Diagnosed with autoimmune disease...what next?

[melissamomof5]

Update Post #47

 

Everything began when I had some hip irritation that progressively worsened over probably 4-5 months to where I was having trouble walking it hurt so bad. I couldn't (and still really can't) lay on that side as it's too sore. I can't (though it's slightly improving) sit criss-cross applesauce. I see a chiropractor and they weren't able to help the pain.

 

I finally went to the doctor about a month ago and she did blood work and x-rays. X-rays came back fine, but bloodwork showed a severe vitamin d deficiency and also quite positive for inflammatory autoimmune disease. It was not clear as to which one.

 

I am now taking 5,000 IU's vitamin D3 a day. I am also taking a tumeric for the inflammation daily. All of this is helping, but it's still there. It's basically just keeping me from bad pain.

 

I also have been extremely fatigued, have strange itchy red bumpy spots on both my lower legs, and who knows what else. lol

 

My doctor mentioned this is likely caused from a food allergy. She mentioned trying some of my own testing at home to see what it could be or doing the blood panel.

 

What are you thoughts? I've looked at the paleo diet as a possible help for this. I just don't want to end up trying a bunch of different things, I want to do the best thing right off.

 

Can anyone with experience or knowledge help me start in the right direction?

Edited April 13, 2012 by melissamomof3girls

[Disney Dreaming]

:grouphug: No advice here but hoping you find some help.

Edited April 11, 2012 by ugamom11

[frugalmama]

The first step is to find out WHICH auto-immune you're dealing with. There are several that can present with those symptoms.

 

After you know which one you're dealing with, then it's easier to develop treatment plans. Until then though try to minimize stress as it does worse auto-immunes.

[Lizzie in Ma]

Did he test you for Lyme as well? Our 15 year old has it and her D is very low and her ANA titer is also very high.

[melissamomof5]

The first step is to find out WHICH auto-immune you're dealing with. There are several that can present with those symptoms.

 

After you know which one you're dealing with, then it's easier to develop treatment plans. Until then though try to minimize stress as it does worse auto-immunes.

 

Do you think my doctor should be doing more testing? She kind of just left me with all of this and no new appts scheduled.

[JudoMom]

Do you think my doctor should be doing more testing? She kind of just left me with all of this and no new appts scheduled.

 

Yes. Have you seen a rheumatologist? You really need to figure out which disease you're dealing with, because different diseases can effect the body in different ways. Some effect organs in addition to joints--I've got autoimmune hepatitis and possible lupus, but my liver is definitely seriously involved (without treatment I would develop cirrhosis). With the right treatment, other autoimmune diseases can have their progression seriously slowed down.

 

:grouphug::grouphug::grouphug:

[Ellie]

:grouphug::grouphug::grouphug:

 

Some people report improvement if they eliminate gluten, which *could* be paleo/Atkins. You can eliminate gluten and still eat carbs, but if my friend's experience is any indication of what is normal, doing that is tricky and expensive.

[frugalmama]

Do you think my doctor should be doing more testing? She kind of just left me with all of this and no new appts scheduled.

 

Definitely - honestly I'd ask for a referral to someone specializing in auto-immune {not sure what they are called - mine was diagnosed through a specialist at a hospital}. They should be running more testing for sure and you should have regular followups until they know what it is and develop a treatment plan.

[melissamomof5]

:grouphug::grouphug::grouphug:

 

Some people report improvement if they eliminate gluten, which *could* be paleo/Atkins. You can eliminate gluten and still eat carbs, but if my friend's experience is any indication of what is normal, doing that is tricky and expensive.

 

This is what I was thinking, but yeah, I tried to buy groceries in that fashion this week and it was almost $200 just for the week.

[Parrothead]

Yes, you doctor should be trying to get to the bottom of this. At the very least you should know which auto immune disease(s) you have.

 

I have 4. Last week I found the book Eat to Live and The Detox Miracle Sourcebook. I started the diet E2L diet hoping I'd get to the point where I was eating as recommended in the DMS. I was feeling better. Then Easter came and I went off the diet. A few other things happened (I'll share privately but not on the general board) and I haven't gone back yet. Now this morning I've just realized that I feel rather crappy. All my old symptoms are coming back and it is time for me to stop playing around. I need to start eating the way that my body wants. So back to the Eat to Live lifestyle.

 

Fair warning: The author of DMS is a bit out there. Apparently he had an experience in the 70s which led him to the path he has followed in the decades since. Instead of putting the book down when I read the bit about his experience I just kinda :glare: :D reminded myself it was the 70s and kept reading. Everything after that bit makes a lot of sense to me.

[fhjmom]

Yes. Have you seen a rheumatologist? You really need to figure out which disease you're dealing with, because different diseases can effect the body in different ways. Some effect organs in addition to joints--I've got autoimmune hepatitis and possible lupus, but my liver is definitely seriously involved (without treatment I would develop cirrhosis). With the right treatment, other autoimmune diseases can have their progression seriously slowed down.

 

:grouphug::grouphug::grouphug:

 

I was also wondering why you were not referred to a rheumatologist. I would ask they refer you out ASAP.

[CalicoKat]

Everything began when I had some hip irritation that progressively worsened over probably 4-5 months to where I was having trouble walking it hurt so bad. I couldn't (and still really can't) lay on that side as it's too sore. I can't (though it's slightly improving) sit criss-cross applesauce. I see a chiropractor and they weren't able to help the pain.

 

I finally went to the doctor about a month ago and she did blood work and x-rays. X-rays came back fine, but bloodwork showed a severe vitamin d deficiency and also quite positive for inflammatory autoimmune disease. It was not clear as to which one.

 

I am now taking 5,000 IU's vitamin D3 a day. I am also taking a tumeric for the inflammation daily. All of this is helping, but it's still there. It's basically just keeping me from bad pain.

 

I also have been extremely fatigued, have strange itchy red bumpy spots on both my lower legs, and who knows what else. lol

 

My doctor mentioned this is likely caused from a food allergy. She mentioned trying some of my own testing at home to see what it could be or doing the blood panel.

 

What are you thoughts? I've looked at the paleo diet as a possible help for this. I just don't want to end up trying a bunch of different things, I want to do the best thing right off.

 

Can anyone with experience or knowledge help me start in the right direction?

 

Have a rhumatologist rule out Reiter's Syndrome or Anklylosing Spondilitis.

 

It a type of arthritis that comes after a virus that triggers a specific gene, HLA B27.

 

:grouphug:

No matter what, keep moving. If it's arthritis movement is the key to keeping your joints.

[melissamomof5]

Definitely - honestly I'd ask for a referral to someone specializing in auto-immune {not sure what they are called - mine was diagnosed through a specialist at a hospital}. They should be running more testing for sure and you should have regular followups until they know what it is and develop a treatment plan.

 

I know I was really kind of surprised when her response at the end of my appt was "well, you know where to find me". :confused: She's a good doctor as far as treating us naturally and being open-minded with us, but this is a little too relaxed for me. :tongue_smilie:

 

I put a call into her office so I'll ask about a referral when she calls me back.

[Ellie]

This is what I was thinking, but yeah, I tried to buy groceries in that fashion this week and it was almost $200 just for the week.

No kidding. I can eat well for much less than that while doing Atkins (or paleo, for that matter).

[melissamomof5]

Yes, you doctor should be trying to get to the bottom of this. At the very least you should know which auto immune disease(s) you have.

 

I have 4. Last week I found the book Eat to Live and The Detox Miracle Sourcebook. I started the diet E2L diet hoping I'd get to the point where I was eating as recommended in the DMS. I was feeling better. Then Easter came and I went off the diet. A few other things happened (I'll share privately but not on the general board) and I haven't gone back yet. Now this morning I've just realized that I feel rather crappy. All my old symptoms are coming back and it is time for me to stop playing around. I need to start eating the way that my body wants. So back to the Eat to Live lifestyle.

 

Fair warning: The author of DMS is a bit out there. Apparently he had an experience in the 70s which led him to the path he has followed in the decades since. Instead of putting the book down when I read the bit about his experience I just kinda :glare: :D reminded myself it was the 70s and kept reading. Everything after that bit makes a lot of sense to me.

 

Thank you for the book recommendations. I'll add them to my hold list at the library. :)

[Mom-ninja.]

I know I was really kind of surprised when her response at the end of my appt was "well, you know where to find me". :confused: She's a good doctor as far as treating us naturally and being open-minded with us, but this is a little too relaxed for me. :tongue_smilie:

 

I put a call into her office so I'll ask about a referral when she calls me back.

 

 

I just left my doctor's practice. I went to her because she's open minded and tries to treat naturally first. However, I think she's gone too far in that direction. I was complaining to her for months (well actually a year and a half) of problems. She told me I was having stress induced panic attacks and to do learn deep breathing. Okay. I demanded more testing after awhile. Tests came back showing that I was not digesting fats, had low Vit D, and had an overgrowth of harmful bacteria in my gut. Her treatment plan was for me to take probiotics for 18 weeks. 18 weeks! Now, let me say that I eat pretty healthy, I was already taking probiotics regularly, and drinking kefir almost every day. She refused to do anything else until I had completed 18 weeks of her probiotics. So, I went to a GI on my own. Within 5 minutes he decided I had celiac. He ran the tests and sure enough that's what I have. As it turns out I also have Hashimoto's, and my doctor (not the GI) told me to wait and see if it balanced out on its own after stopping gluten. Well, it's been 7 months and it hasn't gotten better. I've had enough so I switched doctors. I now have a referral to see an endocrinologist next month.

 

There are some doctors that rely too much on "natural" methods and some doctors that reach for medicine too quickly. So you have to decide for yourself what the right balance is.

[melissamomof5]

I just left my doctor's practice. I went to her because she's open minded and tries to treat naturally first. However, I think she's gone too far in that direction. I was complaining to her for months (well actually a year and a half) of problems. She told me I was having stress induced panic attacks and to do learn deep breathing. Okay. I demanded more testing after awhile. Tests came back showing that I was not digesting fats, had low Vit D, and had an overgrowth of harmful bacteria in my gut. Her treatment plan was for me to take probiotics for 18 weeks. 18 weeks! Now, let me say that I eat pretty healthy, I was already taking probiotics regularly, and drinking kefir almost every day. She refused to do anything else until I had completed 18 weeks of her probiotics. So, I went to a GI on my own. Within 5 minutes he decided I had celiac. He ran the tests and sure enough that's what I have. As it turns out I also have Hashimoto's, and my doctor (not the GI) told me to wait and see if it balanced out on its own after stopping gluten. Well, it's been 7 months and it hasn't gotten better. I've had enough so I switched doctors. I now have a referral to see an endocrinologist next month.

 

There are some doctors that rely too much on "natural" methods and some doctors that reach for medicine too quickly. So you have to decide for yourself what the right balance is.

 

Oh wow. I hope you find a good treatment soon! Thank you for sharing. I am sure she will refer me if I just ask. Hoping we get somewhere! Sometimes I think I have a hard time finding the balance between just letting things go and not making enough of it to making it more than it is. But, at only 32 years old and as a mother of 4, I think I need to get this figured out before anything would get worse, if it should.

[Jean in Newcastle]

How severe a vit. D deficiency? I take 10,000 i.u's a day. 5000 isn't necessarily that much, depending on the numbers.

[Spryte]

How severe a vit. D deficiency? I take 10,000 i.u's a day. 5000 isn't necessarily that much, depending on the numbers.

 

I wondered the same thing. I have a problem with keeping my D levels up, and periodically (right now, as a matter of fact) take 50,000 IU weekly along with 5,000 IU daily for several months. Generally, I back off the weekly dose once my levels are back up, but low D has been an on-going, cyclical issue for me.

 

5,000 IU seems low for a severe deficiency.

[melissamomof5]

How severe a vit. D deficiency? I take 10,000 i.u's a day. 5000 isn't necessarily that much, depending on the numbers.

 

I don't know. She didn't tell me. I will ask whenever they call me back.

[JudoMom]

I don't know. She didn't tell me. I will ask whenever they call me back.

 

I would ask her to mail you a copy of all your lab work. Start a file of all tests and labs you have run, and take this file to all doctor visits.

[melissamomof5]

I would ask her to mail you a copy of all your lab work. Start a file of all tests and labs you have run, and take this file to all doctor visits.

 

Thank you for the tip. I'm so bad about speaking up during dr's visits!

[Mommyof4ks]

I make antibodies for several immune diseases, so I have no official diagnosis other than connective tissue disease even after a great deal of testing. Cutting back on gluten, seeing my chiro, and taking a baby aspirin daily has helped a lot. I may have to take the prescription for plaquanil that I was given at some point, but for now I am felling better.

 

Something I learned from a great deal of research was the importance of oral health. I am having my root canaled teeth pulled, because the bacteria that grows there can spread and cause imflamation throughout the body. No one told me this when I had the root canals, but just switching to xylitol toothpaste that kills that bacteria has helped, so getting rid of the problem should be even better.

 

Get into a good rheumatologist, and ask lots of questions. The important thing is to get the imflamation down so it does not do further damage to your body, and so your body can heal properly.

[melissamomof5]

I make antibodies for several immune diseases, so I have no official diagnosis other than connective tissue disease even after a great deal of testing. Cutting back on gluten, seeing my chiro, and taking a baby aspirin daily has helped a lot. I may have to take the prescription for plaquanil that I was given at some point, but for now I am felling better.

 

Something I learned from a great deal of research was the importance of oral health. I am having my root canaled teeth pulled, because the bacteria that grows there can spread and cause imflamation throughout the body. No one told me this when I had the root canals, but just switching to xylitol toothpaste that kills that bacteria has helped, so getting rid of the problem should be even better.

 

Get into a good rheumatologist, and ask lots of questions. The important thing is to get the imflamation down so it does not do further damage to your body, and so your body can heal properly.

 

Thank you for sharing. You bring up an interesting point. I have not been to the dentist in 3 or 4 years. I have a mouth full of amalgam fillings and have wondered if I could be suffering from mercury poisoning? But, oy, to go through having each of them removed and replaced. Cha Ching! Plus, how do you even know for sure what is causing the problem? I wonder if I could be sure?

[mommymilkies]

I need to see my doc about this very thing. I have terrible back and hip pain (not to mention my knee!) that comes and goes with no injury. Right now I can't bend/move/walk/sit because of my pelvis. The chiro helps enormously. But I am already gluten free. I have been suspecting for a few weeks that I may have another allergy or intolerance that is affecting me, as my rashes came back. Looks like now I get to cut more food out. :glare: I was already considering going paleo/primal, so now it looks like I will for sure starting with payday. There is a specific primal autoimmune diet plan. Have you seen that? I will try to find it later. It cuts out tomato and peppers which are two of my favorite things, so I'm not exactly excited about it...

[JudoMom]

I make antibodies for several immune diseases, so I have no official diagnosis other than connective tissue disease even after a great deal of testing. Cutting back on gluten, seeing my chiro, and taking a baby aspirin daily has helped a lot. I may have to take the prescription for plaquanil that I was given at some point, but for now I am felling better.

 

Something I learned from a great deal of research was the importance of oral health. I am having my root canaled teeth pulled, because the bacteria that grows there can spread and cause imflamation throughout the body. No one told me this when I had the root canals, but just switching to xylitol toothpaste that kills that bacteria has helped, so getting rid of the problem should be even better.

 

Get into a good rheumatologist, and ask lots of questions. The important thing is to get the imflamation down so it does not do further damage to your body, and so your body can heal properly.

 

What toothpaste do you use? I had my first root canal a couple of years ago, and then my autoimmune issues started. I've often wondered if there was a connection.

[melissamomof5]

I need to see my doc about this very thing. I have terrible back and hip pain (not to mention my knee!) that comes and goes with no injury. Right now I can't bend/move/walk/sit because of my pelvis. The chiro helps enormously. But I am already gluten free. I have been suspecting for a few weeks that I may have another allergy or intolerance that is affecting me, as my rashes came back. Looks like now I get to cut more food out. :glare: I was already considering going paleo/primal, so now it looks like I will for sure starting with payday. There is a specific primal autoimmune diet plan. Have you seen that? I will try to find it later. It cuts out tomato and peppers which are two of my favorite things, so I'm not exactly excited about it...

 

Thank you for sharing! I will try to look up the specific primal plan. My doctor did mention those as two culprits. The guy at the health food store told me he found he can handle some of the night shades raw but not cooked, which makes sense with some research I've done. Interesting to think about.

[Tammyla]

:grouphug::grouphug::grouphug:

[mommymilkies]

I missed the discussion on xylitol. I also use Spry toothpaste when I can find it at the HFS. My kids even love it. We also have xylitol candies and mints. I do have some dental work that needs done. I have some abcessed wisdom teeth that I need removed, but I have a phobia of having teeth pulled (with good reason-I react very badly to the numbing agents).

 

Did you say you take turmeric? As pills or just in food? How much? I use it in cooking sometimes but haven't heard of it for autoimmune issues. My 7 yo has profound Hashimoto's, so I would definitely try it anyway. Gluten free has helped her tons already. Her tsh is finally normalizing on meds.

[melissamomof5]

I missed the discussion on xylitol. I also use Spry toothpaste when I can find it at the HFS. My kids even love it. We also have xylitol candies and mints. I do have some dental work that needs done. I have some abcessed wisdom teeth that I need removed, but I have a phobia of having teeth pulled (with good reason-I react very badly to the numbing agents).

 

Did you say you take turmeric? As pills or just in food? How much? I use it in cooking sometimes but haven't heard of it for autoimmune issues. My 7 yo has profound Hashimoto's, so I would definitely try it anyway. Gluten free has helped her tons already. Her tsh is finally normalizing on meds.

 

I am taking a tumeric capsule a day. You supposedly can take up to 3. It is for inflammation. :) Glad to hear your daughter is doing better.

[prairiewindmomma]

I also recommend seeing a rheumy.

 

I have no amalgam fillings, didn't see any improvement eating glutenfree/paleo/nightshade free, already took vitamin D and fish oil and B vitamins.......for me plaquenil did the trick. It kicked in about 6 months after I started taking it....It's truly awesome to be pain free again. :)

 

FWIW, general inflammation in the body is correlated to high risks of heart disease, cancer, and other serious disease. It *is* important to get that under control.

[melissamomof5]

I also recommend seeing a rheumy.

 

I have no amalgam fillings, didn't see any improvement eating glutenfree/paleo/nightshade free, already took vitamin D and fish oil and B vitamins.......for me plaquenil did the trick. It kicked in about 6 months after I started taking it....It's truly awesome to be pain free again. :)

 

FWIW, general inflammation in the body is correlated to high risks of heart disease, cancer, and other serious disease. It *is* important to get that under control.

 

Thank you for sharing. I haven't heard of plaquenil. I'll have to look that up. I guess I'm more surprised my dr didn't push this further because she knows we have a family history of heart disease and arthritis. :glare:

 

Still waiting for their return call.

[EKS]

Is this doctor an MD? Because I can't imagine an MD (at least a good one) seeing a "quite positive" result for an inflammatory autoimmune disease, prescribing an herb, and suggesting that extreme fatigue, strange itchy bumps, and whatever else are due to a food allergy.

 

You need to see a doctor who is willing to get to the bottom of your symptoms.

[melissamomof5]

Is this doctor an MD? Because I can't imagine an MD (at least a good one) seeing a "quite positive" result for an inflammatory autoimmune disease, prescribing an herb, and suggesting that extreme fatigue, strange itchy bumps, and whatever else are due to a food allergy.

 

You need to see a doctor who is willing to get to the bottom of your symptoms.

 

I agree. It was a bit strange and the more time that has gone by and the more I've researched and thought about it, I have felt really put off about it. She did give me some prescription for the inflammation, but said if the tumeric was working that is okay. The pain has been pretty well controlled since then, though I can always feel it there.

 

They just called me back and are seeing me tomorrow so I will ask for a copy of the blood test results and perhaps a referral to a rheumatologist.

[Jean in Newcastle]

Curcumin is the active ingredient in tumeric that is anti-inflammatory. I take it for inflammation. It was the one thing that helped me get over pericarditis when prescription medication was not enough.

[melissamomof5]

Curcumin is the active ingredient in tumeric that is anti-inflammatory. I take it for inflammation. It was the one thing that helped me get over pericarditis when prescription medication was not enough.

 

That's wonderful! I love it when something "natural" works so well!

[eight_gregorys]

I have lupus and rheumatoid arthritis. I would definitely get to a rheumatologist. I have tried every "trick" out there that I heard would help with both of these diseases. Gluten-free, fish oil, low-carb, and I could go on. The only thing that has helped me is being properly treated by a rheumatologist. I'm sure that some natural remedies do work for some people. I tried this route initially and because I didn't seek out my rheumatologist first, I have unreversible joint damage in my hands and shoulders. I developed ulnar deviation in about 6 months time and I'm only 30.

 

Anyway, I don't mean to sound scary or anything. I just know that my rheumatologist strongly encourages treatment as early as possible because things can happen quickly.

 

I also think it is interesting that Vitamin D deficiency seems to happen a lot with those with autoimmune issues. I have had the same issue for several years. Also, be careful about your sun exposure until you find out for sure what you are dealing with. Sun exposure will make lupus worse.

 

I hope that you get some answers soon.

[Green Vixen]

Hi Melissa,

 

Sorry you are going through this :grouphug:! I can't believe your doctor left you hanging like that, hopefully she will call you back and give you more information.

 

Saying you were positive for inflammatory autoimmune disease can mean a very wide range of things. She could mean you have some elevated inflammatory markers or a positive ANA or RF. All of which can mean something or nothing, so try not to worry until you get more information. If she does think you have an AI condition she should refer you to a Rheumatologist who specializes in those conditions.

 

As for your hip pain I saw you have a 1 year old. Have you been having problems since he was born or just recently? Did you breastfeed? Was the x-ray of your hips, pelvis, sacroiliac joint?

 

After having my twins I started having a lot of new symptoms (I already had Fibromyalgia and Chronic Fatigue Syndrome). They ended up diagnosing me with Undifferentiated Connective Tissue Disease, with symptoms of SLE, RA and Ankylosing Spondylitis. The only medication that has helped so far is Prednisone but I just started Enbrel injections so hopefully it will help.

 

I truly hope your symptoms are just from the Vit D deficiency and are not anything else. It is very difficult having an AI condition with little ones.

 

Marisa

[melissamomof5]

I have lupus and rheumatoid arthritis. I would definitely get to a rheumatologist. I have tried every "trick" out there that I heard would help with both of these diseases. Gluten-free, fish oil, low-carb, and I could go on. The only thing that has helped me is being properly treated by a rheumatologist. I'm sure that some natural remedies do work for some people. I tried this route initially and because I didn't seek out my rheumatologist first, I have unreversible joint damage in my hands and shoulders. I developed ulnar deviation in about 6 months time and I'm only 30.

 

Anyway, I don't mean to sound scary or anything. I just know that my rheumatologist strongly encourages treatment as early as possible because things can happen quickly.

 

I also think it is interesting that Vitamin D deficiency seems to happen a lot with those with autoimmune issues. I have had the same issue for several years. Also, be careful about your sun exposure until you find out for sure what you are dealing with. Sun exposure will make lupus worse.

 

I hope that you get some answers soon.

 

Thank you for sharing. I agree it is very interesting to see the link between the Vit def and autoimmune disease. I wondered if one caused the other.

 

I would probably go on and on like this and just deal with it, but like you said, I wouldn't want it to go from this to something worse. I'd rather find the problem and treat the cause. kwim.

[melissamomof5]

Hi Melissa,

 

Sorry you are going through this :grouphug:! I can't believe your doctor left you hanging like that, hopefully she will call you back and give you more information.

 

Saying you were positive for inflammatory autoimmune disease can mean a very wide range of things. She could mean you have some elevated inflammatory markers or a positive ANA or RF. All of which can mean something or nothing, so try not to worry until you get more information. If she does think you have an AI condition she should refer you to a Rheumatologist who specializes in those conditions.

 

As for your hip pain I saw you have a 1 year old. Have you been having problems since he was born or just recently? Did you breastfeed? Was the x-ray of your hips, pelvis, sacroiliac joint?

 

After having my twins I started having a lot of new symptoms (I already had Fibromyalgia and Chronic Fatigue Syndrome). They ended up diagnosing me with Undifferentiated Connective Tissue Disease, with symptoms of SLE, RA and Ankylosing Spondylitis. The only medication that has helped so far is Prednisone but I just started Enbrel injections so hopefully it will help.

 

I truly hope your symptoms are just from the Vit D deficiency and are not anything else. It is very difficult having an AI condition with little ones.

 

Marisa

 

My ANA was positive, but she said the other results were not specific as to what we were dealing with. The problems started when my son was probably 1 1/2 years old. He'll be 2 the 22nd. As far as I know the x-rays were just of my hip. My chiropractor did a bunch of x-rays but that was when my son was probably 4 months old, so it's been a good while. I did nurse him for 16 months.

 

Thank you for responding and trying to help me out. :)

 

She is seeing me tomorrow about the rash on my legs, but I will be asking if she thinks the blood panel or rheumatologist appt is a good next step at this point and I will also ask for a copy of my bloodwork. I wanted to ask the first time but I didn't.

[acurtis75]

Have you considered juicing? You should still see a rheumatologist but if you haven't watch the documentary Fat, Sick & Nearly Dead you might consider it. I believe the problems the gentlemen who made the video had were auto-immune related. I agree with pp who said some doctors discount natural methods too soon while others medicate too quickly. I would see a traditional md but also explore juicing and then add things back to your diet slowly to discover any allergies.

[melissamomof5]

Have you considered juicing? You should still see a rheumatologist but if you haven't watch the documentary Fat, Sick & Nearly Dead you might consider it. I believe the problems the gentlemen who made the video had were auto-immune related. I agree with pp who said some doctors discount natural methods too soon while others medicate too quickly. I would see a traditional md but also explore juicing and then add things back to your diet slowly to discover any allergies.

 

Yes I have. We have been looking for a good used juicer on craigslist. My husband just mentioned to me today to ask our friends to borrow theirs (again :tongue_smilie: ) and try a juice fast. I just may do that. :)

[CupOCoffee]

I have lupus and rheumatoid arthritis. I would definitely get to a rheumatologist. I have tried every "trick" out there that I heard would help with both of these diseases. Gluten-free, fish oil, low-carb, and I could go on. The only thing that has helped me is being properly treated by a rheumatologist. I'm sure that some natural remedies do work for some people. I tried this route initially and because I didn't seek out my rheumatologist first, I have unreversible joint damage in my hands and shoulders. I developed ulnar deviation in about 6 months time and I'm only 30.

 

Anyway, I don't mean to sound scary or anything. I just know that my rheumatologist strongly encourages treatment as early as possible because things can happen quickly.

 

I also think it is interesting that Vitamin D deficiency seems to happen a lot with those with autoimmune issues. I have had the same issue for several years. Also, be careful about your sun exposure until you find out for sure what you are dealing with. Sun exposure will make lupus worse.

 

I hope that you get some answers soon.

 

:iagree:

 

I too have RA, and I can't stress enough about getting early and aggressive treatment. There is no *cure-all*, but getting proper treatment early can mean the difference between irreversible joint damage and not. Personally, I would rather take the treatment than lose the use of my hands and other joints due to severe deformity -- it can come on fast and furious.

 

I am not saying that I think that is what you have, but I am saying that you really should get a once-over from a rheumatologist, even if it ends up ruling out some things.

 

~coffee~

[melissamomof5]

:iagree:

 

I too have RA, and I can't stress enough about getting early and aggressive treatment. There is no *cure-all*, but getting proper treatment early can mean the difference between irreversible joint damage and not. Personally, I would rather take the treatment than lose the use of my hands and other joints due to severe deformity -- it can come on fast and furious.

 

I am not saying that I think that is what you have, but I am saying that you really should get a once-over from a rheumatologist, even if it ends up ruling out some things.

 

~coffee~

 

Thank you for the encouragement and sharing. :) I am glad you shared because you have helped me see that in the long run it IS better to pay to see the rheumatologist and be told nothing is wrong rather than to not go at all and really "pay" later. :001_smile:

[melissamomof5]

My dh got real help for his arthritis (it was sudden onset and preventing his walking and so on) by getting rid of gluten. Period. No more at all. He also had to get treatment for leaky gut, and he has supplements from a nutritionist who has helped both of us immeasurably. (I am a walking auto-immune disaster.)

 

Give it 8 weeks of no gluten. Also, if you really want to get after this and are committed to finding a solution, go off dairy, too. Then in 8 weeks, test first dairy then gluten and see if you notice any difference.

 

AND see the rheumatologist.

AND see a nutritionist.

 

Don't wait for it to get *really* bad. The sooner the better is better.

 

Thank you for the encouragement. I am definitely considering the no gluten no dairy.

[melissamomof5]

Okay, I saw my dr today.

 

She said rash just looks like allergy and to treat with cream.

 

I am now in for a referral to a rheumatologist. She was not happy I have not been taking the prescription she gave me...naproxin. I thought we left it as if I needed it take it, but the tumeric takes the edge off enough I can live with it. She said if I don't take it before seeing the rheumatologist he'll wonder why in the world I came in without taking it first. :glare: She made sure I knew it was really hard on the belly. :confused:

 

Anyway, I got my blood test results as well. I really am not sure what they mean if anything.

 

Vitamin D was 23. I am not sure that is severe, but definitely low.

SED RATE was 5, I think that's good?

C-Reactive Protein was <0.5

ANA 1:160

Rheumatoid Factor <10

 

From what I can tell the results aren't that bad. Do you think it warrants the rheumatologist? Or just a strict dietary change?

[elizabeth]

I have lupus and rheumatoid arthritis. I would definitely get to a rheumatologist. I have tried every "trick" out there that I heard would help with both of these diseases. Gluten-free, fish oil, low-carb, and I could go on. The only thing that has helped me is being properly treated by a rheumatologist. I'm sure that some natural remedies do work for some people. I tried this route initially and because I didn't seek out my rheumatologist first, I have unreversible joint damage in my hands and shoulders. I developed ulnar deviation in about 6 months time and I'm only 30.

 

Anyway, I don't mean to sound scary or anything. I just know that my rheumatologist strongly encourages treatment as early as possible because things can happen quickly.

 

I also think it is interesting that Vitamin D deficiency seems to happen a lot with those with autoimmune issues. I have had the same issue for several years. Also, be careful about your sun exposure until you find out for sure what you are dealing with. Sun exposure will make lupus worse.

 

I hope that you get some answers soon.

 

Thank you for this post. I do not think most people understand that if the SED rate in blood is high that it can kill them.

[elizabeth]

Your SED rate is low. You are doing the right thing to see the Rheumatologist as the MD is not communicating with you well. Naproxen can cause upper GI bleeds. Don't ask. It happened to me and I had to drink a lidocaine cocktail to stop the spasms. I hope your appt turns out to be an abundance of caution there are many, many mothers here with autoimmune disorders. Best of luck to you.

[melissamomof5]

Your SED rate is low. You are doing the right thing to see the Rheumatologist as the MD is not communicating with you well. Naproxen can cause upper GI bleeds. Don't ask. It happened to me and I had to drink a lidocaine cocktail to stop the spasms. I hope your appt turns out to be an abundance of caution there are many, many mothers here with autoimmune disorders. Best of luck to you.

 

Thank you for the response. I am so sorry to hear what you have been through. :( I am scared to death to take any medication, but now even more. It has been a very very very long time since I've taken anything but a natural supplement.

[HiddenJewel]

If your D is extremely low only taking 5000iu per day may not be enough. So you may want to watch your levels to make sure they are coming up with the smaller amount.

 

With any kind of chronic illness, a multi-pronged approach is probably going to serve you best.