Very Depressed

Rapture, I know exactly how you feel because I feel the same way and the same thoughts have run through my mind. Trust me, it will eventually pass although the other symptoms unfortunately will take time. I realize everyone is different but in my case my llmd thought the very severe bouts of depression and hopelessness were due to Bart. He put me on rifampin and believe it or not it did help tremendously. Of course I still felt depressed...who wouldn't dealing with this horrific disease...but the very severe bouts did disappear. I've been off of antibiotics and trying the herbal route and lately have been experiencing this again. I know how bad it can get but just keep reminding yourself that it's temporary...you will get through this. If you truly feel as if you can't handle it, call your doctor immediately.

It certainly doesn't help that others cannot begin to understand how sick we are and how much we are suffering but the members on this forum most definitely do. You've definitely come to the right place. The people on here are fantastic!

I know most llmd's do not accept insurance but there are a few that do. If you send a message to [email protected] she will be able to give you a list of llmd's in your area...just make sure you include your zip code. I also think Traveler, a member on this forum, keeps a list.

I'm sure some of the other members will come along soon with advice and suppport.

Hang in there....you're not alone!

Hi & welcome Rapture!!
I am so glad that you found us!! I'm sure that you will find us to be a caring, helpful & understanding group. Please don't worry about your first post being the way it is - we all need help once in a while. This insidious infection takes over in many lives, unfortunately.

Are you seeing a Lyme Literate Medical Practitioner? What abx are you taking & at what dose - if you don't mind me asking?? Are you doing anything to detox? Are you taking any probiotics? Sorry for all of the questions, I promise I'm not trying to be rude, but the more we know of your 'story', the better we will be able to suggest things to help you get through this point in your treatment.

A whole big bunch of us here have experienced what you described above. Some of us have experienced it all at once, some will have experienced it over a longer time period. There is no one-size-fits-most treatment with this illness, as Tick-borne infections attack the weak points in the body & we all have different weak points. Another thing is that abx are not the route that will work the best for all of us. I have had to seek out an Acupuncture doc who is also a Master Chinese & Western Herbologist in order to find relief.

Hang in there, Rapture. It's a rough road, but now you know that you do not have to walk it alone.

May you find peace on your journey to health.
Trav

Hi Rapture. Welcome. I am glad you found this forum and sorry to hear that you are going through so much right now. Many here struggle or have struggled with depression and a feeling of hopelessness, in part as a result of the infections, but in part also because of the situation. Lyme and coinfections are difficult to diagnose, difficult to treat, expensive to do either, are misunderstood, and can be devestating to live with. It sounds as if you, like me, cannot live any longer life as you knew it before you got sick. There is a lot of loss involved in that. You are not alone, and on this site, both on the lyme forum and on the depression forum (and probably the chronic pain forum as well), there are people who understand and can help by sharing their ideas, their wisdom, and their compassion. I can't imagine how I would survive this journey alone; knowing there are people who have been where I am is a great comfort to me. I hope it is to you, too.

In reading your post, I was unsure if you have been diagnosed with Lyme, and if so, if you were diagnosed with any coinfections. Can you share more about what you have done and are doing to treat it? My treatment is open-ended; I am unfamiliar with the concept of a "round" of antibiotics when treating Lyme disease. What are you taking now? Are you taking supplements and herbs? Are you using any devices (rife machine, oxygen chamber, IR sauna, etc.)? Do you follow any special diet? Do you see a Lyme specialist?

Before I was diagnosed with Lyme, two of the many diseases I was told I had were fibromyalgia and interstitial cystitis. No pain killer I tried put enough of a dent in that pain to be worth the expense. What helped me most was a combination of following the right diet, taking the right combination of antibiotics, taking herbs and supplements, learning everything I could about Lyme disease and coinfections, getting and sharing emotional support and treatment approaches via support forums, and detoxing. Toxins can cause inflammation and pain, too. For me, the first step to getting out of my debilitating depression and onto the road to living an acceptable life was getting the pain under control. In my case, diet was a big part of that. I am by no means cured from any of the infections yet, but after a year and two months of treatment, I am feeling substantially better most of the time, on the days I hurt it's usually mild-moderate instead of unbearable, and I am able once again to do some of the things I used to love before I got so sick. Please have faith that things will get better. You sound like a person who will keep looking for the right answer until you find it.

By the way, I also have issues with my left arm and am in the process of trying to find out what is wrong with it. Do you know why you can't use your arm?

I hope you find some comfort here and that things turn around for you soon.

Rose

Thanks, still here but still in bed and crying. yes I was diagnosed with Lyme but not until after suffering 4 yrs with it. I was in and out of the hospital with mystery ailments, twice to see a physical therapist for weeks until insurance ran out, numerous dr's, tests and finally when I started blacking out I really freaked. I went for the first time to a neurologist and he said FM wish I was unfamilair with. I insisted on an EEG for my head because the headaches are so bad. Already have had CT's, MRI's x-rays head to toe and blood tests for many things. They thought I could have RSD but no one ever tested me if there is a test. It all started with me waking up one day and I had svere pain in my right side (torso), right hand, shoulder and neck. I couldn't open my hand, it was like stuck closed or lift my arm. This lasted for about four months but my hand problem was close to a year. No one could figure it out so I just lived with it. No one said maybe Lyme and I didn't think of it and when I did, my Dr said no it ca't me that so I let it go. about four months prior to that incident, I woke up one day with a round red rash sorta thing on my toe and it got worse over a weeks time but I was leaving for vacation and just thought it was a spider bite and no big deal. It got very painful and a kid accidentally stepped on it one day, so it was a mess. After going in the salt water and wearig open toe shoes it started to heal. I believe this was the tick bite. It looked exactly like the tick rash but I didn't know at the time. This happened in NJ where I know a lot of people get bit by ticks.

Over tme the pain in my arm turned into a pulling, tingling, needles feel in both arms and hands. My right shoulder and neck was severe pain all the time. No one could help me or figure it out and with work, I didn't have time to go to Dr's all the time. I lived a lone and bills to pay. Then I moved to SC with my boyfriend and things got worse, a lot worse. Finding a Dr here that is any good or cares is like finding a needle in a hay stack. My job changed and so did my insurance and not for the better. My symptoms became worse, especially the headaches. After about 1.5 yrs when I started blacking out, went to the nuerologist he said FM and that was it. He to this day keeps insisting FM is the cause of everything. Since, I have been to two different primary Dr's, two Rheumotologists, infecous disease Dr, hospital numerous time in severe pain, physical therapy again and of course the nuerologist. To much to say here what happened at each but they mostly all stink and don't care. None of them know anything about Lyme inclusing the infectouse disease Dr that totally dissmissed me. I only found out my test was positive because I freaked out one day in my primary Dr's office and said, give me a blood tests for everything and anything we both can think of. he didn't even say Lyme, I said add Lyme so he did. I knew it on my heart I had this and no one would listen. Of course it came back positive and he called me immediatly and said come in to get the antibiotics (doxy) for 30 days. This is after four yrs of getting bit and going through hell. I was and am so mad these dr's didn't listen. After 30 days I did feel a little better but it only lasted a few months, came back even worse. In the meantime kept blacking out, pain spreading, in bed, depressed etc...so started to see a therapist becaus I just wanted to die. She helps but after awhile you get sick of hearing yourself carry on about all this. Sure you all can relate. In the meantime at home, boyfriend tries to help but works out of state and I'm alone a lot. When he is here we have no fun, it's all about him catching up here and me being sick. I'm 46 and my shower is set up for someone 100. I can;t shower when he isn't here sometimes because I'm too scared I'll slip. My headaches are the worse, I go days with no TV, in bed isolated crying, taking meds and hoping someone would come in and kill me. I'm driving him crazy with paranoying, saying I want to die, complaining about pain etc...my mother is far, in PA and is so upset she can't help me. I have no one else but feel extreme guilt all the time that others have it worse and I should shut up. I feel guilt over everything, all the time. I cry so much my nose bleeds and I throw up. My memory is so bad I cant even give my phone number or if I do get out to a store I get lost even if it's only down the street. Sorry, I know this is all stuff most of you went through or are going through.

I talked to my Dr and he gave me a second round of doxy but it did nothing. I researched, read about Lyme and bought Under Our Skin. There are no Lyme Dr's near me that I can find. I considered going to one but I don't have the funds and it seems most don't take insurance. I called one and it was like $600 the first visit and then each visit after goes down but that doesn;t include, meds, tests, follow ups, travel expenses. I'm already a healthy eater and have been way before this all happened. I haven't eaten meat in 16 years, rarely eat fried food. In NJ there were a lot of organic store, health food stores near me to buy all kinds of things but where I moved to they have nothing. I still eat pretty healthy, in fact better than anyone I know so I think I'm good with that. I know exercise is helpful but can't move most of the time. Just typing this, I will be in worse pain because of it. I used to work for Whole Foods and know somewhat about homeopathic remedies and honestly everyone I've ever tried didn't work for me. I don't mean to sould negative but one thing I've learned is there is no one answer for everyone but I think someone else said that too. I try so hard to fix this and have been for a long time, it's getting worse. Finally, I asked my primary if he would be willing to put me on antibiotics for a longer time even though he goes by the CDC guidelines of the 30 day only. Thought he would say no but he said yes to six months of doxy but pill form only. He said he wouldn't do an IV and honestly that scares me to death anyway. I also have huge phobias that came out since all of this, that's another long story but needles totally feak me out. I sound like such a baby and here some the guily feelings. : ( everything I say, I feel like it sounds like a complainer or I'm just being a baby :( everyone tells me, why dont you do this or that but I have been. none of this stuff is free, I can;t drive half the time and the drs are 45 min.s away plus $50 to talk for two min., this feels so hopeless. One time I sat in the parking lot for 15 mins after an appointment crying hysterical because I couldn't drive home and all I could think is, I want to die and how can I do it w/o pain. my dogs are the only thing saving me. : ( ok, trying to calm down, very upset saying all of this. so tired of it repeating this story, I'm sorry. thanks again to everyone that posted, I will have to come back and reread, look into what I can...someone mentioend a daily journal. I used to write everything because I was getting mixed up withh all my meds forgetting what I took etc...plus I wanted to be able to tell drs how I was feeling each day. I can't hold a pen anymore for ore than a sentence so I started a blog, just for myself if anyne cares to read. I miss a lot of days but it's almost up to date. http://maryannmazz.wordpress.com/

Post Edited (Rapture55) : 10/18/2010 8:45:51 AM (GMT-6)

Rapture, I read part of your blog. What a struggle it is with this disease. It’s especially difficult when you’re not working with a Lyme doctor; it must feel like stabbing in the dark trying to figure out what is going on and how to fix it. Yes, no one thing works for everybody and that is one of the things I find most disturbing about dealing with these infections. I have to know so much! That’s why I find it so helpful to be in contact with others who are also dealing with this. I love the online forums, but also get a lot of help from local lyme friends. Do you think there may be a Lyme support group near you?

I've had Lyme symptoms for more than fifteen years. I've seen so many specialists, had so many tests, suffered more than I can ever describe, seen therapists, taken meds for many associated health problems, etc., but until I learned what was wrong and what to do none of that helped. It sounds as if your research is leading you to more understanding of treatment options, and with that, I hope, you will find renewed hope. It’s great that your doctor seems open to extended antibiotic treatment, but if he isn’t a Lyme specialist, he may not order the best tests for coinfections. Is it possible for you to see a Lyme specialist at least a few times to be sure you are thoroughly tested, and then rely on your regular doctor for treatment? There are some of those $600 Lyme doctors near me, too, but I kept searching and found one that is much more reasonable and who follows all of the latest research. One of my Lyme friends sees her Lyme specialist three times a year, and does phone appointments when necessary. That makes it less expensive.

In my experience, a traditionally healthy diet needs some amendment to be healthy for someone with chronic infections. Sugar, even from “healthy” sources creates an environment in our bodies conducive to pathogens. My healthy diet used to include things like bran muffins sweetened with honey or molasses, whole grain blueberry scones sweetened with succinat (an unrefined sugar), etc. I ate peaches and watermelon and grapes thinking how healthy they were. But those are high sugar fruits. What I didn't know then was that sugar feeds bacteria. I also loved tomatoes and eggplant. Tomatoes - everyone knows those are good for us. But, these foods can cause inflammation (along with potatoes - the nightshade group of foods). When I cut them out, it helped. Carbohydrates turn to sugar; refined carbohydrates are particularly bad. Through trial and error, I also discovered that gluten created problems for me. Because of years of illness, in addition to foods that can be problematic for most people with Lyme and coinfections, I had also developed sensitivities to many other foods. It took a lot of work and using the elimination diet to discover what I could and could not eat. That is how changing my diet helped me. There is a book “The Lyme Disease Diet” that may be useful.

You mention blacking out. I was blacking out, too, and had to quit driving after it happened to me once on the freeway and I nearly caused an accident. After a lot of testing I was diagnosed with borderline adrenal insufficiency. Popular terminology is adrenal fatigue. That can have a devastating effect on how you feel and how your body works. It caused me to have low blood pressure and a low heart rate which in turn was causing the sudden black outs and near-fainting. For four months I took cortef, a steroid to replace the cortisol I was missing. That gave my adrenals a rest and when I slowly weaned off of it, I was much improved. Now I take a natural adrenal support supplement. I haven't blacked out in a couple of years. Low adrenals also causes energy loss and for me that is much better now too. Adrenal problems are not uncommon for people with Lyme (and other chronic illnesses).

You mention on your blog stinging skin. That was awful for me and I tried many things to fix it. Hard to know if this is just the natural fluctuation of things or if it worked, but upping my B vitamins seems to have resulted in resolution of the stinging skin. It's been two months since I've had that problem.

I could go on for pages, but all I’m trying to say is that there are things you can try, that for most of us it’s a process of trial and error to find the right things. Every day I learn something new about this, new things to try and new things to ask my doctor about. I didn't get to feeling this good all at once; it was a process of researching and learning, and resolving one thing at a time. I know it’s awful when you’re feeling so bad and the prospect of all of this research and work must seem daunting, but it’s the way out. I will never forget when I was bedridden, writhing in pain that nothing could take away, crying and hoping I would not have a long life because I could not bear to live like that. I am far away from that place now. You can get there. It’s true no one thing works for everyone, but it’s also true that something works for nearly everyone. It’s just a matter of finding it.

And, when things were at their worst, sometimes I had to take it ten minutes at a time. The long view was too overwhelming. I hope today is a better day for you.

Rose

Traveler - isn't that the truth. I used to notice a little ache here or creak there and think nothing of it. Now, I know better and as soon as something new shows up I start researching to see what I can do immediately with the hope that it will not blossom into anything worse. I'm glad you brought that up.

Rose

Simela said...
Rupture:
Did you have a + lyme test? Have you tested for co infections? Getting the right treatement will get you better, but treating the symptoms will not--you have to treat the disease. YOU MUST get a good dr. that will help you. Where do you leave? If you have lyme disease, you have to start treatement asap.

Yes but not sure of the details of the test. Every Dr I have been to including the infectious disease Dr says take antibiotics for 30 days and thats it. They are not taking me serious and say its all FM. I'm now in SC and on the third treatment.

Caldonia Sun said...
Rapture, you are not alone and your thoughts are not unusual. So many of us have felt that way after years of not being diagnosed and then starting treatment - the herxes, the discomfort of abx, the not knowing what will happen. It's frightening. And if you read some peoples' stories, it seems hopeless. But it's not. There are some of us that are doing better through abx, herbs, homeopathic or a combo of all of them. It IS expensive and you have to make choices to cover the costs.

Remember, too, that anxiety and depression are symptoms of both lyme and bartonella. They can be disabling. Hopefully you can continue with the antidepressants and therapy. In time, you should see results if you just keep at it.

I hope you don't give up and can find a way to see a lyme literate doctor. He/she can put you on the right treatment plan and hopefully you will get better. Please keep posting and know that people are here for you and understand.

Thank you. I never heard of herxes and just looked it up. I also found a list of ways to deal with it that some I'm already doing but not all so I will try. You know, I'm just tired of trying is the problem. And the thought that I might have several more years of meds to stop this or the fact that it may never stop makes it all hard to keep going. I know everyone here has been there and it does help to know I'm not alone feeling this way. The other frustration is everyone I talk to seems to have all the answers, ya know? I wish everyone would shut up even though they are just trying to help. (not here of course) My mother tells me one thing, friends another, internet another and then Drs another. It's frustrating and confusing.

Jeminij said...
Rapture, I have felt the exact same way and have been in your shoes. I too went for years undiagnosed and misdiagnosed with fibro, emotional problems, etc...no one took me seriously until I finally found a lyme md and he started treated me 3 months before I ever met him because my symptoms were so severe that I too couldn't get out of bed. I was bedridden for over 6 months while I started treatment. I couldn't lift my arm to brush my own teeth, take a shower or even walk downstairs. I thought my life was over and I wanted out more times than I can count. I couldn't leave my bedroom and the anxiety and was more than I could handle at times. But, I stuck with the treatment as awful as that was at the time and I slowly began to improve, but it wasn't until almost a year that I saw just slight improvements. I ended up staying on the medication for another year and felt much better and so I continued on for another 6 months until I was 95% and had my normal life back. Once I stopped I got to 100% and was back working full time, living on my own and in a new relationship. All things I wouldn't have imagined possible just a few years earlier.

So my story is that you can get better even though you can't see the light at the end of the tunnel right now it is there. I was fortunate in that I was able to get on disability within those first 6 months but I literally couldn't get out of bed or add 2+2 ( I had just graduated from college with honors 8 months earlier). I think my lyme md had to tell them I had fibro because at the time (this was 12 years ago now) and I think even still they don't take lyme as chronic condition. Keep trying for disability because although it isn't much, it can help with bills and insurance. Do you have a good lyme dr? It sounds like 6 months of treatment may not be enough for you. The rule of thumb is to continue treatment until your symptoms are gone and then stay on them for another 2 months. That's what I did and it worked for me. By then I was so used to taking them that it became normal.

But I kept journals too. That helped me because we didn't have these chat rooms back then for me to talk to anyone so I thought I was the only one in the world going through that hell and it's nice that we have this now to reach out to others. I never thought I would ever get well never mind go on to live a normal life (whatever that means right?). But, I now own a home and have a 2 year old daughter. It can get better. I am living proof of it.

Hang in there and come here to vent, talk anytime. We are here to listen and to help.

 Thank you. I'm really glad to hear you got better. It seems I really need to see a Lyme dr and I'm working on it but not easy w/o funds. May I ask what Dr you went to? You can email me if you rather. I also was wondering how you were able to get disability so quickly. That is a huge part of my stress. I have a lot of bills and my copay everytime I see a Dr is $50. I was going sometimes 3 times a week to see various drs but had to give most up because I cant afford it. This doesnt include when I have to go to emergency $150 and ll the copay on my meds. At first I had savings I was using to pay bills and putting all this medical stuff on credit cards but cant do this anymore and I'm still sick, if not worse. I need disability to at least help with the medical bills. My dr did say I have FM, chronic headaches, chronic insomnia and chronic fatigue but they said I can still work. I'm in bed 95% of the time and need help in the shower so not sure how they figured I can work.

Rapture, I don't have a lot to tell you -- I am not suffering the pain that you are in, except for the mental and emotional pain. My heart and prayers go out to you, sincerely, because I understand how the mental and emotional parts disable us and we are not able to even grasp any positive type feelings that might help us improve.

I am interested in what others here are saying about Bart. My new LLMD did not test me for Bart because my test from a year before was negative. It was a standard Quest test, I believe a titres test or whatever.

What do you all think about the reliability of our Bart tests? This blood test did show babesia. Should I feel confident that I do not have Bart? Or should I request a special test?

Back to Rapture: (and the rest of you who are suffering) I am sorry, I don't know what else to say or do besides keep you in my prayers. My mind has become so twisted, I too fear that I will do something that I don't want to do.

My family believes that I have Lyme, but no one understands what this means. They expect me to be fine. When I took a sick day last week, my daughter emailed me that I 'really needed to get a grip on this'.

May I please ask you all this? The blackest depression that overtakes me is an unbearable self hatred, extremely heavy burdens of guilt & responsibility. I understand that we all have this to some extent. But could it be the lyme (or co's) that is making this so much worse? Because at these times, I do not feel that a therapist can help me.

Rapture, you have to hang on! There are too many sick people here who want to help you and guide you!

Given the state of Lyme disease and co-infections in this country, I wish there was a centralized hospital or something -- somewhere that we could go and be properly tested, diagnosed, and treated, without totally wiping out all our livlihoods. The government says it wants to help everybody, but this is really not true.

One more example (I'm going to post it, too) is Babesia. My LLMD is finally prepared to treat it and asked me to check to see if Mepron or malarone were covered by my insurance. They are not, and neither is the generic brand. I will write to my insurance company and ask them what they suggest my Dr give to me for Babesia. What, are they in denial about this too?? So how do they treat malaria in this country??

They're all (ins companies) getting ready to go out of business, that's what. So they don't want to pay for anything that is expensive or they feel like we can live without. They have to cut back -- inspite of the fact that this year, everyone's premiums are going up. So now it's going to get worse. I'm not going anywhere near any political debate, but I hope most folks understand that when the Fed takes over, our access to many drugs is over.

I am sooo sorry to hear all you ar4e going through. this disease is devastating as it is.... and then trouble getting help--trouble getting someone to BELIEVE something is wrong-- is heart-wrenching, wrong and sickening. I was lucky in that I stumbled...yes, stumbled...upon a Lyme-wose doc years ago on a regular check-up, way before I realized I had Lyme. I liked her --- she did not write me off as a psycho when I said I needed TONS of B12 just to have good energy, despite normal blood levels (all other docs practically shook me and yelled at me to stop). She simply, calmly commented "well just because you have plenty of B12 in your blood doesnt' mean your body knows what to do with it." I was shocked, and never went to another doctor. And when I developed odd symptoms *she* was the one who woud not let the Lyme theory die despite negative test results. You are suffering, it is so palpable....but remember, miracles do happen, it may be one day when you least expect it, or it may be when you are strognly fighting for your rights...something will budge.

I understand funds are a HUGE hurdle...if you could get tested by a chiropractor/nutritionist for the co-infections of babesia, bartonella, etc. you could at least get a better picture if other bugs are ailing you. Unfortunately, the co-infections can be hard to detect, too (someone asked about bartonella--there are over 100 strains and we only test for 5 I think!) but symptoms may help decide what else you may have. I for instance have extreme irritability and anger, a common sign of Bartonella (though Lyme has it too), and some other sxs too, but my test for Bart was negative.

You said you've tried homeopathic methods...does that include the herb methods, such as samento and cumanda? Two large-scale studies were just completed showing they were just as effective as antibiotics in killing off Lyme and co., with much less damage from side effects to the body. Of course, it's more money again. But if you have not tried, if you can find the money it's worth it.

I wish I could do more for you....I feel a little like I'm just throwing out tidbits that may not be helpful. But one thing you have gained...this forum. I stopped looking for a while, and felt so depressed and alone...when I logged on weeks later, I felt so much less alone and less crazy. And it feeds my urge that something has to change. Something has to be done. Obviously everyone is trying, but we all can't stop calling representatives, posting on facebook/youtube etc. People have to hear us. For now, know that people here are hearing you. Hang in there.
All the best,
Zinta