Aperiomics testing - Could someone recommend a doctor?

[lookingforanswers4]

Hi everyone,

I am continuing trying to find answers for my ongoing health issues and I am thinking of doing the Aperiomics test. The problem is, I need a doctor to sign off on it. I recently stopped going to my doctor because he wouldn't go outside the box and I know for a fact he would not sign off on this. Could anyone recommend a doctor they had order this for them? Feel free to pm me. Not sure if doctors names are allowed on a thread?

 

[valentinelynx]

It might help if you said where you are so people who live in your area can make recommendations. As far as I know, doctor's names are OK. For a general recommendation, you might try looking for an integrative physician in your area. They are doctors who "integrate" so-called complementary or alternative medicine into their practices. It generally means they are open to all kinds of things. Best of luck, and let us know if you find anything of value!

 

[gbells]

I've found two problems with integrative doctors. First, they are very expensive. Second, they tend to be not objective and will basically let you try anything until you can't afford them anymore. I used one for about a year (Joanne Pizzino MD who now works through Parsley Health) , tried an antiviral and some herbs and left basically little better than I started. She even wanted to charge me to research treatments on the web.

 

[Cipher]

Hi everyone,

I am continuing trying to find answers for my ongoing health issues and I am thinking of doing the Aperiomics test. The problem is, I need a doctor to sign off on it. I recently stopped going to my doctor because he wouldn't go outside the box and I know for a fact he would not sign off on this. Could anyone recommend a doctor they had order this for them? Feel free to pm me. Not sure if doctors names are allowed on a thread?

Here's a map of ME/CFS doctors you might find helpful.

A lot of infections linked to ME/CFS doesn't shed genetic material into the blood (but are active in the body's tissue nonetheless). Aperiomic's analysis method, Deep Shotgun Metagenomic Sequencing, is like PCR on steroids. But it can only detect an infection if there's genetic material present in the sample. Using Aperiomics to analyze tissue biopsies (stomach or muscle for example) is probably a better idea than analyzing blood/plasma-samples in the context of ME/CFS.

Another strategy is to analyze antibody titers for ME/CFS associated infections. You can read more about that on Hip's roadmap site, it's great.

 

[lookingforanswers4]

It might help if you said where you are so people who live in your area can make recommendations. As far as I know, doctor's names are OK. For a general recommendation, you might try looking for an integrative physician in your area. They are doctors who "integrate" so-called complementary or alternative medicine into their practices. It generally means they are open to all kinds of things. Best of luck, and let us know if you find anything of value!

I am only doing remote visits so it doesn't matter where they are, so long as they can do tele medicine and ability to do so with someone in another state.

 

[lookingforanswers4]

Here's a map of ME/CFS doctors you might find helpful.

A lot of infections linked to ME/CFS doesn't shed genetic material into the blood (but are active in the body's tissue nonetheless). Aperiomic's analysis method, Deep Shotgun Metagenomic Sequencing, is like PCR on steroids. But it can only detect an infection if there's genetic material present in the sample. Using Aperiomics to analyze tissue biopsies (stomach or muscle for example) is probably a better idea than analyzing blood/plasma-samples in the context of ME/CFS.

Another strategy is to analyze antibody titers for ME/CFS associated infections. You can read more about that on Hip's roadmap site, it's great.

I have seen this and it does look great. I have seen a few people find answers with Aperiomics but I do agree that it can't all be found through this test. I do know a few that found mystery infections so thought it may be able to add to the bigger picture.

 

[Hip]

I am continuing trying to find answers for my ongoing health issues and I am thinking of doing the Aperiomics test.

Are you considering Aperiomics because you want to test for viruses in the blood? If so, it may not detect the usual ME/CFS-associated viruses, as PCR testing of the blood usually does not detect these either. Antibody testing is what ME/CFS doctors usually use for viral detection.

Also, you have to pay extra to Aperiomics if you want them to test for RNA viruses like coxsackievirus B and echovirus (common viruses in ME/CFS). Normally they will just test for DNA viruses like EBV, HHV-6 and cytomegalovirus.

I think the Aperiomics test is very interesting, but I am not sure how appropriate it is in the context of ME/CFS. Do you know of any ME/CFS doctors which use this test?

 

[lookingforanswers4]

Are you considering Aperiomics because you want to test for viruses in the blood? If so, it may not detect the usual ME/CFS-associated viruses, as PCR testing of the blood usually does not detect these either. Antibody testing is what ME/CFS doctors usually use for viral detection.

Also, you have to pay extra to Aperiomics if you want them to test for RNA viruses like coxsackievirus B and echovirus (common viruses in ME/CFS). Normally they will just test for DNA viruses like EBV, HHV-6 and cytomegalovirus.

I think the Aperiomics test is very interesting, but I am not sure how appropriate it is in the context of ME/CFS. Do you know of any ME/CFS doctors which use this test?

No, I am not using it for viruses. My health issues are somewhat of a mystery. I have been diagnosed with everything under the sun: mold, lyme, CFS, yet no treatments for these have worked so trying to look outside of the box more.

 

[Hip]

No, I am not using it for viruses. My health issues are somewhat of a mystery. I have been diagnosed with everything under the sun: mold, lyme, CFS, yet no treatments for these have worked so trying to look outside of the box more.

Have you been tested for the usual viruses linked to ME/CFS by the appropriate antibody tests, and if so, have you tried the antiviral drug or immunomodulator approach (eg Valcyte, oxymatrine, tenofovir)?

 

[lookingforanswers4]

I have not. Only EBV. My CFS diagnoses was clinical and mold and lyme treatments haven't gotten me better.

 

[Wishful]

I have been diagnosed with everything under the sun: mold, lyme,

Were those diagnoses based on actual test results (ie. the numbers for lyme show a definite active infection), or were they just guesses based on "those symptoms sound something like lyme disease"? I know that several doctors gave me prescriptions based on wild guesses based on my symptoms, since the tests didn't show anything conclusive.

It's certainly possible that extensive testing could reveal something definite, which could be treated. It's also possible that having all the possible medical tests available today would show nothing definite. It's also possible that having all those tests done would give you some number of false positives, and the treatments for them could make your ME worse, with additional problems from being poorer and crashing from the stress of all the testing. It all comes down to cost/benefit analysis. If it seemed highly likely that you had a certain chronic infection, or spinal issues, or whatever, then testing might be worthwhile. Getting tested for a super-rare disease that you only vaguely fit the symptomatology for, probably isn't, unless you have unlimited wealth.

Also, if you're reading advertising for private medical testing, keep in mind that they profit from selling tests, not from finding answers.

 

[lookingforanswers4]

How is anyone supposed to know what they have wrong if they don't do testing though? I don't even know I have ME either. I have tested positive for lyme disease via igenex and dna connexions, all my Shoemaker labs were off and the new GENIE test showed I had CIRS, yet treatment doesn't work. it is frustrating to say the least.

 

[Wishful]

How is anyone supposed to know what they have wrong if they don't do testing though?

That's the point: that doing even exhaustive testing doesn't guarantee that you'll find the answer. Medical science simply doesn't have the tests for many serious diseases. I've had several doctors admit that mostly we don't know what is going on in bodies. Doing the regular tests for known diseases is sensible. How far to go beyond that, with private testing, is a question only you can answer. Some people here have gotten extensive testing done, and believe that it helped them find treatments and supplements that made a difference. Others have done similar testing and taken lots of treatments and supplements based on the results and found nothing that worked.

It's like buying lottery tickets: maybe you'll win big, and maybe you'll just lose money.

I don't even know I have ME either.

I don't have a professional diagnosis either; I just fit the criteria, and all the doctors I'd seen hadn't come up with any alternatives (FWIW they didn't mention ME either). I simply reached a point where I saw no value in further testing. I don't remember how many years that took, but the negative results wore me down eventually. It's been quite a few years since I've bothered to see a doctor for anything ME related.

 

[lookingforanswers4]

I think I am just desperate at this point and still looking for answers. I have been told things fit but never make progress when doing them. It is frustrating.

 

[Wishful]

I understand the desperation part. I remember it all too well myself. Going from doctor to doctor, hoping that one would provide THE ANSWER! Yes, I too got the kind of response of "Well, those symptoms sort of fit disease X, so here's a prescription to try.", but of course the drugs didn't work because having a couple of vaguely defined symptoms in common with a disease doesn't mean that you really do have it. If you listed several of your symptoms and did a search for diseases that matched them, you'd probably get thousands of matches, and that's only for known diseases. If you did exhaustive testing, I expect you'd find quite a few differences from what is supposed to be standard/normal results, but I think that would be true of a typical healthy person (we all have our minor abnormalities), and that treatments to 'fix' those differences would mostly not have an effect on your ME.

None of my successes with treating my ME came from doctors or from test results. Most came from paying attention to changes in my ME and then figuring out what caused them. LDN was something I read about, possibly here on PR, and thought it was worth trying, and it worked for me. Food poisoning cured me of type IV food sensitivity that started with my ME, so that was just pure (Happy! ) accident. T2 and cumin were from observations of unexpected improvement, and other improvements came from noticing what things to avoid.

Someone else here on PR is a proponent for exhaustive testing and treatments based on the abnormalities found, and says that doing so was worthwhile for him. It's not a one answer fits all issue. Maybe someone will recommend a doctor and claim wonderful improvements from that doctor.

I think part of the problem is that some PWME have definite comorbid conditions that testing can find, and can then be treated, for noticeable improvements, and thus success stories. Other people lack the simple issues that can be found that way. I had several doctors tell me that I appeared to be among the healthiest patients that he had, because all the medical tests showed normal results. The tests didn't cover whatever is involved in ME.

For me personally, I'll wait until someone figures out what to test for for ME. I think that improvements from even the most well-known ME specialists are unlikely. Too many disappointments from doctors so far, I suppose.

 

[lookingforanswers4]

I think it is trial and error, but at the same time you don't want to be shooting in the dark. All my labs for mold illness were out of range and a few other tests showed the same pattern, but I also tested positive for two lyme disease tests. I do still think there is something missing though and a lot of patients have gone through countless treatments and eventually something works. It is just a long road getting there, if at all. I have been sick for 6 years with not even 5 percent of improvement which is really tough.