How do I phrase this to my doctor properly?

[tdog333]

I'm debating whether or not to see a doctor. My CFS started after becoming infected with C.Difficile over a year ago. After the C.Diff I got a colonoscopy and endoscopy because I was having colon pain and terrible bloating, and had lost 75lb and was still losing weight. The colonoscopy showed inflammation of the colon and ileum, and the endoscopy showed gastritis of the stomach. The GI doctor told my parents after I left the room that he thought I was imagining the digestive upset and it was in my head...(even after having gastritis and inflammation in my colon!) Well needless to say we never went back, and I haven't seen a doctor since then.

I'm studying to become a ND and have been able to heal myself for the most part. I got the bloating and colon pain to go away, have resolved(for the most part) candida. And have improved my CFS by a considerable amount. 90% of my symptoms are gone now but the two major ones still remain. Digestive issues which I'm working on and more importantly the CFS.

The CFS has improved quite a bit, I used to be confined to a chair but I can now do things around the house, light 1 minute exercise, and the brain fog is pretty much gone most days. I still have almost immediate crashes that last for the rest of the day though if I push too hard. I still have swollen lymph nodes which have been here for the past 6-7 months.

I have never had any testing done for CFS, I've only had stool testing, organic acid testing, methylation testing done through mymedlab.com

The main reason I want to see a doctor is to rule out any viral connections and get my liver enzymes, CBC, vitamins and minerals tested. The problem is I don't have enough money to pay for a good ND. The doctor I see will have to be a regular MD(so it's covered by my insurance).

My doctor is a really good and nice guy, but he just pushes antibiotics if he doesn't understand the cause.(He is not a CFS specialist, just a regular family MD) How can I convince him to give me these tests? I really don't want to be labeled as depressed or imagining my fatigue, I'm perfectly fine mentally.

Thanks for reading!

 

[Martial]

You could ask for a viral and bacterial panel test to be done, just explain you are dealing with mono like or another bacteria cause like mycoplasma symptoms and see if he will rule out any underlying infections.

Also have you ever tried lipid replacement therapy? If part of your issues is stemming from mitochondrial damage or dysfunction this will help alot. Specifically as a supplement NT factor works amazing! Be sure to get the plain version though with no extra additives, Nutricology has the best version in my opinion..

Important to look for those underlying infections again though because obviously you should treat what caused the C. Diff in the first place. In case there is any lingering viral, parasitic, fungal, or bacterial infections in the system still.

Also Dr. Buhner has great herbal protocols you can use for these types of things. He specializes in Lyme but also does stuff for parasites, fungus, viruses, and parasites.

You can find info on his site healinglyme.com

hope this helps!

Todd

 

[taniaaust1]

If your doctor loves to antibiotic push.. make it clear to him that you want tests to show that you need antibiotics before taking these. Just simply point out that CFS isnt usually "cured" by antibiotics and that you need to find out what factors are involved in your case so you can be better healed.

I really don't want to be labeled as depressed or imagining my fatigue, I'm perfectly fine mentally.

Unfortunately many doctors will do that no matter what you do, it all depends on their beliefs around CFS in the first place (as many as 85% of doctors out there believe it has a psychological component).. hence if it fails with the GP you like.. certainly then seek out a doctor who specialises in ME/CFS.

Those tests you are asking for in quote below are VERY BASIC tests and ones most doctors would do on a yearly bases on a very sick patient like yourself. I'd be very surprised if your doctor wont allow you to have those ones you mentioned (most doctors would be fine with that). "The main reason I want to see a doctor is to rule out any viral connections and get my liver enzymes, CBC, vitamins and minerals tested".

I believe its best to test out the minerals by a hair analyses as it will pick up deficiences well. Many of the doctors blood tests can give quite wrong impressions eg take copper levels for example, copper is stored in fat and tissues and one cant see ones true status well by a blood test. Also hair testing will give the levels for many the doctors certainly wont test for eg I had severe molybdenum deficiency. (I know you said you dont have much money but the doctors tests in that area can not be good at all).

best luck. Do not give up on finding a doctor for the CFS as you do really need one.

 

[Helen]

@tdog333

Folate and B12 supplementation for your mutations?

 

[tdog333]

@Martial
Thanks for the reply! I am doing a combo of NT factor and BodyBIO PC with many other supps targeted at healing the mito, they are working fantastic!

Okay I will look at that website now, thanks for the link I appreciate it.

@taniaaust1 So do you think it's okay to just go in tell him my symptoms and ask for the tests? Any certain way you think would be best to word this to him? Maybe I'm just over thinking this haha. Okay I'll look into getting hair testing done as well thanks!

@Helen I am taking 2.4MG Methylfolate and 3MG MethylB12 which I have worked up to, but I have not noticed any amazing results yet except muscle twitching that is severe and won't go away even with almost a gram of potassium (also taking other methylation supps like creatine, carnatine, adb12 etc..)

 

[Martial]

@Martial
Thanks for the reply! I am doing a combo of NT factor and BodyBIO PC with many other supps targeted at healing the mito, they are working fantastic!

Okay I will look at that website now, thanks for the link I appreciate it.

@taniaaust1 So do you think it's okay to just go in tell him my symptoms and ask for the tests? Any certain way you think would be best to word this to him? Maybe I'm just over thinking this haha. Okay I'll look into getting hair testing done as well thanks!

@Helen I am taking 2.4MG Methylfolate and 3MG MethylB12 which I have worked up to, but I have not noticed any amazing results yet except muscle twitching that is severe and won't go away even with almost a gram of potassium (also taking other methylation supps like creatine, carnatine, adb12 etc..)

No prob man! Also sounds like low potassium syptoms going on., If you don't get enough in your diet you may need 3000g extra potassium, that is what I do as bare minimum, still get symptoms if i don't combine it with high potassium foods. Also be sure to get in enough magnesium, if you are deficient in Mag your body will not hold onto the potassium.

FYI the RDV for potassium is 4,000mg

 

[tdog333]

Oh wow for some reason I didn't realize it was so high. This is the brand I have-
http://www.swansonvitamins.com/swanson-premium-potassium-gluconate-99-mg-500-caps?otherSize=SW225

So I should probably be taking more like 30+ pills a day than?

My diet is pretty restricted so I don't get much if any potassium from food.

 

[WillowJ]

I agree with what @taniaaust1 said about telling him you want to test before using antibiotics (that is weird: most docs don't give these out readily anymore) and that liver (and kidney) enzymes are very basic tests which any doc should be happy to order at a routine physical. Also an electrolyte panel.

And there should be no problem with checking vitamins, at least any you have a reason to suspect might be off.

Hair mineral testing would be only an ND thing in the US, I believe.

It might be possible, depending on your location and insurance, to find an ND/MD and have the visit, labs, and Rx covered in the normal way, but of course any supplements and other "alternative" things would still be not covered.

Sorry about the doc who told you stuff was in your head. That's always difficult to manage.

If you are disclosing your ME/CFS and have difficulty getting microbial tests, you could try handing the doc a protocol, primer, or fact sheet, like Dr. Lerner's , something from Montoya's Stanford Initiative, or the ICC Primer. Let me know if you need links.

 

[Helen]

@Helen I am taking 2.4MG Methylfolate and 3MG MethylB12 which I have worked up to, but I have not noticed any amazing results yet except muscle twitching that is severe and won't go away even with almost a gram of potassium (also taking other methylation supps like creatine, carnatine, adb12 etc..)

Maybe you need much more MeCbl to get a postive reaction. We are many that need many mgs in injections or sublinguals to get a positive result. Does higher doses MeCbl give you muscle twitching? Could that be from lack of magnesium? Just some thoughts.

 

[vamah]

I find, with my doctor, that sometimes the best approch is the simplest. Ask for the tests just "because I want to rule it out" or something. Sometimes he wants to discuss it more and sometimes not, but often he just says that it sounds reasonable and orders them. My doc is pretty easy going, though. Your approach would depend on your doctor's personality. What has worked it the past to get what you want?

 

[tdog333]

Thank you for the reply's guys! I spent awhile last night looking through ratemds.com and found one with high reviews. I was actually able to get an appt today. He was a really nice guy but he brushed MTHFR aside and wants me to take megace(megastrol) to help me gain weight. I looked it up and it looks like it has some really nasty side effects.. I'm not even that underweight, 6'2ish and 150 LB, definitely skinny but I think I'll pass on the drug.

I did get him to order me a nice panel of tests which is the primary reason I went there, so I'm glad he was willing to do that!

I will try upping the dose of Methylb12 and see what happens, the electrolyte panel should be good to see too, thanks guys!

 

[Little Bluestem]

I got my hair mineral testing from a certified clinical dietitian. The quality of hair testing companies varies greatly. Two that I know are reputable are Trace Elements, Inc. and Analytical Research Labs. If your practitioner is using a different lab, research it.

 

[tdog333]

Well I just got some results back, so far I have hyperthyroid and high liver enzymes, still waiting for the rest. So good thing I went!

 

[taniaaust1]

So do you think it's okay to just go in tell him my symptoms and ask for the tests? Any certain way you think would be best to word this to him? Maybe I'm just over thinking this haha. Okay I'll look into getting hair testing done as well thanks!

Sorry I dont think I made my post clear. I wouldnt ask doctor re the hair test unless it was one of those integrative ones (or whatever they are called). A natural therapist (or whatever they are called in your country) can help one get a hair test done throu a lab.

What I'd tell is tell him my symptoms and then wait and see what tests he recommends then if he's missed something I want, I usually at that point ask for it (as I said you are wanting fairly basic tests so he may just do them). The idea of waiting to see what the doctor recommends first (rather then giving him a list of symptoms and then a list of tests you want).. stops you from appearing as a know it all which could get a dr off side and makes the doctor feel more important so hopefully he's more eager to please you. Most doctors dont like demanding patients.

 

[WillowJ]

Well I just got some results back, so far I have hyperthyroid and high liver enzymes, still waiting for the rest. So good thing I went!

good things to know about; glad you are getting some help