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Worried Thing Are Not Going To Get Better


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Ok, I am really done today. I woke up about 10:00 am and could not get out of bed untill around noon then I tried to get up and clean up some and ended up in the recliner the rest of the day. I am just sitting here with a bad headace and so woren out. I now it asking alot, but I just want things to improve. I went to the doctor on tuesday. He also seem worried about how things are not getting better. He is working ona referal for me right now. There are getting a hold of dr. grubbs office and dr. lowa office, and see which one can work me in the fastest. I tolf my doctor I am ready to give up hope of getting better, and get give in that this is my life. He told me we are not at that point and he is not giving up. He siadi we are going to everything to find the right treatment. ( I just hopt that is out there.) So please keep it in your thoughts that one of the referals og thought soon.

Thanks for listing!


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Guest sonotech


I have felt the same way recently. It is just so tough when things seem to be going down hill and meds aren't working.

You really need some support right now, so if you don't have family that will give you the support you need then I hope you will come to US for it!!

This illness can drain us both physically and mentally. It is so discouraging when you know that your doctor has tried everything he/she knows of and you still don't feel better. Even the thought of having to be referred, YET AGAIN, can be tough.

It sounds like your doc is really trying hard, and that is great. I am sure your doc will do his best to get you in to someone asap! I know how you feel, am there right now myself. I will certainly be thinking of you and wishing you a quick referral!

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Hi Amy,

I have been where you are right now, and I know things literally stink. Some of my symptoms have let up a bit for the time being (thank goodness)....When you are in those bad symptomatic phases, it's hard to think that things are going to get better....I'm hoping that they DO get better for you and I also hope that you get into see a doctor who can give you more help.

Hang in there and we're all here to support you! :angry:


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Dear Amy,

I was reading some of your past posts an am concerned your docs have missed something. With your history of facial numbness, joint pain, fatigue, rashes, etc, etc. I think you may have Lyme disease. Yes, they do have Lyme in Iowa contrary to what non-Lyme knowledgeable doctors think. Most doctors in Iowa are not aware of Lyme and co-infections, so most Lyme patients in Iowa see Lyme specialists out of state.

Joint pain is NOT caused by POTS and Lyme DOES cause joint inflammation and POTS. Serious infection from Lyme that has not been treated can cause damage to the nervous system and heart. Chronic headache, stiff neck, muscle and joint pains, fatigue, numbess or twiching on one side of body, vision issues (floaters) and brain fog are ALL huge red flags for Lyme.

PLEASE, PLEASE send me a PM. I want to help you and know first hand (personal experience) about Lyme causing POTS. I can refer you to a real Lyme doctor who knows about testing and treatment. Lyme is treatable, even at the chronic stage.

PS. Mayo knows nothing about Lyme. Been there, done that.

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