Resource HIP's Chronic Fatigue Syndrome Testing and Treatment Roadmap

[Cort]

Cort submitted a new resource:

HIP's Chronic Fatigue Syndrome Testing and Treatment Roadmap - ME/CFS Patients provides extensive resource for testing and treatment

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Chronic Fatigue Syndrome (ME/CFS) - A Roadmap for Testing and Treatment Part I: Diagnosis by Hip

A superb resource on diagnosing the problems found in ME/CFS with an emphasis on pathogen testing, antivirals, adjunct treatments many doctors (low dose naltrexone/B12/methylation), gut issues (IBS, SIBO, Celiac, etc.), POTS and others.

Also includes test laboratories, a list of US, UK and European ME/CFS experts and a place to get good bulk...

Read more about this resource...

 

[Edie]

Cort submitted a new resource:

HIP's Chronic Fatigue Syndrome Testing and Treatment Roadmap - ME/CFS Patients provides extensive resource for testing and treatment



Read more about this resource...

Thyroid testing: most MDs will only order the TSH . It can be showing normal, but if your T4 or your T3 is abnormal, you may have a problem. That's what

happened to me and I was severely hypothyroid. T3 is the active form and mine was rock bottom and my body temperature was too low. My naturopath

treated me with T3 and I recovered a lot of energy and my temperature returned to normal. Check out Wilson's Syndrome (not Wilson's disease)

 

[Cort]

Thyroid testing: most MDs will only order the TSH . It can be showing normal, but if your T4 or your T3 is abnormal, you may have a problem. That's what

happened to me and I was severely hypothyroid. T3 is the active form and mine was rock bottom and my body temperature was too low. My naturopath

treated me with T3 and I recovered a lot of energy and my temperature returned to normal. Check out Wilson's Syndrome (not Wilson's disease)

Thanks Edie - that's great news and a subject I plan to do a blog on at some point (unless you would like to do one?)

 

[Edie]

Thanks Edie - that's great news and a subject I plan to do a blog on at some point (unless you would like to do one?)

Cort, I have nothing but time, being retired. I'd be happy to do the blog. I need some time though to do proper research and then I can add
my personal experiences with T3 treatment. This fall be OK?

 

[Lissa]

Oooooh, I for one would be thrilled to hear more about the relationship between thyroid and ME/CFS.

Currently struggling with low thyroid, but for all the dialing up and down of T4 and T3 prescriptions, I'm feeling almost worse than before I started the meds.

Hair falling out, gained 20 lbs- which is YUGE on my 5'2" frame. Now my Reverse T3 is super high despite doing "all the right" dose dabbling.

My question-- WTF is going on in ME/CFS that makes the body shift for the worse - even as you are trying to assist it?!

Now I wonder if I made a huge mistake messing with thyroid --- maybe TSH needed to be where it was for other systems to function properly? Seems like a train wreck now, as my body isn't doing what's expected. The "normal" protocol that works for others seems to be a massive fail in my case.

So what now???!!! GAAAAHHHH!!!! Anyone else experience this?

 

[Edie]

Oooooh, I for one would be thrilled to hear more about the relationship between thyroid and ME/CFS.

Currently struggling with low thyroid, but for all the dialing up and down of T4 and T3 prescriptions, I'm feeling almost worse than before I started the meds.

Hair falling out, gained 20 lbs- which is YUGE on my 5'2" frame. Now my Reverse T3 is super high despite doing "all the right" dose dabbling.

My question-- WTF is going on in ME/CFS that makes the body shift for the worse - even as you are trying to assist it?!

Now I wonder if I made a huge mistake messing with thyroid --- maybe TSH needed to be where it was for other systems to function properly? Seems like a train wreck now, as my body isn't doing what's expected. The "normal" protocol that works for others seems to be a massive fail in my case.

So what now???!!! GAAAAHHHH!!!! Anyone else experience this?

Hi Lissa, So sorry to hear you're having such a battle with your Thyroid Meds. Hope you're working with a qualified Doctor. Mine is a Naturopath Doctor.

I googled Dr. Myhil and Thyroid. She explains that ME/CFS has general suppression of the hypothalamic-pituitary-adrenal axis., which causes the cascading

problems experienced, including Thyroid problems. She writes more interesting articles on ME/CFS.

My older sister who also is hypothyroid, was having to go to emergency a few times this past year for extremely high blood pressure. Finally, the last

emergency doctor noticed that her Doctor had raised her thyroid med. too high. She could of had a stroke.

I certainly can remember the roller coaster ride of hypothyroidism. Wilson Syndrome protocol worked very well for me, but may not be someone else's

particular thyroid problem. A good book explaining mine and how to treat is available on amazon.com WILSON'S SYNDROME DOCTOR'S MANUAL.

 

[Lissa]

Hi Lissa, So sorry to hear you're having such a battle with your Thyroid Meds. Hope you're working with a qualified Doctor. Mine is a Naturopath Doctor.

I googled Dr. Myhil and Thyroid. She explains that ME/CFS has general suppression of the hypothalamic-pituitary-adrenal axis., which causes the cascading

problems experienced, including Thyroid problems. She writes more interesting articles on ME/CFS.

My older sister who also is hypothyroid, was having to go to emergency a few times this past year for extremely high blood pressure. Finally, the last

emergency doctor noticed that her Doctor had raised her thyroid med. too high. She could of had a stroke.

I certainly can remember the roller coaster ride of hypothyroidism. Wilson Syndrome protocol worked very well for me, but may not be someone else's

particular thyroid problem. A good book explaining mine and how to treat is available on amazon.com WILSON'S SYNDROME DOCTOR'S MANUAL.

Thank you @Edie ! Great info. I'm reading about Wilson's Syndrome this morning and finding that it seems to fit my case history quite well. Definitely have low body temps, poor heat regulation, hair loss, and ridiculous weight gain - despite TSH #'s being within "old school normal" ranges.

I do have a great NP... Very knowledgable and thyroid stuff is one of his specialties. He's also quite open minded, a good listener, and willing to learn as I keep presenting new things to try.

What's interesting is that yesterday afternoon, my NP and I decided to try dropping the T4 and using only the slow release T3 - based on something I'd read about ME/CFS thyroid problems possibly needing to be treated differently. Sounds like this is totally on track with the Wilson's Syndrome protocol.

Go figure! We may have stumbled on to something here! . Hopefully THIS will finally help things stabilize for me. I'll report back as things progress.

 

[Hezza]

@Cort @Issie @Who Me? @San Diego @Lissa Please help!!!

Have a last minute cardiologist appointment tomorrow. Never been to one before. The minimum goal will be to rule out a structural heart problem.

My maximum goal would be to have tests done that would show up any of the usual abnormalities of ME/CFS/POTS/FM or EDS hyper mobile. What tests should I suggest or request? Please any suggestions welcome!!!

 

[Hezza]

@Cort @Issie @Who Me? @San Diego @Lissa Please help!!!

Have a last minute cardiologist appointment tomorrow. Never been to one before. The minimum goal will be to rule out a structural heart problem.

My maximum goal would be to have tests done that would show up any of the usual abnormalities of ME/CFS/POTS/FM or EDS hyper mobile. What tests should I suggest or request? Please any suggestions welcome!!!

Addendum: He is not an autonomic cardiologist. Just a regular small town cardiologist. I have no tilt table results, only poor mans which was positive for POTS. Daxor blood volume test results in the severe range.

 

[Who Me?]

I'm clueless too. Never been to one but others you tagged can help. Also maybe @Remy

But let me know how it turns out. I need
To see one too at some point.

 

[Remy]

Addendum: He is not an autonomic cardiologist. Just a regular small town cardiologist. I have no tilt table results, only poor mans which was positive for POTS. Daxor blood volume test results in the severe range.

This dyautonomia panel has to go to Mayo...it can be drawn at Quest though around here but I'm sure there are other options.

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

 

[Lissa]

Not sure I have anything to offer... I was going to say tilt table, but just saw your addendum. All I can think of is to differentiate OI from POTS maybe? Blood Pressure changes vs increased Heart Rate upon standing?

Oh and I personally (just my own opinion -- so take it with a grain of salt!) would NOT let them do any cardio stress testing. It could make you much much worse if the small town doc isn't familiar with ME/CFS, and insists you push it. You probably already know that, but figured I should mention it just in case.

When I saw a cardiologist in the beginning, I was sent home with a Holtzer (sp?) monitor which tracked my HR for a full day. Because I was familiar with my normal patterns from wearing my own HRM in the past, I knew that it should have shown my daily tachycardia.

Well, when I went back to get my official test results, I was told that sure I have tachycardia, but all those spikes --- those are just "artifacts". SO - if I am interpreting this correctly, I think the doc was throwing out the jaggedy peaks of high HR #'s that were actually REAL. I was told that my heart was "fine".

Not sure I got ANY benefit from that little experiment! It was obvious that the doc was used to dealing with folks twice my age with "real" heart problems. I was sent along my merry way....

In hindsight -- how on earth can POTS be normal?!! Maybe challenge your cardiologist if it gets blown off?!
Hope that helps -- good luck tomorrow!

 

[Who Me?]

@Remy sorry to be a dumbass (bigger dumbass than usual) but can you explain the blood panel since it seems to be for cancer. Another thing my pcp ignored yesterday was my mentioning several times that I'm sure dysautonomia is a huge part of my problems. Surprising she didn't refer me to some horrible doc for that.

But if I can get my NP to to request them (she knows I see the NP) then that would be great.

 

[Hezza]

Thanks guys @Remy @Lissa @Who Me?
Found some stuff about left ventricle diastolic dysfunction being common in us? Anyone know if this shows up on a regular work up? Or what test would show it if you have it?

 

[Hezza]

Not sure I have anything to offer... I was going to say tilt table, but just saw your addendum. All I can think of is to differentiate OI from POTS maybe? Blood Pressure changes vs increased Heart Rate upon standing?

Oh and I personally (just my own opinion -- so take it with a grain of salt!) would NOT let them do any cardio stress testing. It could make you much much worse if the small town doc isn't familiar with ME/CFS, and insists you push it. You probably already know that, but figured I should mention it just in case.

When I saw a cardiologist in the beginning, I was sent home with a Holtzer (sp?) monitor which tracked my HR for a full day. Because I was familiar with my normal patterns from wearing my own HRM in the past, I knew that it should have shown my daily tachycardia.

Well, when I went back to get my official test results, I was told that sure I have tachycardia, but all those spikes --- those are just "artifacts". SO - if I am interpreting this correctly, I think the doc was throwing out the jaggedy peaks of high HR #'s that were actually REAL. I was told that my heart was "fine".

Not sure I got ANY benefit from that little experiment! It was obvious that the doc was used to dealing with folks twice my age with "real" heart problems. I was sent along my merry way....

In hindsight -- how on earth can POTS be normal?!! Maybe challenge your cardiologist if it gets blown off?!
Hope that helps -- good luck tomorrow!

Thanks @Lissa is the medicine induced stress testing just as bad for us? How do they check ejection fractions & what not? Wish I knew more about this, hate feeling so ill prepared.

 

[Remy]

Thanks @Lissa is the medicine induced stress testing just as bad for us? How do they check ejection fractions & what not? Wish I knew more about this, hate feeling so ill prepared.

Dr Lerner did ECGs and echocardiogram and 24hr Holter monitor to determine heart involvement. He was also looking for characteristic ECG patterns like flattening or inverted T waves. But I'm sure that he was looking for different things than perhaps a typical cardiologist night. It was all Greek to me.

@Who Me? the panel is looking for autoimmune antibodies that are associated with dysautonomia. That would distinguish it from dysautonomia caused by cancer (which is apparently the only other cause that they acknowledge). But still, useful to know if those antibodies are elevated because that puts IVIG on the table as a treatment.

 

[Who Me?]

Thanks @Remy. I'll ask my NP. Not sure if this would make a difference to the immuno who's only interest was if I had infections

When I get pneumonia then maybe he'll pay attention.

Oh and then who interprets these labs?

 

[Issie]

He will probably do a heart rate monitor on you for a few days to a week. That will record and send info as to what is going on with your heart rate. He may have you do bp checks and keep a record of what's happening with lying to standing and exertion. They will probably run all the test on the heart to make sure there is no heart problem or irregularities. Usually an electrocardiologist does a tilt table test. My DX was officially caught with that type doc. But my primary POTS doc is a neurologist. He is the one that did the other test. QSART, biopsy for small fiber neuropathy, autoimmune test, etc. A rheumatologist is who DXD my EDS. But not all neurologist or rheumatologist know what to look for. When you make your appt. Say you suspect.........and need to know if doc is familiar with and able to DX it. Same with cardio docs. Many times, they don't know what they are seeing. Either way, a heart workup is done first before anything else. Then there are catacolomine test to see if there is unusually high NE levels from lying to standing - to help with subset DX. I had a chemical stress test that could be quickly reversed if necessary with epipen available in a hospital setting. I do have diastolic dysfunction and a mitral valve leak, severe tachycardia related to POTS. With me, I also have Kounis Syndrome - mast cell related disorder that affects the heart. You have to start somewhere and a cardio doc is a good starting place.

Make sure you tell them you suspect......and why. Don't leave it up to them to come up with the idea. Throw it out there and say you want to rule it out.

Issie

 

[Hezza]

He will probably do a heart rate monitor on you for a few days to a week. That will record and send info as to what is going on with your heart rate. He may have you do bp checks and keep a record of what's happening with lying to standing and exertion. They will probably run all the test on the heart to make sure there is no heart problem or irregularities. Usually an electrocardiologist does a tilt table test. My DX was officially caught with that type doc. But my primary POTS doc is a neurologist. He is the one that did the other test. QSART, biopsy for small fiber neuropathy, autoimmune test, etc. A rheumatologist is who DXD my EDS. But not all neurologist or rheumatologist know what to look for. When you make your appt. Say you suspect.........and need to know if doc is familiar with and able to DX it. Same with cardio docs. Many times, they don't know what they are seeing. Either way, a heart workup is done first before anything else. Then there are catacolomine test to see if there is unusually high NE levels from lying to standing - to help with subset DX. I had a chemical stress test that could be quickly reversed if necessary with epipen available in a hospital setting. I do have diastolic dysfunction and a mitral valve leak, severe tachycardia related to POTS. With me, I also have Kounis Syndrome - mast cell related disorder that affects the heart. You have to start somewhere and a cardio doc is a good starting place.

Make sure you tell them you suspect......and why. Don't leave it up to them to come up with the idea. Throw it out there and say you want to rule it out.

Issie

Many thanks @Issie and to all of you, you really came thru in a pinch & tho I have my doubts about getting any further than @Lissa did, at least I feel a bit better prepared & can give it a good shot! I'll report back on how it goes...

 

[Hezza]

@Issie since I am already being treated for pots by neuro immune institute in Miami's Dr Vera (based on my poor man tilt table) should I leave off my meds (Florinef & Atenolol) for the first visit & subsequent holster monitoring with the cardio?

At INIM they did not do a lot of rigorous testing & diagnosing but just jumped on treating what seemed to be a clear case of ME/CFS/POTS. So I do not have the typical "proof" which is proving to be a problem with the local Drs.

So a heart work up is done first, is that what would show if there is diastolic dysfunction/mitral valve problems?