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Posted 2/5/2016 7:26 PM (GMT 0)
I am almost at the end of my rope, I get up every morning telling myself I will feel better I will beat this, I have been sick for a steady 7 years of living in a painful dream. Every night I just think of how much I want to give up and just die already. I have had Mri's done ct scans done countless blood work and everytime they say stop complaining you are healthy. Other than my genetic condition and my tsh that bounces from 1.1 to 4.8 and they say it's normal. I have tried Cowden protocol tried a natural path in Calgary and nothing seems to help my fatigue, pain, heat intolerance, foggy mind, constant tired and drained, numbness, and tingling. There is more symptoms just can't think for the life of me anymore.

I have tried eating healthy and right, but trying to figure out what's safe to eat and what's not is too much for my brain to comprehend. I haven't worked in 10 months because of the pain and fatigue and I feel awful because I want to do so much just my body holds me back and it stresses me out because I have so many people relying on me.

I honestly want someone to tell me it's ok that I feel this way and that I just want my life over with already, I wake up at night and start crying next to my fiancé yelling I want to die already from this never ending torture.

I take frequent Epsom salt baths my fiancé makes for me but the heat is too much and I pass out frequently in it, also get really light headed and dizzy in showers. I mention all this to my doctor and I keep getting brushed off the, we don't have Lyme here in Canada. Even though I go to long is,and New York 2 months out of every year my grandpa lives in the hamptons, well north haven sag harbor and his backyard is open to a lot of deer.

I am getting so frustrated by the doctors refusing help and unable to find help. I spent a small fortune in New York last summer removing all my Mercury fillings and seeing a Lyme neuro, Lyme neuro asked me like 3000 questions and was like yup you have Lyme everywhere. So I respond with how can I treat it he said at this point IV line for 3 months for 45k dollars a month, I asked if he could speak to my Canadian doctor about it he agreed, but my doctor here in Canada refused to talk to him.

Also I am thinking even if I spent all that money and it doesn't work, that is less for me to leave for my family. I don't have much money anymore and that would make me broke. Honestly I'd rather just leave it all and die at this point. The next thing you read is something I have left in my notepad for some time with my igenex results and would like input on it also please and thank you for reading.

I need help figuring this out, I have felt fatigued and crappy for about 7 years now, 2 years ago i was diagnosed with a complicated gene defect etc which could explain some symptoms but I got treatment and no change in how I feel, I am foggy, tired every moment of every day no matter how much I sleep. My muscles ache so much I have a hard time working and when I do I feel pins and needles. I can't think straight my mood is up and down, anywho here is my Igenex results and if anyone could shed some light on this it would mean a lot to me.

IFA, B Burgdorferi 40 (<40 Negative 40 Equivocal = >80 Positive)

Lyme IgM Western blot
Positive
18 +
23-25 +
28 -
30 +
31 -
34 -
39 ++
41 IND
45 -
58 -
66 -
83-93 -

Lyme IgG Western blow
Negative
18 -
23-25 -
28 +
30 -
31 IND
34 -
39 IND
41 ++
45 -
58 -
66 -
83-93 -

CD57 NK Cells Absolute CT 44
<40 Low
40-98 Borderline
>98 Normal

CD57 NK cells % Lympho 1.52
<2.26 Low
2.26-4.65 Borderline
>4.65 Normal

These cd57 scores really freak me out.

But my other question is, if I have felt this way for like 7 years now why is the Igg negative?
Posted 2/5/2016 8:23 PM (GMT 0)
Sandor: Welcome to our forum and I'm sure you will find lots of great information here to help you with your illness. I am so sorry for all of the pain, grief and frustration you are experiencing. You are not alone! I, as well as some other forum members live in Canada also and we have gone through the many tests and dr's to figure out what is wrong. Unfortunately because mainstream doctors do not accept Lyme as a real illness, you must see a Lyme naturopath or Lyme md in order to get proper treatment. You mentioned you did Cowden, was that through a Lyme naturopath? Buhner is a popular herbal protocol that many people find success with, maybe you can look into that?

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

If Epsom salt baths do not work for you, maybe you can try a foot bath instead and see how that works? The above link has lots more other detoxing options.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send Traveler an email by clicking on her screen name or the small blue envelope under her screen name. She may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and she will be happy to share the names that she has.


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php

Someone will be along to help you with the test questions. Just know that even with a negative test, if you have symptoms, you can still be diagnosed with Lyme. A LLMD or LLND would do a clinical diagnosis.
Posted 2/6/2016 12:46 AM (GMT 0)
Welcome to our community, Sandor! I am a fellow Canadian - from B.C. and am being treated here in BC.

I quickly scanned over your post - I will re-read it after I post this.

With those test results, you are CDC Positive for Lyme.

So, you mentioned Calgary - do you live in Alberta? - You also mentioned going to New York...so wondering if maybe you live in Ontario?

I will re-read your post now...but you can get help here in Canada...if you want to stay in the country.
Posted 2/6/2016 12:56 AM (GMT 0)
When you take epsom salt baths - the water should be warm...not hot...so try that instead...and start out only staying in for 5 minutes.

Don't worry about the negative IgG - it doesn't matter. You have a positive IgM Igenex AND CDC positive. You have lyme disease...

Lyme disease exists everywhere in Canada...

It is alright for you to feel helpless, and frustrated with it all...you are sick and have been ignored far too long. I am so very sorry for all your suffering...

I cried everyday for several months - it does get better with treatment...so you hang in there...we're going to help you...okay?
Posted 2/6/2016 1:01 AM (GMT 0)
Yep, you have lyme. I am so very sorry.

The part about not being able to take a hot or warm bath really hit home to me. I cannot do anything hot. I get lightheaded and feel like I could pass out. I found that when my head hurts a cold compress feels awesome. Actually any place on me that hurts is relieved with cold.
Posted 2/6/2016 1:01 AM (GMT 0)
I see a Dr. in Richmond, B.C. who is licensed to prescribe antibiotics. If you live in Alberta, it would be one trip there...and after that he will do Skype or phone appointments.

There are other options, as well...

How were you being treated in Calgary by the ND? Was he/she lyme literate...and was it an herbal protocol you were on?
Did you stick with it long enough? Sometimes it takes a few months before we see improvements - especially if we've been sick for several years...
Posted 2/6/2016 1:02 AM (GMT 0)
Welcome Sandor!

Sorry for the reason you're here but glad you found us.

You've been given great information already.

The most likely reason you didn't test positive for IgG is due to the immune-altering effects of the Lyme bacteria.

Your presentation is quite common for someone with chronic Lyme:

lymemd.blogspot.com/2009/12/igm-question-is-it-chronic-lyme-disease.html

Hope you can make an appointment with a Lyme-literate doctor because you will clearly benefit from treatment.

While you wait, I suggest that you get started on a detoxing protocol as described in our "New to Lyme" thread as well as the link already shared.

It will help clear the toxins already in your body that have accumulated over the years you've had Lyme. Treatment will create more toxins so the sooner you get ahead of them, the better.

Please visit often. We have a wonderful community of caring members and the collective knowledge is incredible.
Posted 2/6/2016 4:50 AM (GMT 0)
Wow try all for your kind words and assurance. I wasn't sure if I had Lyme for sure or it was in my head, being told repeatedly that I don't made it feel as if I was going mental.

Long story short there is a Lyme here in Calgary I was referred to see him, I called asked when my appointment was they said 17 months 56th in line. I said ok called back 5 months later for a check in or see if cancellations, they told me I was now on the 3 year wait 91 ahead me. So I argued and said its not fair and they responded with what makes you so important or sick, had my fiancé talk to them now they took me off the list and refuse to see me.

I saw someone that specializes in Lyme natural path doctor for around 9 months straight but like I said earlier my brain does not function at all and kept forgetting how to eat and what not to eat, so I saw no change and at 800 a month i no longer could afford.

I would gladly go to be or wherever in Canada for a really good ll days that would see me.

Again thank you all for checking my blood work what do you guys think of the cd57 cell test?
Posted 2/6/2016 7:19 AM (GMT 0)
CD57 NK cells % Lympho 1.52
<2.26 Low
2.26-4.65 Borderline
>4.65 Normal

--------------------------

I don't know a lot about the CD57 Natural Killer cells - but people with chronic lyme often have low CD57 .

Some LLMD's monitor a patient's progress with CD57 testing. The CD57 number is supposed to rise, as the patient gets closer to remission.
It has been found to be an unreliable test...so I don't know if many LLMD's are using it anymore.

My LLND did not test my CD57 NK cells count.
Posted 2/6/2016 7:32 AM (GMT 0)
If you'd like to email me - just click on the blue envelope under my name.
If you would share who you were seeing (ND) in Calgary...and I will send you information on other LL Dr.'s in Alberta via emails.

Also, let me know if you are wanting to go the antibiotic route..in which case you may want to travel to B.C. for an initial consult. (I can't remember if ND's in Alberta are able to prescribe antibiotics)

In the meantime....think about and start detoxing - in addition to the epsom salt baths...there are lots of other ways.
It's best to do multiple methods of detoxing.

I do epsom salt baths - minimum 4 days per week....
I dry brush my skin before the baths
I do light exercise - minimum every other day
I take Alka Seltzer gold - usually when i'm herxing
I take Nutramedix Pinella and Burbur - daily
I drink lots of water - and squeeze fresh lemon juice into some of the glasses. (be careful - it can damage your tooth enamel - I drink with a straw...and then rinse my mouth with clear water after my glass of lemon water)
I take a homeopathic liver support
I take activated charcoal

Here is a link to more detox ideas:

www.tiredoflyme.com/detox-methods.html
Posted 2/7/2016 12:02 AM (GMT 0)
Was also curious by those bands if it looks like any co infections?

Not sure if my email works on here just set it up last night can you email me?

Anyone ever feel hopeless and just want everything to be over with? A few times I've almost wanted to admit myself, but I know they wouldn't take the Lyme seriously and not sure what would happen and I think it would cause me a lot more stress and aggravation tbh.

Post Edited By Moderator (Girlie) : 2/6/2016 5:27:11 PM (GMT-7)

Posted 2/7/2016 12:30 AM (GMT 0)
The Western Blot is only for Lyme, not the co-infections.
You would need to do other tests for Babesia and Bartonella...but those tests are even more unreliable than the Lyme testing.
Many LL Dr.'s diagnose the co's clinically.

I edited your post just to remove your email address.
Your email is working. And we don't post the email addresses on the forum...it will attract spam.
So, to email you, a forum member just needs to click on the blue envelope. Only forum members have access to it.

Admit yourself where...to the hospital?....they would most likely not accept lyme as a diagnosis...so you wouldn't get help there...in fact, they'd probably say you were fine and discharge the same day...it's crazy.

Hang in there...and keep coming here for support...ask questions...vent...
Posted 2/7/2016 12:35 AM (GMT 0)
Ya sorry about that I did receive your emails, I'm just new to this iPad and it didn't show up in my hotmail weird but showed in my iCloud mail.
Posted 2/7/2016 7:41 AM (GMT 0)
I have had the same problems since Oct. 2010. I would like to talk to you more about our condition. I am 47 yrs. old, have had lyme disease all my life just symptoms did not become more evident til 2010. I also have Hashimoto, a thyroid condition. Along with excessive allergies to food, pollens, and some pets. I totally understand what you are going through. I have found a very good doctor here in Michigan, USA.

Post Edited By Moderator (cd3764) : 2/7/2016 5:37:18 AM (GMT-7)

Posted 2/7/2016 12:41 PM (GMT 0)
Welcome jtiny410!

Sorry for the reason you're here but glad you found us. We have a wonderful group of caring people on this forum and the collective knowledge is incredible.

Even though you're not new to Lyme, I hope you take a peek at our "New to Lyme? Start Here!" thread that sits at the top of the forum. You could very well find information that is new to you.

And, please understand that I had to edit your post for 2 reasons. Firstly, forum rules prevent the posting of treating doctors' names/contact info for privacy reasons. And, secondly, we don't allow posting of personal email address in the open forum to prevent members from getting spammed.

Instead, if you'd like to email with people, you'll need to enable your email option via your profile.

To enable:
Click on My Profile
Click on Edit Profile
Click on show my email
Click Submit

Looking forward to hearing from you more!
Posted 2/7/2016 8:23 PM (GMT 0)
Hi jtiny410 - welcome to our community!

Hope you continue to read, post...and please feel free to ask any questions that you may have...this is a great group of people here...lots of support, and knowledge.
Posted 2/8/2016 7:52 AM (GMT 0)
Today I am having a really bad day, not sure what it is but have such intense pain in my wrists and fingers also really angry and just want to run into the highway...

A couple days ago I went for a 45min long infrared sauna, first time. I didn't sweat at all and I was hot as hell in there. Also had an Epsom salt bath last night and today just headache and feel awful and really can't take much of this.

I am calling that clinic you talked to me about tomorrow but another thing worries me is the cost, I have not been working these last 10 months because of my condition and I own a house so it is like do I push myself to try and work and feel worse or just mortgage my home to take money out and use it to try and get better, all of this is making me so stressed out, why can't this just end.
Posted 2/8/2016 8:40 AM (GMT 0)
I'm sorry you are having a rough time,Sandor.

If you're not sweating...i don't know if it's safe to be in a sauna...

Was the epsom salt bath warm...not hot? If it's too hot, it can make you feel worse.

I know what you mean about the finances. I had to leave me job...I was in too much agony...I couldn't even handle the housework at home...
I, too have a lot of pain ....not bad fatigue...but pain.

It's better if we can reduce the stress in our lives, and get the rest we need while fighting these infections...but I don't want to tell you to remortgage your home...you will have to make that decision.
The way I look at it...I need to do what it takes for me to get better...and I will 'catch up' with the finances once I am better.
But, having said that...there are people who have to work..they don't have any other options.

Is it possible you can go to part time...so it's not as much of a financial strain?

Do you have some questions written down that you want to ask when you call the clinic?

I have had many really bad days...but it does get better...hang in there...you will be starting treatment soon.
And, remember...if this clinic isn't a good 'fit'...there are more options for you. There are quite a few LLND's in BC. My cousin is happy with her LLND in Vernon, and there are a few in the Vancouver area.
Posted 2/8/2016 8:41 AM (GMT 0)
Please feel free to email me anytime...
Posted 2/8/2016 7:38 PM (GMT 0)
Hi Sandor,

I am so sorry you are going through such a terrible time. Please hang in there. It will get better.

In regards to spending 45 minutes in the sauna and not sweating I have two points to make. Firstly, for some of us, it takes a while to start sweating. It will come in time if you keep using the sauna. Secondly, 45 minutes is a really long time to be in a sauna in your condition. I think you were herxing from that. When I started the sauna I started at 20 minutes and that was too much for me. I ended up doing 5 minutes at a time and working my way up. It's like everything else with Lyme - start low and slow and work your way up.
Posted 2/9/2016 12:57 AM (GMT 0)
Hey Summersun thanks for the reply, my fiancé for Christmas got me this coupon thing for a beauty salon thing they do massages sauna uh some steam bed thing and other stuff, it was for 45 min and don't think I could split it to shorter time it was like 35 dollars or something.
Ya last night was awful, fiancé said I kept waking her up shaking the bed had some weird stuff flipping through my head was in a world of pain also.
Posted 2/12/2016 10:53 PM (GMT 0)
So I was thinking, when I was on doxy last year and I had the severe numbness and pain in my fingers wrist hand, legs, and my chest. Along with headaches and overall crappy feeling, was that the lyme die off or the doxy reaction? I never actually thought about it at the time because I figured it was the doxy.
Posted 2/12/2016 11:18 PM (GMT 0)
Sounds like a herx from the doxy killing the lyme. How long did you take the doxy?
Posted 2/12/2016 11:28 PM (GMT 0)
Originally I started with a month of uhhh amoxicillin basic low dose for a month, then he had me on just rifampin low dose for a month, then he had me on 100 mg x2 a day for doxy for 3 weeks till I pushed him up to 200 x2 a day for an additional 5 weeks after that.
Posted 2/12/2016 11:32 PM (GMT 0)
Yes, it does sound like a herx.

Detoxing will help with that....
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