Lyme Disease and Bipolar - questioning diagnosis

By klutzo Sunday, August 26, 2007

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I am new to this Board. Hello everyone!

I have had Lyme Disease for almost 22 years, but was misdiagnosed as having MS and then Fibromyalgia, and only found out it was Lyme 4 years ago. At this stage, it is not curable.

Just last week, I was diagnosed with Bipolar II, when I went to a psychiatrist to get help with my Lyme Rages. Rage is very common in the late stage of Lyme, when it attacks the brain. Since I have no euphoria, and am very depressed about my prognosis, I expected to be diagnosed with very low serotonin, which can also cause anger, and given an antidepressant. I was shocked by the Bipolar diagnosis, but when I talked to other Lyme patients I know, I found several with the same diagnosis. I had no temper at all until I was in the final stage of Lyme, and I know from my reading that being diagnosed Bipolar past the age of 30 (I am 56) is very rare, so I am sure it is the Lyme causing it, if the diagnosis is correct.

The medication I was given, Abilify, made me much worse, and I only took 1/4 of the prescribed dose. The doctor only spent about 20 mins. with me, so I am going to see a Neuropsychologist for a second opinion before I risk taking these dangerous drugs. I am not willing to risk permanent tics or diabetes or massive weight gain, when I have no sexual, monetary, or delusional problems. I am just short-tempered from hopelessness and the constant pain I am in. If the 2nd opinion is also Bipolar, I will accept it and treat it, but I want to be sure.

I would appreciate any advice from old-timers here, especially anyone who has Lyme Disease along with their Bipolar Disorder. Thanks.

Comments (20) | Add comment

tabby

8/26/07 4:30pm

You should certainly seek another opinion.

I only reply cause you stated you haven't had the symptoms typically found in bipolar patients and you only spent 20 minutes with the psychiatrist and yet came out with Abilify and a serious diagnosis.

It certainly would be a logical thing to seek out a 2nd opinion due to the Lyme disease aspect.

A lot of illness/diseases during different stages can cause symptoms that mimic symptoms of a psychiatric disorder. This doesn't mean the person is mentally ill. It means the illness/disease they are suffering with is causing relatable symptoms. I mean someone can experience depression due to a loss but not be mentally ill. Bipolar is mentally ill.

Still, docs will treat the symptoms you are having with psychiatric drugs but to be given such a serious diagnosis after having met someone 20 minutes is worth a 2nd opinion.

klutzo

8/26/07 4:59pm

Hi tabby,

Thank you for giving your opinion. I know many other Lyme patients with the same mental symptoms I have, and they all say that once you get enough intravenous antibiotics, the symptoms go away.

My problem is that by the time I was correctly diagnosed, my immune system had been altered by the disease to where I am allergic to all the antibiotics that kill the Lyme bug, which is called Borrelia. So, I am not going to get any relief for this problem without psych drugs of some kind.

I have decided to try to get in to see the Neuropsychologist ASAP, and I won't call the shrink about my not taking the Abilify until after I've seen the NeuroPsych. If he agrees with the shrink, then I will call the shrink back and ask to try another drug. If he does not, I will ask him to call my PCP and get her to prescribe me an antidepressant, if the ones I can tolerate are compatible with the other drugs I take for Lyme symptoms....that is another problem for me..... The antipsychotics are not supposed to be incompatible with my other drugs, but the antideps are. However, Abilify lowered my pulse to only 48, which is not safe, and which is the same kind of problem the antideps can cause, so I am not sure I believe it.

Thanks again for helping me clarify what I want to do next.

Klutzo

jajoiner

8/27/07 2:38pm

I did not know it is rare to be diagnosed at this late age (56). I do find it difficult to believe that I have been able to cover this disorder all of my life. I don't know about Lyme Disease, but I did almost loose my life to spinal menengitis 13 yrs ago and it was never determined how or where I got the menengitis or whether it was viral or bacterial. I do wonder if these other illnesses could be the cause of "bipolar" behavior. I do accept what the experts are telling me. That is all I have to go on. I am very hyper and find that I experience few episodes of depression and am more often manic.

klutzo

8/27/07 4:13pm

Hi jajoiner,

All I can tell you is that meningitis is often the initial presentation of Lyme Disease, but if you hvae no other symptoms but bipolar, it is unlikely to be Lyme, since it causes all sorts of awful physical symptoms as well.

I have had 22 yrs. of doctors "practicing" medicine on me, and almost killing me a few times. As a result, I do not trust them as far as I can throw them.

I am seeing the Neuropsychologist who did my brain damage assessment for disability two days from now, so he can give me a second opinion on whether or not I am bipolar. If he agrees I am BP, then I will accept it and pursue it.

Good luck to you,

Klutzo

jajoiner

8/27/07 6:36pm

Kluzo,

Thank you for your response. I was also diagnosed 4 yrs ago with PTSD. I have emphasema and chronic bronchitis, irritable bowel syndrome, sleep apnea, GERD and other physical problems and have just filed for disability as well. Hope we both can get our disability as it is impossible to work. Good luck to you as well.

klutzo

8/27/07 7:24pm

Dear jajoiner,

Like you, I also have PTSD, GERD, IBS and OSA (apnea). All of them are caused by my Lyme Disease except the PTSD. In addition, I have MVPS, 3 leaking heart valves, and two heart electrical conduction disorders, also caused by Lyme. I have brain damage rated severe as well.

I am already on disability. I've been on it for almost 22 years. I never worked less than 50 hrs. per week when I worked, but the amt. of disability gets smaller and smaller the longer you are on it, relative to the cost of living. If I were not married, I would be homeless by now. Still, it's better than nothing, esp. the Medicare. Good luck in getting it....I hope you do. It took me 3 tries and a federal judge to finally win my case.

Klutzo

jajoiner

8/28/07 11:44am

Klutzo,

Thanks for the info and support in getting my disability. I've been turned down once already. Have already spoken to an attorney in the event I get a denial again so I can appeal this time.

I, like you, would be homeless right now if not for my significant other. We are so blessed to have people who love and support us in our lives.

none

8/28/07 12:33am

Hi,

I can understand your frustration big time.I have Bipolar I, Fibromyalgia, and have had Lyme disease twice, once a few years ago and again last month. I can tell you from my own experience that it is possible to be diagnosed Bipolar after the age of 30. I am 51 and was only fully diagnosed last year but the doctors believe I have had it my whole life judging from my past. I just didn't want to admit it when they first told me about 4 years or so ago because I didn't understand what a "mood disorder" was and was afraid to admit that there was something wrong with me. People have a tendency to label others without understanding what it really is. It is possible to have BP and not know unless it gets to the point where you finally seek help and get the right diagnosis. I know Lyme and Fibro and other diseases have similiar symptoms and are often misdiagnosed. That's why the correct testing is needed to get the right diagnosis. In my case I went through the whole spinal tap and Lyme panel the first time and the second time I only needed the blood panel. Lyme was there both times. First I had Lyme, then soon after, a severe bout of Shingles, after that the Fibromyalgia, the diagnosis of Bipolar, and now Lyme again. Are they all related? I have no idea. I just know I have been through every test there is they are all real and there and I hurt. That's why if you don't believe the first diagnosis get a second or third. The same goes with meds. If one doesn't work, then keep trying. What works for one person may not work for another. I have had a heck of a time with meds because of side effects and allergies so I am still searching. Just do what you have to do. I hope you find the right answers and help soon. Good luck.

--Mary Lou--

klutzo

8/28/07 9:28am

Dear Mary Lou,

I am so sorry you've gone through all this. Everything I know about Fibro and Lyme suggests that Fibro following Lyme means you still have Lyme hiding deep in your tissues....it was not completely erradicated and you need a lot more antibiotics, usually intravenously, ASAP and for at least 18 months. I hope you will go to LymeNet.org, join their flash discussion, and post in the Seeking Doctors section to find an LLMD near you, so you can get to the bottom of this. Regular doctors are usually clueless. Good luck.

Thanks for confirming what I feel about second opinions. The NeuroPsych told me 11 yrs. ago that with the amount of brain damage I have, I would probably develop two common problems in brain damage patients: 1) a certainty that I am going to die soon, and, 2) an inability to control my temper. So, I am wondering if that is not the cause of my anger, rather than bipolar disorder.

I found a depression checklist and a mania checklist online. My results showed major depression but no mania at all. The mania test required at least five yes answers and I only had one, ie. irritability. My irritabiltiy does explode to the point of rage like bipolar, but the shrink did not take the time to even find out that I had brain damage. He had a checklist and he stuck to it, getting no back story at all from me.

I am seeing the NeuroPsych tomorrow and hopefully will get to the bottom of this. If he also says I am bipolar, then I will accept it, and I am sure I will be back here for more help from all you kind people!

Klutzo

none

8/28/07 6:02pm

Hi Klutzo,

I just read your reply to me and I will tell you I have been up all night after I replied to your post. I read your post over and over again and I talked to my husband for great length this morning and have decided I need to do some investigating. I am not sure at this point about my bipolar or fibro.

It's a very long story but I realize now that my initial visit with my shrink was only 5 minutes long. The counselor I was seeing suggested I see the shrink to get some meds because he wasn't an md and couldn't prescribe anything. He said I had a lot on my plate and antidepressants might be the way to go. I was going through an awful time and needed someone to talk to. I filled out paper work asking about my symptons but there was nothing there about events going on...just basic questions about my moods and thoughts and medical history. The shrink only asked a few questions and from then on the med list began. Was this depression from normal bad things or was it from being bipolar? The first time I saw him he suggested bipolar and then I saw him later and he said depression and then I saw him later again and he said bipolar again. Mind you, I have never seen this man ever for more than 5 minutes. The counselor visits were for 40 minutes.

I stopped the medication and the shrink and counselor visits a while later because I was doing ok and really didn't believe either the therapistor the shrink at that point. The counselor had actually done something not so nice in front of me so I said screw it to the whole thing and stopped going.

The last fews years have been a major rollercoaster ride but when my husband and I talked we realized that everything that happened was in the normal reaction range due to the circumstances surrounding us. We now realize that I didn't behave the way I was or have been because of nothing...there where many things that happened that anyone would react to in the same way. As a couple we reacted to things.

My first bout of lyme wasn't found until months after I had the rash. The doctor I saw at the time of the rash thought it was "just a rash" and gave me cream. It wasn't until a couple months later that I got very sick with fever, major headaches, stomach problems, pain everywhere, ect. My regular md sent me to a neurologist who did an mri, a spinal tap, and ran a series of blood tests including lyme. She was checking for meningitis, a tumor, and a bunch of other stuff that scared the heck out of me. She called and said the test showed that i had lyme but they couldn't determine exactly when. She figured it might have been back when I had that rash or it could have been before. All she did was give me a month's worth of heavy duty antibiotics. I have no idea how long before that I got the lyme. I didn't think anything of it. To say I was ignorant over a lot of things is an understatement.

Last month I got lyme again but only found out because I was at the doctors for something else and had her look at my arm because there was a lump. Way inside was a deer tick so she ran the lyme test again. Once again I had a rash before but figured it was nothing. I feel very stupid. A while after the first bout I developed shingles and was really sick. I never got better...just more drained and the pain was unreal. My doctor checked me all over then and said it was fibromyalga and was probably triggered by the shingles. I didn't question it.That was 3 years ago and I have been feeling awful since and it just keeps getting worse.

During that whole time I was going through more major things in my life that would totally stress out a "normal" person including menopause. I put up with it for a long time because I didn't know what else to do and i "had" to believe the doctors. Last year I broke down in her office because I was very sick, going through a zillion emotions and didn't know what was happening. She took me down to the counceling center to talk to someone (again) to help me cope. This time I asked to see a woman (who has been wonderful) but I had to see the same shrink because he is the only one there. So the drugs start again. I asked him about the bipolar stuff and if that's what it really was or was it something else and he said yes, it probably was bipolar. I just accepted it this time because I figured he was an expert and I needed something to explain everything and now the rest is history. Except now I am wondering about stuff because since then (last year) I have been getting sicker and sicker and the pain has been unreal and now I wonder if all the emotions and moods and everything are actually something else. Everytime I see him (for 2-5 minutes once a month) he just keeps putting the Lamictal up even tho I tell him that I don't feel any better but am getting more aggitated.

Up until today I never really thought about the lack of time the shrink gives me or questions if his diagnosis could be wrong. I have never given thought to a misdiagnosis of fibro either or that lyme could be doing this to me. So, I have come to the conclusion that I am calling the shrink and telling him I want a full appointment not just a "med" check so i can get his take on this. I am also going to call my regular md and see what her take is on the lyme and fibro. I am ready to get a second opinion on both. Let's just say I have put 2 and 2 together and something just isn't right with this whole thing.

I'm very glad I just happened upon your post because it opened my eyes about 2nd opinions. Here I am telling you and everyone else about my bipolar, fibro, and lyme and yet I should be getting a 2nd opinion myself because it just doesn't add up. Please keep me posted as to what happens to you and I will do the same.

--Mary Lou--

klutzo

8/28/07 8:28pm

Dear Mary Lou,

I am very sad for what you have been through. I hope you can finally get some answers from your doctors.

If you don't get satisfactory answers this time, I would seriously work on finding an LLMD (Lyme literate medical doctor), since they are the only ones who really know what it takes to treat late-stage Lyme Disease. You can find one at LymeNet or on the ILADS web site.

I am not sure where you live, but the fact that you got tested and diagnosed with Lyme at all is very encouraging, so I am guessing you live in an area where Lyme is an acknowledged epidemic. Nine out of ten of us are misdiagnosed, and in many places, like where I Live, doctors still refuse to run the tests at all, insisting there is no Lyme in the area, which is wrong. It's everywhere now. Tourism is the number one industry in my state, so the govt. won't admit we have Lyme here.

This does not mean you are not also bipolar, but if the Lyme is the cause of the bipolar problem, antibiotics will help it, though you may still have to take psycho-active drugs for quite awhile. Late-stage Lyme is not curable, but can be manageable, and many achieve remission with a lot of time and hard work.

Just to complicate things further, Lyme can cause brain damage and brain damage can cause symptoms that look just like bipolar.

I had a serious head injury too, on top of the Lyme, and I expect my neruopsychologist to bring that up when I see him about this tomorrow, since he did my testing for brain damage. I do not get euphoric..... I get really angry, and brain damage alone can cause a person to lose control of their temper.

It can be really hard to sort this all out and figure out what is causing what. One thing I have learned from reading about bipolar these last few days, is that most people will do anything to avoid admitting they are bipolar during the manic phase, so I am counting on the neuropsychologist to not let me get away with that, if that is what I am doing. I don't feel manic, but I am not depressed right now either, and I usually am, so who knows. Maybe I am fooling myself.

Best of luck to you in sorting this out. Please do post what you learn,and I will do the same.

Klutzo

none

8/28/07 9:39pm

Hi,

Thanks for writing again. I live in Massachusetts and we have lyme all over the place here. When I got it the first time the only place I was ever near grass was when we were at an outdoor event and I spent a good 5 hours sitting on the ground. That was in Connecticut where lyme started.

I am going to check first with my own doctor to see what she thinks about the lyme and fibro and go from there. The worst that can happen is that I have to find a new md. All I know is that I have been getting worse and was never sick like this before the lyme. It has been a downhill battle since then. How did they determine that you have lyme? I'm just wondering if there are other ways than what I had.

As far as the bipolar goes, I am going to check it out with the shrink. He's a very stiff, textbook type of person (no personality) who may just brush me off but if he doesn't give me some answers I will get a second opinion somewhere else. I have been doing extensive research on the subject and I don't have all of the criteria for it. Like I said, my behavior and reactions, (now that i have written down everything on paper and can actually see when things happened), would not seem out of the ordinary when you look at the circumstances surrounding the events that triggered the behavior. I always just went by what I was told and that was that. I am not sure it isn't bipolar but now I am not sure it is. The only way to find out is to get a second opinion.

I also realized that my sleep problems only began to get worse when the Lamictal was brought into the picture and as it was increased the sleep was decreased. The pain wakes me up and then I can't get back to sleep. But I did have pain before the Lamictal and I was able to fall back asleep so now I have to wonder if that's a side effect of Lamictal. It's just so frustrating not really knowing what is going on so instead of just sitting back and doing nothing I am finally going to get control of my life and demand answers. That was my big problem, I never seeked a second opinion from the start. Just agreed with everything.

I hope you find the answers you need and let me know how it goes with the other doc. I took a quick look at the website you suggested and will go back on it tomorrow after work. I am going to find the courage tomorrow to call the shrink and make an appointment with him (a real appointment). I may decide to bring my husband just for moral support because this doc can be

intimidating. Take care and let me know how it goes and thanks for the info.

--Mary Lou--

klutzo

8/28/07 10:23pm

Mary Lou,

By all means bring your husband to the shrink appt. It helps to have an observer....they are less likely to be nasty to you if someone else is there to verify it. Good luck!

You asked how I got diagnosed.....For years the Rheumatologist I saw for my Fibro had been telling me she believed all fibro was really Lyme, but I did not believe her until I suddenly developed these rages. It was totally out of character for me. I had no temper at all before then. However, rages are normal if Lyme gets in your brain. So, I had two Bowen blood tests done, and both were positive. Since I can't take antibiotics, I used a South American herbal medicine called Samento, and it caused the same Herxheimer effect that antibiotics cause if you are infected with Lyme. Once I worked my dose of herbs up fairly high, I developed 3 of the classic bullseye rashes in rapid succession, all in the same place on my body. My PCP doc confirmed it looked like a tick bite, and saw that it was expanding and that the center had cleared out. Since then I have continued to develop the typical symptoms of late-stage Lyme.

I have read that sitting on a log or in grass wearing shorts is the number one way people get Lyme. My EM rash was on the back of my upper thigh, so I probably got it the same way you did.

Klutzo

klutzo

8/28/07 10:32pm

P. S. to Mary Lou

If you have to find a new doctor.....

When you get to www.LymeNet.org, click on "flash discussion" on the left hand side of the page, then join, then go to the third section down, "seeking doctors" and post your request, stating where you live and how far you are willing to travel. People will answer you by private message with info on the docs. It is important to say how far you are willing to go, since LLMD's are very few and far between. Docs who give long-term antibiotics are persecuted and lose their licenses, so only docs with a personal stake in this are willing to risk it. That is also why we never post the full name of an LLMD on the site. For example, our local LLMD has a son who almost died because he was only given 3 weeks of antibiotics. The biggest problem with LLMD's is that most don't take insurance. They know the ins. companies will not pay for our long term care, since it violates the IDSA guidlines which say 3 weeks of drugs is enough. Most LLMD's spend hours with you on the first visit, and at least an hour every visit afterwards. If you have one who is far away, they will do phone appts. with only a couple in person visits per year.

Also, if you have a fibro diagnosis, which I think you said you did, you can go to your nearest FFC (Fibro and Fatigue Clinic) and they will treat you. The first thing they do now is check all new fibro patients for Lyme. To find an FFC near you, try Dr. Teitlebaum's web site....I can't remember the URL, but you can Google him.

Klutzo

klutzo

8/30/07 1:04pm

Good morning,

As promised, I am updating after getting a second opinion. I saw the psychologist who did my brain damage assessment due to Lyme Disease.

In is his opinion, after reviewing my 6 hours of brain tests results and talking with me for 1:15, bipolar disorder is very unlikely in my case. He said: "Sometimes depression with anxiety is just depression with anxiety". He also said Bipolar II has become a fad diagnosis in his opinion. I have rational reasons for my problems, ie. a serious depression and anxiety due to an incurable, painful physical illness and the financial problems it causes.

He thinks my untreated pain is one cause of my short temper (pain meds combine with one of my other meds and make me stop breathing, so I can't take anything for my constant, gnawing pain).

He thinks the other reason for my anger is my severe frontal lobe damage. That is the area of the brain that allows you to keep control of your emotions. Outbursts of angry rage are the number one symptom caused by damage in that area.

He put me on no additional meds, but gave me "homework" to do to try to learn to control the anger myself and make new connections in my brain. I see him again in 3 weeks.

He found a common thread between the things that trigger my anger, ie. that they all involve my passing judgement on my own or others behaviors. He wants me to learn how to be less judgmental, like I used to be before I got sick. He wants me to distinguish between things that are worth judging and things that are judging pesonality, which is God's job, not mine.

Re: discussing my depression..... He is one of the few psych professionals I've met who is religious like I am, and he reminded me that if it is not my time to go, and I try to take my own life, I may just end up botching the attempt and living on for a long while, even more disabled than I am now. He gave me two examples of other patients of his who that happened to. That was a sobering reminder of who is really in charge and helped me a great deal.

He also said that he thinks I may be enjoying my anger a bit too much. People like me, with very high ethical standards, feel life should be fair, but it's not, and using my illness as an excuse to get angry allows me to let off the steam from the frustration of life not being fair.

He told me not to be so hard on myself....that some of the things I'd gotten enraged about were worth being angry over, and he would have been angry too, ie. neighbors who constantly blast music, and a relative who stole all of my husband's inheritance. He also said it was ridiculous to dx me bipolar just because I admitted to wanting to kill my husband's relative who did that. He said we all have those feelings, but since I would never act on them, that is normal. He joked that most of us want to kill our spouses at least once a week.

I mailed back the free samples of Abilify and wrote a note to the shrink explaining what I was doing and why. I said I felt it was unfortunate that shrinks are no longer spending enough time with patients to even get their backstory, and that if he had given me a minute to tell him about my brain damgae, maybe he would not have diagnosed me the way he did. I also told him if the psych is wrong and I do turn out to be bipolar, I will see him again to try a different med. I thanked him for his time.

I want to be VERY clear here that my unusual case does not mean there are not plenty of people who are bipolar! I have two good friends who are. One has cyclothymia, and the other has Bipolar I. I also know two people whom, IMO as a former psychiatric social worker, have undiagnosed, untreated Bipolar I. They deny that anything is wrong with them. Their illness is very obvious to everyone who knows them, but is very different from how people see my behavior. People have been telling me I am depressed for years, and do not think I am like those other two people at all. If many people you know, and/or more than one psychiatric professional are telling you that you may be Bipolar, then I would definitely listen to them!

I wish many blessings and wellness to all of you who took the time to answer this post and help me.

Thank you,

Klutzo

sara

11/15/07 8:09am

hi my name is sara i recently descoverd that my friend might have bipolar disease he doesnt knw that not even his family not even me because im not sure.he has all the symptoms for the disease i noticed them in him recently .i dont know what to do and he doesnt like going to the doctore.

klutzo

11/15/07 10:25am

Sara,

You should start a thread of your own on this subject, since it turned out that I do not have bipolar after all and can't answer your question. This post of mine is VERY old and I have not been here in ages, so people will not notice your question unless you start a new thread on it.

You will get lots of help if you start your own thread and ask for help.

Good luck,

Klutzo

jillee

1/20/08 10:52pm

If you have chronic lyme it is even more important that you get treatment with antibiotics as well as antidepressants. I am struggling with neuro agitation and lyme rage. I just found a web site that you can sign up for to read how these patients are treated. Initially on the antibiotics the neuro symptoms may get worse (because of die off?)

CHOLYSYTERAMINE SHOULD HELP ABSORB THE TOXINS. Also the only complete treatment protocol for chronic lyme was written by Dr. JOSEPH

Burascano Jr. Research lyme treatment protocol with his name and print it.

look up www.medscape.com/viewarticle/562276_3

klutzo

1/20/08 11:10pm

If you had read the early posts in my thread you'd know I am allergic to all of the Lyme killing antibiotics, and like most long term sufferers, I've read Dr. B's guidelines long ago and know all about it. BTW, we should never print out full names of LLMDs....DEA trolls love that. I was misdiagnosed for so long that my immune system became dysregulated and allergic to everything. I am also in stage IV now, which means I am dying of heart and kidney failure and there is no going back, not even with ABX. I no longer come here, and have not been here for ages, and am just enjoying the important people in my life now. I won't be answering anymore posts on this thread since I do not have bipolar after all and fixed my depression in three weeks with tryptophan. Good luck in your battle with Lyme.

Klutzo

lymie

5/ 4/11 10:54pm

hello this message is for klutzo---if you are still around and i hope you are----i have lyme too---and i am a christian. i know what you said about you being in stage iv of lyme disease and that you are dying of heart and kidney failure-----my heart goes out to you---if you are still alive and read this----i will pray for you klutzo---that is all i can do----but i will. thank you for sharing the info that you did for the rest of us lymies also. God be with you, klutzo.

Lyme Disease and Bipolar - questioning diagnosis

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