So confused... not sure how long my body can take this for

I feel so confused and lost I don't know what to do or where to turn to anymore. I've been on this journey for a very long time... several years in fact and no matter how bad I have felt I've always told myself that one day I'm going to start getting better and everything will be okay. I've remained positive all along, despite the fact that my health has continued to go downhill. I started believing the doctors when they told me that my labs show I am in above average health and I should be flying high... I believed that there truly must be nothing wrong when they told me my symptoms are almost dellusional. I tried to go on with my life and ignore my symptoms but I don't know how long my body will hold out for.

For those that don't know my story, I do not have a diagnosis. I have a negative ELISA and negative Western Blot with co-infections with only band 41 showing as IND. This was done through IGENEX. I have not seen an LLMD since my GP will not refer me based on these negative findings. I know I need to get to an LLMD, but I need to travel to the US to do this which isn't a big deal but I'm worried that I am going to spend another pile of money and all they are going to do is run a test and it's going to come back negative and then I will be sent on my way. I don't have any faith in doctors anymore.... I should't say that afterall they are doing pretty well everything they can and it's not their fault that all the labs and everything come back normal. It's just frustrating.

The only things that haven't come back normal has been:

Elevated ESR and CRP - both dropped dramatically after 3 week trial of doxycycline
Low Vitamin D and Magnesium
Sleep study showed moderate sleep apnea - successfully treated with CPAP, but has not helped with fatigue
MRI of Cervical spine and Lumbar Spine - Degenerative Disc disease in both

If I don't get better, so be it... but I don't want my life to be ruined and not know what did it to me. I want to be able to explain to my 3 year old why her 29 year old daddy feels like I'm 90. I should be out pushing her on the swings at a park or taking her for a walk, but instead I'm in bed while she is watching tv because I barely have the energy to take myself to the bathroom. Don't get me wrong... I am not grovelling in self pitty. I have pushed on for a very long time and I truly feel that if someone else where to jump into my body and feel what I'm feeling they would wonder how I've gotten by. I feel I have become pretty good at faking a healthy person. I look fine on the outside, I come across as being fine... but I feel very toxic inside.

What confuses me is trying to figure out when this whole thing began. 8 years ago I was away camping with some friends and we had quite a few late nights. When I returned home from the camping trip something wasn't right. I felt really spaced out, kind of disoriented, and really fatigued. I figured I was sleep deprived and I would feel normal after catching up on my sleep. 8 years later this still hasn't happened. I spent those 8 years feeling the same... spaced out/foggy, fatigued and almost disoriented in a way. I didn't have any other symptoms over this time period, except the fatigue has gotten worse with every year that has gone by. Surely if this is Lymes I would have had other symptoms during that time.

Well a little over a year ago I was hit hard with a new set of symptoms and they have been getting worse very rapidly since. I started getting dull ear aches, and then woke up in the night very dizzy... this dizziness lasted 24/7 for close to 2 months. I told myself it must be from a cold... I did have a few sinus colds over this 2 month period. Then I started to develop eye floaters... just a couple at first but now I see 30 or 40 clumps of floaters everywhere when I move my eyes. Shortly after developing the eye floaters I developed tinnitus, and then started having persistent after images. Reading off the computer now will produce strong image burn in of horizontal lines for up to a minute long after I look away. Again, so far none of this to me sounds like Lymes Disease.

Even writing such odd symptoms sounds crazy to me... it's no wonder that one doctor said my symptoms were dillusional.

Well it doesn't end here... I now start to develop other symptoms which to me sounds more typical of LD. I am experiencing a new level of fatigue... it's like my body is completely burned-out... like there is nothing left in the tank. It's not a fatigue in the sense that I could fall asleep at anytime, but I just constantly yawn all day long and have no energy. I feel like I'm dragging myself around the entire day.

Then I started developing muscle twitching... it started with my eyelid and then went into every muscle in my body. This isn't so bad now but I now have very weak and fatigued muscles which also ache. They hurt if I press on them even gently, as if they were bruised. I also am getting pains in my hands, fingers, feet and knees. I have near constant eye pain, light sensitivity and tenderness in the temples. I also have noticed that I can't stand to be hot. It brings out the body aches and fatigue even worse and I feel even more uncomfortable and irritable than I do most of the time anyways.

As I mentioned, I don't know what to think. Maybe this is or maybe it isn't LD. Maybe I have some neurological problem. I've posted on this forum, migraine forums, thyroid forums, fibromyalgia forums, chronic fatigue forums, neurological forums and probably various others. It seems every forum I post on people say check into Lymes. I don't know whether it's because it's just easy for people to say that since I don't fit in anywhere else or if my symptoms are very typical of lymes.

I've tried everything imaginable to try and get my symptoms under control so I can push on with life. I've got the largest pill organizer I could find and am taking various herbal supplements and vitamins and nothing is helping. I am desperate to feel better, at least just for a little bit. I am taking my daughter to Disney World in October and I can't even see how this is going to work. I might have to get an electric scooter or something.

I just don't understand how it's possible for one person to have so many things wrong with them. Any one of these things is enough to alter the life of the average person. One minute I have myself convinced that this has to be Lymes... afterall I have so many unusual symptoms that don't really point to anything else. Then the next minute I'm telling myself that a lot of my symptoms aren't Lyme specific so it can't be. The hardest part for me is not knowing. I want to know finally what is doing this to me. I want to be able to say to people... huh... I'm not so crazy after all. I honestly don't know how I've managed to keep it together this long.

The only time I noticed even the slightest bit of relief in my symptoms was when I took the 3 week trial of doxy. It brought down my eye pain, body aches and I felt more energy. I had motivation again to take on some projects around the house.

This is really my last plea for help... I really don't know where to go from here. Sorry for such a long post, but I am truly lost and looking for any thoughts, comments, suggestions or anything really.

Thanks. I lastly want to say that you all have been very supportive and helpful in my posts in the past and I am very thankful. I feel more a part of this forum than any other I have posted on. I just wish I knew whether I belonged here or not.

HI Jr,
Thank you for re-posting your story! It helped me to get a better picture of what you live with.

I have to tell you that ion my first LD test, the only band that came back as positive was band 41 as well. The LLMD that I was seeing at the time told me that because I had been infected for such a long time that he wouldn't do any more testing - because the tests weren't that accurate (what an understatement!) and because I had most likely had these infections for a long time. Do not allow anyone try to convince you that this is all in your head or that you will be fine. Like the others have said - sounds like Lyme to me!! It's one of those things that this applies - if it looks like a duck, walks like a duck and quacks like a duck- you're best to believe it's a duck! The 'duck' in this case is Tick-borne infections!

I have a few names of LLMD's , if you would share where you are located (no specifics, just a more general sense) then I would know if I had the contact info of someone near to you. I even have the name of a doc in Calgary that treats tick-borne infections -should you be anywhere near there. You are more than welcome to email me directly for any info I might be able to provide.w

There are a couple of different ways that I can see for you to go, depending on your preferences. First I would suggest you see a LLMD if possible, but if that's not going to work, then you can use one of the protocols that you can do at home, or you could - depending on how you view Chinese Medicine and Homeopathic medicine- find one of them to treat you. That's what I did when I discovered that I couldn't handle the abx. I use acupuncture and Chinese Medicine together and have had some pretty good results so far!!

My kids - and my hubby- have never known me as a healthy person, so I can fully understand your concerns about you little girl. It's really hard to stay on the sidelines and watch your kids grow up without you being able to be really involved in their lives like you want to be.

You most definitely need to find treatment - these infections have a way of ruining your health slowly for some, as these infections can go chronic in just a week for some of us lucky ones! That's what happened to me. I only had 1 acute infection - it was RMSF when I was 7 yrs old.

BTW- the 3 weeks you were on Doxy and felt better is what is known as an abx challenge - and you passed. Feeling better then getting worse as soon as they are stopped is one way LLMD's diagnose their patients!

Hang in there! If you will allow us, I think we can help you find the help you need!

Traveler thank-you for responding. I know that I need to get myself to an LLMD. I actually forgot I had my name in to see one in NY until they called me a couple of weeks ago. They have a couple months waiting list, and they called me with an appointment for the week that I am in Florida. I did ask them to call me back with another appointment when one becomes available.

I do live in Ontario Canada and I am wiling to travel to see an LLMD that is certainly open to clinical diagnoses. As mentioned, I am most concerned about getting pushed off by another doctor. I really want someone who will at least treat me and see how I respond. If anyone has any personal recommendations that certainly goes a long way and I would love to hear them. I have my email address visible in my profile so if you could please email me... I would really appreciate it. Traveler, if you could also send me the contacts that you had in mind I would appreciate it. Alberta is a little far for me to travel, but I will travel to NY, Pennsylvania, Vermont, New Hampshire and Massachusetts.

Thanks again to everyone, I really appreciate the support and advice.

Hi Allieann, thank-you for sharing your story with me. Sorry your family had to go through this, but I'm glad they are both doing well now. I certainly don't remember being bitten by a tick or seeing a rash around the time my symptoms started. I even don't remember coming down with flu like symptoms. If what I have going on truly is Lyme than it must have been a stealth infection that entered my system without me knowing.

Thanks again for sharing your story, it sucks that people have to suffer like this but comforting to know their are others going through the same thing and getting their lives back.

All the best to you and your family.