Request for help or ideas about my illness

Discussion in 'Fibromyalgia Main Forum' started by ric7, Aug 18, 2009.

  1. ric7

    ric7 New Member

    Hi All,

    (I apologize for my bad and poor command of English, and so loooong post.)

    I am desperately seeking a relief (or to find out what my illness can be). I have been bedridden for 15 years now. And now I have no support.

    *My main symptoms list,

    - Deep fatigue.
    - 'Pins and needles' (uncomfortable tingling) in all extremities (mainly in hands, feet and face).
    - Continued and appellant's muscular/tendon issues in the sinews and muscular insertions (muscle strains, tendinitis …) accompanied of strong pains. The most disabling symptoms for me so far. I have not lost strength but due to these issues I have very restricted my movements.
    - What I feel as muscle strains need moths to “cure” (pain disappears).
    - Low corporal temperature pattern. When I wake up, usually is at 95'6F-96'2F.
    - Very dry lips, dry lips and a bit dry face skin. I think my recurrent caries & early tooth loss & frequent vocal neuralgias are related to it.
    - Minor form of restless legs syndrome (RLS).
    - Urinary incontinence (I think related to abdominal muscles discomfort and/or diabetes insipidus).
    - Some times face neuralgias.
    - I catch infections easier than casual people (mainly respiratory ones).
    - Great difficulties to keep the concentration/attention in tasks that required mental effort and stressing me. Every time I try to concentrate or keep attention on them, or thinking with something stressful for me, neurological, muscular discomfort & 'Pins and needles' rise a lot, to one level not bearable. When I turn away my attention, at once, all discomfort decrease again at usual level (discomfort never disappears, never goes down to 0).
    - Very good reflexes (as if peripheral nervous system was over excited)…
    - Occasionally I have certain difficulties in finding the right word(mainly nouns and adjectives) when I'm building phrases (speaking or writing).
    - I have suffered some hearing lost (in med and high frequencies) last years. But started many years after the onset of the disease.
    - From 19/04/08 I suffer strong tinnitus and hypercusia. Already in the step 2 of Yasko Protocol.
    - I do not suffer from other common symptoms to CFS, as cognitive, stomach or intestinal related, panic attacks… etc. Neither never I have metallic taste. If I had no pain I slept well too. This was before strong tinnitus appeared a year and half moths ago.

    I have had diagnosed with "unknown miopathy" for many years due to I test positive in a neurological/muscular test called ElectroMyoGraphy (EMG). It gives a pattern of spontaneous muscular activity pointing to muscular issues. Two muscular biopsies repeat in an interval of three years (1994 & 1997) discarded any known myopathy as source of my complains. My most disabling symptoms so far are muscular-tendon ones(at begging of this message I have listed all symptoms).

    My last EMG,

    I have brought few amalgams for more than twenty years. From 2006 all are gone. And I was vaccinated for my mite allergy (a shoot x moth) over a 3 years period at age of 16(until I was 19). Now I’m 40. In 2005 my mercury level in blood was 13 µg/L and 8'4µg/L in 2006... I tested highly reactive to inorganic mercury in Test Melissa. I carry too other immune abnormalities as RNASE-L, th1/th2 shift, NK with very low activity… As well as some light hormonal issues (first morning TSH usually around 4 or 5, but two years ago it up to 9…). So after heard about Methylation blocked theory/hypothesis I ordered a MAP, UAA and gene panel one year and a half ago thorough Yasko… Results of FIGLU, MMA among other AA seemed indicate some type of issues with vitamins… I carry 21 snps too.
    I thought my case could fit in GB & MB hypothesis, even so most of my symptoms are not usual among PWC …

    I decided to follow Yasko protocol -not complete for financial reasons- mainly due to I'm +/- for both CBS mutations and I'm carrying 21 snips(the ones analyzed byYasko panel).

    After 18 moths under methylation supplementation (mainly B vitamins, some in its active form), assorted of Vitamins(E, C, D…), Minerals (Molybdenum, Selenium…) & supports herbs(Milk thyste…) & organ supports (BioThyroid, Ora Adrenal…), there are not signs of improvement or worsening in my main symptoms. Only my chronic constipation seems better. Now I have around two bowel moments per day. Before protocol three or four a week.
    Other symptom that looks a bit better too, are the small tremors (shaking) that I have been suffering all these years when I tried to do something that needed a bit of manual precision and concentration (writing, pointing with hands and fingers...). My doctor suspects it is due to my high intake of magnesium and other minerals.
    On the opposite side there are a strong tinnitus and hypercusia that protocol seems to have triggered. Tinnitus appeared some days after I began B12 shots (10 mg). Both don't calm down when I stop all core supplements for some weeks.
    I have been suffering hearing lost last years, but it was prior to protocol. Some doctors relate hearing loss with the like hood to develop tinnitus.

    I have achieved to reduce MMA(from 16 to near 0) and Figlu(from 10 to dl). However random metal detox by urinary route- standardized to same creatinine- not seems very encouraging. Last one I was at full of doses.

    My neurologist has always thought that I suffered a channelopathy or some type of myopathy, but they have never identified the root of the problem. Recently this doctor has become interested in my analytical abnormalities related to vitamins metabolism, but he has nothing clear...

    Add that from 5/6 moths ago along with methylation supplements & organ support I’m taking 150mg OSR a day & low EDTA dose + Garlic... With no success so far. Neither adverse reactions. I take some candida supplements as well (Candex & Paradex).

    In 2003 I tested negative by PCR to CMV, EBV, HHV-6, Toxoplasma, Borrelia, Parvovirus B19, Coxsackie. Positive to Mycoplasma. Low IGF-1.

    I did several rounds of Doxicicline with no reaction.

    So far I have done around 60 sessions of FIR Sauna (Portable) with no benefits in my main symptoms. Every session lasted around 50 min.

    Unlike most CFS I’m not, or very low sensible to most supplements (in contrast to most CFS). May be it is related to my poor detox numbers or poor detox natural capacity. Or maybe enzymes blocks are too much. Only high amount of B12, Zeaxanthin + lutein (antioxidants usually prescribed by eyes health), ALA (>20mg) & LDN (Low dose Naltroxedone, >0.5mg) seems to increase a lot my tinnitus. But at a level no bearable for me. And I don’t know if it is a sign of increased detox or a simply over stimulated metabolism producing exiting metabolic species. But no other side effect from them. And rest of supplements like water for me. It is very frustrating.

    I’m desperate to find some guidance & to find people who suffer same symptoms/lab pattern I have. I’m so disabled that hardly can move due to muscular strains/insertions & tendon pain I suffer 24h/day. Where can I look?. What test I can do to try to find out explication to them. These symptoms seem unique to me and my doctors... I have not found other person with same symptoms & lab profile. Specially tendon insert/muscular pains/issues.

    I would be very grateful to anyone that can give suggestions or whatever useful information.

    Thank you very much for your efforts to help us!

    All the best for you and all,



    *Some urine AA results,

    Pre 3 moths 7 moths(in stpe2)

    July 07 May 08 September 08

    Creatinine 150 180 55

    MMA 16 8'9

    Figlu 10'2 dl

    Metionine 8'4 14 4'4

    1-methylstidine 300 230 390

    3-methylstidine 120 390 77

    Last MMA from may 09, is near to 0.

    *UTM's chart, Metal detox seems has slowed down.

    Next My Yasko gene panel results,

    ++ = MAO A(R297R), VDR Fok, BHMT01.
    +- = CBS(A360A, C699T), COMT(H62H, V158M, L136L), MTHFR(A1298C, C677T, 03), MTRR(H595Y, K350A, 04, 06), NOS, SUOX, ACE, VDR BSM/Taq, VDR Taq, SHMT.
    In step2 from 02/04/08 - DD/MM/YY

    My thyroid/adrenals basic tests previous Yasko Protocol in morning blood was ok... I think.

    T4 & T3 & Free T3 were in range.... Only TSH was higher, around 9... But lately it has decreased to 4 to 5... I’m taking one capsule of ByoThyroid & ¼ of Iodoral a day in Yasko protocol, and two caps of ora Adrennal too.

    My values pre-yasko

    TSH from 4 to 9
    Srm-T3 Triiotiron 2 nmol/L [0.91-2.79]
    Srm-T4 Free Tirox 14,89 pmol/L [50 - 22.70]
    Srm-T4 (Tyrosines) 96 nmol/L [58.1-140.6]
    Cortisol around 574.3 nmol/L [118.6-618.0]
    Adolesterone ?
    DHEAS-S 6,49 µmol/L [2.60-7.70]

    After stpe2 of Yasko I have only checked TSH & Cortisol one or two times & not the rest of hormones...

    Cortisol remain 420-530

    SrmTSH Tirotropina 4.56
    Srm-T4 Free Tirox 16.63 pmol/L . [50 - 22.70]
    Srm-T4 (Tyrosines) 97 nmol/L [58 – 141]
    Srm-T3 Triiotiron 2.02 nmol/L 0.91 - 2 .79

    My doctors think that my glands are ok… But sometimes I think in subclinical hypothyroidism.
  2. Nanie46

    Nanie46 Moderator


    Sounds highly suspicious for a chronic borrelia burgdorferi infection.

    I see that you tested negative for borrelia in 2003. So did I and I have lyme.

    Lyme is a clinical diagnosis and is NEVER ruled out by just a lab test, although Dr's mistakenly do this all the time.

    99% of Dr's do not know anything about how to recognize, diagnose or treat chronic lyme.

    Please read the following paper by a lyme expert............

    Pay attention to the info on page 7 about western blots, the symptom list on p 9-11 and the coinfection info on p 22-27.

    You have many of the symptoms.....low body temp, pins and needles, facial neuralgias, muscle pain/problems, tendon problems, overactive reflexes, problems with finding the right words,
    urinary problems, tinnitus, hyperacusis.....etc.

    I strongly urge you to read that paper and then go to on flash discussion....sign up for free like you did on the Medical Questions board and post some questions there.

    They also have a Seeking a Doctor board where you can find a lyme literate MD.

    There is a Lyme board here also that I am on, but it is not very active like is.

    Almost everyone with chronic lyme was told by many Dr's that they did not have lyme.

    I really think you would benefit from a thorough eval by an expert Lyme literate MD.

    Lyme patients often have other tick borne illnesses too, such as bartonella, babesia, ehrlichia, etc.

    I had just a FM diagnosis for 21 years before doing my own research and discovering that the infection that was causing all my symptoms is borrelia burgdorferi.

    3 Dr's told me I did not have lyme based on testing only. They are very uninformed.

    Testing methods are poor, but Igenex is the best lab for borrelia testing.

    They test for all bands and other labs do not.

    I tested officially CDC negative and Igenex negative but I had some lyme specific bands that are only present with lyme.

    I am being treated by a LLMD and am improving.

    I would be glad to help you in any way I can. Your story is all too familiar.

    [This Message was Edited on 08/18/2009]
  3. ric7

    ric7 New Member

    jaminhealth: Thank you very much… After a while without taking my body temp, yesterday I did again. It seems values are higher than a year ago. Now I measure it inside mouth –I have read is more accurate-, and before under arm... Ambient Temp is very high (82 – 86 ºF) too. I don’t know if it can have some influence. But first morning now is around 97.1-97.16 ºF... And it reach 98,3 – 98,6ºF around 20-21h. I think is not bad at all. I’m fuelling metabolism so perhaps it is what helps to raise body temp. Or perhaps when I took under arms value was not so accurate.

    However, I don’t feel symptomatic improvements… Maybe some negligible feelings of more energy. But muscular/tendon discomfort/issues, most disabling symptoms for me, remain as ever.

    Maybe my thyroid is working better than I thought.

    Nanie46: Thank you very much, very interesting information. What puzzling me is that some years ago I did a round of antibiotic (Doxyciline) with no reaction. And I have never experienced adverse reaction when I took antibiotics.
    Furthermore in theory Yasko Protocol plus OSR plus Garlic plus LDN & Saunas are stimulating the immune system & detox over time. I would expect some type die-off. Wouldn’t?. May be the rise of tinnitus when I increase some supplements is a sign of it. But It doesn’t go away completely when I stop supplements...

    Here in Spain Lyme is not endemic… Is very rare & there are hardly any specialist in Lyme. In addition reliable tests are conspicuous by its absence. It’s very frustrating. In addition I have a very poor mobility & need assistance. Now I’m alone.

    I think could be very interesting & useful to compare my EMG with the ones from other ill people. Perhaps it could give some clues.

    Other data is that usually my eosinophils count is very high.
    [This Message was Edited on 08/20/2009]
  4. ric7

    ric7 New Member

    Sorry, only add I don't remember a tick bite. Is it possible may be bitten without realizing it and without leaving stains?. Just remember to have suffered meningitis at age 3, but symptoms began at 23.