experience with Dr Chheda at the Open Medicine Institute

[TrixieStix]

@Basilico
Except for the MTHFR genetic testing, that one was downright rejected for being unnecessary and not proven to be useful. That one cost 500$ which I could have gotten through 23andme for 200$ (with a lot more additional information) H

Actually a proper MTHFR test tells you more than 23andme testing can as they report results alphabetically and cannot tell you which strand a mutation is on which means it cannot for example tell you if your are "Compound Heterozygous" or not which means that there is one mutation on each strand of DNA.

On MTHFR sites you will see a lot of talk about being Compound Heterozygous and I actually have one of each of the mutations that it requires to be CH so I erroneously assumed my results meant I was compound heterozygous, but then someone here on PR explained to me that it is impossible to know from 23andme testing given it's limitations and lack of reporting which strand a mutation is on. Unfortunately I have never seen any of the popular MTHFR website mention this fact.

 

[TrixieStix]

I am a patient of Dr. Chheda and so far my insurance has covered all my testing, even the Igenex testing. I am sorry you are having difficulty getting it covered.

For me the big amount of testing I had done at OMI has proved to be helpful as it has uncovered an abnormality that is not associated with ME/CFS and that could be very important in figuring out what all is going on with me. It also helped to rule out other things. There is no way I would have ever gotten my primary doctor or specialists to run those tests, and the test of mine that is unexpectedly abnormal is one I never would have even known to ask to be tested.

Also while Dr. Chheda has for now put down ME/CFS/SEID as my diagnosis she is still actively looking into other conditions that could also fit my symptoms. For me it's been a great thing and a big relief to finally be working with a doctor who is knowledgeable about ME/CFS. That alone has been worth the travel and expense. My primary doctor is sympathetic, but it's just not an area he knows much about. Even diagnosing ME/CFS for disability purposes requires a doctor have specific knowledge as the rules here in the US are very specific in what they require for an ME/CFS diagnosis to be accepted. Even that was too much for my primary doctor to take on.

I respect that we each have different experiences with doctors, but just wanted to share mine thus far.

 

[fireflymd]

I am a patient of Dr. Chheda and so far my insurance has covered all my testing, even the Igenex testing. I am sorry you are having difficulty getting it covered.

For me the big amount of testing I had done at OMI has proved to be helpful as it has uncovered an abnormality that is not associated with ME/CFS and that could be very important in figuring out what all is going on with me. It also helped to rule out other things. There is no way I would have ever gotten my primary doctor or specialists to run those tests, and the test of mine that is unexpectedly abnormal is one I never would have even known to ask to be tested.

Also while Dr. Chheda has for now put down ME/CFS/SEID as my diagnosis she is still actively looking into other conditions that could also fit my symptoms. For me it's been a great thing and a big relief to finally be working with a doctor who is knowledgeable about ME/CFS. That alone has been worth the travel and expense. My primary doctor is sympathetic, but it's just not an area he knows much about. Even diagnosing ME/CFS for disability purposes requires a doctor have specific knowledge as the rules here in the US are very specific in what they require for an ME/CFS diagnosis to be accepted. Even that was too much for my primary doctor to take on.

I respect that we each have different experiences with doctors, but just wanted to share mine thus far.

What lab work did Dr. Chedda order for you?

 

[*GG*]

I am a patient of Dr. Chheda and so far my insurance has covered all my testing, even the Igenex testing. I am sorry you are having difficulty getting it covered.

For me the big amount of testing I had done at OMI has proved to be helpful as it has uncovered an abnormality that is not associated with ME/CFS and that could be very important in figuring out what all is going on with me. It also helped to rule out other things. There is no way I would have ever gotten my primary doctor or specialists to run those tests, and the test of mine that is unexpectedly abnormal is one I never would have even known to ask to be tested.


I respect that we each have different experiences with doctors, but just wanted to share mine thus far.

That is great that Igenex Lyme testing was covered! I had that down, and think I had to pay out of pocket a little for that test, think I had great insurance at the time, not my HMO?

Can you share what test was done to uncover the abnormality, could be helpful for others to consider

It would be great if most of us had advocates with us during medical visits. I go with questions written, and do take some notes on what is said afterwards, but wouldn't doubt that I miss some things. Brain fog and fatigue do not help with that!

GG

 

[hmnr asg]

@TrixieStix sounds like you had a great experience with them! that is wonderful. I hope they find something useful for you. Again, this is my personal opinion, but i think they go on a wild goose chase with all these blood tests. If you give the healthiest person enough blood work you will eventually find values that might seem out of the normal. The problem is, correlation doesnt always mean causation. These values are very likely to have no effect on the individual's health (these acceptable ranges are approximates and some people just have different baselines) or even if they are clinically significant they may have zero consequence in terms of our underlying symptoms. Of course, for a desperate patient who needs something, anything, to verify that what they are going through is real and not just in their head, these numbers and "abnormal" results can be comforting, but at the end of the day, it's just a waste of time. None of these tests are scientifically proven to be of any benefit to CFS, MTHFR etc, and the IGENEX lyme is deemed "crackpot" by many people even on the lyme disease forums. I know in the absence of "real" medical answers sometimes we loosen our expectations in terms of the scientific rigor behind the procedures we undertake. Of course this is my humble opinion

 

[hmnr asg]

Hey @*GG* I am attaching the tests given by OMI. I tried to remove anything that could identify "the patient". If you notice anything on this that might give away the identity of "the patient", please let me know.

Here it is:
https://drive.google.com/file/d/0ByT-dHEhQsiFZm1OWXkyb0xORzg/view?usp=sharing

H

 

[Alvin2]

For me the big amount of testing I had done at OMI has proved to be helpful as it has uncovered an abnormality that is not associated with ME/CFS and that could be very important in figuring out what all is going on with me.

This is my concern, i started a thread on it but i don't know if it quite achieved my aims

f you give the healthiest person enough blood work you will eventually find values that might seem out of the normal. The problem is, correlation doesnt always mean causation

very true, sometimes humans chase and chase and will latch onto something just to feel like we have some control or hope.