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?
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.
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.
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.
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.
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.
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.
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!!!
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.
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!
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.
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.
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. :)
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?"
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.
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.
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
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!
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.
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.
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 --
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?
You really are being very brave about all this and very focused too, by the sound of it.
The symptoms you are describing are very typical in lyme disease. As Jackie and Cave said, and based on my own experiences with neurologists, they always miss the point.
When I saw a neurologist I had such bad nerve damage I could not feel anyhting in my feet and my hands were going too. I often fell over and dropped things. They looked for some degenerative diseases and when they found I didn't have these, they just sent me off almost making me feel as if I had wasted their time.
The Lyme symtpoms of dizziness and awful cognitive problems youì're having are usualyl relate to magnesium deficiency and vitamin B12 deficiency. Nearly everyone with lyme can get noticeable improvements in these particular symptoms by taking supplements even if they're not yet getting treatment with antibiotics for the infection.
I would strongly recommend you try taking magnesium (start on 400mg daily and you can go up to max 900mg daily) and vitamin B12 (you need a tablet to dissolve under your tongue as you have to get this vitamin through your mouth not your stomach). Take a form of magnesium that ends in -ate (citrate, orotate or whatever) as these forms are the ones best absorbed.
Since you have memory problems too I would also take choline, 100mg a day or so. (I use Solgar brand, 3 tablets a day, which works extremely well)
Just to give you an indication of the difference these made for me, before getting onto abx:
I had such bad memory that I was unable to recognise people, I mean nobody, except my own family. I could not recall who anyone else was and I could not register any information at all unless my husband wrote it on my arm. Using choline, my memory got back to a perfectly serviceable form (not perfect but OK enough to seem normal to other people) in about 5 weeks of taking choline.
I had such bad coordination that I often crashed into door frmes instead of getting through the door and when the doc tried to do a test that involved me walking on a treadmill, I constantly stumbled and fell off it. I was falling down stairs several times a week. I was pretty much normal as far as coordination goes, and my brainworked better, after only one week on magnesium.
Vitamin B 12 takes ages to work but the effects build up gradually so you do get little improvements fairly fast. I had freaky dizzy spells that were pretty much like out of body experiences before taking that. I actually took a course of injections in the end to get lots of it into me. it works with magnesium and I think mag helped get rid of the dizziness too.
Good lluck with it all and don't give up fighting to get the right diagnosis.
i would read up on the suggestions for other possible illnesses that Ricobord mentioned when your brain has better moments, and I would add to that list pernicious anaemia. The symptoms you've got, although they fit lyme, do also fit that illness very closely.
Hi guys, gosh a lot of information to catch up on! So re: the B12 thing, one of my doctors actually did tell me my B12 level was low. He said he'd most likely have to put me on the shots because you don't see levels that low besides in pernicuous anemia lately. However, stupidly before he said this, I told him that I do actually remember having a bit more energy when I've taken B-complex supplements in the past, so he told me to try taking the supplements regularly and then we will test my level again. Then he tested it again and said it improved a little, so he didn't have to do the shots. It didn't improve much, though. I want to ask someone else (I don't see that doctor anymore) if we can try the shots anyway, but I don't know how to ask for things from doctors. Every time I ask a doctor for something, I get shot down. I got shot down many times when asking for a Lyme test. My GP shot me down when I asked if we could check my hormone levels. I don't know why asking to try B12 shots would be any different.
It is a problem that each specialist only focuses on one thing. I wish we had affordable Lyme doctors around here, but we don't. I don't have the money to spend to see one because they charge so much money, and I've already gotten a negative Lyme test from a pretty reputable lab. I just can't afford to keep spending money just to be told a whole lot of nothing. I'll look into it in the future when I save more money up.
Ahh, I am the same way with not knowing how to ask doctors for things! Here is my most recent "AHA" moment in regards to it: be suggestive using "my ____ doctor thinks", instead of "I think". For instance, I have seen the same gastroenterologist for months complaining of a tight knot in my abdomen that actually protrudes sometimes. He felt around, but didn't notice anything himself. He decided to try different prescriptions and shrug his shoulders when I said nothing was working. I got a new PCP that suggested it was a hernia. When I told the GI suddenly he said "yes, it's a hernia" and referred me to a surgeon. Also, I've told my doctors for years that my problems are related to my enlarging lymph nodes, but no one listened. It wasn't until I forced a doc at the ER to feel them, that he suggested a biopsy. As soon as i mentioned this to my docs, even just over the phone, a biopsy was in the works. They'd felt them before, but it seems docs don't jump until another doc suggests it.
So tell your new doc that your old doc wanted to start doing b-12 shots, since the supplements were't raising your levels as expected. Not a lie, just suggestive. If your brain fog is as bad as mine is, my convos with doctors vary when I recall them anyway, so it's the truth as I know it;)
"I don't know how to ask for things from doctors. Every time I ask a doctor for something, I get shot down."
You're not doing anything wrong -- it's the docs' ethical duty not to order tests or give treatments that they do not believe, in their trained medical judgement, are justified.
I think someone posted here recently about financial aid available to those needing Lyme testing and treatment and unable to pay -- you might search this page (in the box up above) for 'Lyme TAP' or 'LymeTAP', not sure if it's one word or two. It's not the only such organization, but I think one or two others have been mentioned here, you may find them when you search for Lyme TAP.
Most LLMD use Igenex labs. I got negative results from other labs but positive with IgeneX and also went through so many doctors until I found my LLMD. Other doctors either don't believe in Lyme or follow CDC guidelines therefore its rare to find a mainstream doc to believe or treat you.
My first LLMD visit showed I was deficient in vitamin b-12, Vit D, and magnesium. After taking supplements those became fine.
I did get tested through IGeneX. :) I pestered my doctor until he signed the paper, but he gave me a lot of grief for it and didn't want anything to do with the whole ordeal. Both WBs were negative by IGeneX standards, which is why I'm so hesitant to go blow a ton of money on a Lyme doctor. I asked for the CD57 too. Those results were borderline.
There are patient assistance services for those that can't afford medications. The person still needs a doctor (llmd in the case of Lyme) to sign off on the request.
Not all medications are available but many are. I used Needymeds before Rocephin went generic. The criteria for each drug may be different (whether you can have ins., Medicare, poverty or close to it) so check them out.
Here are the links:
When I 'want' something----or at least considered--- by my very conservative doctor I find a PubMed abstract or article that states 'it can help'.
That does two things----- my doctor will consider it, often go along and you get to learn how to use PubMed! It's not hard but it does need specific ways to search. If I can learn it (at least in a minimalist way) anyone can!
Here is it's home page:
And here is a quickie tour:
I think I might try that and bring some abstracts along with me if the new neuro I want to see agrees to take me as a patient! I've avoided bringing materials with me in the past because I get the impression that doctors don't like when you tell them how to do their jobs, but at this point, what do I have to lose?
It is so tough when you have a doctor whose obviously decided it's all psychological and doesn't want to test you for physical things.
To find out if you have pernicious anaemia, the doc should test B12 levels and do a full blood count - if you have it, the red blood cells are abnormally large (they're called megaloblasts).
You could just ask him straight to do this, and if he refuses, ask him to explan to you why he is confident you do NOT have pernicious anaemia - since you have symptoms and he did even mention it himself.
If you do have an illness and the doctor refuses to do teh relevant tests, he is legally liable for neglect, so this might be enough to make him do the test to cover his rear end legally.
Is there someone who really does believe in your illness who you could take to the doctor with you? I have found that helped me on a couple of occasions and I have accompanied my mother several times and got the tests we wanted - she's les assertive than me and often gets shot down by doctors. If you have afriend who can come and tell the doctor something like "She's not the woman she used to be, you HAVE to find out what this illness is" he might sit up a bit.
Meanwhile do all the online research you can - the more informed you are, the easier it is to be assertive and confident with the doctor.
I am a Chronic Lyme patient who lives in Jacksonville, FL. I have great doctors and a solid treatment plan that I have been following for three years now. Do you still need a recommendation for a doctor? I was bitten by my infected tick 13 years ago and have been seriously ill for the past 3 years (started deteriorating in 2005).
I just finished reading all of the comments here and I really want to help you. I know that you are frustrated, sick and don't quite know where to turn next to best utilize your resources. I have a few questions and suggestions that may help, considering I went through the same things as you and I live in the same city. I'm a "call it like I see it" type of person so please don't take any offense if I come across straightforward ok?
First of all, you keep saying that your Western Blot was "negative" but you never made any reference to whether or not you had ANY positive bands on the test. Did you get a paper copy of your results? A CDC "negative" test literally means nothing when it comes to this disease. Most of us who have been desperately ill with this disease have had our first Western Blot come back as "negative." I only had one positive band on my first test and then after I took antibiotics for six months, I repeated the test and I had six positive bands! You have to remember that the Western Blot is a blood test where the result is reading your body's ability to launch antibodies against the presence of a Borrelia antigen (meaning a Lyme bug was in you at some point and your body tried to defend itself).
However, there are two ways that your body would not see the Lyme bug. The first way is if the bugs have been in you for so long that they have spiraled their way out of your blood vessels and invaded your cells now. The second way is if your immune system is so weak that your body simply can't launch a defense because you are too sick. If you had either one of those situations going on, then you would not have a lot of positive bands show up on the Western Blot and the "official" result would be listed as negative. If you take a look at some of the explanations of Western Blot results you will see that certain bands are more indicative that you have Lyme bugs in you so even if you had one or two of those come back as being positive....I would say that you have Lyme Disease.
Don't get so focused on a "negative" Western Blot. I frequently have my test repeated (just the IgG and IgM, test #188 and #189 at IGeneX, it costs $200 if you order it that way) while I continue my treatment just to see how much of the Lyme is showing up in my blood and how well my immune system is defending me against it. As I kill off more cysts and biofilms, the Lyme spirochetes and toxins increase in the bloodstream so I end up with more positive bands on my Western Blot. If you repeat your test in the future after you start taking some antibiotics, your test will likely change.
Regarding your B12 levels...how low were they? My B12 was critically low at 204 and I have been on weekly shots for years now. The range is usually from about 400-1200 but people should stay at least above 550 or so on a regular basis. If you were in the 200-300 range, I don't know that oral supplements alone will be enough to bring it up sufficiently, It is very common for Lyme patients to be low in B12 and the best supplementation for us is to use methylcobalamin for replacement (not cyanocobalamin). Replacing your B12 will help with energy, peripheral numbness in hands/feet, nerve tingling and memory issues too. I find that B6 helps quite a bit too, so even just taking a good B-complex vitamin would be a good idea as well.
As far as talking to all of these doctors and getting what you want/need from them, it is actually just a matter of changing the way you view them. I can say this because I worked in medicine. I want you to remember one thing...they work for YOU. I don't care if they are wearing the white coat when you walk into that room, or how much school they went to, or how long you had to sit in their dang waiting room to see them...YOU are paying their salary and YOU deserve to be treated like a human being who needs an answer to all of your questions about your health. Do not be afraid of them. Get copies of ALL of your results, your labs, your office notes, read what they wrote about you and make them write addendums to their notes if you do not agree with what they said in your chart. You have to remember that whatever they write will be sent to your insurance company for years to come and it may steer the course of your future through this journey of Lyme Disease so make sure it is done correctly as you walk the path. It just makes it easier in the long run.
I know how hard it is to face all of this when you barely have the energy to raise your own arm. I know because I did it myself. I saw 14 doctors before I started getting answers ~ including two guys at the almighty Mayo Clinic who told me that I was nuts ~ but I kept pushing. Like you, I had four neurologists, I did a balance study looking at that crazy red dot too... man that test was awful! I had five spinal taps, more blood work and scans than I can even explain to you and I searched for 3 years for my diagnosis but I finally got it and started treatment.
The personal battles don't get any easier I'm afraid. I wish you had more support at home but you will find that everyone with this disease struggles with family or friends that don't support them. There are a lot of blogs on the computer that are really good where you can read about how some really sick Lyme patients cope with the lack of support. Try to remember that your only job right now is to believe in yourself and your mission to get better. You don't have to convince anyone else, even your family. It hurts like hell that they have chosen to "turn a blind eye" and ya know what? When the day comes that they realize how sick you really are you will see a look of guilt on their face that you will never forget. Just forgive and move on. You don't have the time, energy or strength for their issues right now.
Lastly, get focused. You are throwing your money around to a bunch of doctors right now unnecessarily, chasing down each and every symptom when you could save all of that and channel it into determining whether or not you truly do have Lyme. If you believe that you have this disease then get confirmation, commit to that first appointment with the local LLMD for a treatment plan and at least get started on treatment. You don't need to see any more doctors. You mentioned that your CD57 was "borderline" but you didn't say how low it was? If it is anywhere below 100, I am suspicious. If it is near 60, I am convinced. If it is below 50, you are acutely ill.
We have a fantastic association here called NEFLA (Northeast Florida Lyme Association) that has a website NEFLA.org, a Facebook page and they just put up four billboards on the highways around the city for the month of May ~ Lyme Awareness Month. We have support group meetings the third Thursday of every month at 7pm at the United Methodist Church that is open to anyone and the local LLMD is there along with all of the smartest local people who can point you in the right direction for treatment or just to answer all of your questions for free!
If you can somehow get to one of the meetings, you will be surrounded by a room full of people who have all the same symptoms as you, have seen all kinds of doctors who have told them that they are crazy too and you will feel all the love and support that I think you so desperately need right now. I hope this long post has helped you a little bit. It was written from the heart. I have battled the disease for 13 years now and like I said, even though I am disabled now, I was once the person who wore the white coat and gave the medical advice.
Don't ever be afraid to push for what you want. You are the only one who can fight for your health. If you don't like how you are being treated by a certain doctor, fire them and move on to the next one. There are plenty of them who will be willing to take your money. For now, the Lyme community in Jax is here to give you the support that you need to begin your journey down this difficult path to healing. Good luck my dear. I will be thinking of you.
Hi everyone, I don't have time to respond to all of your messages in depth now (I will later!), but unfortunately, no, I don't really have anyone to come vouch for me that I really am sick. I literally have no one who believes me. Not anyone who lives near me anyway. It's frustrating because I'm not as sick as some people with Lyme and other conditions like MS to where I can't walk or speak or anything. I can do most things...they're just hard for me, which others probably don't even pick up on, and I just do a lot of dumb things like I mentioned, which others probably don't even notice because I'm by myself like 95% of the time. I mostly just lay in my bed and work remotely. I'm not around people very much. And I don't really look sick. I mean, I think I look paler than I used to be, but others don't notice if I do.
My CD57 was 88, so it wasn't that low. I dunno.
Sending you a message in a moment, BetterTickedOffThanTickedOn
Okay, now that I have a little more time to respond, I guess I'll start by answering Better's questions that I haven't addressed yet. Yes, I had some positive bands on my WB, but not enough to classify me as Lyme positive according to IGeneX. On my IGM, I had a weak positive on band 18 (one +) and then two ++s on band 41 (my understanding is pretty much everyone has a positive 41, though?). Then on the IGG, I had ++ on band 41 and one + each on bands 45 and 58. As stated, my CD57 was an 88. I wish I had an understanding of what this actually means. I can't seem to find any information on what the CD57 really measures. I know it measures NK cells, but I don't really know what that's supposed to indicate.
As for my B12 level, I can't seem to find those results right now, but I know the number was in the 300s at first and then jumped into the low 400s when we retested. Apparently that was enough to convince the doctor I didn't need the B12 shots. I do take a B-complex vitamin now (with methylcobalamin), but I've heard stories of people experiencing a much greater improvement in symptoms with the shots and just want to try them since I know that's one thing that truly can't hurt...at least I've heard you can't overdose on B12.
It's frustrating because I go into the doctor's office with that exact attitude that I'm the one paying their salary, and I'm not in the wrong to ask them to do more to help me than nod their heads for a few minutes and then send me home. But then they rush me, talk over me, and talk down to me like I'm crazy and stupid, and I'm just really not that good at asserting myself in that kind of situation. I try, but it doesn't come out right, and they're already half out the door ready to walk over to the next patient while I'm trying to figure out what more it's going to take to get someone who my insurance company is paying hundreds of dollars for that visit to listen to me. They just don't have any idea how much this whole mess is affecting me when I'm not in their office and trying to go about my day to day life. I don't know how to get them to understand that. They think I'm just some hypochondriac of a 20-something coming into their office whining about nothing. Really tired of not being taken seriously.
I guess my thing about going to a Lyme doctor is, what if I don't have Lyme? Lyme doctors aren't like other doctors--they want thousands of dollars per visit, and that's thousands of dollars that will be essentially thrown away if they tell me I don't have Lyme, which seems likely to me right now since even IGeneX says I don't have it. I'm tired of making a fool out of myself going to great lengths to pursue something I think might actually help only to wind up where I started. It's exhausting. I don't have the energy for it, and my dad wouldn't let me anyway because as I said, he wants me out of his house...he would never let me spend all of that to go to a Lyme doctor when he wants me to be saving up money to move. I don't know. Like I said, I need to wait until I have more money. In the meantime, it would be nice if the doctors I can afford to go see would at least TRY to figure out what's going on.
"I guess my thing about going to a Lyme doctor is, what if I don't have Lyme?"
If you don't have Lyme, a Lyme doc will tell you that. Then on to the next possibility.
"On my IGM, I had a weak positive on band 18 (one +) and then two ++s on band 41 (my understanding is pretty much everyone has a positive 41, though?). Then on the IGG, I had ++ on band 41 and one + each on bands 45 and 58."
Western blot results:
18 = "highly specific to Lyme -- many LLMDs say if this band alone is positive, you have Lyme"
41 = all spirochetes (spiral shaped bacteria) react on this band, so it could be Lyme, or it could be something else
45 = same as 41
58 = unknown but may be a Lyme bacterium protein
And your LLMD said you are clean? Are you sure this doc is a Lyme doc?
This is not a negative test. It is perhaps not a strong positive test, but it is not negative.
I don't recall if you have had a Lyme PCR test -- instead of looking for antibodies your immune system makes against Lyme (as the Western blot test above does), the PCR test looks for 'direct evidence': the DNA of Lyme bacteria in your blood.
The immune system is an inconstant indicator of Lyme: sometimes your immune system just gives up, figuring it's killed all the bacteria, but Lyme doesn't play by those rules. My Western blot came back slightly positive too, and my Lyme doc said he was surprised there was ANY positive reaction because of how long I had been ill. My doc also ran the PCR test, and it was positive too.
How are you certain your doc is a Lyme specialist? It's hard to tell sometimes, because any doc, no matter how ignorant of Lyme, can claim to be one. I don't recall now how you found your doc, but you might try another one.
I didn't go to a Lyme specialist. There aren't any in my area. I bugged my neurologist, who I no longer see, until he let me get the tests done, but he just handed me the results and said he didn't want anything to do with them because he's 100% certain I don't have Lyme disease. My doctor didn't say I was negative. IGeneX did (It was written on the results that I was negative by their criteria)
Anyway, I don't think I'm going to post here anymore. I mostly just wanted to know if anyone had any secrets to getting doctors to listen to me since I know Lyme patients have dealt with doctors who don't listen galore. Seems everything's going to keep going back to going to a Lyme doctor, and I can't do that right now, so thanks again everyone! :)
I can understand your frustration---- but please don't disappear from a site like this where the members are all trying to help you in their own way.
It seems the sticking point is---- you can't find a 'good' llmd that's close to you. (There are a lot of llmds that say they are----- but have some pretty strange ways to help you.)
Perhaps some members here have sent you a private message with the name of an LLMD that is close to you?
Then, another big sticking point---- $$$ Ah, yes. Not one to be ignored at all. But there are some ways to get help with that, once you have an LLMD.
Sorry to be seeming to bug you when you've decided to leave this board but it sounds as if you need a place to vent---- and this is the place. If we all seem to be offering 'too much help' that is overwhelming us----- just tell us. Jackie will always be here with her words of comfort and so will others.
Sometimes you have to walk away for a little while and that's ok. Heck, I got overwhelmed when I was searching for three years for my diagnosis so I took a break for a few months and didn't even mutter the dang word LYME! Hopefully, even if you have decided to stop posting on this page for now, you may decide to either keep reading it or at least after taking a little break you might look back to see if anyone has continued to check up on you. We won't forget that you are out there and we will still be here when you are ready to pick up the reins and start fighting again. Take a rest from all the research, catch your breath, lick your wounds, remember that there are other things in your life besides being sick and come back to us when you need our help again.
Like Jackie was saying when she gave you those references about the bands on your lab results...that is not a negative Western Blot test according to the standards of any reputable LLMD and you would not be laughed out of their office. The reason it says "negative" on the test paper is because it has to say that per the CDC requirements right now (which we all know are completely irrational). I had even less positive bands than you do and I was immediately treated for Chronic Lyme. You have positive bands that would only turn positive if you had been exposed to Lyme. You can stop searching my dear. Take your break, think about how you want to handle your future, get some rest and come back to us if you need some support ok? We will be here for you.
I'm sorry you're struggling so much. I'm sure it must feel overwhelming at times.
It sounds like you've had a good set of responses, so I'll just focus on one issues: you're not convinced you have Lyme, yet.
While IGeneX called your Western Blot result a negative, you still had a Lyme specific band. Band 18 is very Lyme specific and some LLMDs will diagnose on that band alone, along with symptoms and a history.
You have history, you have Lyme symptoms, you have no other alternatives despite seeing many other doctors (including specialists), and you have a Lyme specific antibody showing up in your blood. Patients sick for years are most likely to have too few antibodies to show a positive, even at IGeneX. Some show positive after taking some anti-Lyme antibiotics. Everything you describe is consistent with late stage Lyme Disease!
I know we're not doctors, so it's hard to take our word for it. But I encourage you to believe the evidence you alreay have that you do indeed have late stage Lyme Disease. It sounds like you are a strong person in that you keep looking on your own behalf, in spite of a lack of support around you from family or doctors. That's a hard thing to do, so it says a lot about you.
Lyme that causes cognitive issues nearly always causes psychological issues, too, especially anxiety, self doubt, and mental confusion. It gets difficult to focus and make decisions, both of which can cause physical distress like nausea. I felt like I was losing track of who I was. It's hard to describe, but other Lyme patients know exactly what I mean.
I know I had a really hard time making the decision to get tested at IGeneX and to commit to a costly consultation. I can relate to your struggle given unsupporting doctors and less than clear proof of anything.
But I can tell you now that those decisions saved my life. I encourage you to come to your own conclusion, knowing that the doctors you've seen so far aren't understanding you. They're mystified as they simply don't know that Lyme can do what it's doing to you, not to mention that they're told not to diagnose it in Florida!
I encourage you to believe that you have Lyme. Then decide what you want to do next.
I don't know if you're still around, but I hope you see this. I just saw another article on Borrelia Miyamotoi, and I thought perhaps you could take this to whichever doctor you've seen that is most open to possibilities and show it to him.
It talks about Borrelia Miyamotoi, which causes human illness with symptoms very similar to Lyme Disease. Unfortunately, patients nearly always test negative on Lyme Disease antibody tests, as those tests are looking for Borrelia Burgdorferi. Perhaps a doc would be willing to give you some anti-Lyme antibiotics to see if you start feeling better. Or perhaps that doctor would be willing to give you a new referral to a doc who's willing to step into the unknown on this.
I'm not trying to be rude. I'm just really depressed and frustrated and don't have it in me to say more. This conversation is just reminding me of how alone I am, how little I matter to the people who are physically around me, and how little control over my situation because I'm stuck in my dad's house where what he says goes. I don't expect anyone to understand but me because I can't even figure out the words to say what I'm trying to say right now.
I have a good idea. I was sitting here trying to think back to what I felt like when I was 24 years old and how would I feel if I was living with a parent who didn't understand that I was feeling so poorly and looking for answers to a medical problem... Then I came up with an idea that might help you.
There is a website called www.**********.com and it is for young people (anyone under the age of 40) who is suffering from a chronic illness and Chronic Lyme patients are included. Maybe you could sign up on that page and start talking to some of those younger people to see how they are handling the social aspects of their illnesses? See how they deal with living at home or how they deal with parents who don't understand them? It is a great site... I wish I could join it!!
It is not "pathetic" that you are still living at home with your father. I am 41 years old and I had to move back in with my 65 year old mother so she could take care of me because I am so sick! It happens in life my dear. Don't be so hard on yourself. Remember that the bottom line is to take care of whatever is making you sick and get back to enjoying the long life you have in front of you ok?
So, check out that website and see if you can straighten out the situation at home. This disease is much easier to fight if you have a team in your corner supporting you. Don't forget that we are here to lean on and we have already traveled the road you are likely headed down. Even if you can't get the support that you are looking for from your family, you are most definitely NOT alone. Take care~
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