The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Healthy 34yo Having Sudden Issues. Doctors Clueless.

Discussion in 'General ME/CFS Discussion' started by heat123, Oct 29, 2015.

  1. heat123

    heat123

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    I will try to keep this as brief as possible, but I've been battling a mysterious illness that doctors are clueless about and have recommended that I turn to Mayo Clinic. Before I do that, I would like to post my story to the community in hopes of some helpful ideas/tips.

    I am 34 year old Engineer with no previous health problems, surgeries, etc. About 14 months ago, I started experiencing many nerve related symptoms. No recent fevers, colds, insect bites, etc. Was not on any medications. With a ~1 week onset, my symptoms were (and are): extreme daytime tiredness/fatigue, vestibular issues (motion sensitivity), unrefreshed sleep, tingling/numbness in limbs, scalp, face, muscle spasms, muscles cramps (legs), difficulty walking (stiffness, spacticity, weakness), sleep issues / insomnia, near bouts of fainting, light sensitivity, tinnitus, cold intolerance (my body used to be naturally warmer), hands/arms/feet going numb, cold feet, physical symptoms of panic/anxiety without the emotional. Food sensitivities became another issues - I am now allergic to flax seeds, almonds (other nuts?), and have oral food allergies to things like apples, cucumbers, etc.

    Doctors initially thought MS, but that was ruled out by MRI and LP (Lumbar Puncture). I have seen multiple specialties mostly at Kaiser. I have seen about 7 neurologists that say this is not a "neurological disease". No best guess or theory other than SOMETHING is causing issues with my Nervous System. Doctors tried high dose prednisone but that had no positive effect, may have even made things worse. I am currently on CYMBALTA 40mg daily which IS helping with some of my fatigue issues, leg weakness/spacticity, and vestibular issues. I tried going down to 20mg a while back, and issues became worse. I am hesitant to increase the dose without first getting a root cause of my issues.

    I don't have any mental health issues and have been cleared by a psychicatrist. Some of my physical symptoms match anxiety/panic, but I don't have the emotional component.

    For my sleep issues, I have tried 2.5-5mg ambien and 0.5mg Ativan which helps some. Melatonin is hit or miss. Tried many other herbal / natural things as well without success.

    Tests Performed
    ------------------
    2 brain MRIs 1 year apart - Negative
    2 cervical spine MRIs- Negative
    Brain CT scan - Negative
    Inner ear CT - Negative
    2 Nerve Conduction Studies - Negative
    Chest X-Ray - Negative
    3 Lyme disease blood tests - Negative
    Spinal Tap (LP) - Negative
    Overnight sleep study - No remarkable findings
    Many,many blood[​IMG] tests over the past year all Negative.

    Has anyone else had any of these issues, or a subset? Whatever I have, Cymbalta seems to help but I don't just want a "band-aid" answer. I am looking for an actual diagnosis. I am located in San Diego and prefer to see a specialist in SOCAL. The most notable issues right now are daytime sleepiness / fatigue, insomnia, unrefreshed sleep, motion sensitivity, hands/feet go numb easily with slight pressure, sensitivity / allergy to certain foods.

    Even though some of my symptoms resemble Lyme and MS, both have been ruled out. Any information / follow-up questions are appreciated!
     
    *GG* likes this.
  2. msf

    msf Senior Member

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    Hi, your symptoms will sound familiar to many on here.

    This Lyme issue is very controversial, even on this forum, but many would say that you can´t rule Lyme out entirely on the basis of negative serology - the kind of tests you had is also important, do you know which ones you had? And which labs did them?
     
    Rlman likes this.
  3. digital dog

    digital dog Senior Member

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    Any fillings or tattoos?
    A lot of us just got ill and then found recovery difficult.
    I would be very careful with the drugs your doctors are putting you on and try and recover with other means.
    Sorry I can't be of any other help but sometimes drugs can cause a whole lot of other problems.
     
  4. caledonia

    caledonia

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    My suggestion would be to explore things like B12 deficiency and toxic metals such as mercury, lead, arsenic, etc.
    Instead of allopathic medicine, a functional medicine doctor or naturopath may be more helpful.

    Here are a couple of articles on B12:
    http://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences/
    http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency/

    Also note that the symptoms of folate deficiency are very similar to B12 deficiency.

    For toxic metals, see Andrew Cutler's book "Amalgam Illness: Diagnosis and Treatment", and check in with the Frequent Dose Chelation Yahoo Group. You might want to do the hair metals and elements test they recommend to check for metals. It's only $85. They can help with interpretation.

    This page has links to the best Lyme tests - the other ones are not reliable - which ones did you have?
    http://may12.org/treatment.aspx

    Also even if those are the root causes, it sounds like the thyroid and/or adrenals are being impacted as well as the gut, and they might need separate support.
     
    Mary likes this.
  5. Vic

    Vic

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    Was there a period before your onset where you were exercising hard? Any muscle strains or minor/major injuries?
     
  6. ahmo

    ahmo Senior Member

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    Mary and helen1 like this.
  7. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    It would be reasonable to check for dysautonomia, as that could be related to some of your symptoms. Not sure it explains everything.

    Were I in CA, I would try Standford before I went out of state.
     
  8. *GG*

    *GG* Senior Member

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    Or a car accident or some other physical trauma?

    GG
     
  9. heat123

    heat123

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    Thank you all for your replies and feedback. I will try to answer everyone's questions:

    @msf: The Lyme test was against the antibodies, not western blot. It was drawn by Kaiser, so I'm sure it was the basic stuff. I am looking into IGENEX testing.

    @digital dog: Only 2 fillings, but neither are Mercury. I did get 1 tattoo about 10 months before I started getting sick. Good question.

    @caledonia: my B12 was tested and is within normal limits (actually on the upper end of the scale). thryoid, parathyroid, t3, t4, etc. was all normal and tested several times over the last year. I just asked my doctor to put in an order for heavy metals and he did for Mercury and one or two others.

    @Vic: Yes I was in the best shape of my life before this happened due to really hard exercising (circuit training and running). No injuries.

    @ggingues: No accidents, injuries or anything like that...ever.

    @WillowJ: I've heard doctors mention dysautonomia before, but is there any test for that? It doesn't seem like it.
     
  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Yes, there are a number of formal and informal tests. A doctor (probably an electrocardiologist or a nuclear cardiologist; other types of cardiologists and most PCPs will typically not know enough--probably why they mentioned it and didn't go further; ask for a referral if it sounds like a reasonable thing to check out, to you) can help you rule it in or out.
    Some of the formal tests are listed here.

    I have had none of those; my doctor prescribed blood volume medicine just based on symptoms and blood pressure readings (I think he noticed my pulse pressure was low and my heart rate was high). There is also an informal test for POTS known as the "poor man's tilt test", which some doctors will have done at their office. It takes only a short time to test for POTS, but can be done for longer to check for NMH (neurally mediated hypotension) as well.
     
    SOC likes this.
  11. Thinktank

    Thinktank Senior Member

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    Have you been on a benzodiazepine? E.g. Xanax, diazepam, clonazepam.

    How does your CBC look like?

    Do you have G.I. issues?
     
  12. digital dog

    digital dog Senior Member

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    heat, if your tattoo has red in it then that can be problematic.
    I'd get on digestive enzymes and sort gut out. test nutritional status and thyroid.
     
  13. caledonia

    caledonia

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    I assume you had serum B12, which is useless. It could still be low. Read the links I posted for info on which tests to get. You can also do the Doctors Data Urine Toxic Elements (I think unprovoked is ok) and check for cobalamin levels. My serum B12 is right in the middle of normal, while my cobalamin is zero. B12 has been very helpful for me.

    Note that if you decide to supplement with B12, it should be the active form(s) and sublingual. Not cyanocobalamin and not taken orally, as it won't absorb and basically be useless.

    It sounds like thyroid can be ruled out, assuming you also got thyroid antibodies. If so, then I would look at the adrenals with a 4 point (24 hour) saliva cortisol test.

    If you want to save money, you can take your temperature 3 times a day and chart it per Dr. Rind, which is supposed to give info on the thyroid and adrenals. http://www.drrind.com/therapies/metabolic-temperature-graph

    For metals, serum tests will only show current, not past, exposure. Your body stores toxic metals in the tissues and in the brain. Provoked urine tests are not reliable. The best is the hair metals and elements test I already mentioned, interpreted with Cutler's info.

    My latest provoked test shows everything in the green range with basically no mercury and lead on the higher end of green. My hair test (with proper interpretation) shows mercury, lead, and surprise - arsenic. In fact, the arsenic might be my worst problem. Just found out that arsenic puts you at higher risk for cancer - eek. I have stopped eating all rice due to this, and will be chelating out all of those metals the right way.

    I've done chelation other than the frequent dose Cutler style, but knowing what I know now, all I managed to do was redistribute the metals and make myself worse. I'm still having memory issues from the one round of chelation I did this past spring (after a month of feeling achy/anxious/depressed/spacy).
     
  14. halcyon

    halcyon Senior Member

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    @heat123 Your onset sounds highly consistent with ME. I had a very similar onset at the same age which just happens to be the exact average age of onset for ME.

    Did you have any notable instances of GI distress (stomach ache, vomiting, diarrhea) or respiratory symptoms within a few months prior to onset? Even something mild that you might have simply put down to food poisoning or a simple cold? Do you have any GI symptoms presently?

    If your doctor agrees that you meet the criteria for a diagnosis of CFS or ME, I would recommend you have them refer you to Dr. John Chia in Torrance, CA. His practice is named ID Med. The wait to see him is quite long but he is the only major expert on this disease in southern California. You will find the same or longer wait times to be seen at one of the northern California clinics such as Stanford or the Open Medicine Institute.

    Dr. Chia's belief is that these symptoms are caused by chronic infections with enteroviruses. You can see the list of symptoms he associates with this here, you may find some of them familiar.
     
    Last edited: Oct 31, 2015
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  15. Forbin

    Forbin Senior Member

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    I would just say that your symptoms sound extremely similar to what mine were initially, including the "anxiety." In my case, I strongly suspect that the initial anxiety was a by-product of my balance impairment - as well as the uncertainty about what the heck was going on. The sensation of losing one's balance is probably wired into us to cause serious anxiety, and prolonged vertigo would, no doubt, induce a lot of stress over time.

    Though you did not mention this feeling, ME is sometimes likened to the crummy, spacey, impaired feeling of having a bad "flu" - only, in ME, that feeling is always with you. There is recent evidence that the immune system elements that can cause this sensation (cytokines) are, on average, abnormally elevated in the first three years of the illness, so that might explain why people experience that particular feeling.
     
    Last edited: Oct 31, 2015
  16. heat123

    heat123

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    @Thinktank : To help with my sleep issues, I take 0.5mg Ativan about 3 days week. I started this several months ago, and it seems to give me better quality sleep. However, I think my body got used to it and I am not reaping those benefits anymore. I have tried taking this in the daytime occasionally, and it doesn't seem to affect me mentally or physically. I have had my CBC checked several times and it has been within normal limits. I didn't have any GI issues previously, but in the past 2-3 months I have had some intermittent constipation or irregular bowel movements. Also had some weird issue where after eating almost anything, I have thick phlegm in the throat and mouth. Doctors think this is an atypical acid-reflex, but I had an endoscopy with biopsies and everything came back clean. Just another unexplained thing. Btw, sometimes this gives me difficulty breathing and swallowing because it feels like my throat is closing up (but doesn't seem like an anaphalyxis reaction) as this subsides on its own within a couple of hours.

    @digital dog : Mine is black. Which nutritional tests? My multiple thyroid tests came back normal.

    @caledonia : I will look more into the B12 links you posted. During the past year, my body temperature hangs out around 96-97. I will take look at that link you sent. About a year ago I had a urine cortisol test. Is that different/better/worse than a saliva one?

    @halcyon : The 2 months prior to the onset, I did not have any colds, fevers, or anything strange. Not sure beyond that, could have been something minor that I didn't pay much attention to. I have seen Dr. Chia's name mentioned before, thanks for that recommendation.

    @Forbin : I don't / haven't felt flu like. Can you tell me things you have found that help with your symptoms, especially fatigue?
     
  17. heat123

    heat123

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    One other thing I wanted to mention is that, as soon as I sit down or relax, I can fall asleep - doesn't matter the time of the day. If I stay active and engaged, then I am better.

    Has anyone here had an overnight Sleep Study done at a facility? What were their findings? I had one a couple months ago and they didn't find any issues. Not surprising since these tests can only detect so much.
     
  18. Thinktank

    Thinktank Senior Member

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    @heat123 , Have any of your symptoms worsened since you've been on ativan?

    It sounds like you already hit tolerance so the best thing to do is to wean off the medication slowly. Google benzodiazepine withdrawal syndrome to learn more about benzo's and why they should not be used for more than a few weeks.

    Your G.I issues might be related to the use of ativan because benzo's mess up the HPA axis.
     
  19. aquariusgirl

    aquariusgirl Senior Member

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    Over training syndrome?
     
  20. cb2

    cb2 Senior Member

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