The goal of this Community Report is to compile of list of tests that matter. Not necessarily tests which have lead to a diagnosis but tests which have resulted in a treatment approach that has produced results – made you a bit (or a lot) healthier.
If a test has revealed a diagnosis the doctor proceeds to treat you for and it’s been helpful then it fits. If a test reveals an abnormality the doctor has no treatment for – it doesn’t fit.
The first part of the poll lists tests recommended by the IACFS/ME primer (Table II). The second lists tests I’ve thought of.
I’m sure I missed many. Please add tests that made a difference who are not shown in the “Other” box at the end of the poll.
Just a couple thoughts. There are tests I have had which has lead to treatment – such as Vit D serum test – however I could not correlate symptom improvement to treatment with Vit D. Nonetheless I do think it was good that it was diagnosed.
Secondly, there are tests that may need to be screened for – such as auto antibodies – which do not lead to any treatment but do rule out other diseases, and thus are important.
So even though a test has not be correlated with improvement – it may be important to have done.
Good point 🙂
I agree with Joyce. There have been many changes in my treatment due to test results – Vit D Serum also being one, the MTHFR mutations being another- which have made no visable improvement.
I stay with it, as it is also not harming me to do so.
Treatment that has helped? LDN (virtually no more brain fog!) and Nuvigil.
I agree with LDN helping. That and Iodine are the only really noticeable treatments I’ve used. LDN for pain, Iodine for brian fog and fatigue.
Lily, this reminds me that I was tested for iodine deficiency. The doctor said my results were “mediocre.” The problem was that I couldn’t tolerate the Ioderol pills. They gave me terrible insomnia. I understand that iodine stimulates the production of thyroid hormone and I assume that I was getting a bit hyperthyroid. I tried splitting the pills into tiny pieces and still felt overstimulated. Finally I tried Lugol’s solution which I could dilute to get a minuscule dose. It was still overstimulating and I gave up.
Has anyone else had this kind of reaction to iodine, either as Ioderol or Lugol’s?
Maybe you could try kelp supplements for iodine? You can get capsules and empty some out….I think it comes in tablets and possibly liquid as well…or you could try just eating kelp or seaweed. Maybe when consumed in food you will tolerate it better and get coenzymes, etc and reduce the side effects. Maybe I will try this myself!
KV, thanks for the kelp suggestion. I’ve thought of it. But haven’t tried it. I have a slight worry that kelp these days might come from Japan and be a bit radioactive.
Are you taking idodine as a thyroid supplement or ??? What form and what kind?
I’ve decided I’m going to try anything and everything I haven’t already tried as the fatigue seems to be getting worse.
Fern, if I can ask – what are you taking for the MTHFR? I learned through trial and error (and advice from friends who have MTHFR) that taking L5-MTHF starting in small doses (1 mg/day) and working your way up each week by 1 mg until you feel better makes a big difference. I feel good at 3 mgs/day whereas one friend feels better a 1mg and another feels better at 5 mg,. Also, some brands of L-5 work better than others (I use Designs for Health and a friend uses Thorne. I tried another brand for awhile (of course, can’t recall the name) and it didn’t work for me. So you may have to play around some to get a good result. And if you aren’t taking B-6 in the form of P-5-P, try adding that to your daily mix and it will probably help you. In addition, B-12 in the form of methylcobalamin so that it can be absorbed properly. Excuse me if you are already doing all this and I’m sounding like a know-it-all! Just hoping I can help you feel better based on what has helped me. 🙂 Wishing you well!
Mary, I appreciate your concern and advice! My doctor has pretty much left it to me to figure out what I should be doing. All she said was, “Get L-methylfolate – over the counter”. Not much help!
I did a little research and started on 800mcg L-methylfolate along with methylcobalamin. I am not seeing any difference.
After reading your advice, I will look into getting P-5-P. I will also raise the L-methylfolate every week until I get to a dosage that makes a difference.
Again, thank you so much for your caring and thoughfulness! I wish you well also! 🙂
You’re very welcome, Fern! I really hope it helps. My doctor was clueless about all of this and I had to learn from friends, so I understand how frustrating it is. There’s a great site, MTHFR.net where you can get lots of good info that’s trustworthy and pretty easy to understand. Take care and if you have any question that I might be able to answer, just ask! 🙂
Fern and Mary,
Just a comment about P5P vitamin B6. I’ve been taking it for years – 50 mg. Recently I started to wonder whether increasing the dose my help the tingling in my hands and feet and lips, which I guess is some kind of neuropathy. So I increased the P5P to 150 mg. And the tingling, which had been going on for months, subsided. I don’t know how long I’ll continue at this dose, because I’ve read that too much B6 can actually cause neuropathy.
I mentioned P5P because Fern said she was going to look into taking it.
Thank you for the info, Rachel! I’ve had neuropathy in my feet for years (my whole family has it) and now I’m curious if increasing the P-5-P might help! I’m going to try it and see. If no change I’ll drop back down to 50 mg.
How long did it take for you to notice the lack of neuropathy after you increased the dosage, Rachel?
Mary, I think I noticed the reduction in tingling in my hands in about two or three weeks, but I can’t remember exactly. It’s not completely gone, but it’s a lot better. Alpha lipoic acid and R-lipoic acid are supposed to help, too. You can google it. Good luck with the P5P!
Thank you, Rachel! Good luck to you as well!
Mary, here’s what the Mayo Clinic says about alternative treatments for peripheral neuropathy:
I hope some thing helps!
Thanks! I love the Mayo Clinic site and refer to it frequently for all sorts of things. I’ve tried Alpha-lipolic acid and Omega-3’s with no success. Haven’t tried acupuncture (for neuropathy) but it did help my back pain – never thought to try it for neuropathy pain! Evening primrose oil and that other one that starts with an A (can’t remember it now something L-carnatine?) I haven’t tried yet. Thanks again for the info!
I take a generic form of Cerefolin for my MTHFR which includes methylcobalamin, methylfolate, and n-acetyl cysteine. The methylated forms of B12 and Folic acid that my body can’t methylate, and the NAC for detox and support to the energy cycle as precursor to ATP and glutathione.
Tests of Exclusion have helped as much as tests that are positive.
By far the best I have had are the Nuclear stress test and the
Overnight sleep study . These stopped my heart racing and palpitations.
Had to finally find a sleep study Dr. that knew what he was doing .
Took 3 different Dr. to do this.
This is a very important test to have for everyone having a problem sleeping. I had quit breathing close to 40 times a night.
with my heart racing and I would wake up in a panic.
I am on CPAP machine to sleep.
Sleep Specialty/Pulmonary Dr. has to do this.
What did the cardiac stress test do for you, Carol? I am scheduled for one next week but I don’t think it is going to address my issues as it seems to be designed to evaluate clogged arteries rather than other forms of heart dysfunction related to CFS.
I have hardly had any of the test that you have mentioned here for fibromyalgia. but I must say that the absolute number one thing that helped me in test values with treatment is female hormoneS; estrogen, progesterone, testesterone. it took me 7 years before I was able to find someone who agreed to take the lab values, but when I did the results came back that I had none of these registered in my blood. after I started hormone replacement therapy, the first thing I noticed was the electrical currents that went away, my mood improved, I had about 10 years of suicidal ideations almost daily, AND a decrease in physical pain! All those years of horrible suffering that doctors said was part odd fibro! Thyroid levels ands vit D are extremely important to me as well,
That is great news! I always thought the electrical buzzing/neuropathy was either heavy metals or mold toxicity (it destroys the myelin sheath). Can you share who the doc was that helped you with this issue and exactly what tests they ran to figure this out? Thanks for sharing:)
Reply to Ladybug 64 about hormones. They were also the turn around for me about 23 years ago when I first had the fatigue. I also took 50mg DHEA for many years and could function quite well..,could work again, travel, etc. I never stopped them, but I’m much older now (67) and have had a sever decline in energy the last 3 years …..so they are no longer doing it for me…..
It’s definately worth looking into.
I started HRT bioidentical and never felt worse- weird side effects too. Might be he got the formulation wrong. Prashanti I’m a bit younger than you at 61 but I too have seen a decline in the last 1.5 years. Since we’re both going to Stanford my email is firstname.lastname@example.org. I was in touch with another lady who has been there and need to touch base with her again…. Ladybug64 I’m taking LDN and it hasn’t done a thing, but it helps some significantly so it’s worth a try. I’d get the 50 mg pills and dissolve so you can experiment with dosage.
Hi, how would you dissolve the pills, in how much water? would appreciate more info on this. I found that i was very sensitive to the LDN and had a very bad reaction/visit to the ER at 4.5 dose and had to back up to 1 mg dose and have worked up to 3 mg but I can’t remember to take it every night…..so need to get back to my routine and keep amping up. I’m interested in how exactly you would dissolve it/measure the dose?
Kate all you do is get 50mg pills and dissolve that in 50ml of water so each ml is a mg of LDN, then just draw up however much you want. I used to get my syringes at the local pharmacy cause they get cruddy after awhile but was told yesterday there’s a new state law that prohibits them from giving or selling to anyone. I suppose your doctor would give you some though. I use a 10 ml one for mixing, filling it 5 times to mix with the pill and store in any jar in the fridge. I use a 3 ml one to draw up the med. I’m currently taking 3 ml so draw up the entire syringe. When I go to 4.5 I’ll take the 3ml then draw up another 1.5 ml – hope this helps.
I had read quite a bit about LDN prior to starting it. I had found a Facebook group with many long time users to be quite helpful. It’s called LDN Research Trust – Low Dose Naltrexone. It also has links to the main website. They have a list of prescribing doctors too. It was recommended to purchase LDN from a compounding pharmacy to ensure that you aren’t getting additional ingredients as they can interfere with the breakdown of LDN. I had purchased mine from “Skip’s Pharmacy” in Boca Raton, FL – he mails it out after you submit a prescription. He is highly experienced in the use of LDN. It was also explained that if you should need to dilute your script to use “distilled water” vs tap water. It’s a great resource for info, however it’s not so much as a chat group. There are other groups for chat.
I do take LDN, but orally. And I get it from a compounding pharmacy in New York. Should I try to inject it instead of taking it orally?
I’ve never heard of anyone injecting LDN. I use an oral syringe.
Someone mentioned buying 50 mg & diluting it as needed, which isn’t ideal. That was the primary reason that I had commented.
Jade – The “electrical currents” that you mention, are these like zapping sensations in your head? What I’m describing is what I get and I haven’t been able to link it to anything. I’ve assumed it had to do with Cymbalta as I will get them when my dosage is due. I don’t always remember to take it at the same time every morning.
Like the brain being zapped? On occasion I have what sounds and feels like electrical currents zapping the inside of my head. I either forget to ask the doctor or feel like she would think I was a bit looney. So, this is real?
Linda – yea, it’s very real. The only thing I could correlate to these electrical zaps was that they seemed to happen primarily in the morning and that it was around the time that I should be taking my daily dosage of Cymbalata which was 90 mg. I had lowered my dosage to 60 mg and I don’t seem to have them anymore. (My doc is aware that I lowered my dosage). I always for got to mention these zaps during my dr visit too.
I tried Cymbalta and it did absolutely nothing for my pain. Just made my emotions very flat. So I quit.
Jade, I couldn’t agree with you more although my vitamin D was extremely low before I got sick and stayed that way until 2 years ago when I noticed menopausal changes and came across a article regarding low Hgh- Human growth hormone. Or fibromyalgia? When Inread that article I was adamant about finding a doctor who would test all my hormones and follow though. Sure enough my Hgh was only 67, my testosterone was nil along with free test, my doctor was shocked by my numbers I was a 90 year old woman by my labs, so make sure you have all your hormones tested, Hgh replacement was heaven along with test replacement unfortunately I need to find another doctor, but can’t wait to I do, Sissy
Sissy, Is the HGH replacement a prescription medication or is it the OTC supp sold at vitamin or health stores? Thanks.
Human Frowth Hormone has to be prescribed by encronodists ( I just know I am spelling this wrong.. Sorry) anyway they did several test on me I was to sick at the time for any specialized test, besides my Hgh was low, my Igf1 was low, my Igg binding was low, so I was prescribed shots, and testosterone and it was a miracle for a year or two, I had strength and vitality, but as soon as it was stopped because my doctor stopped treating, and I couldn’t find a replacement endocologist , within two months my son turned and said to me are you still taking your shots and stuff, I said no the doctor retired. He said I Knew it! You are just like you were before you started taking your shots! He was very upset as I was to the strength slipped out of my body daily. I stopped sleeping and over slept during the day again were I was up by 8:00 am everyday before. I’m not saying it was a cure but what a remarkable difference it was, hugs, Sissy
Cort- Am I doing something wrong on Poll? I havesent several replies in and only one was published. I did reg in and hit submit. Is it me or site?
As to Vitamin D, interesting research by Trevor Marshall and Amy Proal indicate that low Vit D is only half the story and that we should test for bioavailable form of Vit D – 1, 25-dihydroxyvitamin D (calcitriol) as well. What they have found is that people with “low” Vit D (25-hydroxyvitamin D (calcidiol) AND chronic illness, often have sky high levels of 1,25- dihydroxyvitamin D (the bioavailable form). They are not deficient at all.
They go on to discuss the fact that Vitamin D is actually a secosteroid and suppresses inflammation/immune activity just like any other steroid does. Which means that for those with chronic illness related to chronic infection, you are making yourself FEEL better in the short term at the cost of making yourself SICKER in the long run as the pathogens multiply while your immune system is suppressed by the D steroid. They also make a fascinating argument about the fact that Vit D receptors reside on the immune cells and are turned off by calcidiol.
There are several youtube videos of their presentations at various conferences including discussions about the paradigm shift needed to stop seeking “one pathogen causing one disease” and instead look across the spectrum of chronic illnesses (lupus, RA, MS, ALS, Crohn’s, Parkinson’s, diabetes, ME, etc, etc, etc) and observe that they all have much more in common than they are different and that all most likely stem from the pathogen load of the individual which varies somewhat from person to person, accounting for some differences between these illnesses.
It is all very difficult for someone with brain fog to absorb but I keep going back to study their information because it just makes sense to me.
Kate, oh boy, oh boy! The vitamin D thing seems complicated! But maybe it is important for me. One of my holistic doctors (a psychiatrist who I am seeing for non-psychiatric reasons) tested my 1, 25-dihydroxyvitamin D and it was sky high! My other holistic doc, who treats me CFS (rather sloppily) thought it was OK. But the psychiatrist told me to stop taking D supplements for a few months and then go back to taking less. I’m due for another test which I’d better get round to doing. How disappointing that I might have been screwing up my immune system with too much vitamin D! But at least it is something I can potentially fix.
I’ll try to find the research by Trevor Marshall and Amy Proal unless it’s something you could easily post here. Thanks for this hot tip!
Kate, I just looked around a bit about the theory that vitamin D might be suppressing the immune response to pathogens. I found a refutation of Trevor Marshall and Amy Proal’s theory by Dr. Mercola.
It’s hard to sort this kind of conflicting information out.
Can you change those to check boxes (rather than using “radio buttons”) so that people can choose more than one item for each question?
This is an interesting project.
Agreed and the second batch of tests has two radio buttons that just say “other”. You should have several boxes that say other and have the text box to enter the test name as the tests I’ve had that helped are not on the list.
Thanks for the heads up – everything has been fixed.
Agreed. It was a combination of tests that pointed towards the cause for me.
MRI’s can reveal more than MS. In my case, after a long wait to get in with DR Bateman’s PA an MRI was finally ordered after she investigated my OI more and found low ADH levels. It revealed a pituitary tumor and I am a month out from having it removed. When the dust settles will I still have CFS? We’ll see. It was all more complicated than anyone thought and Florinef is helping my sodium stop tanking, but how long would an endo have taken to get me on it?
The take home for me is this. I am so glad I went through getting in with a CFS specialist. They know the pathology and can at least take some stabs in the right direction. I try not to think about all the dietary restrictions and supplements I have lived through over the past 8 years and instead look ahead to doing anything I can to make the surgery a success. I sure do have lots of tools. and.. thank goodness for Obamacare despite the naysayers.
Interesting. The IACFS/ME primer stated MRI (in case of MS) but apparently it can be used for other means.
Good luck with the pituitary!
Interesting on the Pit Tumor. Please keep everyone informed as to what
Hope all goes well.
Good luck with your pituitary procedure.
What CFS specialist did you go to?
At this point there are no definitive test for ME/CFS. However, tests and diagnostic procedures are useful in finding other concomitant physiological malfunctions that can be treated.
An interesting and useful survey might be the same list of tests and diagnostic procedures, with the question, which of these tests have been taken and were negative…..(or postive) in people with MECFS/
This could show how through a work up people have received before getting a diagnosis of MECFS and or what were the concomitant processes that might be occuring.
There are no standard tests, but from everyting I am reading, there are some biological markers (contrary to general misinformation online and with drs), at least for ME. There are things you can test that consistently show abnormal results with ME. Natural killer cells/immune dysfunction, blood flow to the brain, MRI lesions (not the same as MS), spinal fluid abnormalities, abnormal cardiac results on 24 hour halter monitor, POTS, NMH, etc. It’s not a single test…but consistent abnormal results are found on several tests that conclusively point to ME. It’s just that these tests have not been identified in any sort of diagnostic protocol because the CDC for whatever reason wants to keep everything very vague and impossible to confirm. So insurance likely won’t pay for all of these tests and the only way to get them realistically is to be in some sort of clinical trial.
Kate this info on markers is very interesting. I’m still new to learning about this….even though I’ve had the fatigue over 20 years.
How do they check blood flow to the brain and all the tests you mentioned? Would you need a heart specialist to order these things?
My Dr. thinks my heart is fine and sees no need for a referral for testing of the heart. I do feel there is a blood flow to the brain issue with me…. I’ve had neck injuries and used to be extremely clear thinking….not so much now.
It also feels there is a dopamine depletion. Does anyone know what to do about that?
Prashanti, amantadine is an antiviral drug used for CFS that also increases dopamine.
I am getting ready to do a dopamine challenge test on the advice of my doctor. It is Dr. Alvin Stein’s protocol at http://www.neurosciencemyths.com. My doctor came to this conclusion after a series of neurotransmitter urine tests done by NeuroResearch Clinics (www.NeuroSupport.com). I have been on serotonin (Replete extra) and dopamine (D5Mucuna) for several years, but now have worsening symptoms. The urine tests are $145/test and the last one recommended a dopamine challenge test.
I have been on antivirals the last 3 months, so after a viral load test next week, the dopamine challenge is the next step.
Anyone done this test before? Was it helpful?
All of these helped but I could only choose one of them when I tried more the first one went blank again. All tested and all made a difference for me
Free T4, Free T3, reverse T3 Thyroid tests MTHFR mutations DHEA blood test Serum B12 Blood Vitamin D levels
My apologies – I had the wrong format for the test – it’s been fixed now and you should,, I think be able to go back and enter the right tests.
Thanks Cort for fixing the tests poll.
Where do you get your MTHFR mutations tested?
It only allows you to select 1 item at a time and if you try to select a second it moves the check mark. I have had many tests that have lead to treatment. I can resubmit once this is fixed.
This survey is SUCH a good idea!
Thanks Kevin – it’s fixed.
Cort, you are wonderful for pulling all this together. I don’t know where you get the energy! Thank you.
I was very confused by the buttons. I’m 76 & have been dealing with fibro since about 1974. Even with a basal temperature of 94.2 I couldn’t get a doc to consider trying thyroid, because my blood levels were in the range (the very bottom). I had every possible symptom, but the sacred test won. The only doc believing I have fibro is my allergist, Dr. George Kroker at Allergy Associates of La Crosse. In 1996 I went to a new doc for fatigue. Again the Sacred test. She wanted me on statins, apparently not knowing that low thyroid means high cholesterol. (PS: It wasn’t really high.) She said I needed to diet & exercise. I CAME BECAUSE I CAN’T EXERCISE. I said I had allergies, so she insisted I had asthma because her uncle was an allergist &she prescribed steroids. I refused because I don’t have asthma. She kept pumping me about depression, so I said I sometimes feel down because I’m unable to accomplish much. She prescribed antidepressant & I refused. She concluded I was lazy & uncooperative. I went to a different doc & asked if he was willing to work with me on WELLNESS. He tried me on low dose thyroid & I was able to exercise, my cholesterol went down, hair/skin improved …etc. He punted me to my allergist when I needed a higher dose. Rheumatologists told me fibro doesn’t exist. Only one gave me the quick trigger point test & concluded I didn’t have fibro …ignoring that I just had trigger point work done & was on pain meds. My chiro (functional medicine) suggested 23andME so I had that done, but can’t find anyone to interpret. He found the antibodies to gluten in my stool & that made the difference. I continue on thyroid & off gluten & am much better, but there is plenty of room for improvement.
Phyllis so glad you rid yourself of that first doc! For me getting the thyroid addressed plus diet changes based on the MRT food sensitivity testing made a big difference (some need to remove gluten too).
Your experiences, Phyllis, are so familiar. My sister and I have both had really bad experiences with the Sacred Tests! We have the symptoms, but don’t show up on the tests, therefore the symptoms “don’t exist”? When we do test high or low on something, the docs usually brush it off and say it doesn’t mean anything or it’s a false positive. I’ve had a couple of iron tests that showed I was anemic, but treatment didn’t make me feel any better. Apparently the CFS fatigue was/is massively worse than the anemia fatigue.
About the 23andMe analysis: I’m guessing you had it done recently? The FDA, in their usual inept fashion, has suspended their medical interpretation of the DNA results. My sister and I got ours analyzed before the FDA suspension, and we’ve been really glad we did. I just sent you an invitation to share genomes with medical data at 23andMe. You can use my analysis to search for some things on your raw data.
23andMe doesn’t have any idea what to look for CFS-wise, but we ran a search for TRPM3, TRPC4 and TRPA1 from the HealthRising article Australian Study Pinpoints Possible Gene Issues in Chronic Fatigue Syndrome. We got 254, 115, and 37 hits respectively. I’ve emailed those results to Professor Marshall-Gradisnik.
Kim & Kelly Derrick
I just ordered the 23 & Me test. I would love also to compare results
You’ll need to set up your account. Once you have your results hover over Family & Friends at the top of the Home page. Then choose Manage Sharing. Search for me or my sister by name and send us an invitation to share genomes with medical data. I takes about 6 weeks to get your results. You might want to search your raw data for the TRPM3, TRPC4, AND TRPA1 genes. I’ll try to watch for your invitation.
Thanks so much. I look forward to the results…hopefully they will have meaning.
There are several websites that interpret the 23andMe raw data, some are free and some charge a bit. Genetic Genie is a good free one to get started. It does both methylation mutations and detox genes.
Wheres the salivary Adrenal Stress Index (ASI)?…as far as i’m concerned, its the most important and telling test out there, if interpreted correctly.
It is not allowing me to check more than one box per question so it is useless to try to answer. Am I the only one having this problem?
No – everyone did (sigh). It’s fixed now – sorry about that.
Forgot to say before. The Sleep specialist also told me he thought my Thyroid med was too high and that might be a problem. He was right.
Cut it back.
No other Dr. caught it.
🙂 Hang in there, you are doing great!
Such a valuable enquiry to make. One which I hope many will respond to.
I wonder if a straight-forward question could be devised which could assemble data on tests offered by mainstream, orthodox/ ‘state’ doctors and consultants (for those in the UK, for example, these are tests done on the NHS) as opposed to those tests sought out and paid for by patients seeking help from private laboratories etc eg RED labs used by Prof de Meirleir; Genova Diagnostics and so many more. To flag up how many thousands patients often spend on tests which may or may not lead to treatments which help, would add a useful dimension in terms of highlighting the enormous private cost of being ill with this awful multi-system illness.
I ticked the 10-25 tests box. Not one test, after 8 years have led to beneificial treatment but the most clues have been given by private lab tests. However, their results, sometimes even done by the same lab but months apart, have often proved inconsistent leading one to question the veracity of private labs, even those who enjoy great reputations. It has left me inherently mistrustful of all tests, no better off health-wise and distinctly emptier of pocket. And I don’t beleive this is a rare experience.
I agree, Lucinda – I’ve spent thousands via private GP (who helped), Breakspear (couldn’t afford their suggested full treatment but spent thousands on their supplements – they said I still had an active virus as well as just about everything else you can think of), and Optimum Health (who are very good – but again, thousands with little improvement). I’ve been investigated for endocrine disorders – told to pull my socks up, although consultant’s registrar said to me, ‘That’s funny – you appear to still have an active virus.’ I have consistently elevated alk phos (which is about the only blood test they’re interested – the other ones the NHS docs just go – hmm that’s interesting – bye, then …) – but a new doctor (young) has joined up some dots and noticed I have very low Vit D and is treating me for that. I’m 17 years and counting and quite frankly getting more and more ill at my core and don’t expect to live into grand old age – this thing is going to kill me, I’m sure.
The NHS in the UK has, unfortunately, given ME over – lock stock and barrel – to the psychs and their “fuctional” medicine. There’s even a new speciality called “neuropsychiatry” – ha! In other words, we’re all imagining it. We have been abandoned to the psychiatrists.
Lucinda- This is a great post. One thing my Sleep Specialist told me was unless my symptoms got worse-there was no need to do more testing more than every 9-12 months.
Some are getting tested every 3-4 mo. Ridiculous and after awhile, your insurance won’t pay.
Don’t care how good they are.
Cort, since inflammation is talked about a lot I’d be interested in how many folks have had a C-reactive protein and if so was inflammation high. I just had it and had very little.
I think you’re not alone. Montoya says CRP is not an accurate measure of inflammation in ME/CFS…
That’s interesting – I wonder why? And why would Stanford require it for their referral if they don’t think it’s an accurate measurement? I’ll ask when I’m out there…
Maybe it’s because it doesn’t give the result they want!! Mine is low as well.
How does Montoya measure inflammation in CFS?
Betsy: I have ME/CFS and had a c-reactive protein blood test (CRP) about 15 years ago. I was flaring at the time; reacting to chemical cleaners used at a children’s daycare where I was helping out. I couldn’t stop coughing and became so congested with mucous, that I felt like I was drowning. However, when at home on the weekend, I would remarkably recover. As soon as I returned to the daycare on Monday all my symptoms would reappear and I would get progressively worse with each passing day. By Friday, my reaction and symptoms were unbearable. I was reacting to the chemical cleaners they used and had to quit.
My CRP is never normal, but it is much lower when I am not experiencing an over-reaction to something my body deems foreign (eg chemicals, alcohol, medications, vaccinations etc). Levels of CRP below one are considered low; levels of 1 – 3 are considered moderately elevated; levels greater than 3 are considered high. Levels greater than 10 are usually only seen with active, obvious inflammatory processes. My CRP level when tested was 30. I believe it probably depends on, if you are reacting to something (like I was) for levels of CRP to test very high.
That’s interesting Rachael. Mine is .5 and I wasn’t feeling well the day it was drawn so unlike your case mine was still low even during a time when something was going on. ( I can on occasion feel pretty normal.) My doctor would never order it for me – it’s great you could get yours tested and correlate it to the chemicals and get away from them.
My guess is that Stanford requires it – so as to consider and R/O other conditions that do caused elevated CRP. I am not aware of it being considered a marker seen in CFS.
Yes that’s probably it Joyce. There was a whole list of required tests before going there.
Rachel- You may also want to be checked for GERD. This involves the Esohagus. Mine is severe. It was causing coughing all the time and I developed mild Asthma from it.
Am on Med for it-which I hate, but it is better. I had pulled a chest muscle
from coughing -or I would not have had it checked.
Yes, my C-reactive protein has been high on and off. Not consistent. How many people have had totally normal thyroid tests yet improved on low dose thyroid trial ? This seems important. Did anyone’s body temp return to 98.6 plus/minus on thyroid?
I have been on thyroid meds for years for Hashimoto’s thyroiditis and have had a good doc that kept me in the end of the range that made me feel better. Yet, My body temp when I check is always subnormal, but my thyroid supplement keeps my thyroid in the normal range. My temp is not because of my thyroid disease.
I notice my body temp drops lowest when I am crashing and observe that I have not had a fever in years…..I’ve been sick – sore throat, swollen lymph glands, sinus infections, etc – but no fever. My temp stays below normal.
I think it is either dysautonomia or else it is a sign of an exhausted immune system, too tired to even work up the energy to create fever!
I read a recent article about work by a Dr. Bell postulating that CFS is actually a form of slow, chronic sepsis. Acute septic shock is what kills you quickly in a hospital when your immune system floods your body in response to massive infection.
Yet Symptoms of sepsis are eerily familiar to those of us with ME – change in mental status, confusion, sometimes fever but typically subnormal temperature!, bacterial or other infection present (obviously), acidosis, excess waste products in blood, decreased oxygen, problems breathing, rapid breath, abnormal heart function (rapid heart rate, palpitations, lowered blood pressure), nausea, diarrhea, lightheadedness, extreme weakness…..and of course, suppressed or abnormal immune systems make you more vulnerable to this. All very interesting.
Kate, there are people who believe that many people are hypothyroid even when their blood tests look normal. They say that you should go by symptoms such a low body temperature and low energy, etc. Maybe you have seen the book/website “Stop the Thyroid Madness.” The idea is that often people need T3 in addition to T4 – Armour thyroid or cytomel. Or even T3 only.
I would also love to see the comparison between the tests we’ve been put thru vs the ones that helped 🙂
I thought of that- couldn’t figure out how to do without duplicating the entire list again which I thought might be too much. Maybe for another survey..
Wow, Cort I hope you have a lot of help to deal with the flood of info you will get.
The thing I found after many tests and related ‘treatments’ for my daughter who became ill at 13 and is now second year university (19) was this:
….the supplementation of the recommended substances, after many and varied tests over a prolonged period, seemed to help her hold a somewhat even keel with highs and lows, usually related to educational stresses and female hormonal changes.
(There were sadly some exceptionally poor pieces of advice from doctors which caused severe setbacks..but that’s another story….perhaps another survey!)
Despite my constant queries to the treating doctors about how her liver may be coping with all this foreign input I was sadly ignored. I believe the standard reading on the average blood test will only reveal liver damage when it has become quite advanced.
Finally I requested a liver function test which showed that her liver processes are currently compromised so therefore I ask: how can other supplements be doing their job? Or heaven forbid…are they retarding her improvement by storing more toxins in her body which are not being excreted?
So we have temporarily changed tack to provide liver support, both dietary and supplement.
Wait and see! Not sure how long the ship takes to turn around. I imagine it is slow.
Thanks for your enduring efforts in this field Cort, I hope when a cure is found you can be somehow acknowledged for all the info gathering efforts and information dissemination….pushing the barrow for all those who don’t have the ability to do so.
I am waiting to have glucagon stimulation test. Doctor wanted to do some blood work first. I had a severe TBI in 1979. Thank you for the article you did. Not all specialists do this test.My doctor is in NYC.
Cort, in my experience, I think the most important of all the tests that I took was the DNA testing done to check my MTHFR status, I did have the MTHFR defect, which seems to be pretty common for those of us with FM and CFS. I learned that I needed to take the L-5-MTHF supplement daily and I needed B-6 in the form of P-5-P along with it. Without both of those, my brain fog and fatigue is extreme! If I go without those for even a week, I go in to such a CFS crash that I’m bedridden. I suggest that both of those tests be taken, in addition to the standard blood tests for thyroid dysfunction, etc. Also, the blood tests for B levels and folate levels can show ‘normal’ in those of us with the MTHFR defect because those vitamins stay in the blood stream instead of going into the cells where they can help us best. Taking the more bioavailable forms of these (L-5-MTHF and P-5-P) helps it get into the cells). I’m not sure of your opinion on this, but I share my experience in hopes that it may help someone else.
Hi Mary, I went to a doctor who is more on the functional medicine side and he seemed to think the MTHFR wasn’t worth pursuing. I’ll tell ya, it’s hard to know what to believe, but I’m glad you’ve been helped by treating it. I’m on the waiting list for Stanford, only going since I have friends/family in the area, and I hope they test all these things too and aren’t looking solely for viruses.
In my experience the focus was on herpes viruses and mycoplasma
Are you saying that the focus at the Standford Clinic is on herpes virus and mycoplasma? I am also on the waiting list and was hopeful of more.
Are all of you being seen by Stanford CFS specialist? It took me 3+ years on wait list to get in. I have been seeing PA only for 1.5 yrs and all they have been interested in is putting me on Valcyte for EBV and other viral titers and anti-inflammatory. They don’t seem interested in actually treating any infections or dealing with the pain issue at all. I asked repeatedly to be seen in infectious disease side of clinic (which is separate) and have been told PA would check –but I never get a response. They don’t even want to run tests and if I ask for help getting IVIG or other, the response is that they are not opposed to it and even support it– but can’t help me, I’m referred to my other docs who have to be ones to try and get real help. I am very greatful for the formal diagnosis from them as well as valcyte which does help energy: improvement on it was so very gradual and took about 9 months so I didn’t really notice until I looked back at what I wasn’t able to do before (like get out of bed and shower). However, I am still severely impaired energy wise and if I miss even one dose I start going downhill immediately. I finally get to see the doc in September and am hoping for some real help with actual treatment strategy. So far it seems as though they want ME to help THEM prove their theory CFS is caused by virus but not actually treat me for my various infections and I was hoping for more than that. Maybe the PA is just not authorized to do more? I do know they are trying very hard to see as many patients as they can . Although I do have mycoplasma, they haven’t really talked about it much, focus is on mostly EBV and HHV6. Do you all recommend the LDN?
Hi Ladybug64 – this is what I was afraid of and I have a doctor here who will let me try anti virals and were it not for my family/ friends out there I’d not make the trip. Actually with the money it’ll cost maybe I should reconsider anyway. My biggest curiosity is the blood work they do from a specific lab as I’ve only had basic tests. But on the other hand, who cares what it shows if I can take anti virals anyway. I called them last week to see if I could start them or would that mess up my blood work and she said that it wouldn’t which surprised me – I’d think it would ….
I have been to Stanford and not all tests are done at the specialty labs anymore, many of the tests are just done at the lab at Standford. They are pretty much focused on viruses and micoplasma and all they will offer is antivirals and antibiotics in my experience. They want your primary care doctor to handle everything else. It was nice to have all the infectious stuff tested all at once and find out which herpes viruses I have been exposed to (if your IGG is negative it is unlikely you’ve ever had the virus). On the advice of my primary care doctor I decided not to take the antibiotic and antiviral right now as both can have heavy duty side effects (which of course Stanford says has never been a problem) and my CFS is moderate. Don’t get me wrong they are great people doing essential work but they are looking at the disease in a very specific way.
Thanks so much James. I do think that a virus is my problem and that’s why I was interested in Stanford and got a referral in but when I really thought about it, given their narrow focus, wondered if I could just have a doctor here try me on the anti virals. I don’t blame you for not taking them if you’re moderate. Do you know if it’s ok to try them without blood work and do you remember about how much the total cost was? Thanks!
PS – wait list is now just 6-12 months. I was set back 3.5 months because my doctor forgot to send the referral forms in..
The only thing that helped my EBV and CMV , which I had at the same time was Immune Globulin injections.
Had an Infectious Disease Dr. who was treating Aids patiense treat me and am still on them weekly.
Along with Hydroxy B-12 inj now.
Don’t know what they are using now-mine becomes reactivated sometimes. Not often.
23andme plus the Dr. Yasko test matched and confirmed most of what was in my health history. MTHFR and interrelated results included were invaluable. Finding out about Oxalate poisoning and its SNP-breaking ability to stop healthy methylation was astonishing and had never been mentioned by any practitioner before yet is central to my recovery. Online Pyoluria self-test questionnaire was also invaluable for indicating that has been another undiscovered issue for me, not even on the radar, and that zinc glycinate, P-5-P and 1300 mg. organic Evening Primrose Oil were needed ongoing. All supplements must be in bioavailable form so they go right through the mito membranes; many supplements, or most, do not. This is a marathon, not a sprint, as we all know; many have run out of time; but persistence and thinking outside the conventional sources really do pay off. Chinese pulse diagnosis, if done by an expert, may be the most valuable testing of all to determine over time if one is headed in the right direction. Exogenous causes of disease from environmental causes must be addressed and eliminated if the whole supplement and med thing is not to become a hamster wheel. In her recent free Anxiety Summit, researcher Trudy Scott, C.N. summarized at least 64 factors which can create chronic illness mimicking NEID. Many of her presenters had indeed recovered from stuff frequently covered on HR.
Thanks Becca! The anxiety summit sounds like it was a good one.
Thank you so much for your information.
My Dr. recommended the 23 and Me test, but as I understand it now they do not give any interpretation. How did you get your test interpreted?
Also, you said “All supplements must be in bioavailable form so they go right through the mito membranes; many supplements, or most, do not. ”
Do you have any recommendations for brands, or how to tell what is and isn’t actually bioavailable?
Prashanti – Once you get 23andme results you can go to genetic genie. If you allow them access to your 23andme profile, they will do a methylation analysis – complete with your exact mutations on different alleles. It was free when I did it a year ago.
Wow thanks for the info on the 23 & Me test.
To Cort and all of you,
I am so very grateful for this format and communication. There is no one else in my world that understands the fatigue. Nor is there anyone I know (including the medical field) with the expertise and access to expertise that I find here.
I know everyone is DIFFERENT. However, please some of you consider the PLANT BASED DIET. No meat-little fish mostly
I could tell a difference in 7-8 days on it. I am taking a new Protein Powder now with greens /veggies and berries daily. Drink.
I am also Gluten free. I need Protein, but this diet has really made a difference in me, and my Brain and Body.
Sorry, can you spell out NEID and HR? Not sure what those acronyms mean. THanks!
What is MTHFR pleas?
MTHFR are gene mutations found by doing a DNA test.
For more info…http://mthfr.net/
MTHFR is a gene mutation that directly affects the production of cellular energy. You can have it heterogeneous or homogenous, which means one or two pathways can be blocked. In my case, I have one block, which means i can convert folic acid from food into methylfolate the form actually used by the cells – only about 50-70% of normal. My daughter has two blocks which means she can only convert about 30%. This is significant driver of your ability to produce energy for your body’s needs. This was a valuable test for me along with thyroid function and vitamin/mineral levels. It was a chiropractor who recognized my illness and did the nutritional and gene testing, as weill as tests showing genetic sensitivities to various medications (which ones I am hypersensitive). You can get that tested and also do a Spectracell test which indicates deficiencies in nutrients at the cellular level versus what’s just floating around in your blood unable to be converted and used.
l am pretty sure l may have left some of them out; my testing’s (always) extensive. As l’d had chest xrays and so on (also heart tests and such) but we already knew what l had sort of doubt that those had to do w/ my diagnosis or treatment.. He always does some things in order to rule out certain illnesses or to make sure that something else isn’t in there (such as Lyme; some patents have that one too). He always does T cell levels (and vitamin levels) so
should l be low w/ D (or another one) l can be told ‘you need to take more D Jane.’
My treatments have been effective although they’d be better if l could only afford this one blasted thing (which l can’t quite). Just my theory; one sort of ‘new’ treatment
has been very good on people on my same protocol.
A gp asked me the Canadian questionnaire and diagnosed me/fm Three years later 5 specialists later agreed with Mir pet sleep tilt and psych evaluations. Imagine if the flu was diagnosed one symptom at a time ent for runny nose, optometrist for itchy eyes, muscles for aches and pains, one for elevated temperature see how stupid the medical profession looks now. I have ptsd from dr abuse.
I was first diagnosed in 1989 with CFS from EBV. Then several yrs later with Fibro. Regardless of any tests, they have never led to any improvement. I’m on Cymbalta for depression. Is it part of the Fibro or would I have depression if I wasn’t ill, who knows? But the med helps for the depression but not the pain (initially it did). What is helping my pain levels now is the Butran’s pain patch. But It wasn’t prescribed to me due to Fibro. I have several herniated discs in my lower spine & neck (haven’t had an accident). The patch is helping with both disc problem as well as the Fibro pain.
I was on LDN that helped with Fibro pain for a few months prior to the pain patch. Until I started with another cycle of pain that resembles a sinus infection. LDN only worked for my Fibro pain. It did not work on sinus, arthritis, migraine, or disc pain.
My next test will be in June for an MRI of my brain to check my pituitary. This has been ordered by my eye specialist. Note: earlier this year I had labs done for Cushings Disease as my Endocrinologist had suggested I was presenting but came back negative. So now I have a 2nd dr focusing on my pituitary. The HPA axis is a mess in those of us with CFS/Fibro, so we’ll see.
I should add that I did have all of my amalgam (silver) fillings removed by a health centered dentist. After having 8 of them removed my endurance had greatly improved as well as my fatigue levels at that time. I would highly recommend anyone to do this. For more info on this my dentist wrote a book that the ADA did not want him to write. mercury-free.com
Sorry for the novel, though it might be helpful to some.
Novels are appreciated – thanks.
Donna, glad having your amalgam fillings removed helped. I had that done about five years ago, didn’t help me. (And boy, was it expensive.) (Not to mention my regular dentist was rather miffed that I went to a different dentist to have that done.) Still glad I had it done, as a number of people said it helped them and who knows what will wind up helping with this d*@)#&^! illness.
Donna- I am a registered Dental Hygienist. I could not agree with you more on the Amalgum /Mercury fillings. The ADA will not admit this as they would be hit with lawsuits. I had all mine removed as my dentist denied all of it.
At that particular time I also had dmso iv . The IV almost did me in. Too strong.
However still think I made the right decision on the fillings removed!!!
GOOD FOR YOU!!!
I went years breathing the vapors from a Cavitron electronic scaler with no mask.
If anyone has these removed -make sure you are properly draped , so you will not inhale the Mercury from the removal!!!!
Mercury fillings can be sneakily dangerous in the mouth or during/after removal. The 23andme and Yasko tests can show whether the bodymind system has genes that will not allow mercury in certain forms to chelate out of the body: This is very important to consider. In certain DNA-compromised people, if chelation of any type is attempted, the mercury and other dumbing-down toxic metals are merely knocked out of the fatty tissues and recycled to other more vulnerable areas of the body like the brain/neuro system which might further damage overall functioning. Only people heavily experienced with methylation tend to be exposed to this info on the forums. Detox can be a nightmare if it happens at all. So it is wise to get your complete 23/Yasko done and interpreted by one or preferably more interpreters; this is newer info which almost no docs have. The one supplement so far that seems to bypass this danger is the patented Modified Citrus Pectin; pulls out the bad and leaves in the good stuff, as has been mentioned before. Swanson and many other companies now carry it. The interpreter of my 23 test took it for two months, retook the metals tests, and all of it had disappeared. BTW the less broadminded of the medical folks can and do induce PTSD in vulnerable patients through arrogant skepticism, denial, withholding treatment, outright verbal abuse. Then the goodhearted visionary doctors have to plough through another unnecessary layer of complexity, adding to clinic time. The iatrogenic abuse stuff is a rampant culture in the rapidly fading Old Paradigm medicine which so often disses females, but the field is opening up and there is more hope — especially if you are able to fire/educate such a doc and save someone else a lot of misery.
A Great Book for anyone having any back or cervacle issues is Michael Flanagans’
THE DOWNSIDE OF UPRITE POSTURE. This is even for injured backs or neck/shoulders.
I also have seroneg RA. Treatment for that has made me feel better generally but has not helped with fibro and all of my fatigue
I have the diagnosis of fibromyalgia and joint hypermobility syndrome and have been told years ago by my primary care dr (who was also an osteopath) that I had me/cfs but she never wrote that diagnosis down in my records and since that dr 9 years ago I have never had that diagnosis given to me, despite the fact that my medical records enabled me to participate in a research project for the NIH ( by Fred Frieberg of IAFME) and my illness began to the day witth a flu-like (upper respiratory and gastrointestinal that landed me in the ER) I’m not sure how useful these surveys could be Cort as so many of us have been denied an accurate diagnos and end up with only the fibromyalgia one (which is bad enough, but is definitely incomplete diagnosis) I have a feeling that there are a lot of people who have ME/CFS or SEID but whose DRs have failed to diagnose them properly in records, and then there is the issue of having no money or energy to seek out the DRS who actually could help change this and possibly give better care options that medications alone
I accidentally checked the 5-HIAA option (the iPhone interface is terrible – you can hardly see the checkboxes and radio buttons). Anyway you can fix it? Also, where are the options for the Toolkit?
Am I missing NK cell function and number hidden by another name? That’s a test that is almost a marker. “Alterations of natural killer (NK) cell count and function
and perturbations in cytokine production have been the biomarkers
studied most extensively as they have shown the most promising results.” p. 148, IOM report.
This is great idea for a survey, Cort, and should be helpful both in taking it, and in reading the comments, and in the results. Very worth disseminating.
Forgive me if you all know what this is; I’m new to this site.
You mentioned p. 148, IOM report. What is the IOM Report. I googled it and there are all kinds of reports.
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
The blood volume test got me IV saline along w/Epogen injs. and that has probably helped me the most. The amino Acid profile, which I added as ‘other’ gave me a diagnosis of malabsorption which allowed me to go on amino acid IV’s which in turn, helped me gain weight and not appear to be ‘wasting’ away. The positive herpesvirus antibodies resulted in Valtrex and Vistide which increase my quality of life and general well-being.
I have taken just about every test on the list and many have been positive or abnormal, but only these three have resulted in improvement for me in 25 years of illness..
Sorry Cort- Postsare on there now.
Best Poll you have had. Many very informative posts.
Alot of smart, well informed people.
Has anyone on this site seen Dr. Lapp in NC or Dr. Bradstreet in Ga.??
Thanks for all you do for everyone.
Corinne, I hope you’re the one who finds phones in the woods cause if so it sounds like you’re doing better? I had a heart ablation a year ago for PVC’s and asked the cardiologist about blood volume since I’d read about it on these boards and he said since my hemoglobin was fine then my blood volume was, that that was how you measure it. Sounds like there’s more to it than that…..
Cort, when one gets an alert to a response to a blog post in their email is there any way, if they want to respond to that particular post and hit reply, that they can be taken right to the post they want to reply to? Not complaining, just wondering….
Cort, forget it, I see the name now. What’s discouraging is I can’t blame it on brain fog, just general spaciness…sorry.
I had cavitation surgery in 2003 and it made a remarkable change in my ability to work full time, be a hospice nurse to my father, and be a caregiver for my mother in my home for 3 years. However my ME/fibro symptoms began to worsen in 2011. I had to retire from work last December, and now am mostly confined to home because of fatigue. I am on acyclovir for EBV,CMV, and parvo virus increase in my blood, but after 2 months am worse. I now have shortness of breath, chest pressure, and slow heart beat with advanced autonomic nervous system dysfunction. I have to sit up to sleep, and can no longer engage in anything socially because of fatigue.
Does anyone have heart problems as a result of ME or viral reactivation? I am having evaluation this coming week
Your symptoms sound like POTS. Have you tested for POTS?
I don’t have the tachycardia, and this can happen when I am sitting and try to sing hymns in church…lightheaded, feel like I am going to collapse, like my body battery has run out of energy. I have bradycardia instead.
It sounds like you may need a pace maker, if you don’t have one already.
I have neurally mediated hypotension and mitral valve prolapse. I get palpitations, dizziness, fainting, pressure on my chest which also feels like being short of breath and increased heart rate. It comes and goes. If I’m doing a lot of resting with minor activity to keep my limbs mobile then I have only mild or no heart/resp symptoms. From all the research I’ve read, mitral valve prolapse is fairly common with ME, same with the inability of the ribs to expand for deep breathing as the muscles lose their “power” or energy just like the rest of our body and it feels like you can’t breathe fully which also makes your chest feel heavy. Now of course, anyone with any of these symptoms needs to be seen by a cardiologist or have your primary care doctor order tests relating to heart and pulmonary function.
Thanks for the reply, Katie. I had an EKG yesterday that showed only bradycardia. I have a followup appt next week and will ask for a monitor for 24 hours since the test was only for one minute. Then I will be referred to a cardiologist if there is a problem. I can’t imagine having a stress test since I cannot exercise, and am allergic to so many chemicals that a chemically induced one could cause me problems. But I think the bradycardia is a problem, and that may be causing my muscles and organs to not get enough oxygen with sleep. I also have
I have struggled with CFS/ME and Fibro for 40+ years. Have spent a load of money on a wide variety of tests with no improvement shown. The only plus is verification I do have “something”…that it’s not all in my mind. I do know I have the correct number of NKC, but none of them work.
I thank you Cort for your unending search for a way to help us “out” of CFS/ME…God bless you!
That’s interesting. i have a genetic mutation – Fabry’s disease, which means that protein is not properly digested and leaves a toxin throughout the body. I have an infusion of the enzyme that i am deficient in to correct this. but i am also advised to have a low protein diet. I probably inherited this disease from my father. He was a vegetarian and lived to 91!
Susanne, I never heard of that genetic mutation. How did you find out about it? I’m just about to send off for 23andMe to find out if I have any mutations. I wouldn’t be too happy on a low protein diet, but you have to do what you have to do.
Susanne, do pancreatic digestive enzymes help you digest protein?
Speaking of digestive enzymes, I’ve started taking a supplement called HistDAO, which contains an enzyme that breaks down histamine. I’ve been itching like a hound so I did some research and found out that you can be deficient in the enzyme that breaks down histamine in your food. The supplement contains that enzyme. Taking it with every meal seems to help the itching. But it’s EXPENSIVE. And it’s hard to remember to take it 15 minutes before eating. I don’t know if this histamine problem is part of CFS or just an add on.
I just need to eat the usual healthy diet.. but avoid red meat. My diagnosis for years had been FM and altho’ this was wrong, the advise on life style was suitable to the condition…… so at least i was doing most of the right things.
As I’ve been living with this for 68 years I,m not on top form!…… so I can’t write much. But if you would like to know more go to http://www.focusonfabry.com or
I’m in the UK – so the NHS covers my treatment. It’s expensive!
How’s Obamacare working out?
All the best
Wow, Fabry’s sounds challenging! I’m glad that you got diagnosed and that your healthy diet helps out at least a little. How old were you when you finally got diagnosed?
I don’t have Obamacare. I get very good health insurance through my husband’s job and now partially through Medicare. I looked into Obamacare for my daughter when she turned 26 and found that with many policies you don’t get much choice of doctor, so we paid more for private insurance.
It’s good that the NIH covers your treatment.
Only diagnosed last year!.. Mothers have a 50/50 chance of passing it to their children. Unfortunately one of my sons has it. He is showing symptoms at the age of 42, but we have a less severe variant. Classic fabry’s is more challenging..Father’s only pass it to daughters, and women used to be considered asymptomatic., but it has only recently been recognised that women can have a significant disease burden and are not just “carriers” -…..Awful word.
i feel guilty but at least my son will get treatment now.
Susanne, what a bummer that it took so long for you to get diagnosed! But at least the cardiologist caught it. No guilt about passing it along to your son! I’m sure he’s happy to be alive and happy to have you as his mom.
I’ve had 14 of the tests listed above, and my sister’s had about that many. As I noted above, when we do test high or low on something, the docs usually brush it off and say it doesn’t mean anything or it’s a false positive. I had a potassium ion channel test that was negative, and yet when we searched for TRPM3, TRPC4 and TRPA1 (from HealthRising article Australian Study Pinpoints Possible Gene Issues in CFS) we both got 254, 115, and 37 hits respectively. Does that mean I should have the other ion channels tested? I think I’ll talk to my doctor about it, but I won’t be holding my breath on results.
And may I just make the observation that testing for Sjögren’s by removing a saliva gland is about the stupidest thing I’ve ever heard. I have Sjögren’s and Sjögren’s patients have dry mouth (xerostoma) right? So they want me to give up one of my precious saliva glands just to prove to them that I really do have dry mouth? That’s just stupid! There are other ways of diagnosing Sjögren’s like Rheumatoid Factor, Schirmer’s test, etc. Why do they insist on causing further damage, making your mouth even drier, just to prove that what you are saying about your symptoms is true? Sometimes I feel like I must have LIAR tattooed across my forehead – or hypochondriac.
In the old days, they used to treat the symptoms. Now they treat the test results. It never occurs to them that their Sacred Tests are inadequate. It is especially frustrating when you do have a high or low result and it gets ignored. They keep telling me I can’t be a zebra, but I am!
Only when I went to a endocrinologist with a holistic outlook (who of course does not take insurance) did I finally get some tests that showed something. For me the two that were dramatic were Amino Acids and Pregnenolone, both blood tests available through the regular Quest lab that any doctor can order. Both were very low, well below the lab’s normal ranges. Supplementing with both helped stabilize me (weight loss was an issue) and cleared up some brain fog and environmental sensitivities. However I still have exercise intolerance, food allergies and other CFS/ME issues. I also have had repeated thyroid testing that was only borderline (TSH 3.5-5.5), however I finally agreed to start taking thyroid as well and it too seems to have helped a bit but in a non-specific way. I am also trying LDN but can’t say for sure yet if it helps. I seem to tolerate only a very small amount (0.5mg) without side effects so I may not be getting the full benefit.
In any case all these organizations and doctors say there are no tests for CFS/ME and advocate against testing calling it unnecessary make me want to scream because while there is no specific diagnostic test there are tests that can help at least some people and in my case may have at least saved me from getting far worse since that was the direction things were going. It’s been 8 years since I had those tests and the benefits of supplementing have been maintained).
I’ve had a lot of the tests listed. But what has actually helped is a red blood cell magnesium test that turned up a magnesium deficiency. After that I started getting magnesium shots which got rid of very uncomfortable muscle tightness and also restless leg syndrome that was interrupting my sleep. I was surprised to have a deficiency because I’ve taken magnesium pills for decades. The shots also reduce the incidence of atypical chest pain.
The sleep study was a good one – it turned up the restless leg syndrome (for which I found nutritional treatments) and sleep apnea. I managed to tolerate the CPAP machine for 9 months and then quit and found a way to sleep on my side so that I don’t get apnea.
I’ve been tested for all the thyroid tests and am low on T3, but I can’t tolerate it – I’ve tried many times and get terrible side effects.
The first test for vitamin D showed that I was deficient. Now I take more. I can’t say I feel better.
A test for Epstein-Barr showed that I had it – I spent 6 months on various anti-virals. I think they helped but I got side effects on all of them, so I kept switching ending up on Valcyte which made my liver pretty unhappy and made me feel awful. I don’t know whether to go back on any of these antivirals – my doctors says the retest for EBV wouldn’t be accurate.
I also tested low on immunoglobulin and spent 6 months on home infusions of IGG – 12 grams a week. I got wiped out for two days a week and couldn’t tell if the treatment was helping, so I quit. Now I get 2 grams of IGG a week IM. No idea if it helps but I can tolerate it.
I take HRT – estradiol patches and natural progesterone pills. These are my favorite drugs. They allow me to sleep! A couple of years ago my PCP increased the dose of estradiol and I finally got rid of sleep interrupting hot flashes (almost entirely). Another doctor loves to test my blood levels of these hormones and is happy with the results.
Last spring I did a series of IV treatments – 10 grams of vitamin C, B vitamins, some amino acids, and glutathione. That seemed to help, so I’m trying it again. Expensive. And I’m trying 5 mg IM shots of methylcobalamine every day for two weeks. I can’t tell if they help yet.
So many tests! So many treatments! So few results! I’ve had CFS for 7 years. The last two years have been worse. I’m spending more time in bed and I’ve stopped working. The whole thing is a big bummer.
If I were to go to a nationally known CFS doctor, which one would people recommend? My local doc is not completely methodical and he is on his way to retirement, working only 2 days a week.
Hi Rachael – gosh it’s so discouraging – to think of all you’re doing and still not well. I started HRT ( am 61) and no benefit at all, in fact side effects. May be too much testosterone. But I tried them years ago and nothing. I was interested in what your doc said re the EBV retesting, that it wouldn’t be accurate – that’s what I would think too but I called Stanford and the PA told me that if I started anti virals before seeing them it wouldn’t affect the blood work. That surprised me…..
Betsy, YES! Discouraging. I keep remembering other things I’ve tried like low dose naltrexone. I was so hopeful about that, but I got terrible side effects. I woke up the second night and felt like my chest was EXPLODING. Weird. Much lower doses just gave me chest pain.
I’m sorry you got no benefit from HRT. What kind were you using? It’s important to use the right stuff. I tried testosterone, too. I liked it, but then there were the side effects. I don’t know if my CFS doctor is right about retesting EBV not being accurate. It seems to me that I’ve read about people getting retested. Have you gone to Stanford yet?
No, haven’t been – on wait list. I take LDN but it doesn’t help the fatigue at all. It may help this creepy crawly feeling I used to get on occasion because I realized lately I haven’t had it, but who knows.
The hormones are bioidentical – I take a sublingual pill – started with a cream. I think my side effects are from too much testosterone.
The best thing I’ve had is ultram but nothing has been a game changer.
A few comments from my personal experience.
You are taking HRT. Have you checked your DHEA levels or tried supplementing with it? (Actually I’m not sure how accurate any of the tests are.) When I went through perimenopause and menopause my Dr. (what a gem…she’s gone now) said the body will cry to produce estrogen and that estrogen can be produced from the adrenals. Because my estrogen dropped so low so fast, I think that contributed to depleting the adrenals. Supplementing with DHEA as well as estrogen and progesterone was a life saver.
My tests for EBV showed that I have had it a long time. No one seems to know what to do about it. One Dr. is giving me methalated B12 and folate to boost the immune system assuming that will eventually take care of the EBV. My T cells are low.
I also had the sleep apnea test and I hate the CPAP. I think I’m doing OK on this wierd suction cup thing that pulls your tongue forward. I don’t snore anymore with it. It’s strange and a little pricey, but for me well worth it. https://goodmorningsnoresolution.com/
Prashanti, I agree that naturopathic medicines, which are mostly nutritional supplements are the safest way to go though sometimes you need regular meds as well. I have a masters degree in nutrition and prescribe a lot of supplements for myself. I notice that a lot of the chronic fatigue doctors in the U.S. prescribe the ones I’m already using.
I have tried 5HTP at the suggestion of my chronic fatigue doctor. It gave me chest pain, which seems weird. But I researched it and found that it increases serotonin levels in the blood as well as in the brain. Too much serotonin in the blood stream can cause vasoconstriction of the coronary arteries. I think that’s why I got chest pain. I found online that other people have gotten this side effect from 5HTP. It’s good that it doesn’t bother you.
About DHEA – I have had my level tested at various times years ago. I can’t remember how I did at first. Years later another doctor thought it was too high and didn’t want me to take it, not sure why. Years ago it seemed to help. Recently I’ve started taking a little again – 1/4 of a 25 mg sublingual lozenge from Life Extension. I notice that it promotes chin hairs and libido. I can’t say whether it gives me relief from fatigue the way it used to.
Recently I also started taking 200 mg of 7KETO DHEA, which supposedly doesn’t turn into sex hormones. I’ve been trying it because I read that it increases the conversion of the storage form of thyroid (T4) into the active form (T3). My body apparently doesn’t do this conversion well enough leaving me hypothyroid in spite of taking levothyroxin. I’ve tried taking T3 but I get bad side effects.
Good that you are taking bioidentical hormones. Maybe the dose is too low. When my holistic doc gave me bioidentical hormones in a cream, it just didn’t work. Estriol was not strong enough. I got a million hot flashes. Maybe you could get them to leave out the testosterone.
I wonder if the creepy crawly feeling you get is restless leg syndrome. I have a couple of solutions to that – magnesium shots and large doses of co-enzymeQ10. 300 mg got rid of the creepy crawlies. Lower doses didn’t work.
Other things that I’ve tried: herbal antivirals (olive leaf and monolauren). Can’t tell if they did anything. And ProBoost – it’s supposed to retune your immune system away from autoimmune reactions and toward being more effective against microbes. I can’t say I noticed anything.
Have you had an ECG for those chest pains? A cardiologist diagnosed my Fabry’s disease.
That’s interesting that a cardiologist diagnosed your Fabry’s.
My chest pain has been checked out by a cardiologist – EKG, stress test, stress echocardiogram, nuclear stress test. There were a few suspicious results, but the thallium stress test indicated clear coronary arteries. And the chest pain has been going on intermittently for decades, so the cardiologist called it “atypical angina.” And he lost interest. I looked online and found a few different possibilities.
There is CFS doctor in the states named Martin Lerner who thinks that some CFS patients get chest pain from infections in the heart muscle that can go away when it’s treated with antivirals. Maybe I should go see him – but he’s pretty far away.
I omitted to say I originally had a sleep study done mid-2014, but because I was dealing with acute insomnia at the time, the machine hardly registered any sleep at all. The results still came back as having a good chance as having sleep apnoea.
I researched the options for treating the sleep apnoea, but couldn’t afford the treatment costs eg to hire or buy a machine. I decided after more research that I would attempt to lose 10% of my body weight as this is said to decrease sleep apnoea.
I successfully lost the said 10% of weight, by walking and diet changes.
In 2015, I offered to be part of a sleep study, for which patients needed to have both insomnia and sleep apnoea. I did a test to check my sleep apnoea, and the test came back negative. Even though I didn’t sleep well that night, it still showed no sign of sleep apnoea.
Even though that is good news, I still need to take medication to help me fall asleep, and this has also helped me develop good sleep habits along with sleep hygiene.
I take 5HTP to help me sleep, and have been on this treatment for about 9 months. Before this I was hyper-aware and could not wind down at night to sleep.
Even walking and losing weight didn’t assist the sleep issue.
I am writing to you because I believe people have the right to know how they can treat this condition, but they first have to be diagnosed.
It was 4.5 years into F.M. that I was finally diagnosed after being accused of being depressed.
Even after diagnosis I was offered anti-depressants and pain killers as the only option from 2 specialists which I rejected.
I have found my own state of the art treatment from a Naturopath, and have been following this for 9 months as well.
One thing that needs to happen is for Naturopath’s to be accepted as Medical Practicioners and not labelled as unscientific and unmedical.
Then the treatment could be listed under Medicare and people could access natural health care, which has long-term benefits compared to pharmaceutical medicine.
Medicines are expensive from a Naturopath but are not life-threatening or debilitating as many pharmaceutical medicines and treatments are.
Thanks for reading this. I hope that the government listens to people who are really struggling to get a diagnosis and get treatment for this condition.
What did the naturopath prescribe for FM? I’m interested because I think that supplements tend to be much safer than med. I have CFS not FM, but I have a dear friend who is horribly ill with FM.
Thanks for the reply Katie.. I had an EKG yesterday which only showed bradycardia. I have a followup appt next week and will ask for a 24 hr heart monitor. I think my slow heart rate is keeping enough oxygen from getting to muscles and organs when I sleep, so I am more fatigued and have more pain. I have sympathetic/parasympathetic dysfunction so that doesn’t help either.
Then I will ask for a cardiologist. I will also have 3 month checkup of viral load after being on acyclovir to see if the drug is helping at all.
Hi Betsy. Is there a way to get a copy of the list of required tests?
I haven’t been yet JA so don’t have a list but maybe someone who has been will see this and post. I do know they give you the required tests when you go there and then you can have them done wherever you live – this is what the lady who made my appt told me, so unlike I had thought, they don’t require their lab although she said you could have them done there if you want, but there must not be anything special about their lab in terms of detecting what they’re looking for. Does seem like a person could do this without the stress and expense of actually going there…..
Is there a way to get a copy of Stanford’s required tests?
Thank you for what you are doing.
Has anyone ever done a survey re which meds helped them the most?
Also it’s interesting that I have found that some treatments helped for years and then didn’t help anymore. I’m 76 and have had this pain since I was 38.
I’ve been diagnosed with FM,RA, aortic valve stenosis, and have had cervicle spine surgery x2. I find it hard to figure out what pain is from what.
I’ve had multiple tests and multiple treatments, but none have actually helped. I am doing daily injections of Nexavir and B-12 and taking multiple supplements as well as treating my hypothyroidism and taking the anti-viral Valtrex, but I m not getting any better. I just keep getting worse. I’ve been trying to get better for more than 10 years and at this point, I’m completely hopeless.
If the Nexavir doesn’t help me after 190 days, I’m giving up.
Good luck KV!
Have you tried LDN?
Thanks for the replies. It’s good to know someone cares about me. I have tried LDN (Low Dose Naltrexone) and in fact am taking it right now. I have been taking it for more than a year. In addition, I have been on other antivirals besides Valtrex including Valcyte, which I was on for 3 years.
I will definitely ask my doctor about amantadine and hope my insurance will cover it since I pay out of pocket for my Nexavir, B12 and Armour thyroid.
I have tried IV vitamin C as well as all sorts of different multi-vitamin IV infusions for years. I’m not sure where to get glutathione although I’ve heard lots about it.
I’ve had my adrenal function checked numerous times and am on a low dose of cortisol, but it doesn’t make me feel any different.
If I could just make it to Reno and get into the clinical trials, I’m sure Ampligen would work for me. It’s just a matter of being able to physically do so. I’d just leave all my stuff behind, I guess. I don’t know what else to do. I just need to get well or be dead. Because this existing in limbo has been going on too long.
I’ve missed so much of life, including the last years before my mother was diagnosed with Alzheimer’s. And I don’t want to miss the rest of her years because I’m too sick to be with her.
Remember KV you are not alone. Hang in there.
KV, you have tried a lot of things! I’m pretty sure amantadine is inexpensive. The usual dose is 100 mg twice a day. I found that it gave me insomnia – crazy dreams all night long. I went done to 100 mg in the a.m. but still got sleep interruption. The person I know who got 80% better from amantadine did not get side effects.
I did some research and found that one CFS doc in NY state prescribed amantadine in much lower doses – like 25 mg. My doctor was willing for me to try this and prescribed a liquid version that could be used to get a small dose. I haven’t gotten around to trying the low dose yet.
Good luck with finding treatments that work!
KV, I wish you the very best in your healing.
You mentioned clincal trials in Reno. What are they? I am sort of near there
KV, don’t give up! I’ve had this stupid illness (CFS) for 7 years and I think I’m finally starting to feel better and there are bunch of other things I haven’t tried yet. Here are some possibilities.
– Have you tried other antivirals besides Valtrex? There are lots of them. Valcyte is supposed to be the most effective. It is expensive, however. I know someone who got well with amantadine.
– Have you tried IV vitamin C? I’ve read that it’s one of the treatment that works the best. Last spring I did a series of IVs with 5 g of vitamin C plus B’s plus a big slug of glutathione and I felt a lot better afterwards. I’m not sure why I stopped, but I’ve started again and I have started having some good days or good parts of days.
– Have you tried any of the alternative thyroid treatments that include T3 the active form of thyroid? There is info about this on the website stopthethyroidmadness.com.
– Have you had your adrenal function checked out?
– Next on my list of things to try are saunas and hyperbaric oxygen.
I hope you start to feel better!
Well, I just threw off the results a little bit. I took the quiz a 2nd time, but really only had the same result.
I don’t know how you’d structure this, but perhaps it would be more useful to be able to select which tests you’ve had, AND a) whether or not they led to any improvement in lab results, AND/OR b) whether or not they’ve led to any improvement in how you actually felt, which is a different thing.
Dr Klimas told me that taking Imunovir improved my immune markers a lot, but I didn’t feel any better. More recently, Dr Rey (same clinic) told me that my most recent blood tests showed a lot of inflammation; hard to say if I was feeling any worse at the time those tests were done. She recommended increasing my LDN (low-dose naltrexone) gradually until I’m taking 4.5mg in the morning and 4.5mg in the evening (increasing it too fast can lead to unpleasant side effects, headaches being one, I forget what the others are). Also suggested I start taking the K-Pax Immune supplement. I started that at the full recommended dose, felt like I was burning up. Backed off, am now sneaking up on the full dose more gradually. Do I actually feel any better? Nah. But I keep hoping.
Hang in there, everyone.