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New Here...hopefully Someone Can Help

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closure Newbie
closure
Posted

Hi everyone. I'm 27 and female. I'm not sure exactly how to post here since it looks like all the posts have been pinned on the board so I'm hoping people still see this. Anyway I'm going to keep my intro pretty short because honestly I've done it a billion times now...I've been to forums for IBS, crohns, ulcerative colitis, lupus, lyme...you name it I've been there and told my story. I've been referred to you guys so here I am. I copied my usual post so here are my symptoms.

newest symptom...a large marble size lump behind my left ear. it feels just like a marble too. I have a crappy doc which I will talk about later who didn't quite know what it was...*thinks* it's a lymph node, but won't investigate anything. I looked around and do believe it's a lymph node. told me to come back in 3 weeks if it hasn't gone away and then she'll investigate...just hope it's not the size of my head by then!

severe diarrhea...this has been going on for years, but has gotten worse in the past month or two

rectal bleeding...also going on off and on for years, but got worse this past month

stomach cramping

I've been told I'm bipolar so obviously depression, mania, and on top of that severe anxiety and panic attacks

I have a cough that won't go away...been told it could be asthma

headaches

blurry vision

a rash on my stomach that's been coming and going for two years now. doesn't spread...first started when I was diagnosed with mono 2 years ago...doc again has no clue what it is.

mouth sores on my tongue that come and go...also been about 2 years for those too. again the doc has no clue what they're from or what to do about it

severe joint pain

muscle aches

back pain

dislocating joints, mostly knees

been diagnosed with PCOS

also diagnosed with hashimotos and hypothyroidism

hair loss

insomnia

severe fatigue...been told it could be post viral syndrome since I had mono a few years ago

dehydration all the time...been to the ER twice for the stomach problems and this so I've been on an IV twice in just a few weeks

I've had raised white blood cell counts in the past and the doc I have couldn't explain them or look for reasons why

often have blood found in urine tests. it's not bad enough that I can even see it when I go to the bathroom, but for the past couple of years when I've had urine tests it's shown up

I think that's all for now. I have a really crappy family doc that won't investigate anything! Then if she does do anything she generally doesn't know what the numbers mean, like on blood tests and stuff. I see her, an ob/gyn, an endocrinologist, and now a GI. I got sent to the endocrinologist because she didn't understand my thyroid readings and now they keep trying to force diabetes drugs on me because of my PCOS. All those meds do is make me sick so I haven't been taking them. I have to do a new blood glucose test soon so if it says I need them I will take them, but if not I refuse! I have a colonoscopy scheduled for July 31st because of the stomach problems and bleeding. I'm not a difficult patient, except for at the endo. I do what I'm told, take what I'm supposed to take, but I still feel horrible. I want to switch family docs for obvious reasons, but have been having a hard time finding a new one...when I have the energy to call around that is. I have a family history of lupus(mother), MS(aunt), crohns(cousins), cancer(too many family members to list) and various other disorders.

anyone have any ideas? I'm beginning to give up hope. *sigh*

so there's me in a nutshell. thanks to anyone with advice. also I've looked around the forum a bit and have read that a diet for celiac can be expensive...I'm on SSD so I'm on a limited income. If I do have celiac does anyone know how to get the govt to give me more money so I can eat stuff that doesn't make me sick? I know it's a long shot, but I thought I should ask just in case.

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psawyer Proficient
psawyer
Posted

Welcome!

Not direct to the symptoms, but on this board all approved topics are pinned once a moderator has reviewed them (as I have just done to this one), and decided that they are appropriate to the board and are in the right section.

closure Newbie
closure
Posted
  • Author

thanks for the welcome and the explanation. I read that somewhere about the pinning after I posted lol.

TammyK Apprentice
TammyK
Posted

Hello to Closure,

Wow! Sounds like you have really been dealing quiet some time...I am so sorry you have had so much trouble. I don't feel much able to advise you but want to share something small with you that I found to help me with multiple health issues. I recommend you to seek medical care from both a N.D. (naturopath) and M.D. Three times I have had been thrown into crisis mode, twice with my daughter and once with me. During those times I just had to take one day at a time. I sought medical attention from several different sources, one at a time though so as not to get too overwhelmed and confused. In the end, I found the N.D. to be much more helpful. She actually listened to me, believed me and responded quickly to my needs. Then, her perscription for better health was always the one that worked. I suffered from hypothyroidism for years (and didn't know it) and my medical doctor told me my blood tests were perplexing but didn't choose to treat. The M.D. brought me in every 6 weeks to "monitor". Meanwhile I was so depressed and fatiqued, horomonally off my rocker, and about to leave my husband and children with the credit card in hand. I was so very sick. Finally, the N.D. heard my heart, looked past my confusing bloodwork and treated me. That was the first day of the rest of my life, if you know what I mean! All that to say, I strongly recommend naturopathic care mainly because they treat holistically and because they treat symptoms first and consider testing second. They also look for the root of health problems and treat that instead of trying to get rid of the symptoms. I also believe that the medical doctor has his/her place too. Sometimes we need both kinds in order to fully treat the whole gammut of problems we are having. I continue to see both but usually find my N.D. to be the most helpful. With as many as symptoms you have, a N.D. would be better able to relate them together.

N.D.'s too understand food issues. Medical doctors know very little about food allergies and intolerances. My N.D. basically told me that food was likely the culprit behind my daugher's newly induced seizures but that she was not trained to help me any further with it (anotherwards, "go see your N.D.") Food continues to amaze me as being the source behind almost any symptom!

I understand that money is an issue. (It is for me too). I had a very kind doctor who actually waived 30% for me so I could see her. Maybe you could ask around your community to find about differnt N.D.'s in town, and show up at the office and ask about fees. Let them know of your circumstances and maybe someone will work with you. N.D.s are often more concerned about getting people well than making their rightful paycheck. At best, maybe you could see a N.D. one or two times to try it out. Don't forget to check into what kind of care they give; some can get kind of hocus-pocus. Mine prescribed meds, vitamins and supplements and some homeopathics with lifestyle management tips. She knew NOT to perscribe anything that wasn't absolutely essential because I would tell her "no way, I can't afford to experiment. I have to know it works". Often I would go home and order it offline for a much cheaper price.

I don't know where I would be today without my N.D. I hope that you can get some relief very soon. I know how hard it can be to have needs that go on and on. You have come to the right place. Lots of people on this forum have been very very sick and can help you.

CarlaB Enthusiast
CarlaB
Posted

I'm just curious how you ruled out Lyme? Your symptoms sure are consistent with it.

Here's a thread on this forum about Lyme. Open Original Shared Link

closure Newbie
closure
Posted
  • Author

thanks for the replies.

TammyK...I'll definitely look into an ND. I've never heard of them before though. I live in a medium sized city so hopefully we have one. I don't drive so out of town docs could become a problem.

CarlaB...actually I haven't ruled anything out yet. Just looking for possiblities. my family doc won't do anything she doesn't see absolutely necessary so it's going to be hard to get her to check me for anything without having a lot to back it up. I live in an area that is notorious for ticks...well not exactly the area, but I live by a state park that has them everywhere and I used to frequent it a lot before I got sick. I never saw a tick or a bullseye type rash so that could be a problem when asking my wacko doc for blood work. I'm currently trying to switch family docs but it's been rough.

CarlaB Enthusiast
CarlaB
Posted

About half the people with Lyme don't remember a tick bite .... some ticks are as big as a period at the end of this sentence.

I would pursue that avenue .... you sure sound like you have a lot of Lyme symptoms. I would suspect Lyme and bartonella based on your symptoms. I'm not a doctor, of course, but if I were you, I'd find a Lyme literate doctor, which we're both quite sure is not your current PCP.

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closure Newbie
closure
Posted
  • Author

thanks again CarlaB. you're the second one to bring up bartonella to me. I'll definitely look into a lyme literate doc.

CarlaB Enthusiast
CarlaB
Posted

That's because a few of your symptoms scream "bartonella" :D

Check out the link I posted as it has a lot of info we've compiled on Lyme Disease and finding a Lyme doctor. :)

closure Newbie
closure
Posted
  • Author

thanks hon...I'll definitely take a look at it later. I just ate a little while ago so I'm starting to get sick...surprise, surprise. going to go lay down for a bit, but thanks again!

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