pretty sure i have lyme but no one will diagnose it

Hey, this is my first time posting on this forum. This is probably going to be long so sorry in advance... I just don't what to do anymore...I've been having Lyme symptoms since July and it's basically ruined my life. I was supposed to move into college in Sept. but these symptoms were eating me alive and they still are and now I'm stuck in an abusive household I've spent my whole life trying to get away from and I'm sick with something no doctor can diagnose...It's just all so stupid, I worked so hard to get to this point in my life and right when things are about to finally get better and change, I get this stupid disease. Rant over lol.

Ok, so my entire body is messed up. I can't even type all of my symptoms because it's so much. I tried to write down all of my symptoms and when they came the other day and it ended up being 4 pages long...but basically every single part of my body is effected in some way. My vision (seeing black dots/sparkles/floaters/shaking/flashing/it's so annoying why), I have constant pain in my chest, ribs, back, and stomach. I get twitching, tingling, weird sensations like feeling like water is dripping or exploding in my head and the rest of my body, weakness/feeling faint/tired all the time/barely being able to walk, swelling, loud crackling noises in my neck and throat & now weird noises in my stomach as well, ear problems, and my #1 favorite symptom that just started last month: not being able to swallow anything. even my own saliva and water are difficult. I've been living off of yogurt, flan, and protein drinks....I've lost 30 pounds and I feel so weak all the time. I tried to summarize the best that I could idk I hope this makes sense.

I've seen a ton of specialists: eye doctor (found nothing), neurologist (made me get a spinal tap and EMG. they both showed nothing and made me feel worse. after the EMG i felt like I was going to die. I had to go to the ER. my head felt so heavy I felt like I was gonna tip over and fall, I couldn't stand up. scariest thing ever), rheumatologist (the only nice doctor I got, she tested me for a lot of things but all that came up was low vitamin D and negative for lyme , GI doctor (hasn't really done anything bc i refuse to get an endoscopy), ENT's, a cardiologist once and I think that's it.

I don't think the neurologist I went to was "lyme literate" though. Because if he was, he wouldn't have made me get a spinal tap after 2 months of symptoms, as if it would show up there. Although I was also worried about MS so I guess that's why he made me have it. I can't find any lyme literate doctors in my area so I don't know what to do :/ I've had a lot of testing done, blood tests, 500 chest xrays, neck xrays/catscan, brain mri/catscan (showed 2 lesions but doc said it meant nothing), EKG's, and nothing.

My ENT sent me to get a barium swallow and a swallow study videofluoroscopy for the difficulty swallowing and I'm scared that it'll effect my other symptoms but I guess I'll have to do it anyway. Has anyone else had these studies done while having lyme symptoms? And how did you end up finding a doctor that diagnosed you? Everyone has pretty much given up on me. The ER never helps and they send me to specialists but those don't help either. I'm trying to find a new neurologist that's lyme literate but it's hard...

Anyone else have all these symptoms and everything comes back negative? What do you suggest? I guess I just want some reassurance that I'm not alone. I feel like I'm dying most of the time and it's so annoying when I'm only 18 and I feel like I can't function and I can't move on with my life...doctors tend to brush everything off bc of my age too and say that I'm too young to have health problems or that it's just "anxiety" or "hallucinations". lol sure. it's been almost a whole year. It's so annoying feeling like I can't trust any doctor to help me, that's what they're supposed to be there for, you know? And this is seriously messing up my mental health too. Like it's making me depressed and ruining my outlook on life. This post is getting too long but honestly I'd appreciate any responses. Thanks.

Hi Really Sick - welcome to our community!

I am so sorry for all your suffering...but am glad you have found us here. We can help.

You really need to see a LLMD. we can help with that. For member recommendations, start a new thread: "Looking for LLMD in/near______" and fill in the blank.

Then enable your email option so members can send you names privately. We don't post their names on here for privacy reasons - we need to protect our Docs.
You can enable your email through "My Profile".

In addition to members recommendations, you can also contact ILADS :

ilads.org/ilads_media/physician-referral/

...and you can also email me by clicking on the envelope below my screen name on the left. I will look through my list of LLMD"s and send you any in your area.

I also had difficulty with my throat...and would choke on pieces of food and even my own spit sometimes.
I had a barium swallow X-ray - and it showed nothing. Then I went to an ENT Dr. and he put a camera down my throat (via my nose) and found nothing either. I guess I was having good days...in both cases.

I went to two Endocrinologists, an ENT Dr., Neurologist, Physiatrist, 4 or 5 Physiotherapists, 2 ND's and 4 'regular' Dr.'s.
No one was able to help me...until I got my positive Igenex WB and saw a LLND.

I suggest that you read through the "New to Lyme..." thread at the top of the page.

...and you should also start detoxing....to help your body flush out toxins from the bacteria die-off.
You will need this when you start treatment...and even now it can help because the bacteria is dying off due to it's lifecycle.

Really Sick, very few of the medical community are going to recognize that we have Lyme, even though by now they ought to be seeing a pattern with folks and their symptoms. They are bent on checking you for disorders they learned about in their schooling, unless they're the kind to do after hours research.

We often get a negative test, you probably know why by now, so I won't go into the problems of antibody testing, and often times our inexperienced doc can't read the results correctly.

Do you have a copy of the test?

It sounds like you're living in a difficult environment. That's a tough thing to have to do while you're trying to heal. Our own immune function has to be put and kept in good condition to really heal from these infections.


We're here for you whenever you need help or have questions.

If you're wondering about the Igenex test for lyme that caramba mentioned:

www.igenex.com

You can call them and they will send you a test kit.
You will want to get the Lyme Western Blot IgM and IgG - for $210

A Dr. will have to sign the lab req, though...but it doesn't have to be your regular Dr. It can be any Dr., including a chiropractor, or a ND.

Then you get the blood drawn...send it off via Fedex. Do the test on Monday, Tuesday latest..as you don't want the samples to be sitting over the weekend when Igenex is closed.

Really Sick said...
Girlie,yeah I was gonna ask about that so thanks! thanks to everyone else's replies as well. I had a western blot test and it came back normal, is Ignenex more accurate for this then? I was just on the website and they seem to have a lot of lyme tests, do you have to do all of them or just the western blot?

Igenex is better, yes. The company specializes in testing for tick borne diseases.

I, and many of us just do the WB - for cost reasons. ($210)

If I had an endless pit of money, I would do more testing...but I don't.

It takes approximately 3 weeks for test results.

When you get them, you can post them on this forum and we will help you decipher them.

You can get a negative test result...but there can be some lyme specific positive bands show up that indicates lyme.

Really Sick said...
I was supposed to move into college in Sept. but these symptoms were eating me alive and they still are and now I'm stuck in an abusive household I've spent my whole life trying to get away from and I'm sick with something no doctor can diagnose...It's just all so stupid, I worked so hard to get to this point in my life and right when things are about to finally get better and change, I get this stupid disease.

This is a tough position to be in and I know the feeling as I'm in a similar situation. I just want to walk away. But if my symptoms aren't ruining me, my environment doesn't help either. I had to postpone my college applications another year (which I have to be secretive about) because my family want to manipulate, degrade and guilt trip me into staying and I'll be darned if they sense I may leave soon anyway and try to hurt my chances. I just called a crisis line because of it. If only for better health care in a state with more LLMDs and to get away from a toxic environment. It is not wise to leave now because I'm not fully well and would endanger my health and safety, and everything I've worked for and somehow I have to try to stay safe for another year (!)

And I'm just now getting some of the medicine I need from a free county clinic (Azithromycin for instance) and try to explain to my family what I need to get well (low stress and peaceful environment, plenty of sleep) and I get berated for having too much anxiety or depression to go to the grocery store. *Sorry for my rant also.

Edit: Oh and welcome btw...this is a horrible disease, good luck getting a diagnosis and learning about treatment, it's not easy but it can be done, wanted to leave on a good note Oh and your story sounds all too familiar I've seen a dozen or so doctors and few of them are adequately informed about this growing epidemic. I can only cite 5-12 or more LLMDs or world experts whose work I follow to learn more about tick borne disease and Co. Again good luck, there is plenty of support if you search the threads, you'll see how many have gone through this or are going thru this.

Post Edited (borrelioburgdorferii) : 4/3/2017 7:22:22 PM (GMT-6)

Girlie said...
Hi Really Sick - welcome to our community!

I am so sorry for all your suffering...but am glad you have found us here. We can help.

You really need to see a LLMD. we can help with that. For member recommendations, start a new thread: "Looking for LLMD in/near______" and fill in the blank.

Then enable your email option so members can send you names privately. We don't post their names on here for privacy reasons - we need to protect our Docs.
You can enable your email through "My Profile".

In addition to members recommendations, you can also contact ILADS :

ilads.org/ilads_media/physician-referral/

...and you can also email me by clicking on the envelope below my screen name on the left. I will look through my list of LLMD"s and send you any in your area.

I also had difficulty with my throat...and would choke on pieces of food and even my own spit sometimes.
I had a barium swallow X-ray - and it showed nothing. Then I went to an ENT Dr. and he put a camera down my throat (via my nose) and found nothing either. I guess I was having good days...in both cases.

I went to two Endocrinologists, an ENT Dr., Neurologist, Physiatrist, 4 or 5 Physiotherapists, 2 ND's and 4 'regular' Dr.'s.
No one was able to help me...until I got my positive Igenex WB and saw a LLND.

I suggest that you read through the "New to Lyme..." thread at the top of the page.

...and you should also start detoxing....to help your body flush out toxins from the bacteria die-off.
You will need this when you start treatment...and even now it can help because the bacteria is dying off due to it's lifecycle.

Thanks for all of your replies. I was gonna get that test at the ENT with the camera down your nose/throat but I'm terrified of gagging/choking or passing out...however it's my only option besides an endoscopy which I don't want to do b/c I don't want to be sedated for anything. How did you feel during the test/did you feel like you were gonna choke at all? That's the main thing I'm scared of. Did your difficulty swallowing eventually go away? Did these tests have any side effects on you? Sorry for all the questions, this test just freaks me out and I've been putting it off for so long. I'm still getting the barium swallow soon, I hope I'm able to get the barium down :/...and not choke to death.