GP is willing to run new tests! Help me decide which ones, please?

[EMilo]

Hi everyone,

I saw my GP after 7 months and, afterwards, she sent me a letter saying, "I was shocked at your continued decline and felt a panic to be able to offer some hope or guidance... I did not get to do an exam or form a good sense of what lab testing would be useful at this time. I do think that given the decline you have experienced, both are indicated."

I want to take advantage of her willingness to look at repeating tests and/or doing new "out of the box" tests. Can you please tell me the top 10 tests you would ask for?

I don't have an ME specialist and don't have the means to travel to one (although I hope to somehow make it to Dr. Kogelnik, Dr. Chia or Dr. Peterson). In the months after I got sick (Nov, 2011), I had all the typical tests done, but haven't repeated very many and you talk about things on this forum I have never heard of. My thoughts are:

• VO2 Max (although it would be a 1-day stress test done by somebody who doesn't know about ME)
• tilt table test (I definitely have dysautonomia issues ~ I am dizzy, pass out, low BP, high HR, blood pooling etc ~ but I might pass the TT test because, if I don't move, I can control my HR while standing. My HR skyrockets when I move my arms)
• any Mycoplasma test
• any HHV test
• ACTH, LH, HGH
• insulin like growth factor
• testosterone
• RNase L Panel
• Immunoglobulin
• Cytokine profile
• Natural killer cell
• Complete metabolic panel
• Lactic acid
• folate
• DHEA sulphate
• Heavy metals
• Amino Acid
• IgG (?)
• Neuropsychological Testing

I also had a Western Blot Lyme's test done, but don't trust it. Is there another test I should do (I've read about a Lyme's culture test)?

As always, thank you so much for your help!! It means the world to me to have expert advice from people who understand this illness.

 

[SOC]

Section 4.3 in the ME/CFS Primer for Clinical Practitioners gives guidance for lab testing. You might want to read it if you haven't already.

I wouldn't advise the VOmax test unless you need it for something like disability. It's a killer. If you can get someone to determine your AT with a modified exercise test, that might be helpful for activity management.

Rather than going straight for the TTT, you might ask for a referral to a cardiologist for evaluation for OI. Bring the ME/CFS Primer for Clinical Practioners and show the cardiologist sections 3.5 and 5.8. The cardiologist may choose to go for the TTT, or choose to evaluate/treat without it given the info in the Primer.

Any HHV6 test is not a good idea. Most docs (including some ID docs) misinterpret the results because they assume you do not have immune dysfunction. You can read up on HHV6 testing here. Armed with that info, you might be able to get a good test and correct interpretation.

If you ask for NK cell test, you'll mostly likely get an NK cell number test. NK cell numbers are usually normal in PWME, so the test would be costly and pointless. What you want is an NK cell function test. I think those are not easy to come by. They're only done a few places, and the blood has to be transported within a very limited time frame.

 

[EMilo]

SOC, thank you so much for your help! I have to email my GP today. I have looked at the primer, thank you. Now my battle is whether to get the VO2 Max and TT test for disability purposes (I haven't applied yet ~ it is a HUGE monkey on my back). I saw a cardiologist a few weeks ago and, of course, he didn't want to hear anything I had to say. He told me "I see a lot of girls like you with low blood pressure and high heart rate who don't weigh very much. You need to increase your protein and salt and lift some 5 or 10 lb weights." Oh sure! Just some 10lb weights. That shouldn't be an issue since I can barely brush my teeth.

I've very happy to know about the HHV6 test and NK cell test~ thank you! That's exactly the sort of info I needed. I appreciate your help!!

 

[Sasha]

He told me "I see a lot of girls like you with low blood pressure and high heart rate who don't weigh very much. You need to increase your protein and salt and lift some 5 or 10 lb weights." Oh sure! Just some 10lb weights. That shouldn't be an issue since I can barely brush my teeth.

A friend of mine was once employed by a doctor and part of her job involved fitting appliances at people's homes which were actually far too heavy for her to handle and she was worried about putting her back out. When she told her mother, her mother yelled, 'Calls himself a doctor!' and every time she told me about another thing like that that he'd done, we'd chorus, 'Calls himself a doctor!'.

I think of that phrase very often these days! I thought of it when I read your post.

 

[EMilo]

A friend of mine was once employed by a doctor and part of her job involved fitting appliances at people's homes which were actually far too heavy for her to handle and she was worried about putting her back out. When she told her mother, her mother yelled, 'Calls himself a doctor!' and every time she told me about another thing like that that he'd done, we'd chorus, 'Calls himself a doctor!'.

I think of that phrase very often these days! I thought of it when I read your post.

We'll be saying that a lot in this house! Ever since that appointment we've been making fun of his suggestion. I'll say to my husband: "I walked 1,000 steps today!!" and he'll say, "Great! Now just lift some 10lb weights and you'll be right as rain."

 

[Sushi]

SOC, thank you so much for your help! I have to email my GP today. I have looked at the primer, thank you. Now my battle is whether to get the VO2 Max and TT test for disability purposes (I haven't applied yet ~ it is a HUGE monkey on my back). I saw a cardiologist a few weeks ago and, of course, he didn't want to hear anything I had to say. He told me "I see a lot of girls like you with low blood pressure and high heart rate who don't weigh very much. You need to increase your protein and salt and lift some 5 or 10 lb weights." Oh sure! Just some 10lb weights. That shouldn't be an issue since I can barely brush my teeth.

I've very happy to know about the HHV6 test and NK cell test~ thank you! That's exactly the sort of info I needed. I appreciate your help!!

Hi Elizabeth,

I know that the VO2 Max test as done by Staci Stevens is very helpful for disability applicants. Is the TTT useful as well? I'm asking because both tests can stress the body (probably the TTT is worse), both cost money and maybe you don't need to do both.

Your doctor could easily do a "poor man's tilt table test" in her office.

Best wishes with this,
Sushi

 

[EMilo]

Oh, and I forgot the best part! After the cardiologist said, "I see a lot of you girls...." (which made me want to punch him), he said, "I know everyone is worried about being thin and looking good, but you need to put on some weight and you won't have syncope anymore." I was AGAPE. Worried about being thin and looking good?? No, I'm worried about NOT DYING and getting to a point where I can LEAVE MY HOUSE AGAIN. I see exactly 1 person every day: my husband.
Calls himself a doctor!

 

[Valentijn]

We'll be saying that a lot in this house! Ever since that appointment we've been making fun of his suggestion. I'll say to my husband: "I walked 1,000 steps today!!" and he'll say, "Great! Now just lift some 10lb weights and you'll be right as rain."

Hah, all I have to do is get outside more and get pregnant Then I'll be cured!

 

[Little Bluestem]

Oh, and I forgot the best part! After the cardiologist said, "I see a lot of you girls...." (which made me want to punch him), he said, "I know everyone is worried about being thin and looking good, but you need to put on some weight and you won't have syncope anymore." I was AGAPE. Worried about being thin and looking good?? No, I'm worried about NOT DYING and getting to a point where I can LEAVE MY HOUSE AGAIN. I see exactly 1 person every day: my husband.
Calls himself a doctor!

As well as the 'like' button, we need a 'like to punch' button.

 

[Bluebell]

Elizabeth's post

Elizabeth, which tests did you end up requesting? Were the results helpful?