Why won't anybody listen to me?

[Trying1989]

I'm not saying I definitely have Lyme disease. I just know I have a lot of the symptoms, and I've been tested for a lot of other things that have come back negative.

I know there's something wrong with me, but nobody cares. My head feels like there's an open wound inside of it if hurts so bad. I get dizzy all of the time. My hands are always shaking. I pee sometimes 7 times in a single hour. I can't think straight at all. The other day, I went grocery shopping, came home, and then like an hour later, I realized that I left the groceries in my trunk because I just completely forgot to bring them inside. The same day, I went to the bathroom and walked out holding the used toilet paper (gross I know) because I forgot to put it in the toilet. Just talking to people is a struggle because I have trouble remembering words. Stuff like that...my brain is all messed up. I'm going to wind up getting fired from work b/c I make so many stupid mistakes.

I've been to so many different doctors: neurologist, cardiologist, internist, general practitioners, psychologists, an ENT,  acupuncturist, reiki practitioner, you name it. They don't listen to me. They sit with me for like 8 minutes, act nonchalant like I just told them my only symptom was sneezing or something, and then send me home. Everyone around me thinks I'm crazy since all of these doctors have said there's nothing wrong with me. My family resents me and is really mean to me. I asked them to stop turning the air conditioner up so high because being cold makes me feel so awful, but they just told me to stop making stuff up. I told my dad I don't want to pick my brother up from school because I'm afraid of driving since I can't focus, and he told me to stop being selfish. I don't really have friends anymore because they all think I'm full of BS if I say I don't feel good so I'm going to stay home instead of go to dinner with them or what have you. I'm just completely on my own. I tried going to a psychologist (2 actually) to have somebody to talk to, and even they treated me like I was making stuff up. The second guy straight up told me I had a somatoform disorder and put that in my report and everything. I didn't want his input on the cause of my symptoms. I just wanted somebody to talk to.

I can't do this. I'm so scared and alone. I can't go to a Lyme specialist because I don't have the money nor the means to get to one, not that I know I have Lyme anyway. What am I doing wrong that none of the people I am seeing take me seriously?

[JackieCalifornia]

Welcome to our corner of MedHelp --

First thing:  WE are listening to you.  Don't doubt that.

I scanned through your email and don't have time at the moment to respond fully, but will soon, and others will too.  We have a really good group here -- we're not medically trained, any of us, but we've all danced with Lyme and the mess 'modern' medicine has made of it.

So hang on, check back often.  J.

[JackieCalifornia]

and PS, what part of the country are you in?  Docs in different states/areas are more or less understanding of Lyme, and it's often driven by state medical boards setting standards for diagnosis, so that would color our comments to you, if you would let us know what state you are in, or metro area if near a big city, since those often overlap into a couple of states or are close enough to get to another state that is more open minded about Lyme.

Hang on!  We've been where you are.

[cave76]

It does sound as if you might have Lyme disease. But no one here is able to say you do 'for sure' because the symptoms can mimic many other problems.
Can you possibly get to another doctor ----one who is willing to consider Lyme disease and use tests that are more likely to be correct than the ones you probably had---?

I'm going to guess that you're young. Living at home with your parents, maybe? Which is helpful in one sense but difficult if the people in your life don't believe you.

Do you remember a tick bite? Did you ever have a rash around a tick bite?

In the meantime---- we're here to listen to you. Vent all you want---- I know I have in the past and I'm sure others can empathize.
Week-ends are sometimes a little slow on forums but I'm sure others will come here to tell you how you might find a doctor.

I have to go now but please keep on talking.

[youvegottobekidding]

Dear Trying,

All this definitely sounds lie Lyme disease to me, and you n eed to get to a doctor who understands lyme disease and who knows the right lab to do a reliable test for you.

Well done to you for getting this far and figuring out for yourself that you probably have lyme .- it took me 26 years of being ill the way you describe to reach that point!
I also went through the experience of losing friends (who were never real friends anyway, were they?) so I knwo how much that hurts.

You should email www.ILADS.org right away and ask them to recommend a member doctor in your area. ILADs organises the annual global conference on Lyme disease, and member doctors are the ones who are up to date on this illness.

If you look at the ILADS website you can start educating yourself in adavance on the symptoms, various treatment options, and how to help yourself while waiting for antibiotic treatment, and also perhaps inform your family about this illness, which may help you get some respect and a more helpful attitude from them.
There is a list of symptoms on the website that you could print out to show your family.
I showed this to my husband, who had accused me of being "lazy" once, and he actually cried when he realised that all the things he had regarded as my "annoying personality " were actually symptoms of a disease.

I sometimes have to collect my son from school when I know that I am not in a fit state to drive, and it is extremely worrying. I ask neighbours for help when I can. Is there any other kid in your street who goes to teh same school? Perhaps you could talk to the parents and tell them you sometimes have "problems with your eyes", so you can arrange for them to collect your brother if necessary?
If not, just put your brother in the back, with a seat belt, and drive VERY slowly.

Please keep in touch with us and let us know how you get on.
We've all been through this nightmare too, and we're here to help each other.

[mojogal]

Youvegottobekidding is absolutely right. It sounds like Lyme. You don't need to have a rash or even remember a tick bite. My children remembered for me over 20 years ago when, they were toddlers that they were trying to get a tick off mommy. I had no memory of it so the illness has been in me so long until it had done major damage.

Feel free to vent to us. We know you are not making it up. The same thing happened to many of us. I was told I had MS and Lupus and many other illnesses until I was officially diagnosed last March.

Keep in touch. We are here for you.

[Cynkevtay]

I understand exactly how you feel. Friends tell me how great I look and then ask why I'm not better yet. And get mad that I can't drink or go out with them. I also forget plans all the time. I double check my back seat to make sure my daughter is there. I sometimes can't remember moment to moment. My daughter gets so mad at me because I can't remember anything. Hang in there.. I don't know your situation but the right dr can make a difference. . However any dr can request a western blot from a local lab and ins will pay.

[IndigoRiley]

Wow...It's like I could have wrote this! For a minute I was like, wait did I write this and forget i wrote it? U are NOT alone! I feel for u..I am going through the exact same thing...with the family not "believing" me..thinking i am crazy! And I now have no friends for the same reason u said! It is soo damn lonlely! I have a 5yr old daughter and thankgod recently my mom has stepped up and finally realized I am not just being a "bad parent" or "lazy" but that I have a REAL problem and Lyme Disease is REAL. Its sooo ridiculous how hard it is to get treated! Message me if u ever want to talk, or vent, or anything! U are NOT ALONE!!!

[JackieCalifornia]

I just posted a new message called 'if your family doesn't believe you're sick'

-- get them to watch the *free* documentary online.  It explains a LOT.

search for

                   under our skin watch online

[Trying1989]

Hi everyone. Many thanks for all of the kind responses! I'm sorry I haven't responded all day. I had a lot of stuff I needed to get done today. As for my location, I live near Jacksonville, FL. I actually have been tested for Lyme already through IGeneX. I pestered my old neurologist until he agreed to let me order the test, but he basically wanted nothing to do with it other than providing the necessary signature. The test came back negative (WB IgM and IgG), so I really don't have any indication of Lyme other than my symptoms. I thought that maybe since Lyme patients know what it's like to be ignored by doctors you guys might have some ideas on how to get doctors to listen to me regardless of what I actually do have going on.

Yes, I do live with my parents. Well, my dad. My mom isn't alive anymore. I'm 24 years old. I know it's pathetic that I'm still at home. I want to get out of here so bad, but I've been spending so much of my money on medical tests and crap. That's another reason my dad resents me. He wants me to move out and thinks I would have the money to do so if I quit blowing money on an imaginary (according to him) medical problem.

I don't know what I'm leaving out, but thanks for sharing your experiences and lending your listening ears everyone. I'm glad there are people here who understand.

[JackieCalifornia]

Others here know more than I about how accurate the tests are, so they'll be along pretty soon with their comments.

Good for you for bothering your doc till he signed the test slip!  That means you're a fighter, and that's what's needed against Lyme.  

And it's NOT pathetic that you're living with your parent.  It's hard for anyone who doesn't have Lyme to understand how awful you may feel, since Lyme patients look pretty normal despite how we may feel.

You could try telling your father, or writing him a letter, saying you really appreciate him letting you stay there for a while, and that you will be out just as soon as you can, that you may not look sick, but you're still trying to figure out what's wrong.  My father was a real crabapple, so I hear where you're coming from.  In your situation, I would do the same that you are doing.  Hang on!

[youvegottobekidding]

As far as I know, Igenex is pretty reliable.

IF you don't have Lyme, the other major infection you should consider with your symptoms is bartonella.
It's also spread by ticks and has very similar symptoms to lyme, but the mental symptoms (being do dopey to drive and walking out with the toilet paper in your hand type of stuff) are FAR MORE SEVERE with bart than they are with lyme.

So I would definitely get tested for that.

The good news is, if you have this but not lyme, it is easier to cure than if (like me) you have both of them.

I know this means even more expenditure on tests, but I don't think you should give up searching for an explanation - there certainly is SOMETHING wrong.

BTW I don't think it is at all pathetic that you still live with your father. Why does he even want you to move out anyway? It makes no sense.

[mojogal]

There are foundations Lyme light foundation and Lyme tap that has grants to help those that financially need Lyme help. One of them helps only those 25 and under. Sorry, with my Lyme brain, I can't remember which one. They can help you with testing and going to an LLMD.

I am in Fl and could help you an LLMD  near you. I have a list. Just PM me if interested.

[cave76]

@trying and cyn:

Read this, print it out for friends and family. It's a different way to help others  understand besides the excellent film (Under Our Skin) that Jackie suggested.

The Spoon Theory
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

[Trying1989]

Well, the reason my dad wants me out is he says he's embarrassed by me, which I do understand. People at work ask him what his children are doing with their lives, and he doesn't know what to tell them between me and then my two adult sisters who also live at home. They're not sick or anything, though...just lazy. They won't work and keep failing out of the college classes he pays for them to go to. I was always the driven and smart one in my family, so I was supposed to be the one he bragged about, and now all of the intellect I had is gone. I understand where he's coming from. I wish I could make all of it go away. I feel like a complete useless waste of space like this, but I don't know how to fix it.

I appreciate the suggestions on resources to show my family members, but they're not going to look at any of them. It's all a giant joke to them. I tried telling my dad to watch Under Our Skin, but he won't. I don't think getting my family to believe me is really the answer because it's just not going to happen. I just need to figure out how to work everything out on my own so I can get out of this house.  As for the financial support to help with Lyme, I don't imagine I would be eligible since I already tested negative? I don't know how that all works.

I'm going to look into the bartonella thing to see if my symptoms match it and what kind of doctor I would have to go to request a test. Thanks for that insight. :)

[JackieCalifornia]

If there is a Lyme specialist you have seen or would like to see, I would call their office and tell them your situation and ask if they know of any sources of funding for you.

I have heard of a group called LymeTAP [dot] com -- they have a website -- take a look and see.  Let us know if it doesn't work and we'll brainstorm some more.  You might also search this website we are on now for 'financial aid' or 'financial assistance' and see what old posts come up.

Also, post a new message thread here something like "How to get financial aid for Lyme treatment?"

Hang on!  You can do it.

[Ricobord]

I am so sorry you're struggling with this. I've had the same cognitive problems you describe.  

You can also ask for tests for Brucellosis, another tick borne illness with similar symptoms to Lyme.  It is uncommon, but less controversial than Lyme.  

Be sure to tell the doc you're asking that you got bit by a tick in the past. For some reason, they're hung up on proving possible exposure before they'll order tests, even though about half of all tick borne disease patients don't remember a tick bite.

Hemochromatosis
-------------------------
There is another medical condition that can mimic Lyme, but usually the bad symptoms don't show up until middle age.  It's worth a test, though.  It's called hemochromatosis and it's a genetic condition that causes excess iron storage.  The regular blood test for iron levels don't show whether you have it or not. You need an iron storage test.  Most people who have it don't know they have it, so you shouldn't have to prove it runs in your family before a doc will order a test.

The test most labs use for Bartonella is a bartonella henselae test. It misses a great many genetic variations of the bacteria, so a negative does not exclude it.  IGeneX does a much better test.

While I have heard too many stories of insenstitive neuros, rheumies and ID docs, I have heard some stories of sympathetic psychiatrists.  They are more open to the idea that an infection can affect the brain.  

If your insurance will cover a consultation or a few visits with a psychiatrist, I encourage you to ask for a referral from one of your doctors.  At the very least, a psychiatrist can could say that your issues seem biological, not psychological.  A psychiatrist might even be willing to order a test for Bartonella for you.

Hang in there!  You are welcome to come here for support when you need it.

[youvegottobekidding]

There are so far 26 known strains of bartonella.
Nearly al the online symptom lists I can find jumble the symptoms all up as if they are one illness, but they are not.
Only 2 of them can be tested for in a lab.

There are some very good labs in America (according to my docotr in Europe, where there is NOT a good lab!) and your best bet for getting a diagnosis is to find a doctor from ILADS, as they keep up to date with the best research in this illness.

(you need to delete out the gaps I put in the URL)
This has good info
http://www. cvm.ncsu. edu/news/2012-05-04-Uncovering-Bartonella-the-Stealth-Pathogen.html

Also read this
http://www.cvm. ncsu.edu/news/2010-09-27-IPRL-Research-Advances-Understanding.html

[Cynkevtay]

Thank you for your suggestion. I will def look into it.. Some days the only thing that keeps me driven to beat this is my daughter.

[cave76]

Financial help through one of the patient assistance programs (links follow) has nothing to do with whether your Lyme tests are negative or not. That depends on your LLMD, when you find one.

An older thread about financial assistance follows. There may be some information for you.

http://www.medhelp.org/posts/Lyme-Disease/Financial-assistance-for-needy-Lyme-patients/show/1933554

About your father ---- well, he deserves an "A" for giving you a home. But he gets failing grades (in my estimation) for feeling 'embarrassed' about that.
But sometimes embarrassment masks fear. Let's hope that's his reason----

I'll post more later. You're  having to 'learn' a lot of stuff that it took me months/years to learn by experience----- and you're doing great!

[Trying1989]

Hi guys. I haven't responded in a few days because I've been struggling to put together sentences lately. It feels like half of my brain has shut off or something and is really frustrating because I can't even think of the words to use to ask for help because I can't think straight. Just thank you for all of the responses.

I have been to psychologists and had awful experiences with them. The first one said some pretty mean things to me, and the second one told me it was all in my head...He said I had a somatoform disorder basically, where you have symptoms that are caused by psychological problems. I kind of want to try going to another one, but then at the same time I feel like there's no point because I have so much difficulty thinking straight lately that I wouldn't even be able to articulate what I'm going through anyway.


I just don't know what to do besides lay in bed crying off and on all day long. I hate waking up in the morning because all of these cognitive issues are like torture. I just want to sleep all of the time so I don't have to deal with it. I get so frustrated trying to talk to my co-workers (I telecommute, so all work is done at home and most communication is online) because I can't even process what they're saying to me sometimes that I almost throw up out of frustration.

I had balance testing done a few days ago because I asked my ENT if my balance issues could be related to an inner ear disorder. Of course, the test made me so dizzy that I started crying because it was the scariest thing I'd experienced in a long time, yet the end result was that nothing abnormal was detected. Ugh. The technician who did the test did tell me I should try this other neurologist, though, because he's good. The problem is he's in the same neurology group as my last neurologist, so now they're telling me I have to wait to see if my last neurologist is "willing" to release me as a patient and if the new guy is "willing" to take me on as a patient. So annoying that it's my money and health, but whether or not I get to see someone hopefully confident depends on whether the doctors are "willing" to let me. Ugh.

Anyway, sorry for ranting about a bunch of stuff not related to Lyme.  Just wanted to get my thoughts out or at least try to since I can't really sort them out in my own head.

[cave76]

I'm sorry you're in the depths------ But talking about them might release a bit of your despair---- so 'vent' away. (I don't think what you were say was a 'rant'!)

I was curious what 'balance testing' was. (Evidently it's not vertigo, which I had this year but got 'cured' with a few treatments by a PT. I was skeptical, but it worked!)

Here's the site I just read. Did you have to do most of those tests?

http://balanceandmobility.com/patient_info/testing.aspx

[Trying1989]

Yes, what I meant to say was "vent," not "rant." I also meant to say a doctor who is "competent," not "confident." Sorry, I do that a lot, type a different word than what I meant to say.

The lady who did the balance test did write down that she suggests I get PT for the balance problems. I'm not sure if it's worth it, though, because the balance problems aren't my main concern, and they're very atypical. Like PT sounds like something for people who actually fall down and stuff, and I don't fall. I just feel like I'm going to and can't stand still because I feel like I'm going to lose my balance if I'm not moving around. It's weird. It might be worth it, though.

The testing I had done was just to test my hearing, and then the lady made me follow a red dot on the wall with my eyes and poured water in my ears to stimulate the balance center (that's the part that made me frighteningly dizzy). I didn't do any of the rotational chair stuff or anything. The frustrating part is when this all started, before I ever went to a doctor, I read about how people with balance disorders often have difficulty standing with their eyes closed, so I tried it and couldn't do it for more than a few seconds without swaying. But then I kept trying it over the course of several months until I guess I taught myself how to balance with my eyes closed again, so now I don't sway. So when my neurologist did that test on me, it didn't look like I had a problem, but if he had done it on me a few months beforehand, it would have. Kind of shot myself in the foot there.

[JackieCalifornia]

I'm not medically trained, but I don't think balance issues are significant in making or ruling out a diagnosis of Lyme.  Neurologists tend to dismiss Lyme and look for other explanations, so I wouldn't worry about that test if it were I.

If you want to determine whether you have Lyme or any co-infections often carried by the same ticks, seeing a Lyme specialist is imo the way to go.  It's just not in the neuros' vocabulary.

You know the old old story about the blind men and the elephant, where a group of blind men are touching an elephant for the first time, and each comes away with a different concept of what an elephant looks like, depending on what part of the animal they personally touched.  Here's the short version from wiki:

"In various versions of the tale, a group of blind men (or men in the dark) touch an elephant to learn what it is like. Each one feels a different part, but only one part, such as the side or the tusk. They then compare notes and learn that they are in complete disagreement.

"The stories differ primarily in how the elephant's body parts are described, how violent the conflict becomes and how (or if) the conflict among the men and their perspectives is resolved.

"In some versions, they stop talking, start listening and collaborate to 'see' the full elephant. When a sighted man walks by and sees the entire elephant all at once, they also learn they are blind. While one's subjective experience is true, it may not be the totality of truth. If the sighted man was deaf, he would not hear the elephant bellow. Denying something you cannot perceive ends up becoming an argument for your limitations."

And that is Lyme diagnosis and treatment in a nutshell!

Neurologists will think you have neuro problems, endocrinologists will focus on hormone imbalances, and so on.  Each specialist is correct, but only as to a narrow aspect of what is ailing you.  That's why a doc who understands the variety of Lyme symptoms is so important to see, because LLMDs see the big picture.

So don't give up, because you know something is wrong, and it's just a matter of finding the right doc to put the clues together, whether it's Lyme or something else.

Let us know how we can help, okay?  I went through 20 'blind docs' of my own before finding a Lyme doc.  Take care --

[cave76]

I enjoyed reading that analogy Jackie gave about the elephant and the blind men as related to Lyme. Very good twist!

I've  heard a shorter, different version about the same topic: To a hammer (specialist) everything looks like a nail. They both describe what happen when the whole picture isn't looked at.

I've always thought there should be a medical specialty called  a 'medical diagnostician': If there is, I've never heard of it.

Getting 'specialists' to confer is like trying to herd worms. They might when a person is in very serious straits but for a 'simple' dx for Lyme? Not only do egos interfere but what doctor is going to admit that s/he made a mistake? When pigs fly?