Help me think through Dr. issues (a bit long, sorry)

[Jean in Newcastle]

I have a love-hate relationship with Drs. I have great admiration and respect for their years of schooling and expertise. I feel like I'm paying for their expert advice and should follow it. But I've had 16 years of Drs. using me as a guinea pig to try and treat my chronic pain, fatigue etc. I was diagnosed with fibromyalgia 16 years ago and got 0 help from traditional Drs. I did get some help from naturopathic medicine. But my best treatment came from my own research and experiments on myself.

 

Flash-forward 16 years to this year. I realized that my own research and experiments were running into some dead-ends. Some of the things I wanted to treat myself with needed a Drs. oversight to keep things from getting toxic. So I started to go to a naturopath who uses both standard medical tests as well as supplements, herbs and homeopathic remedies. This was important to me after going to a few alternative practitioners who tried to treat me with crystals etc.

 

This current Dr. has found (through testing) a thyroid problem and a severe vitamin D deficiency. She's put me on medicine/supplements which are working. She is monitoring both with blood tests quarterly. I'm really happy with that! But she's also struck out on other remedies - weekly magnesium I.V.s that were very painful and made me sicker. It was also expensive. She's convinced that I have a gluten intolerance even though her own tests showed that I don't. Now she wants me to go on an elimination diet (for the 3rd time) and to go through a detox regimen.

 

To cut to the chase - I don't want to follow her latest advice. I think the first 2 elimination diets showed that I really don't have trouble with food. And those things are a royal pain in the you-know-what. I don't want to detox. I have a lot of trouble with my body handling stuff like that. I'm actually doing ok right now physically (due to the thyroid medicine and vitamin D) and don't really want to feel like carp. I spent a lot of money the last few months on the unsuccessful magnesium therapy and money is tight. I've started to sleep better lately and have a gut feeling that if I can concentrate on getting good sleep that some of my remaining problems will get better. But I'm going to her because she's an expert and I'm not. And I have to have a blood test before the next appointment and she gives me the results at the appointment. So - can I tell her "no" to her latest advice? Can I tell her that I don't want to see her for a few months because of finances and wanting my body to have a rest?

[Tabrett]

I would tell her no. That I've already tried her recommendations and the Thyroid med and vitamins are working and leave it at that. It is your body. I think people have a lot more intuition about how their body works than what we may think.

[Tree House Academy]

Yes, you absolutely can tell her no. No matter what her expertise, you know your body better than anyone else and you definitely know when it needs a rest. I would tell her that finances are bad right now and that you are just going to take some time and see how things go. Promise her that if you get bad, you will not hesitate to come right back, but you need to do this for you. If she gives you lip about it, then she may not be the doctor for you. I think the dr has to respect the patient just as much as the patient needs to respect the doc.

 

Best of luck to you!

[Tammyla]

Could you go with a simple not now doc. How about we postpone that option for now, because things are improving, winter is here and darn it I'm feeling a bit better.

[newbie]

I seem to find some naturopaths run one way or the other. It is all hit and miss, I guess like finding real doc.

 

I have to been to ones that bombard me w/herbs and treatments and others who can hit right on the nose and not give sooo much.

 

I was thinking about IV treatments, but cost is a factor and even w/herbs too much of a good thing can be toxic.

 

You know your body best, and its too bad alternative is so expensive.

 

What I am doing is getting a definitive from reg. doc and having acupuncture/naturopath treat. I already pay through nose for reg. but do not want medicine.

 

Okay, I am rambling, must be time to eat.

[elizabeth]

If you have not seen a rheumatologist MD please consider doing so. It changed my life. Much has changed with regard to fibromyalgia dx within the past few years and traditional medicine certainly has been remiss in recognizing and treating this disease. However, your best bet is with a Rheumatologist for thorough analysis and treatment. I see quite a bit in my dh law practice and although some MD's are dismally regressive in their attitudes toward this diagnosis and chronic fatigue syndrome many are now reevaluating that position due to new research being done in autoimmune disorders. FWIW -I am both an attorney and fellow sufferer who was treated as if I were a flake due to my seemingly odd symptoms until I met Dr Right I hope you will explore this route once again despite being either ignored or disappointed in earlier attempts to seek help.

[newbie]

Elizabeth,

For those trying to go alternative, how great is Dr. Right. I think they throw a lot of steroids at autoimmune disorders. Have you found that to be the case.

 

I have an appt on the fifth, so just curious.

[Jean in Newcastle]

Elizabeth - I have kept up on the traditional meds. The old ones gave me heart problems. The newest ones have as their side effects some of the very symptoms I'm trying to treat. It's not worth it to me! But I do see the wisdom in your words. I'm really seeing a huge difference with the thyroid and vitamin D therapy I'm on - otherwise I would pursue that more.

[athena1277]

First let me say I am not a doctor. However my dd was diagnosed with celiac disease 4 years ago and my dh has a latent form, so I read everything I can on the subject.

 

Based on the symptoms you stated and the fact that the dr mentioned gluten intolerance, I would look into the possiblity of CD. MANY doctors do not know much about this disease. I would look for a good GI dr. familiar with CD and see what he says. Many people go to doctors for years with the less typical syptoms before being diagonsed.

 

Here is a link to some more info on this:

 

http://www.celiaccentral.org/What_is_Celiac_/13/gclid__CKb89pH__uZcCFQZeswodwCcSTA/

 

I hope you find out what is wrong and feel better soon!

[Jean in Newcastle]

Athena - that's the point - I was tested for celiac as well as gluten intolerance in general twice and it was negative both times! That's why I wish she would move on. She's gotten focused on this and just does not want to move on. In addition - I am not having digestive problems.

 

I really do appreciate all the support from this board though. You are empowering me to be a better advocate for myself. I don't know why it is so easy to advocate for my family but so much harder for myself!

[RoughCollie]

I would see an M.D.

 

Here's why:

 

"Many of the symptoms of fibromyalgia mimic those of other diseases, such as low thyroid hormone production (hypothyroidism), polymyalgia rheumatica, neuropathies, lupus, multiple sclerosis and rheumatoid arthritis. Your doctor can help determine if one of these other conditions may be causing your symptoms."

 

http://mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=when-to-seek-medical-advice

 

Here's something else interesting:

 

"In a 2006 Mayo Clinic study, acupuncture significantly improved symptoms of fibromyalgia. "

 

http://mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=alternative-medicine

 

RC

[klmama]

Of course, you can stop for awhile. Just keep doing what's working while you rest up and recoup your strength and finances. Reevaluate later when you are ready.

 

Also, keep an eye and ear out for that Dr. Right - if you can find a traditional doctor that will take you seriously, your insurance would probably cover a lot of it, so the out-of-pocket cost could be much less than what you've been paying.