Hopelessness over symptoms

It's been a little while since I've posted because between feeling like I might be dying and packing for college I haven't had much time.

Basically I'm at a low point and I'm sure most of you have been there. I feel truly hopeless and detached from what's going on with my body.

I haven't had treatment or testing for Lyme because money is tight and my doctors think stuff is in my head.

Anyways, I just wanted to ask a few questions to reassure myself that I'm not dying or going crazy:

1). Five years after my initial tick bite my symptoms seemed to have spread/gotten worse pretty suddenly. Most notably I've been having chest pain and air hunger that occurs when I exert myself in anyway. Does it make sense that new symptoms occur relatively suddenly after 5 years of suspecting Lyme? Why now? Does it mean the infection has spread or has always been there?

2). Has anyone had sensations that they might either be dying, having a seizure, or passing out? This happens to me after I exercise. It's truly frightening and is accompanied by air hunger and chest pain. It's NOT a panic attack. I've had panic attacks before and this is not one.

3). Does anyone feel like their symptoms wax and wane through the day? Sometimes I'll wake up feeling fatigued and depressed and anxious, but towards the end of the day I'll feel relatively better.

Since I haven't been diagnosed formally I can't be positive that this is Lyme disease. I suspect Lyme because I had a tick bite shortly before the symptoms started, but I also suspect things such as cancer, diabetes, ect.

I don't know what's truly wrong and it's driving me crazy. I wake up feeling weak and hopeless. I've turned into quite a hypochondriac because of the lack of a diagnosis. I suspect the worst.

Thank you for reading. I needed to get that off my chest and hope someone can relate to my physical feelings.

Hi Raging Bull,
I'm so sorry that this is hitting you now during this important time of you life - going off to college. And I too am very happy that you chose to post, we didn't know how you were feeling or what was going on until you did. Thank you for giving us the opportunity to see if we can be of help!

Yes, it does make sense that these symptoms are ratcheting up like this. Going off to college is stressful - and stress lowers the immune function, so the bacteria have more of a free rein in your body. It may or may not mean that it has "spread", but that it's more active.

I have had black outs and I have passed out and I have had seizures due to these infections and the toxins that are created by them. I was so sick at one point that not only I, but my husband, my doctor and my kids thought I was close to death. Fortunately everyone was more than willing to do what they could to help me heal, and I was able to do just that - heal. These infections are very scary, and what they can do to the body is fearfully amazing. We have every reason to be afraid, but that should spur us into action - to get into treatment, to detox more or whatever it is that is missing for us to heal.

For me, it wasn't until I healed more that I could tell that my symptoms were waxing and waning, but they certainly did. I think for some their symptoms are so severe that they don't feel it for a while, but most of us realize that they do. It's a hallmark feature of Lyme disease.

So good news/bad news - you likely have Lyme with those symptoms and from what I can remember of your symptoms.

Why not start with something like Buhner's herbal protocol? You can do it on your own and we can help you as you go along. There are also support groups just for those that are doing Buhners that you can visit as well - and it will start healing you!! You can't think that you will be able to get very far if these symptoms are impacting you to this point so far.

To start Buhner's doesn't have to be super expensive and you can treat at low enough levels so that it shouldn't interfere much with your studies. As Girlie said, we aren't trying to scare you, but the reality is that you have a very complex infection that is only going to continue to break down your body the longer it goes untreated.

Also thank you Traveler for the idea of trying Buhners protocol. I think I will look into it and give it a try. Can't hurt (too much) right? :)

I hope you and Girlie both are doing well. I'm sorry to hear about both your struggles.

Raging I feel the same way my symptoms honestly change day to day and i'll have what I call a little break during the day when I feel "a little ok". It is very uncomfortable and discouraging when you have spurts of feeling semi-normal. I have stopped working out because when I do I get numbness and tingling in my hands and have extreme severe fatigue. Just like you this is all new to me so don't think your alone ok. I havn't even got to see a lyme doctor yet, making the appointment tomorrow. I will not sugar coat it. It is very scary but this is a good place to vent.

Raging Bull said...
The other thing is that at times I feel somewhat normal. I mean I can't run a marathon or anything, but sometimes (usually at night) I feel OK. This occasional normality almost convinces me that nothing is terribly wrong, and I almost forget how low my mental and physical state can get. It's like when I'm not in a bad state I kind of forget or blow off how I was feeling earlier. Do you or anyone feel this way?

This is very, very typical for Lyme. Symptoms can come and go and fluctuate. You can go through periods where you feel normal. Oftentimes, the infection will continue to progress and get worse, e.g. symptoms worsen and new symptoms develop. It is crucial to get treatment sooner rather than later so that things don't get debilitating. Since you had a "known" tick bite and you're having these symptoms, it is highly likely that you have Lyme. I'm not trying to scare you.

I agree with Girlie that you should see an LLMD. An LLMD can diagnose you based on your symptoms and guide you in your treatment. It is normal to doubt that it is Lyme. I'm grateful that I went to an LLMD who diagnosed me. I went into shock for a bit after getting my Igenex results. All my symptoms pointed to Lyme. Sure enough, I do have Lyme and Co. I'm working on treatment and I'm making progress. I don't want to be sick for the rest of my life. My infections were getting worse. Now, I'm on the road to healing.

The bugs can make things feel hopeless, but they are not. Things can get better. This is a great place to come for support. People here really do understand what you're going through!

Antonio - I appreciate your honesty and straightforwardness. I did not mean to say that Lyme isn't devastating or physically harmful. I meant to compare it to other diseases that have a higher mortality rate when left untreated. I know death is possible from Lyme though, albeit more rare than other things. Thank you for giving me an honest answer.

4321nate - Sorry to hear about your symptoms man. It's scary stuff. I totally relate to the working out thing. I can't do much at the gym without severe fatigue or faintness. It's always reassuring to hear that others are going through this. It's discouraging for sure.

PeteZa - I understand the feeling of euphoria when symptoms reside. Haha and the feeling crazy. Spot on. Venting here is very helpful and calming. Thanks for the best wishes. I'm trying to make the best of college.

Lymie Girl - This, and everyone elses posts, is very reassuring to hear. I actually had no idea that symptoms could fluctuate so much. I think it would be a shock to see Lyme and confections on the test results, but also relieving in a sense. I'm thinking I need to get my parents on board. I'm still under their house and rules so I cannot visit a LLMD without their knowing or agreement. I mean, I could, but I'd feel better if they were behind me on this. Anyways, I hope you continue down that road of healing. All the best to you!

Sweetpeaisme- I did have a known tick bite. No rash, no flu, no joint pain. I had an ELISA test that came back negative of course. It's tricky when the people that convince you it's all in your head are close friends or relatives. I know they mean well but it gets tiresome. Thank you for your advice about not letting people bully Into believing something. It's a good life lesson too.

Anyways, enough venting for tonight. I'm so grateful to have this forum available. Everyone here is supportive and knowledgeable.

Post Edited (Raging Bull) : 8/30/2015 9:59:40 PM (GMT-6)

Thanks Raging Bull. I hope that your parents provide you lots of support and understanding.

You can always come here to vent, get support or ask questions. Don't let anyone convince you it is all in your head. Your symptoms are very typical of Lyme. I have gone through phases of "feeling normal" followed by feeling symptomatic. I have had people question my treatment and try to talk me out of it. I have had doctors tell me that there is no way I have Lyme because there is no Lyme in my area. There are many psychological battles with Lyme. Like Girlie said, check out Under Our Skin (free to watch on Hulu).

Sorry I didn't respond for a while, I have been unpacking and getting ready for school.

This morning I woke up and thought to myself "I can't do this". I thought I'd surely be stuck in bed. I had air hunger and chest pain. When I finally got to the dining hall I was feeling faint and lightheaded.

I have not seen Under Our Skin. It sounds informative though, and I bet it's a moving documentary.

One symptom of mine that is also concerning is what feels like a lump or knot in my solar plexus. It isn't painful but it can be very uncomfortable. I can't imagine it's related to that tick bite, but you never know. Any idea or experiences with what that might be?

I think an ultrasound is in order. One thing after the next

RagingBull, given your symptoms there is no question in my mind you have Lyme and most likely Babesia, maybe more co-infections. Chest tightness and air hunger is a classic symptom of Babesia. You HAVE to address this as this can get progressively worse really quick. These critters are very unpredictable and its very hard to know what's going to affect you.

Find an experienced LLMD and get on the path to healing ASAP. Don't let the bugs run unchecked any longer. What's more important than your health? If you don't have your health you have nothing. You can get to a point where you have to drop out of college, could be bed ridden, etc. I know people your age this has happened to. Good news is you can address this and get better but it starts with a proper diagnosis from a qualified LLMD. Provide us your location and we can help you find one.

Stay strong we've all been where you are and a positive attitude is critical to fighting this horrible disease.