YippeeKi YOW !!
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Anytime m'dear .... and thank you for the thoughty kindness of your attributing it !!!!(Gonna have to use that phrase sometimes too... with your permission. )
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Anytime m'dear .... and thank you for the thoughty kindness of your attributing it !!!!(Gonna have to use that phrase sometimes too... with your permission. )
Well, if he pushed hard enough to leave a bruise, I'd guess that's why.
Seems like this would only happen if you have GI motility problems. There are tests for that if you want to pursue that route.
That's a possibility... but it could also be that immune problems are driving neuro problems which are driving the gut problems in the form of dysautonomia.
The calprot, FOB, transferrin and lactoferrin are all looking for blood in your stool, not infections per se. There are lots of reasons why you might have blood in the stool (you should talk to a real doctor about this if you're worried), but it can go with things like colon cancer or IBD. It's good to know you don't have blood, but it's not all that relevant to ME/CFS as far as I know. There are also better tests for colon cancer, if you're an age to get tested for that. No cancer doc would do this set of tests and then tell you you don't have it.
Cryptosporidium is a parasite that you get from drinking contaminated water, say swimming in a dirty pond. Giardia is similar. Both cause dramatic diarrhea a few days after drinking the pond water, so it's likely you would remember and connect the two events. these diseases are also not magic or rare, so any normal doctor would already have tested you for them. You surely don't need to see an ME/CFS specialist for those tests. Entamoeba is also usually caught by drinking contaminated water and is rare outside developing countries. You can find all this stuff on CDC website if you'd like more details.
Basically, he tested you for things that an infectious disease doc would test you for if you told her "Doc I've got this horrible case of diarrhea that's so bad I'm dehydrating, and it all started after a trip to the lake when I fell off the boat into the water". I'm betting that's not how your ME/CFS started and if you had said this to your doc she'd have given you these tests already. They're certainly not about ME/CFS. The docs that do think ME/CFS starts with a GI infection mostly point at GI viruses, not parasites and amoebas.
And hey, if ME/CFS is a nonspecific response to any infection (mold, enterovirus, mono, COVID, etc), then fixating on intestinal parasites is slightly silly. Any rate, they don't seem to be an issue for you.
@YippeeKi YOW !! @JudeeAnd the state licensing board.
Wow! That just makes it even worse.Actually I have had ALL these tests, by real doctors, done by real labs, covered by my insurance.
That's my plan too.So far nothing has really been found in any of my tests (like many of us). I think its time to stop wasting money and just hang in there until Rob Davis or someone else finds a cure. I have wasted enough money on quacks.
so if you are ok with spending the money (around 4500$) and dont mind driving to Reno , then why not, We have all wasted so much time and money on this disease with nothing to show for it. And I like you to come back and share your story here. Maybe I was an outlier and maybe he was a great doctor and maybe he just didnt like me.I have an appointment with KDM in August. I'm in two minds as to whether I should cancel it now.
Thanks for your reply. It was helpful. I've decided to go ahead with the appointment.so if you are ok with spending the money (around 4500$) and dont mind driving to Reno , then why not, We have all wasted so much time and money on this disease with nothing to show for it. And I like you to come back and share your story here. Maybe I was an outlier and maybe he was a great doctor and maybe he just didnt like me.
the only thing im concerned about is the way he will push on your abdomen,. I think the solution is either to tell him it hurts the first time he pushes down (if you say it doesnt hurt he might make sure he pushes again hard enough to make it hurt). Or you tell him downright that you rather not have that examination because you have abdominal pain. Or just brace yourself for it, Otherwise I see no harm in it,
the one thing he might be able to provide you with (not sure because its not available in the US) is filgotinib, I have a feeling it might be useful for CFS (but its just based on my own theory).
Also please read the other stories about him on the cfs subreddit and no this forum, please dont be deterred just by once bad experience.
,Great ! But please come back and share your experience also, so that others can benefit from your experience as well. You can just continue the thread.Thanks for your reply. It was helpful. I've decided to go ahead with the appointment.
When was your appointment? Maybe after my complaint they changed their policy ?All the costs for my appointment have been presented to me before hand in a detailed list sorry to hear your experience wasn't as transparent.
I wish I had some explanation of this to give. My best guess is that they don't want to be associated with KDM's shenanigans and are worried about legal implications for themselves. Still a strange choice to say "inappropriate" though.It seems very strange that they are completely distancing themselves from KDM since he is practicing out of their office and their website includes him and his services.
At least you got him there!what they did with me (not disclosing the cost ahead of time ) is actually illegal.
I hate to hear that a fellow PWC has had such a regrettable experience after having sought him out in good faith at considerable expense.The following is my awful experience with a so called "CFS expert" known as KDM (Kenny Leo De Meirleir). I share my story so that maybe I can save some of you from wasting thousands of dollars and potentially being hurt by this crook.
I really think KDM, with the full knowledge of this Whittemore Peterson Institute is engaged in embezzling vulnerable patients out of thousands of dollars per person.
If an enterprise is doing business over state lines it is likely subject to FTC governance. You might want to check there about piercing the illusive shields of protection.Update: The office of KDM wouldnt reply to me about refunding me the charges, so I had to try to go through the credit card company to reverse the charges.
However he ended up prevailing in the end and I was not able to reverse the charges. The credit card company said that he has rendered the services that he had offered.
This is nonsense as my original thread explains, he never told me how much I would have to pay and they made me sign all these forms before I was told the total amount and even the total amount was incorrect.
But me careful because this guy is very litigious and has set of several LLCs and has set up a pretty effective system to scam patients. If you give him any money, consider it gone, because you will not be able to see a dime of that again.
Fromwhat I remember, that place fell apart very quickly and included the whole nonsence and insanity of that whack job reseracher who is a conspiracy nut. I forget her name. I don't know weather she lost her mind or if she was hiding how her brain worked when she got the job.
If an enterprise is doing business over state lines it is likely subject to FTC governance. You might want to check there about piercing the illusive shields of protection.
Yeah, you can't get your money back due to having the blood work done, seeing him and signing papers. It will only make your feel more victimised and angry if you keep up a losing fight about this.