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Desperate for answers; Girlfriend getting sick

Discussion in 'General ME/CFS Discussion' started by Thinktank, Dec 5, 2013.

  1. Thinktank

    Thinktank Senior Member

    I really need your advice / ideas / or any useful comments. My girlfriend has becoming increasingly ill in the last 2 months and we've seen a few "specialists" in the best private hospital to no avail.
    I am so fed up with conventional doctors and don't want her to go down the same path as i have in the last 3 years; paying huge amounts of money and wasting loads of time without any clear outcome.
    Conventional docs are arrogant and incompetent to treat any chronic illness.

    I'm desperate guys, really. She lost about 50% of her hair in 2 months, is tired all the time, having these weird blackish rashes on her skin of which some are painful and she keeps losing weight.

    To me it looks like it's a viral or bacterial infection or a combination thereof but the docs we have seen have not even slightly shown any interest in my suspicions.
    Another thing that might be possible is a nickel / titanium / latex allergy caused by her metal braces. If i look back to when some of her symptoms started it was approx. 1 to 2 months after she got the braces 1.5 years ago.
    My suspicion for nickel or other metal allergy is confirmed by the fast that she can't wear low quality earrings, it gives her a rash.

    I've made two more appointments for tomorrow. One with a dermatologist and one with a hematologist.
    I hope the hematologist will have some better insight into her problems but i don't suspect much from the dermatologist. I'm going to force him to do at least some patch testing to check for nickel / titanium / latex allergy.

    After this i'll send her to a private lab to have at least IgM / IgG tested on all common CFS viruses like CMV, EBV etc.

    What else can i do to help her???

    To list her symptoms:
    Dark spots on lower back, itchy and red after showering
    Dark spots above/behind both ears
    Dark spots and dots on toes and feet, painful
    Dark spot on side of tongue
    Dark spots and dots on handpalm and fingers, painful

    Extreme Hair loss, thinning areas

    Left kidney pain sometimes
    waking up at night 3 to 6 times to urinate, no restful sleep

    Allergic reactions, unknown cause
    * Swollen lips, rash, sneezing

    Weight loss (unable to gain weight) 46kg to 40kg (she's short but now also underweight)
    Diahrrea sometimes (not in the last 2 weeks)
    Intestinal cramps sometimes (not in the last 2 weeks)

    Tired and weak feeling daily, needs at least 12 hours sleep each day.
    Headache sometimes

    Abnormal Clinical findings:
    Low White blood cell count 2.5 (ref. range = 4.5 to 10)
    Low neutrophils 52.8 (ref. range = 55 to 75%)
    High lymphocytes 38.8 (ref. range = 20 to 35%)
    Low Hemoglobin 11.1 (ref. range = 12 to 16)
    Low Hematocrit 33.7 (ref. range = 37 to 47)
    Low MCV 79.6 (ref. range = 80 to 96)
    Low MCH 26.1 (ref. range = 27 to 31)
    Low Platelet count 153 (ref. range is 150 to 450)

    Low BUN 6 (ref. range = 8 to 20)

    High globulin 3.7 (ref. range = 2.5 to 3.5)

    low HDL-C 33 (ref. range = 50 to 150)

    PAP smear: abnormal cell from cervix biopsy but no HPV

    Other stuff:
    X-ray chest normal
    Ultrasound full abdomen normal
    EKG normal
    ANA / ANF negative
    Stool test normal, no parasites or pathogens
    Urine test normal
    Last edited: Dec 5, 2013
  2. Helen

    Helen Senior Member

  3. Beyond

    Beyond Juice Me Up, Scotty!!!

    Murcia, Spain
    Sounds a lot like hypothyroid symptoms to me. Don´t believe these that say weight gain is always tied with hypo, often is the contrary, especially if coupled with adrenal fatigue and other stuff. In my experience the best test for hypothyroidism is urine 24h.;year=2009;volume=75;issue=1;spage=20;epage=28;...

    I saw a great study the other day casually, can´t find it now. Anyway it was a case report of a woman with hypothyroidism and she had diffuse hair loss and also darkish spots in her skin. After hormone treatment the photos showed a lot of improvement, she looked basically healed.

    I hope you find soon what is going on.
    For what is worth I have had and continue to have similar labs. In my worst days I had 144 Platelet count. Since then (became serious with dieting, raw juiced daily, plus changing supplements and therapies) it has improved some, especially the white blood cell count. I have leaky gut, hashimoto´s causing hypothyroid and severe adrenal fatigue (these are my clinically confirmed problems, might have something else like a chronic infection).

    I also have B12 defficiency.
    Last edited: Dec 5, 2013
    Plum likes this.
  4. Helen

    Helen Senior Member

    @Thinktank If you would suspect Addison´s disease after reading my post I would recommend going to the ER. The dark spots are typical for Addison´s and it is a serious disease that might be life-threatening and needs to be treated a.s.a.p. Cortison is an effective medicin and substitution for this adrenal disease. (You wrote kidney pain too)
    justy, Beyond and aimossy like this.
  5. Crux

    Crux Senior Member

    Hi Thinktank;

    There could be infections with the elevated lymphocytes and symptoms.

    I also suspect B12 deficiency, and iron deficiency anemia.

    There can be hyperpigmentation and hairloss with B12 deficiency.

    The MCV may be low because iron is low.

    With low iron, copper can be low, which lowers neutrophils. ( This can happen with B12/ folate deficiency too.)

    Here are some links to case studies with photos of some people with hyperpigmentation from B12 deficiency. Individuals may vary in presentation.
    Mij likes this.
  6. Tristen

    Tristen Senior Member

    Northern Ca. USA
    Absolutely crazy that the docs would not be alarmed by these symptoms and get very aggressive seeking diagnosis. It sounds environmental to me. Some kind of toxicity, poison, or allergic reaction. Contact with anything that may have caused this? I would be looking at the metals and toxins too. Molds as well. Most infections this severe would also cause a temp, at least initially. The low WBC's is significant.
    Last edited: Dec 5, 2013
  7. maryb

    maryb iherb code TAK122

    Also maybe consider she has metal toxicity through the braces - try some gentle chelation/binders once she's had some more tests - for thyroid etc as others have suggested.
  8. vamah

    vamah Senior Member

    Washington , DC area
    You might want to ask the doctor about TTP, which is a disease which damages red blood cells. A lot of your girfriend's symptoms are seen in TTP. Esp if the spots she has are bruises or bleeding under the skin.
  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    yes! also the labs look like there is stuff to work with (possible anemia, immune problems, etc.).

    all the best
  10. barbican1


    do you recall how this started 2 months ago? was it sudden or was she already having problems before those two months?
  11. Thinktank

    Thinktank Senior Member

    @Helen, thank you for your support. Your mentioning of Addison's disease has been very valuable.
    We've seen a hematologist and rheumatologist today and both didn't think about it until i mentioned it. The hematologist totally agreed with it being a possible cause and wants her cortisol serum tested among other things. Although i think that's pretty useless he at least showed interest. I made an appointment for next wednesday with an endocrinologist to have her completely checked up for addison's disease or any other adrenal insufficiency disorder. That means a battery of tests like ACTH stim. test etc.

    The rheumatologist found out that my gf has a positive ANA titer of 1:2100 so that's quite high! Based on that she ordered a load more labtests to rule out certain auto-immune diseases and to get a better understanding of what's going on.
    We've been lucky today because we've seen two docs that were proactive enough to do further testing and really took the time to hear her out.
    We have a follow-up with them on monday to discuss the labresults so fingers crossed.

    @Beyond, thanks for your input. Based on your comment i asked the rheumatologist today to have her thyroid values tested. FT4 and TSH look normal on her last checkup but i insisted to also have FT3 T3 and T4 re-checked. rT3 was unfortunately not on the list. If there are any abnormal findings then she'll also have thyroid antibodies tested. Unfortunately i don't know about hypo or hyperthyroidism so i have to do some homework on it.

    @Crux, yes that's what i suspect as well, some underlying infection.
    The hematologist also agreed upon checking B12, folate and iron because she has anemia. Thanks for mentioning it. The hyperpigmentation from B12 deficiency looks very similar to hers.

    @Tristen, yes exactly my thought but the problem is low WBC can have many causes.
    She had a persistent low-grade fever last week.
    Unfortunately none of the conventional docs agreed with the possibility of environmental poisoning / toxicity or metal allergy. I know better so ill have her checked up for that anyway.

    @maryb, yup, i've requested patch testing for nickel, titanium and latex. If positive then also a MELISA test for nickel and titanium to be sure.

    @others i'm out of time now but will reply later.

    Again thanks for all your valuable comments.
  12. Helen

    Helen Senior Member

    I am really glad that you finally seem to get help both of you, even if you have to direct the doctors to basic tests though your girlfriend is so sick. It might well be a combination of many factors according to what you have told us, but hopefully you will know more next week. How could a "specialist" let your girlfriend go without examinating the anemia thourough? Too bad. I suppose they have checked the electrolytes, not as a cause, but as deviations should be treated.
    WillowJ and justy like this.
  13. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    There are quite a few things I can think of which cause black patches or spots. Can you get a picture of them and post it here so people can better know what these look like with her. Its hard to know what to suggest when one doesnt know exactly what kind of dark patches she has.

    Another thing which it could be is mastocytosis spots? (there are various kinds of this so it can appear in quite a few different ways). Mastocytosis can be systemic (so can affect so many things depending on where the mast cells are concentrating) and one will get allergy symptoms with that too. Unless things have changed, systemic mastocytosis can be hard to diagnose unless a spot is biopsied (thou a simple blood test sometimes can show it) and something most doctors are not at all familiar with.

    I once got a few black spots in my leg (they were on the surface but also went below the surface and under my skin a bit too.. I was put on antibotics on and off for over a year (as it helped and got them to shrink or disappear but they kept coming back a few months later. Doctors never bothered testing what those were but one doctor told me he thought it my black and dark patches were staph. Those areas I had were very sore in places.

    Her test results seem to indicate she has some kind of chronic infection... (my white blood cell count over time raised ..actually doubled in a year after being borderline low for about 6-7 years.. with taking lithium orotate (a nutritional supplement). It didnt thou help any of my symptoms but at least my white blood cell count test results are good now (so maybe it will prevent more issues in the future).
    Last edited: Dec 6, 2013
    Beyond likes this.
  14. Thinktank

    Thinktank Senior Member

    @vamah i'll look into TTP.

    @WillowJ , yes there's something wrong with her immune system, but caused by what?? See the labresults below.

    @barbican1, it kinda started 1.5 years ago.
    - Gradually lost weight
    - Gradually lost hair
    - Frequent urination at night

    Starting 1 year ago:
    - Red Allergic rashes, unknown cause and only sporadic

    Starting 2 months ago:
    - Blackish rashes and spots on hands, fingers, toes, feets, back and above ears.
    - Fatigue. Needing naps during the day and already very tired around 8pm
    - more hair loss
    - Left kidney pain.

    3 weeks ago:
    - 5 days low-grade fever
    - Huge amounts of hair loss, pulling out 20 or 30 hairs at a time.

    She's been feeling a little bit better since the low-grade fever cleared and less fatigued in the last few days.
    The White blood cell count has raised a few points to 3.1, maybe that has something to do with it.
    Also note she was in perfect health before all of this started. She actually has never been sick in her life besides having the flu one time in her childhood.

    @Helen, i don't know what's wrong with these doctors but it's extremely frustrating. I have this feeling i have to do everything myself.
    It's not clear yet why she has anemia and leukopenia. Please see the labresults below, B12, iron and folic acid came back within normal range.

    @taniaaust1 , I asked my girlfriend and she agreed upon posting a few pictures, something i already thought about doing.
    Regarding mastocytosis, i don't think that's the case. Do you have it?
    I'll look into lithium but for now i want to find out what's causing her low WBC and C3 / C4 etc.
  15. Thinktank

    Thinktank Senior Member

    Today we've been to the rheumatologist to discuss the labresults which was a very frustrating visit for me. When do docs ever learn to think a few steps ahead or out of their protocol guidlines? Not just A -> B? Always treating symptoms and never going after the real cause of things.

    As expected some things came back positive in her ANA II profile as well having low C3 and C4.
    She still has anemia and leukopenia.

    The rheum. wants to treat her with an anti-malaria medicine called Hydroxychloroquine, prednisone and a PPI like omeprazole. Something i absolutely do not agree with before doing a lot more testing.
    The labtests so far show an infection of some kind, be it viral or bacterial that might have triggered the auto-immune response. Without testing for certain viruses and bacterial infections i don't think it's wise to start off with prednisone because that might just throw more gas on the fire (personal experience and it messed me up completely).
    She wants her to use the PPI as prevention for stomach ulcers because pred. can irritate the gut lining. I tried to explain to the rheum. any PPI will probably cause dysbiosis leading to further infectious problems. Hydrochloric acid has many important functions for example killing off pathogens as first line of defense. There are other solutions to protect the stomach from pred. than radically blocking the whole digestive system. Her answer was not to read all that stuff from the internet written by bloggers....
    We left frustrated, i do have some ideas on what to do next but this is all getting very very very disappointing.

    I'm seeing KDM for my own treatment and am wondering if he would be a good doc to help her. Maybe i have infected my girlfriend with a virus or bacteria... although we mostly have different symptoms we both feel fatigued and keep losing weight.

    ESR = 18 (ref. range 0 - 20)
    CRP = 0.03 (ref. range 0 - 0.75)

    C3 (LOW) = 38.9 (ref. range = 79 - 152)
    C4 (LOW) = 12.8 (ref. range = 18 - 55)

    CPK = 60 (ref. range = 38 - 234)

    Sodium = 138 (ref. range = 136 - 144)
    Potassium = 4.5 (ref. range = 3.6 - 5.1)
    Chloride = 103 (ref. range = 101 - 111)
    Bicarbonate = 28 (22 - 32)

    Creatinine = 0.50 (ref. range = 0.4 - 1.00)

    ANA profile II:
    Anti Sm Negative
    Anti SS-A POSITIVEAnti Ro-52 negative
    Anti SS-B negative
    Anti Scl-70 negaive
    Anti Jo-1 negaive
    Anti CENP B negative
    Anti dsDNA negative
    Anti Nucleasomes negative
    Anti Histones negative
    Anti Ribosomal P-Protein POSITIVE

    HIV negative

    B12 = 451 (180 - 914)
    Ferritin = 168.8 (11 - 306.8)
    Folic acid = 4.6 (Over 3.6)

    Other results follow on wednesday after the appointment with hematologist.
  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    hi, Thinktank, I think your doctor is very thorough with testing. This is good! Has your doctor not given your girlfriend a diagnosis? I am not a doctor and cannot diagnose anyone. Maybe they are waiting for the other results?

    You may find this link useful, though, as far as giving you stuff to look up if you want to. Another pertinent para is here.

    Besides being an antimalarial, hydroxychloroquine (brand name Plaquenil) is also used in Lupus, RA, etc.
    Last edited: Dec 9, 2013
  17. Helen

    Helen Senior Member

    What a terrible situation for you. I agree, no cortisone before a diagnose. I have the same experiences as you. The side effects mess up everything.

    What about contacting Kenny De Meirleir about your girlfriend? Somebody posted about his engagement in her family situation when someone else got sick and talked with her for, was it 45 minutes to try to help and support. Worth a try, I think. There are many labtests that are not very valid, so I think you need a clever doctor now. Best to you
  18. Thinktank

    Thinktank Senior Member

    @WillowJ , quite thorough in testing yes but not so great in interpreting the results unfortunately.
    She still has no real diagnosis, the doc suspects Systemic lupus erythematosus.
    Another doc suggested a skin biopsy because she also seems to have vasculitis.
    I don't buy it's just one thing causing her illness.

    About the hydroxychl. yes i know some CFS-specialists also prescribe it in some cases.

    @Helen, steroids are evil imo. In the long run they cause more damage than good. One doc i've seen for my own treatment described it as medieval medicine and only doctors who panic and don't see any other way out prescribe steroids so quickly.
    She has seen what that poison has done to me so she's very reluctant to use it.

    I've sent an email to KDM's clinic, hopefully he agrees to see my girlfriend on the same day.
    Valentijn and Beyond like this.
  19. Helen

    Helen Senior Member

    Did they answer your e-mail before? I tried many times but had to call for answers.
  20. Lacey


    In my experience doctors just want to prescribe panadol and send you on your way :rolleyes:

    Just have to keep switching doctors till you can find one who actually wants to do some work that day.
    Tristen and Beyond like this.

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