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Posted 5/9/2014 4:52 AM (GMT 0)
I dont know if I have Lyme - still waiting for test results. I was told Lyme disease is not common where I live - BC West Coast, Canada. My symptoms seem to be worse in the evening - particularly the nerve pain - does anyone else have symptoms that fluctuate in intensity during the day?
Posted 5/9/2014 12:37 PM (GMT 0)
Hi Girlie,
Welcome to the forum. Sorry you aren't feeling well.

I think most people with Lyme will tell you that their symptoms fluctuate daily, and many notice a two week cycle to their ailments. And, very often, symptoms completely disappear, migrate, and reappear months and even years later. With treatment, however all this can be resolved.

Do take a look at the "New to Lyme" post at the top of the forum, it has a lot of helpful information and many good resources. You'll find the canlyme.com site particularly helpful.

Even if your tests come back negative, don't stop there. The tests are very inaccurate. While some regions have a greater concentration of Lyme disease infection rates, your own infection is not determined by it being common in your area. After all, ticks don't drop off their host at the border! With poor diagnosis, testing and reporting standards, the official case numbers are terribly inaccurate. In short, if you feel you have Lyme disease, don't take no or "it's not likely" for an answer.

Again, welcome! Hope you get some answers soon.
Posted 5/9/2014 1:23 PM (GMT 0)
Girlie:
My main symptoms at this point is tingling on top of head, head pressure, pressure behind eyes and a disequilibrium feeling. These symptoms are always worse in the evening. I have put out a post of this in the past and did not get much of a response. It is good to know that I am not alone, but I don't have an answer as to why this happens. Maybe it has something to do with cortisol levels.
Posted 5/9/2014 1:52 PM (GMT 0)
My symptoms are usually at their worst in the evenings too. For me, it's mostly the anxiety, palps, lead leg, fatigue and achiness in both legs. My LLMD could not explain why this is. I agree with aphysicalwreck, I'm sure it has to be the adrenals. I want to get another test for this, (saliva this time).
Posted 5/9/2014 2:49 PM (GMT 0)
Thank you so much for your posts! I am crying as I read this, as I finally have validation for these awful symptoms. I also get tinglies on the top of my head - but those ones don't even bother me..but those aren't my worst symptoms.
My story: Have always been healthy, happy....am 51 years old - but people think I'm early 40's. A year ago I suffered a pinched nerve in my neck that radiated across my back, down my arm, and to my hand. I slowly improved for 5 months, then suddenly it all went downhill. I started getting "vibrations/buzzing" in my body in the late afternoon and shivers - like adrenaline coursing through me. Finally, Doc checked cortisol levels and they were very high. Went through scans/bloodwork to check adrenals/thyroid/vit deficiencies...you name it...also had autoimmune tests done...scan for MS. Two months after that I start getting pain in my joints and then in my muscles. Through all this I have anxiety and sleep problems. Terrible nightmares....can't nap anymore.... The doctors are dealing with my symptoms separately....no one is tying it all together....I also read that Lyme can cause radiculopathy - so maybe the original injury was due to Lyme. I doubt if I have a pinched nerve, along with adrenal problems, along with fibromyalgia...etc. All I know is I am very unwell...and have cried everyday for the past year....and this is NOT me. My life is on hold and I'm so tired of it.... I am actually hoping I get a positive lyme test...then I will finally know for sure what I have and can treat it...I feel so crappy - that i would stay in bed all day...but I don't feel good even in bed.... Sorry for the rant...I'm having a "low" moment and just need to vent.... Thank you for your replies.
Posted 5/9/2014 3:31 PM (GMT 0)
I'm so sorry you are suffering through this Girlie :( I know all too well how hard this is, as does everyone else on this board. I know that validation is so important, especially in the early stages of determining what the source of all of your symptoms are. Remember, there are those who may not test positive, so it's critical you find an LLMD, otherwise you may be spending precious time and $$$$ on a wild goose chase. Do you have an LLMD?

Just curious, with your high cortisol levels, do you have hypertension? Are your adrenals being treated? That can definitely play into the anxiety and Lyme/coinfections.

Just stay with this board, they're very supportive and VERY knowledgeable. My LLMD, whom I really like, told me to tread lightly with message boards as they can cause panic, as everyone responds differently; but I told him it's accomplished actually the opposite for me.... it's given me the confidence and resolve to take charge of my own health through real-life experiences and knowledge instead of digging my head in the sand and waiting for my next appointment.

((((hugs))))
Posted 5/9/2014 3:41 PM (GMT 0)
I do not have hypertension - all my "numbers" are excellent - so to the doctors i look healthy. My blood pressure is 110/68. My thyroid has tested good...etc. and if you look at me - you can't tell I'm not well. After I tested high for cortisol, the endocrinologist gave me a test where I took a low dose cortisone pill at night and then the next morning had a blood test. The cortisone was normal at that point, which he said means I am fine. But I'm not fine. He then said "menopause has many faces"...grrrr. I have always been healthy, happy, in shape...and was going through peri-menopause for a year prior to all this...and have never had mood issues before...no menstrual issues, no postpartum depression, etc. I have way too many symptoms that can be attributed to menopause. I even had a CT of my adrenals...nothing there. I also paid for an MRI of my pituitary gland because i thought for sure that was causing all my problems. I went on some adrenal supplements for 4 months and did meditation, tried to lower my stress, mild exercise...but nothing changed for the better. Whatever I have is systemic - it's affecting so many areas of my body...but all the Docs want to do is treat each thing as an individual ailment....ugh....hoping and praying for my lyme test to come back positive. You know you're not well, when you hope to be diagnosed as unwell....go figure.
Posted 5/9/2014 7:33 PM (GMT 0)
Hey Girlie,

My pain started the same way, but in the shoulder. It would radiate down to my hand up my neck and back. I went to physical therapy and it did not help. the pain slowly moved throughout my body after a

shot. I have extreme anxiety/depression and it is not me either. Very hard to explain it bc it feels like I am not controlling the emotions. PS-you are not crazy. I've had to say this to myself multiple times. Hm,

Talking to myself? Ok, a little crazy! ha. You gotta laugh. Please share your results when you get them. Traveler told me not to be upset if they were negative and to get tested by Igenex. I'll say the same to you. God bless.
Posted 5/9/2014 8:42 PM (GMT 0)
My symptoms are always worse in the late afternoon and evening. My main symptom right now is neck issues, eye floaters, and veins bulging out and causing pain. By bedtime every night, I'm ready to pass out from all the mess.
Posted 5/9/2014 9:57 PM (GMT 0)
Hi Leilex, Thanks so much for sharing!
All along we've thought I started with an injury from repetetive strain. My initial pain was shoulder blade on left side for a week, then 5 days later it went to my neck,across my back and down my arm and hand...a year later I still have a numb finger. Now, I have many more symptoms...and someone said to me maybe it was "unconscious anxiety". I don't even know what that is....but I go through phases where my mood is very low that now even starting to question myself that it is mood related. But I've always been happy and strong emotionally. I can't get through a day without crying now...but it's because I want my life back and feel so sore...and awful...I don't think I'm causing all this with my anxiety...but my mind is definitely affected. It is true that when my mood is low, that it does seem to exascerbate my symptoms...is that normal? That doesn't mean it's psychosomatic does it?

So, it is possible the original injury was Lyme all along?
Should I even giving any thought to the "unconscious anxiety"? I wouldn't even know how to deal with that. I don't want to be this person - I just want my life back.

Now I sound like a crazy lady.

Blessedinky: I know what you mean - by the end of the day I'm just "done" with it all.

I haven't been a religious lady...but I'm praying to God everyday to guide me through this horrible nightmare. I'm going to fight this with everything I've got...and rise above. I have a very loving, supportive husband who is behind me 100% so that's a plus!

I apologize for being so needy...hopefully one day I can be strong and be more supportive on the forum....

Girlie
Posted 5/9/2014 11:15 PM (GMT 0)
yup-the same. Mine started in Left shoulder blade! And still, even though my entire body hurts, that is the worse joint. I find a heating pad helps with the pain. Get one if you don't have it. I'd put it on my

shoulder and back. Everything is still mostly Left sided for me. This is not unconscious anxiety. I did not have any traumatizing event that led up to the pain. So, ask yourself that. I looked it up and the

symptoms seem mild. Which is far from what I'm experiencing. No way. I'm not a doc, but what you are describing is a physical condition. Not mentally induced. It's ok to have a good cry. It's probably healthy.

But just know that you must be your own advocate. And you gotta get a mindset of beating whatever is going on. I did visit my homeopathic Dr. today and we spoke about emotions. Our emotions/thoughts do

have the power to physically impact us. I do notice the days that I am with my friends and not focusing on my symptoms, I do feel better. When I am alone and worried, it does impact me. So just know that

you aren't crazy or unique in your pain. We all have it, just different forms. I have felt many times that I would just die one day. But I'm still here! And I've been with this crap for 6 years. I really have the faith

and hope that I will be better with treatment. Don't apologize about your emotions. That's where you are at the moment and that's ok! The people here are really awesome. I hope you get an answer soon. We are in the same boat. I gotta get tested again. The waiting is a killer! :)
Posted 5/10/2014 12:40 AM (GMT 0)
OMG Leilex -Your symptoms - are so much like mine. Originally, I never thought that my "injury" was even part of what else was going on. Regarding a traumatic event - I thought it was the injury - but I've been thinking that maybe that was the start of the Lyme disease symptoms. You're right - when I'm distracted and with a group of people...sometimes the symptoms are barely there...I guess two things going on - distraction and maybe endorphins are released because we're having fun. If it was anxiety caused - then why would there be soooo many symptoms - even bizarre ones? Like the tingling on my head, and the pressure behind my eyes, and being off-balance, and the vibrations throughout my body, and so on. So six years for you - how much improvement in the six years have you had? Are you able to work? (don't answer if it's too personal) because I am hoping I will be able to work part time once treatment starts...because we can't afford this. I am waiting for the free Lyme test to come back (I'm in Canada) - but apparently, they're unreliable...so if it comes back negative i will be going to a ND and sending sample to IGenex. Are you getting tested for the co-infections, too? I will just do Lyme because it's too expensive for me...and then I can start treatment...and then maybe once i feel a bit better, do another test for Babesiosis.

Thank you for your replies....they mean so much to me as I fumble through this.
Posted 5/10/2014 1:09 AM (GMT 0)
A lot alike! One of my first ER visits was for extreme shoulder pain. Yeah, anxiety does not cause these insane symptoms. I have only gotten worse. Much worse. My current Dx is Lupus but my blood tests/symptoms do not support it and I stumbled upon Lyme this year. I applied for disability last year. I

hope to get approved this year. I'm with you, we can't afford this either. but, There is no way I can work
:( I'm getting blood drawn next week for Igenex. Follow up with them if you get a neg for sure. Can't wait for the results. I actually have a Psychology degree. So, I would love to start working. I miss it. We'll

get better! Have hope and Pray. I was reminded that God will not just leave me here at this point. He is faithful to bring me through the valley. I so believe it. I've received answers to my prayers and He keeps sending me signs. There are no coincidences!
Posted 5/10/2014 1:29 AM (GMT 0)
Mine all started with an ER visit too - for my shoulder blade pain - excruciating - worse than labour pains...I was on all 4's. But, I did get some improvement over about 5 months, then the p--p hit the fan and I've gone down hill since. My Dr. hasn't diagnosed me - tests for the autoimmune - Lupus, Sjogren's, Sclerdoma - all negative and no inflamation in my body - hemoglobin good. I paid for an MRI of my brain to see if I had MS. It's a real head trip going through all this. Prior to this - healthy as a horse and happy with life. My husband has a Psych degree, too. I want to get back to work because my son has moved out and I need something outside of the home...but I just can't until I get somewhat better...even 20% better. I have never been religious, but now i pray everyday...my husband keeps reminding me I'm strong and we'll beat this thing. He said to me yesterday, "you gotta get better - you're my soul mate and if you go down, I'll be going down with you". His world is upside down too. He is working overtime to try to make ends meet for us. I have a question - you have two positive bands - doesn't that mean you have Lyme disease?
I am going to include you in my prayer tonight, Leilex.
Yes - we will both get well and have a life again!!!
Posted 5/10/2014 2:56 AM (GMT 0)
Ah, Girlie, Thanks for the prayer! I just said one for you ;) I did a brain MRI too. hehe. Oh, the stories we could tell. Well, that sounds like me. I'm holding my results right now and, dang, I look good on paper!
"But, You look great!" I know, but I feel like s**t. Oh well...

I hear you on the needing to do something. I have two under 11 years old. So they keep me busy. But, I'd like them to know the real me, not the mom that seems lazy and weak.

Your hubby sounds sweet. Mine is the same, thank God! He's very encouraging and is laid back, so he's actually appreciating the downtime! Hopefully, you'll get back to your normal and start contributing monetarily to the home. It'll happen.

The two bands. I don't get it. My LLMD said it's not proof enough. The bands are not specific enough for Lyme. From what I understand, they are "supporting" bands. I'm gonna do Igenex. Fingers crossed!!!
Posted 5/10/2014 3:19 AM (GMT 0)
Thank you for the prayer :-)

Let me know what happens with your Igenex testing. I see my doctor on Monday - for the results of the "free" testing. If negative, I will definitely going to a ND and paying for the Igenex testing.

Being from Canada - it's going to be tough to be treated - my only hope is that I am positive....I don't think I'll find anyone to treat based on clinical diagnosis without a positive blood test. But - one step at a time.

Sending healing thoughts your way!!!
Posted 5/10/2014 4:17 AM (GMT 0)
Yes! I'll post my results. You should post yours too. I hope the answer is clear for you. And, you're right, One step at a time. Oh, you should enable your email so others can email you. (If you want)

Thanks, You take care of yourself! Start detoxing and check out Ultimate Monolaurin and Cistus tea. My friend says these two things have helped her. Mostly the Monolaurin.

Blessings!
Posted 5/10/2014 5:41 AM (GMT 0)
I am going to get the natural fiber brush for the detoxing tomorrow, but haven't been able to find the Hydr. Peroxide food grade 3% yet here in our smallish city. Also will pay a visit to our local health food store for some organic lemons and start drinking lemon water all day. Along with my current vitamins, I will add an adrenal supplement to support my adrenals. After a week of that, I may try something natural while i await results to kill lyme...but I'll need to do some more reading - i was thinking of Cat's Claw...but maybe that's not the right one. I will read about Monolaurin, also.
I'm not sure how to enable my email...I'll look around and see....lol...I'm a rookie at this.

Keep me posted...and I'll do the same.
:-)
Posted 5/10/2014 11:32 AM (GMT 0)
Hi Girlie,

Sorry to hear you are going through this. I like you was in my early 50's when this all began. I was fit and strong and also looked much younger. I felt like I started to fall apart and I did not know why. I was sent for a battery of tests for my heart, ms, migraines, seizures, etc. Everything came back fine. My doctor told me that everything I had (chest pain, extreme fatigue and weakness, near fainting several times, shortness of breath, dizziness) was related to peri-menopause. His final words were...get this..."You should embrace this time of your life". I was flabbergasted. I then went to see a specialist in women's health just to prove that it was not "just peri-menopause". I was right. She told me my symptoms were not peri-menopause related.

Gradually I kept getting more and more symptoms...pressure in my head, eye pain, eye floaters, muscles pain, some joint pain, creeks and cracks in my neck, weight loss, chills. I was wondering how someone like me who has been heath conscious and who exercised her whole life could have so many different things wrong with them all of a sudden! I didn't think it was possible to be falling apart so quickly at my age.

Then someone came to my aid and sent me on the right path. I went to see a LLND and it was confirmed that I had Lyme. This was a clinical diagnosis based on my symptoms as my Igenix test came back inconclusive. Now I understood that it wasn't 20 different things wrong with me - it was Lyme and co-infections. That part made me feel better in a way. Now it made more sense.

So, wishing you the best and saying prayers for you. I really hope you can find someone who can help you. PS...I am in Canada too, but not close to you.
Posted 5/10/2014 5:09 PM (GMT 0)
Thank you for your post Summersun. How was your road to recovery - are you improving?

I had the creaks and cracks in my back - you can't fake that...

I don't know what else it could be - like you said it has to be one thing encompassing all of it. What are the odds that we have 3 or 4 different ailments?

Hope my lab work results are in Monday...I'm expecting negative - and then will go thru Igenex.

Girlie
Posted 5/10/2014 6:38 PM (GMT 0)
Girlie - I am improving a little bit, thank you. My improvements would be minor to a healthy person, but to me they have made quite a difference in my life. I am able to drive myself to my own appointments - at one time I was not able to. I am able to go to a the store and pick up a few things. I can now make dinner without totally falling apart afterwards. I am more lively in conversations with people. My sleep has improved somewhat too. I still tire easily and have a long way to go, but this upswing has given me hope.

Good luck with your lab results Monday. Please let us know how it goes.

It's all very overwhelming, especially at the beginning, but I know I can beat this and I am sure you can too.
Posted 5/10/2014 7:12 PM (GMT 0)
The only thing that would make me think it may not be Lyme - is that I'm not totally fatigued. I rarely get sleepy. Unless fatigue and sleepy tired are different? I do lack motivation and I guess the energy to do things...so maybe that is fatigue?
It really bugs me that the doctors don't see the weight loss as crucial in my diagnosis. I wasn't heavy to begin with. I went from 138 lbs to 125 lbs in less than two months. I still look pretty good, but the fact that I can't gain weight - even tho I'm trying is scary. At 51 - it usually isn't difficult to gain weight! I managed to get back up to 128 lbs...which I decided to be happy with...as I hate having this focus on food all the time. But, then I had surgery two weeks ago...and I ended up back down to 125.5 lbs. It was just one day I couldn't eat! I used to be able to nap during the day when I was healthy if I needed a refresher if we were going out for the evening...and now I just lay there..."buzzing/vibrating" then the chills start (or is it adrenaline?) and then I just give up. My doctor agreed a couple months ago to give me a prescription of Doxy for three weeks - and I know it wasn't long enough...but I did see some improvement for about 4 days before i finished it....
By the way - how long have you been unwell? And are you diagnosed? (If you don't want to answer, that's okay)
Girlie
Posted 5/11/2014 12:37 AM (GMT 0)
My understanding is that not everyone experiences the same level of fatigue. I would say that you are experiencing some fatigue if you are lacking in energy. I often tell people I have "no energy" which seems to express the way I am feeling better than the word "fatigue", if that makes any sense.

I lost weight too - about 20 lbs. I am now only 110 lbs. I feel like a stick - not feminine at all. I eat all the time, but cannot gain weight.

I also get that buzzing, vibrating feeling at times. Thankfully, it hasn't been as bad lately. The more tired I am the worse it gets.

I have been really sick for 2 years now. My test came back inconclusive but I have a clinical diagnosis of LD.
Posted 5/11/2014 3:03 PM (GMT 0)
Hi Girlie and Summmersun. I am also in Canada. My first symptom was right shoulder pain, then it spread to my right hip, and then most joints. I had creaking and popping of all my joints. I had no appetite and lost weight when I first got sick. I had insomnia, so I was always tired. I had a lack of motivation and needed a nap after lunch. Most of my symptoms have improved, except I am still having a lot of eye issues, and still often tire easily. Just wondering where in Canada you live Summersun? My testing in Canada was negative but I have a clinical diagnosis from a Chinese medicine doctor in Alberta and I am doing a modified Cowden protocol. I have seen a lot of improvement since I started the protocol in Dec. Private message me if you want more info.
Posted 5/11/2014 5:09 PM (GMT 0)
Hello fellow Canadians! We're sure gonna have to fight real hard to beat it - since the Docs have their heads in the sand about Lyme disease here. But, I am determined....and I have a husband who has my back, too.
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