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Bloodwork results - what next?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by frenchmoxie, Oct 3, 2012.

  1. frenchmoxie

    frenchmoxie

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    Hey everyone,

    I'm new to this board and so I suppose I'll introduce myself. 27 year old female, having bad adrenal exhaustion and fatigue symptoms for at least 3 years now (but have had immune problems my whole life). Diagnosis of Sjogren's syndrome in 2007. Endometriosis, low DHEA, high Parvovirus B19 antibodies, Strep antibodies, suspected thyroid issues (along with antibodies), erratic cortisol levels.

    Currently being treated with Zithromax and Minocin for suspected Lyme in addition to mycoplasma pneum. Just recently added Flagyl but have yet to see a response. Have not seen improvement and have been taking antibiotics since December 2011.

    I have a bit of money right now to get some bloodwork done, and would like to know what my next step should be? What should I have tested to get the most bang for my buck, so to speak. I'm thinking more viral testing (HHV-6, coxsackie?), but really don't know what to do at this point. Any insight or interpretations are appreciated!

    Thyroid

    TSH = 2.27 range: 0.45-4.5
    Free T3 = 2.7 range: 2.0-4.4
    Free T4 = 0.94 range: 0.82-1.77
    Reverse T3 = 17.5 range: 13.5-34.2 (expected this result to be higher, actually)
    T3 Uptake = 34% range: 24-39%

    Thyroid Peroxidase Ab = 405 (H)

    E Sed.Rate = 2 (always this low)
    CRP = <0.3

    ANA = positive (always have a high titer for this, 1:1280)
    SS-A = 2.8 POS
    SS-B = negative
    RF = 15.4 posrange: 0-13.9

    MCV = 100(H)range: 80-98
    MCH = 35.4 (H)range: 27-34.0
    RBC = 3.8range: 3.8-5.1
    Hgb = 13.5
    Hct = 38.1

    WBC = 4.4range: 4.0-10.5
    Platelets = 206
    Lymp% = 23%
    Abs.Lymph = 1000
    Neutrophil = 69%


    DHEA-S = 96 mcg/dL (this seems really low to me, I am 27 y.o.)range: 45-320

    cholesterol total = 129range: 125-200
    HDL = 61
    LDL = 57
    Triglycerides = 53

    vit. B12 = 1506 (H) range: 200-1100 pg/mL (I supplement with B12)
    vit. B6 = 44 (H) range: 3.3-26.0 (also I supplement with B6)
    Folate = 23.4 (H?) range: > 5.4 is normal
    vit. D, 25-OH = 32 range: 20-100 (supplementing with D3 now)

    Methylmalonic Acid (serum) = 196 range: 87-318
    Homocysteine = 5.9 range: 5.4-11.9

    C3C = 87 (Low) range: 90-180
    C4C = 15 (Low) range: 16-47


    Lyme Western Blot IgM - negative (Igenex)

    31 IND (epitope test showed negative)
    39 IND
    41+
    58 +

    Anti-Streptolysin O = 156 range: < or = 200

    Strep DNASE B Antibody = 335 (H) range: < 301

    M. Pneumoniae Ab, IgG = > 5.00 (H)
    M. Pneum. Ab, IgM = < 770

    (tested negative for all Chlamydia/Chlamydophila antibodies)

    CMV IgM 0.39 (negative)
    CMV IgG < 0.9 (negative)

    Parvovirus B19 IgM 0.4 range: <0.9 = neg

    Parvovirus B19 IgG 6.1 (H)

    EBV VCA, IgM 0.64 < 0.9 = neg
    EBV VCA, IgG 0.20
    EBV EBNA, IgG 0.00 (negative)


    Cortisol (saliva) - erratic results

    morning 8.7 range: 3.7-9.5 ng/ml
    noon 1.1 (L) range: 1.2-3.0
    evening 3 (H) range: 0.6-1.9
    night 2.9 (H) range: 0.4-1.0


    Thanks!
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    frenchmoxie likes this.
  3. xrunner

    xrunner Senior Member

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    Hi,

    I'm not an expert, so here's a few ideas based on my own experience which may not be entirely relevant.

    I had some of the same tests you had and some you haven't. Of these, the most helpful to me were:
    - Heavy metals, particularly if there's been chronic exposure to mercury such as amalgams or through the diet
    - Amino acid profile, deficiencies due to diet (was vegetarian), digestion etc. can severely impair detoxification and make recovery difficult
    - Rather than chasing individual viruses (which I did for a time but in the end you can't get rid of them) I'd test Nagalase. Although it is experimental, it could explain a reason your immune system can't deal with those chronic infections, whatever they are.
    - Rich would probably suggest a Methylation panel (see Methylation section for details)

    Before you give up on abx, I'd check the possible reasons they might not work. Except for Flagyl which kills only specific bacteria/parasites and forms, the others work for this kind of infections only if your immune system works. Biofilm, excess inflammation, hypercoagulation and microcirculation can be other limiting factors.

    Regarding your Dnase results, you may find relevant what Annesse Brokley has to say. She wrote a book "Autoimmune the Cause and the Cure" where she explains a theory linking Dnase and autoimmune disease. (She posts on a number of forums and Facebook and can be contacted directly).

    All the best
  4. rlc

    rlc Senior Member

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    Hi, Frenchmoxie, your high Thyroid Peroxidase AB is probably caused by your Sjogrens which can cause these antibodies to be high, all causes of having high results for these antibodies can be found here http://en.diagnosispro.com/differential_diagnosis-for/anti-thyroid-peroxidase-tpo-antibody-lab-increased/12993-154.html

    All your other thyroid results are fine.

    Your high MCV and MCH should be investigated further to find the cause. High MCV can be caused by all these 102 diseases http://en.diagnosispro.com/differential_diagnosis-for/reference-to-organ-system-mcv-mean-corpuscular-volume-lab-increased/10439-154-240.html High MCH can be caused by these 10 diseases http://en.diagnosispro.com/differential_diagnosis-for/mch-lab-increased/10421-154.html

    If your high MCH and MCV are caused by the same condition there are six possible causes see http://en.diagnosispro.com/differential_diagnosis-for/mcv-mean-corpuscular-volume-lab-increased-mch/10439_10421-154_154.html you certainly don’t have one of these Pernicious anemia this is caused by very low B12, have you had Folic acid checked because deficiencies in folate cause high MCH and MCV and would explain your symptoms. You need to get a good doctor to investigate your high MCH and MCV and find the cause; some of the diseases that can cause these results are very serious! Be aware that because you have been taking more B12 then you need, that this can mask some of the changes in the blood that can be caused by some of the diseases that cause high MCV and MCH which can make it hard for a doctor to know what is going on, if you test Folic acid and it is normal your best bet would be to see a hematologists to find the cause.

    Your DNase B may mean that you might have a current streptococci infection but antibody results may be from a previous infection see http://www.clinlabnavigator.com/deoxyribonuclease-b-dnase-b-antibody.htmlbut previous infections can leave you with poststreptococcal glomerulonephritis, damaged kidneys, have you had your kidneys tested? If not it would be a good idea to get your doctor to test you for it information on testing is here http://www.nlm.nih.gov/medlineplus/ency/article/000484.htm

    Low C3C can be caused by these diseases http://en.diagnosispro.com/differential_diagnosis-for/c3-serum-lab-decreased/11932-153.html which does include Folic acid deficiency (which also causes high MCV and MCH) and Glomerulonephritis

    Low C4C can be caused by these diseases http://en.diagnosispro.com/differential_diagnosis-for/c4-serum-lab-decreased/11933-153.html they include Glomerulonephritis and Acute Myelogenous/Blastic Leukemia AML (which also causes high MCV and MCH)

    The most important tests that you’ve failed are the MCV, MCH C3C, C4C and DNase B they need to be investigated properly to find the cause of these results and you need to be checked for any of the diseases that they indicate there is a possibility that you have.

    Have you been supplementing with B6 as well as B12? The vitamin D reference range that you have quoted is not right, below 20 is considered totally deficient below 30 is considered insufficient, new research says that people should have levels far higher than this at least 40 ng and there is a lot of research linking low vitamin D to auto immune diseases like Sjogrens so certainly a good idea to take extra vit D and get your levels higher ASAP.

    Your DHEAs is normal, Cortisol results vary on different days, and can be affected by the previous night sleep whether you go to sleep late or just being more stressed at the time of the test, but the important thing is that your morning level is high normal which shows that you have little chance of having adrenal insufficiency. The results later in the day may be a bit out of range but two are high which shows that your adrenals are working. So I don’t think there is a major problem there, probably just the result of you being unwell rather than the cause of your illness. If you're results continue to be out on future tests then getting an endo to properly investigate this would be wise

    When it comes to all the viral tests, this largely comes down to who you want to believe. Science has shown that only when IgM is positive by itself or as well as IgG that people have active viral infections. They have also found that totally healthy people have positive IgG to many viruses and that this just indicates past infection, science has also shown that totally healthy people have high IgG titers and there is nothing wrong with them.

    If you tested 100 totally healthy people you would find almost all of them are IgG positive for at least one of these common infections and that many of them will have high titers. It just shows that they have had one of these common infections in the past.

    However there are a few doctors who say when they find positive IgG results or raised titers in people with diseases like ME that nobody has found the cause of yet, that these results indicate that these infections are the cause of the problem. So it really comes down to who you choose to believe.

    So the view of almost all of the scientific and medical community is that you do not have M pneumonia, you’ve had it sometime in the past (A single positive IgG result only indicates previous immunologic exposure. Seehttp://www.mayomedicallaboratories.com/test-catalog/print/85107 )

    And that you don’t have Parovirus B19 you’ve had it in the past because you don’t have positive IgM see http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/84325

    Lyme test are very controversial and very unreliable (have you had ELISA tests done because they should be done.) The majority of the science would say that your tests indicate you don’t have it. But there are others that disagree with this; it’s explained in this article http://www.lymenet.de/labtests/brenner.htm

    Whose right and whose wrong I don’t know. But I have seen reports of people who have been told they have Lyme based on only a few bands being positive and they have been treated with antibiotics for years without getting better only to find out that they really have something else. So its important to investigate all posibilities!

    But one thing that science is in agreement with is that high MCV and MCH and Low C3C and C4C do indicate serious diseases and that they should be properly investigated to find the cause, so my suggestion based on the information in the links that I have provided would be that you concentrate your efforts and money on getting these test results properly investigated until the cause is found and hopefully you will then be able to get better.

    Hope this helps

    All the best
  5. Mattman1

    Mattman1

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    Nice reply rlc! The only thing I have to comment on is concerning VIt. D levels-- we know the vast majority of us here are low in them-- however, isn't there some new papers out that have suggested this could be a direct consequence of the CF itself? Meaning, the body is naturally lowering the D levels in response to the autoimmune problem at hand, and it could actually be even counterproductive to supplement to get those levels higher. And if your Calcium levels are perfect, it seems even more unlikely that raising them would be such a vital thing as what little is there is doing its job.

    Could be completely wrong on this, just read that the raising of some of the levels on D more recently could have more to do with financial incentives than an actual problem in deficiency. Startled me as I have been on the 50k ones for months now.
  6. globalpilot

    globalpilot Senior Member

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    Ontario
    Your low WBC, low RBC, high MCV, high MCH are similar to what mine were.
    I was able to get those in range using 800 mg folinic acid per day.
    Rich explains this pretty well in his methylation panel analysis.
    He advised only 200mg folinic and 200mg folapro though, lower than what I was taking.
    I stopped folinic acid and my levels returned to their pre-folinic levels.
    frenchmoxie likes this.
  7. frenchmoxie

    frenchmoxie

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    rlc,

    Kidneys and liver tests appear to be normal.

    Glucose, serum = 85 range: 65-99
    BUN = 10 range: 6-20
    Creatinine = 0.76 range: 0.57-1.00

    Sodium = 138 range: 134-144
    Potassium = 4.1 range: 3.5-5.2
    Chloride = 102 range: 97-108
    CO2 = 26 range: 20-32
    Calcium = 9.2 range: 8.7-10.2

    Protein = 7.2 range: 6.0-8.5
    Albumin = 4.4 range: 3.5-4.5
    Globulin = 2.8 range: 1.5-4.5
    Bilirubin = 0.8 range: 0.0-1.2

    Alkaline Phosphatase = 36 range: 25-150
    AST = 15
    ALT = 13

    Folate levels also appear normal. I’ve been on a vegan diet for the past year, so I have been supplementing with B6, B12 and other B vitamins.

    As for the cortisol results, I actually used saliva collected from 2 consecutive days due to dry mouth issues.

    Thanks so much for your interpretation; it has given me some things to consider. It seems that with my high MCV and MCH that I might look into a methylation panel, as others have suggested.
  8. Timaca

    Timaca Senior Member

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    I would add to others thoughts here (which are all good) that if you haven't seen improvements and you've been on antibiotics for almost a year then those antibiotics are not helping you and you likely don't have the pathogen that you were targeting. You only have one band on the Lyme WB (band 58)...most everyone tests positive for band 41. I doubt you have Lyme.

    Best, Timaca
  9. rlc

    rlc Senior Member

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    Hi Mattman 1, RE

    I’m not aware of any papers that suggesting that CFS is causing low vitamin D levels. There is a very simple explanation why Vitamin D is low in CFS. 41.6% of US adults have Vitamin D deficiency with levels under 20ng/ml see http://www.ncbi.nlm.nih.gov/pubmed/21310306 but Vitamin D insufficiency is defined as being under 30 ng/ml and new research recommends levels should be a lot higher than this. These alarming levels of vitamin D deficiency are caused by changes in people’s lifestyles over the last few decades not spending enough time in the sun, and excessive use of sunscreens.

    So at least 41.6 percent of CFS patients should be vitamin D deficient, but as this article points out levels of deficiency are far higher amongst people with poor health. Most people with CFS are house or bed bound and spend very little time in the sun because of this, which causes vitamin D levels to drop even further. So we end up with a situation where almost all CFS patients are vitamin D deficient, Vitamin D deficiency can by itself cause the symptoms of CFS and also the immune system can’t work without sufficient levels leading to common infections not being cured and becoming chronic.

    I have seen a paper that said that fibro caused low vitamin D levels because fibro patients have low vitamin D levels. However others commenting on this paper pointed out that fibro has the same symptoms as Vitamin D deficiency and that it is actually vitamin D deficiency that is being mistaken for fibro. Dr Mirza says that 70% of patients with Fibro actually have vitamin D deficiency and can be cured when treated correctly.

    There is the theory of Dr Marshall that claims that people with all kinds of conditions including CFS should deliberately lower their vitamin D levels. However Dr Marshall isn’t even a medical doctor, he is a Doctor of electrical engineering. And the entire medical and scientific community thinks his theories are garbage, easily proven wrong and potentially very dangerous. And anyone who deliberately lowers their vitamin D levels for a long time will end up with Osteoporosis.

    RE

    The thing with calcium levels and vitamin D is that people can be severely vitamin D deficient for years and still have normal calcium levels. Vitamin D is needed to absorb calcium from food, when people are deficient this stops happening, but the body compensates for this by taking calcium out of the bones, which means that the calcium test comes back normal, it can take years even decades depending on the level of vitamin D deficiency for the skeletal system to have been stripped of so much calcium, that there is not enough left and the calcium test comes back abnormal. By which time the patient has Osteoporosis and their bones start breaking. So having perfect calcium levels is not a good marker of healthy amounts of vitamin D.

    RE

    There is very little financial incentive in getting people to take vitamin D it is very cheap. The raising of vitamin D levels being promoted at the moment is based on a large amount of new research that has shown that the previous understanding of vitamin D was wrong and that it is not just associated with maintaining calcium levels. Vitamin D is not a vitamin it is an essential hormone. It has been found that low levels of Vitamin D is implicated in causing around 30 different kinds of Cancers, that it is an essential part of the immune system, it is being implicated as a potential cause of many Auto immune diseases, and many other diseases such as Asthma and Hypertension .

    It has been found that receptors for Vitamin D are found in almost every cell in the body which shows that the body is using and needs vitamin D to make all these cells work correctly. It has been found that Vitamin D influences how over 200 genes in the human body work. On top of this they have found that a vast percentage of the populations in the western world are vitamin D deficient by using the old recommended reference ranges for vitamin D, but they have also found that these reference ranges should be a lot higher otherwise people have no vitamin D stores and will become deficient over winter. They say that levels have to be above 50ng/ml (125nmol/L) before people even start storing vitamin D using this reference range almost the entire population of the western world is deficient. And they are now coming to the conclusion that the low levels of Vitamin D in the western world may be the biggest reason why the western world suffers from a large number of diseases that virtually don’t exist in third world countries which have high vitamin D levels such as Cancers and autoimmune diseases.

    Unfortunately Vitamin D’s relationship to ME has never been investigated. But it potentially has a very important part to play in working out this problem.

    Early epidemic of ME tended to occur in people who worked in hospitals, army barracks or had other inside jobs school teachers etc, i.e. people who would have limited sun exposure therefore were likely to be vitamin D deficient. And almost all of them happened in countries with low amounts of sunshine especially in winter, e.g. UK, US and Iceland,

    Many viruses have been implicated as the cause, but new research show that the immune system doesn’t work without sufficient Vitamin D see http://www.sciencedaily.com/releases/2010/03/100307215534.htm so is low vitamin D levels causing people to get these infections and then not being able to fight them?

    Some research suggests that ME has an auto immune component and that an increase in cancer levels is found in ME patients. But new research shows that auto immune diseases and some cancers are probably caused by low vitamin D levels http://www.webmd.com/multiple-sclerosis/news/20100823/vitamin-d-linked-to-autoimmune-diseases

    Some research shows there may be a genetic component to ME, New research shows that vitamin D influences the actions of many genes http://www.sciencedaily.com/releases/2010/08/100823172327.htm

    Many studies show immune anomalies in ME patients; new research shows that immune anomalies are caused by vitamin D deficiency such as http://iai.asm.org/content/76/9/3837.full

    Like I say no research on Vitamin D and ME has been done, and many of the findings in ME have been assumed to be caused by ME when they may be caused by vitamin D deficiency, did low vitamin D cause the weakened immune system which then caused the infection or autoimmune dysfunction or damaged genes that then lead to the patients illness? Nobody knows at present it’s not being researched and other research is being done on mixed cohorts which causes endless confusion.

    All that can really be said at the moment is that the scientific evidence shows that vitamin D deficiency is a very bad thing and anybody with it should get it treated ASAP, but check Calcium levels before taking it, because High calcium levels can indicate a handful of diseases which people shouldn’t take vitamin D if they have these diseases.

    All the best



  10. Ema

    Ema Senior Member

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    I actually disagree with this...I don't think the thyroid results are fine at all. Yes, the high TPO AB could be related to the Sjogren's or it could also be from autoimmune Hashi's. It isn't unusual for one to have multiple autoimmune issues.

    Are you taking any thyroid replacement now?

    Did you test the TgAB's as well for thyroid?

    http://www.stopthethyroidmadness.com/hashimotos/

    I would suggest doing that and addressing the thyroid first.

    Most people feel best with a TSH between 1 and 2 (even though this is not the best way to assess thyroid function for many people). Even the uber-conservative AACE recommends 2.5 as the top of the range as opposed to 4.5.

    You can find further info on this here:

    http://nahypothyroidism.org/

    Most people feel best with a FT4 of about 1.2-1.4 and FT3 in the top third of the range. I would consider both of your results low indicating hypothyroidism.


    Your RT3 ratio is also a bit low if you follow the Holtorf clinic method...your ratio is 15 and they suggest that it should be over 20 for optimal conversion of FT4 to FT3.

    It may be necessary to supplement Vit D and it may not. Too much is just as bad as not enough from an immunosuppressive standpoint. I would not supplement Vit D without also testing the active form, 1,25 Vit D. In many inflammatory illnesses, the Vit D receptor is dysfunctional and the active level can skyrocket out of control even while the storage form, 25-OH looks normal or even optimal. Unfortunately, many doctors are not aware of this facet of Vit D supplementation and prescribe large doses to patients that do not actually need it.

    You can read more about this here:

    http://arizonaadvancedmedicine.com/articles/immune_system_dysfunction.html

    I have a different take on this as well. I think these saliva results show the beginning stages of HPA axis dysregulation. This is a pretty common pattern to see and now is a great time to nip this problem in the bud if possible. Your cortisol level is too high at night especially, it starts coming DOWN in the morning (when it should be coming UP) and then overcorrects to give you a noontime low. Another overcorrection gets you high in the afternoon and the pattern starts over again. This is not the rhythm that the adrenals should be in and I would definitely address this.

    I do think I might consider doing another test first though on one full day to make sure that the results are similar. It shouldn't vary dramatically though but better safe than sorry.

    I would think about melatonin at night and perhaps some adaptogenic herbs at noontime especially. I posted a whole list of these a while back. The ones to choose really depend on what other things you have going on as well. Let me know if you would like help finding this.

    I would also consider supplementing DHEA. This may also help to regulate your high to low swinging pattern. I use a lipid matrix/micronized form. I think it is important to start low at 5-10 mg a day and work up to 20-25 mg/day for women. My doctor likes my level (late 30s female) to be in the 150-180 range.

    Your cholesterol may actually be a little bit low to have enough raw materials to make steroid hormones efficiently. This may be because so much of it is going to cortisol production right now. It seems like the sweet spot for cholesterol may actually be a bit higher than statin manufacturers might like us to believe - closer to 200.

    I believe these doctors. I have high IgG viral titers and have been improved vastly by antivirals (Nexavir and Famvir). I would look at the work of Lerner and Montoya in particular for more reading on this subject.

    I would also look at the blog of a PR member...which I found very interesting as well.

    http://vlgonvalcyte.wordpress.com/

    That said, your viral titers are only high for Parvo so viruses may not be your most debilitating problem.

    I would think about looking at your total IgG and subclasses 1-4.


    Lyme tests are not perfect...that's why Lyme is primarily a clinical diagnosis that needs to be made by a LLMD - a doctor that is specifically trained in recognizing Lyme.

    ELISA tests are considered basically worthless for Lyme and I would be suspect that any doctor that would run one to diagnose Lyme has very little success actually TREATING Lyme.

    Do you have the IgG Western Blot as well?

    39 is Bb specific...so if you are getting any activity on this band, you've been infected with Bb at some point. Whether or not that is your problem, I'm not sure, but that is where your symptoms and an LLMD would come in.

    You are on a good regimen of antibiotics now that you've added the Flagyl as a cyst buster. Have you experienced any herxing or reaction at all to the abx? What dosages are you taking? It's possible that without the cyst buster all the bacteria have mutated to the cystic form to escape the other antibiotics. You may get a response now or you may need to think about biofilms as was mentioned earlier as well. Is your blood sticky and hypercoagulated?

    Are you taking any probiotics?

    Your zinc results are low in my opinion based on the alkaline phosphatase result. RichvanK suggested that a level much below midrange on that test indicates a zinc deficiency because that is dependent on zinc.

    If it were me, I would think about a methylation panel for sure as well as suggested previously. I would also think about a gut analysis like the one offered through Metametrix or Biohealth. This will also look at parasites as well as digestion issues. An organic acids test through Metametrix might also be an idea to pursue.

    Ema
  11. rlc

    rlc Senior Member

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    Hi Frenchmoxie, happy to help, Folate references are often too low, so you need to be in the middle upper part of the reference range, Homocysteine and MMA are often need testing to see if Folate is normal some people can be inside the reference range and still have a problem. My personal opinion is that you should get a good doctor to look for the causes of your high MCV and MCH and low C3C and C4C before trying things like Methylation panel these results can indicate very serious diseases, and people with CFS are not supposed to fail these tests.

    The Methylation theory is only a theory it has not been scientifically replicated and failed results on these kinds of tests could be caused by many diseases and these tests can’t tell you which one. The treatment that is being recommended for failed Mythylation tests involves taking a large amount of vitamins and minerals and other supplements and the often small improvement that people get from this could just be caused by fixing a few minor vitamin and mineral deficiencies. But the danger is that it includes taking large amounts of B vitamins such as folate, this can mask the changes in the blood caused by other diseases, these vitamins can make tests that show many forms of anemia normal, making it impossible to diagnose them e.g. if your high MCV and MCH are not caused by folate deficiency, but one of the other serious diseases that can cause these results. Taking high doses of folate and other vitamins can cause these results to become normal but the underlying disease will not have been found and treated and you will remain sick. So I would advise starting with getting a good doctor to investigate your high MCV and MCH and low C3C and C4C for other diseases first.

    Have you had your iron levels checked? Vegan diets are famous for causing iron deficiencies and deficiencies in other things like zinc.

    I doubt that doing the cortisol tests over two days would make too much difference to the results, the important thing is that your morning cortisol is high normal which shows that your adrenals are working. But like I say if problems persist seeing an endo may be a good idea.

    Hope this helps

    All the best
  12. Ema

    Ema Senior Member

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    The complement C3 and C4 proteins are often low when people have Sjogren's or other autoimmune disorders. Given the results on the CMP, I think it is vastly more likely that this is the issue rather than undiagnosed kidney or other disorders. Of course, it is never a bad idea to follow up on any abnormal test result thoroughly.

    At the risk of repeating myself, the high AM cortisol may prove that the adrenals can work...but the abnormal rhythm proves that the signals to the adrenals originating from the brain are off. This (not structurally damaged adrenal glands) is the cause of most HPA axis dysfunction in the ME/CFS population. It is still an issue in my opinion.

    Ema
  13. rlc

    rlc Senior Member

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    Hi Ema, the important point here is that Frenchmoxie has failed four standard blood tests, MCV, MCH, C3C and C4C. Therefore according to all medical sources they do not have CFS as CFS patients don’t fail these kinds of standard blood tests, so all the theories about what alternative tests CFS patients should have and how they should be interpreted do not apply to them. Frenchmoxie’s tests indicate the possibility of many serious illnesses some of which are fatal if untreated and these results have to be investigated properly to find the cause, and wasting time and money on alternative tests for CFS and looking for treatments for viruses that they almost certainly don’t have and wouldn’t cause their failed test results anyway is only going to endanger their health. The failed standard tests should be investigated properly first.

    People can argue about the merits of various alternative tests and treatments recommended for CFS patients until they are blue in the face, but the facts still remain that 99.9% of the medical and scientific community don’t agree with them and they have not been scientifically replicated and are just theories which people are paying large amounts of money for with often very unimpressive results and sometimes very detrimental effects on their health.

    But what is important is that when people have failed standard blood tests is that they get them investigated properly before it is potentially too late, rather than getting lost in the expensive and scientifically un replicated world of all the unproven tests and theories about CFS.

    It is up to Frenchmoxie to make their own choices as to how they want to proceed, my advice is that they follow recommended medical procedure and get their failed standard tests properly investigated first as this is very likely to find the cause of their suffering and they will have a chance of getting their lives back.

    All the best
  14. Ema

    Ema Senior Member

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    I agree with you that a diagnosis of ME/CFS is far from a sure thing at this point. It looks more likely to me that there are multiple autoimmune processes going on which can also cause the abnormal results. A high MCV for example is commonly found in hypothyroidism, specifically autoimmune Hashimoto's, which is the most common form of hypothyroidism in the USA. And there is no question that Hashi's is present given the high levels of thyroid antibodies.

    I also agree that viral problems are not likely the cause of the issues but we got to that place by vastly different paths. Many people with ME/CFS do benefit from antiviral treatment but it is often difficult because the medicines are expensive in the dosages that are found to be effective and the course of treatment is usually years, not months.

    As I wrote before, absolutely all abnormal results should be followed up on thoroughly by an appropriate medical professional, but the since the abnormal results all go along with autoimmune disease, that is, in my opinion, the most likely cause.

    The tests I suggested are not specific only to ME/CFS. The methylation panel, a good gut analysis, and amino acid testing are a good solid bedrock of testing for many conditions including autoimmune ones.

    Ema
  15. frenchmoxie

    frenchmoxie

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    Timaca,

    Actually I did test positive for band 41. And an IND on band 39.
  16. frenchmoxie

    frenchmoxie

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    Hi Ema,

    I agree with you here. I definitely feel like I should be doing something to get those high antibodies down, and it is well-documented that Sjogren's and Hashi's often occur together.

    No, I am not. However, I was finally able to convince my doctor today to allow me to do a trial of Armour.

    Yes, I was negative for TgAB's.

    I've been supplementing with 5,000 I.U. of vit. D for about a year now. I haven't checked my levels recently. Will put this on my to-do list.

    So in order to lower nighttime cortisol levels... I do take a small amount of melatonin at night, less than 0.5mg. It does help. I've also been experimenting with an Ayurvedic formula that contains Ashwagandha during the daytime.
    I remember reading something about supplementing with phosphatidylserine at night to help lower the levels. Do you know anything about that?

    I would love to see what my cortisol levels are based on just one day, but due to dry mouth I really can't produce enough saliva in one day at the 4 different testing times.

    What exactly would my total IgG and subclass results tell me? Some of this immune system stuff can get so complex and can be a bit over my head :confused:


    IgG Western Blot (Igenex)

    41 IND

    Yes, I'm taking a Jarrow Formulas probiotic with 6 different strains.
    http://www.iherb.com/Jarrow-Formulas-Jarro-Dophilus-AF-10-Billion-60-Veggie-Caps-Ice/22471

    I've always wondered why my levels were on the low side! The multivitamin I take (NewChapter) contains zinc (7.5mg), but maybe I should be supplementing extra then?
  17. Timaca

    Timaca Senior Member

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    frenchmoxie~ I know you tested positive for band 41. Over half the population does. IND really doesn't mean much. A well known Lyme doctor (researcher) looked at my labs once and disregarded all the IND bands (and I had a lot of them at that time). I've had around 20 western blots done on me (give or take a few) and I'm positive for 6 bands on the IGG (non Igenex testing) and 6 bands on the IgM (non Igenex testing) over the years. (Igenex testing I'm positive on 4 IgG bands and 9 IgM bands). I'm still not sure I have lyme. I definitely get a "herx" when I take antibiotics. And IV rocephin really helped me. BUT, I also have viruses too and one can't tell the difference between a chronic viral infection and a chronic bacterial infection by symptoms (usually).​
    In my case I think I'm battling both chronic viral and chronic bacterial pathogens. What those bacterial pathogens are is the million dollar question.​
    My 2 cents is look at your labs which are really out of line (some of the people gave you good suggestions on what looks out of line) and fix what you can that is showing up wrong. Your Lyme labs (in my opinion) are not remarkable and I wouldn't be treating them if those were my labs.​
    Good luck, Timaca​
  18. frenchmoxie

    frenchmoxie

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    When I first started the minocycline I got "sick". I really don't know if it was a herx or not because I was home for holiday time with my family and just assumed I picked up some bug from them. Whatever it was it all started with a sore throat that only lasted about a day and then muscle pain, fatigue, headache, etc. Seemed to experience a little bit of everything I suppose. My doc right now would like to call it a herx. I've been skeptical about a Lyme/Bartonella diagnosis this whole time.

    Anyways, I started the Flagyl only a week ago, at 250mg, and have yet to experience anything. Not sure if Flagyl takes a little while to work its way into the system or perhaps I simply don't have lyme/co-infections. I'm on 100mg of Minocin every other day. 250mg of Zithromax every other day.

    How do I tell if my blood is sticky or hypercoagulated? Thanks.
  19. Ema

    Ema Senior Member

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    This is good news!

    I would definitely try to take a look at the book by Dr Datis Kharrazian. It is the best book I have found on autoimmune thyroid disease and full of information that you may find helpful.

    http://www.thyroidbook.com/

    Also note that Armour was re-formulated in 2009 and since then some people have found that Naturethroid or Erfa (Canadian Armour) are working better for them. These are all interchangeable at the pharmacy - you just need to specify which brand you prefer to the pharmacist and have them order it in if they do not carry it.

    If the melatonin helps, I would consider taking up to 3 mg at night. Also make sure to help your own circadian rhythms by sleeping in a fully dark room and limiting computer/TV time at night to help yourself wind down for sleep.

    PS can lower cortisol quite nicely and it also has benefits for the cell membranes. I would certainly think it was worth a try. I also like ashwagandha and it may also help with the thyroid...but what else is in that formula? Sometimes manufacturers go a little nuts and throw in everything but the kitchen sink.

    Don't forget about DHEA too...

    This is a great website for immune deficiency information:

    http://primaryimmune.org/about-prim...s-deficiency-and-specific-antibody-deficiency

    They will send you a great handbook as well if you ask for it.


    Without a review of all your symptoms, it's hard to say for sure. Hopefully your LLMD has gone through all this and made a clinical diagnosis. The test results are not overwhelmingly positive, that's for sure, but there was activity on a Lyme specific band and the tests are not infallible especially for chronic, longstanding infections. That's why it has to be a clinical diagnosis.


    Rich suggested 50mg a day for me and my level was higher than yours. I think that's about the max of what one should take a day but I'm not sure. I think you are also supposed to monitor copper status while taking zinc.

    Ema
  20. Ema

    Ema Senior Member

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    Those are pretty low dosages, at least from my experience. It may not be high enough to provoke much. I take 100 mg of minocycline twice a day and 500 mg of Zithromax a day just for comparison. I also took 500 mg of Flagyl twice a day.
    I knew my blood was sticky because it was darn near impossible to get it out of my arm and into a tube for a blood draw. It would coagulate almost as soon as the needle went in. Since taking lumbrokinase for biofilms and coagulation, my blood flows out nice and smoothly no matter what needle they use. It's such a relief.

    I think there is also a coagulation panel that one can have done - Hemex? maybe? - but I have not had that done. Maybe someone else can chime in? Also, fibrin can be tested at Labcorp etc and that can go along with hypercoagulation as well.

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