoplasma, EBV, HHV, chlamydia pneumoniae, candidiasis, hormone imbalances, thyroid issues).

    My story is similar to your in that my worst symptoms have always been fatigue and cognitive problems. I was diagnosed with CFS/FM; I had heart symptoms. I tested negative on ELISA and positive on IGENEX.

    The difference between us is that I've been in treatment for lyme disease, and, although many times it has been very difficult to go through the treatment, I am improving.

    I wish you the best and hope you will reconsider what road to take.

    Well wishes,
  17. hopeful4

    hopeful4 New Member

    Subject: Igenex passes two inspections
    Date: Tue, 15 Nov 2005

    I am pleased to announce that IGeneX, Inc. recently passed two inspections on September 7 and 8, 2005, for its biannual recertification from the State of California.

    A federal inspector also arrived simultaneously, indicating she was present due to the NY Times article August 23 which had made allegations against IGeneX laboratories. The inspection was intense, with a focus on the Western Blots which had been cited in the NY Times article.

    The lab has been fully recertified, and the inspectors clearly saw the allegations were without merit. Despite a volume of letters to the Times after the article by patients, groups, and doctors in support of IGeneX, nothing was printed by the Times.

    IGenex thanks all the Lyme community for your support. Perhaps the Times will relent and print another piece on this issue.

    Nick Harris
    CEO, IGeneX Labs
    Palo Alto, California

  18. hopeful4

    hopeful4 New Member

    A variety of tests is available. Many doctors who are unfamiliar with Lyme disease may just use the Lyme test available in their local laboratory. In many cases this is the Lyme ELISA or IFA, often called "Titer Test.” These tests measure a patient's antibody, IgM and/or IgG, in response to exposure to the Lyme bacteria. By today's standards, these tests are not very sensitive. IGeneX, Inc. will only perform the ELISA test when Western Blots are ordered in conjunction.

    The Western Blot tests (IgG and/or IgM) are much more sensitive and specific than the above ELISA tests. With the Western blot, the laboratory can visualize the exact antibodies you are making to the Lyme bacteria. In some cases the laboratory may be able to say that your “picture of Lyme antibodies” is consistent with early disease or with persistent/ recurrent disease. Not all patients have antibodies at all times when tested. Antibodies are more commonly detected within the first year after infection, although re-infection may cause a significant rebirth of antibodies. At most, only 70% of patients have antibodies early, and the presence of antibodies alone does not make a disease diagnosis.
  19. hopeful4

    hopeful4 New Member

    This info is from the Columbia University Lyme Disease Research Program. I hope you will find it helpful in some way.

    Thinking Problems:

    May include problems in attention, memory, verbal fluency, thinking speed. Patients may report problems with concentration or the need to rely on lists or others because of new memory problems.

    Cognitive overload:

    Some patients experience normal environmental stimulation as being excessive, resulting in a cognitive "short-circuiting" such that the patient may start to feel confused, lose focus, stutter, or panic. It is as if the normal filtering mechanism of the brain has been rendered ineffective, leaving the patient vulnerable to a confusing array of numerous stimuli.

    Brain fog:

    Patients with Lyme disease often use this term to describe the lack of clarity in their cognitive processes. At times, this seems similar to "depersonalization or derealization" in which a person's sense of self and place are altered.

    Sensory Hyperacuities:

    some patients experience a heightened sensitivity to sound or to light, particularly in the early phases of neurologic Lyme Disease. In the more severe cases, patients need to wear sunglasses indoors or earplugs to diminish sensory stimulation.

    Problems with Speech & Fluency:

    stuttering, reversing words (e.g., stating "tomorrow" when one means "yesterday")

    Attention Problems:

    Easy distractibility; difficulty handling multiple tasks at the same time; trouble sustaining attention on tasks and completing tasks; trouble following the course of conversations or the text of a book.

    Memory Problems:

    Retrieval difficulties are common in which patients may have a hard time recalling what they know; patients may forget conversations or children may forget that they've done homework assignments. At other times, patients experience a problem with the "working memory": as if the material can't be kept on board long enough. Patients may find themselves keeping multiple lists, but then they lose track of where they put their lists.

    Slower Processing Speed:

    Patients may find it takes them longer to respond to questions or to complete tasks. Reaction time and thinking feel sluggish.

    Verbal Fluency problems:

    the ability to engage in normal conversations is impaired by the inability to retrieve the right word for the moment or the ability to "name" well-known people or objects. Patients may experience word substitutions or "paraphasias". A patient trying to refer to a "microwave" might, for example, say "radiator". Or, trying to refer to "" the patient might say, "AOL". Or, trying to refer to "fireworks", the patient might say "skylights". Patients may also experience an impairment in speech production, such that they stutter, particularly at times of sensory overload.

  20. Lichu3

    Lichu3 New Member

    but if you are in contact with your family, could they also help you piece together your history? Or perhaps they weren't around when you initially got sick?

    When I don't remember a detail clearly, I ask my parents as they were with me when I initially got sick. Interestingly, after I got sick and had to stop working, a couple co-workers confided to me that they thought I looked like I was unusually tired compared to my normal energetic self the last month I worked.