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Posted 2/19/2011 10:48 PM (GMT 0)
Hello, I have been feeling unwell for almost 8 years now and things are getting to the point where I feel like I am dying. I do not know what is going on with me, so I am posting with the hopes that someone will recognize some of my symptoms and possibly identify what I might be going through. I am desperate and appreciate any and all comments.

In the beginning when this whole thing started I was having problems sleeping at night and spent most of the days in a complete fog and almost disoriented from the lack of sleep I believe. I was put on Ativan for a week to relax me and help me sleep. After I caught up on my sleep I remember still experiencing the daily brain fog and spaced out feeling all the time. Felt as though my eyes would just wonder off in a daze.

In February of 2010 things started to get worse for me. I got really dizzy for about 2 months straight… felt really funny… the floor even felt like it was moving when I walked. I went to the hospital a couple of times and they said it was Eustachian Tube Dysfunction and Allergies. I ended up going to a Chiropractor who adjusted my neck. I know that didn’t help immediately but the constant dizziness finally went away, however I all of a sudden started developing a huge number of floaters. I have never had a floater before ever but over the last year they have multiplied a lot. They are all of the transparent kind which I can see in great detail. I see the individual cells that make up the body of the floater, I can’t even count how many I see because it’s like a cob-web of them. I do notice a ton more when I squint my eyes looking out at the sky as well as wavy lines. In March I got another Sinus cold and developed tinnitus which was in one ear. This has gotten worse and I can’t say that it’s in any ear… it sounds just like a buzzing noise somewhere in my head.

Here’s a list of symptoms that I am experiencing on a daily basis now

• Dizzy, wozziness, off balance feeling
• Feeling spaced out all the time, like my eyes are in a daze
• Concentration is terrible, brain fog all the time
• Feeling of pressure in my head
• Eyes feel unfocused
• Eye floaters
• Eye pain (they feel strained and tension like headache across my forehead and into temple area)
• Light sensitivity
• After images (especially when reading off a computer screen… if I look away I will see the text faintly on the wall for example)
• Tinnitus
• Dull ear ache feeling off and on
• Ears sometimes feel like they need to pop
• No energy at all, feeling fatigued all the time, yawning all day long
• Very gassy, mainly burping, and heart palpatations… even if I just drink water
• Feeling very cold
• Muscle Twitching

Not sure if these are related or not

• Chronic nasal stuffiness, always clearing my throat
• Chronic stomache problems, inflamed, feeling nauseated all the time, tender when I push on it

Other symptoms which aren’t always present

• Headaches at base of skull which I believed to be Occipital Neuralgia (was getting these daily but now only get them maybe once a week)
• Muscles feel weak and heavy, legs feel jelley like
• When walking I sometimes feel resistance as if someone is pushing downward on my head
• I developed a twitch in my right eyelid which lasted 24/7 for 2 months
• Have had 5 or 6 sinus colds in the last year
• When I use an elevator now and get off I still feel like I am moving for a couple of minutes
• general numbness feeling in my body

I have had a Lyme test done which was negative... I have no idea which Lab it was tested at. I am in Canada so maybe someone here would know.

I would like to point out that the vision issues, dizziness, spaced out feelings get 10x worse when I am in a public place with bright lighting, turning my head a lot or any kind of exercise… even simple chores.

I am scheduled to see a Neurologist who I am praying will finally be able to put an end to this.

I know most people will say to stop worrying about things so much but the truth is I’m not really worried… I feel more relaxed now than I have the last 8 years of my life… however I can tell there is physically something wrong with my body and can feel myself slowly fading away. I know there is something wrong that hasn’t been identified yet. If I have to live with this stuff the rest of my life then I can deal with it, I just want to know what’s going on. If anyone has any comments please let me know. I feel like I am slowly dying.

Does any of this sound like it could be Lyme?


Thanks in advance.

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Posted 2/19/2011 11:17 PM (GMT 0)
Make sure the Neurologist checks you for Arnold Chiari Malformation - this affects the brain and can cause a lot of the symptoms relating to your head that you have mentioned.

I also think your symptoms are consistant with Lyme, and that you would probably be better off if you found a Lyme-Literate MD for proper testing and diagnosis. The reason I mentioned the Arnold Chiari thing is because that is something that needs to be ruled out when someone has a predominance of head/brain symptoms. And it is possible to have both, so it is something to be ruled out.

One website to check out would be http://www.canlyme.com/ - they have a wealth of great info there and you can contact them to ask for a referral for a good Lyme-Literate MD.

I also think you should check out the thread at the top of this forum for those new to Lyme - there is a lot of good basic info there that may prove useful and helpful for you.

Take care,
Posted 2/20/2011 1:19 AM (GMT 0)
Hi Razzle,

thank-you for your response. I have had an MRI done and it didn't show any issues... would that identify Arnold Chiari Malformation? I know my GP probably won't discuss Lyme with me further because of the negative results that came back and in Canada we can't see a doctor without a referral. I may have to go to the US and pay possibly.

thanks again.
Posted 2/20/2011 3:26 AM (GMT 0)
Did you in fact have a western blot test or just an elisa? if you had a western blot, did you get a copy of it. The reason I am asking is the test can itself be negative but the banding may indicate that you have lyme. First thing to do is to obtain copies of all of your labwork. Then post the results here. Have you been on any antibiotics at all? Have you tried detoxing? Detoxing is extremely important with lyme and can help you feel a little better. Stay with us at this site and you will get a wealth of information. It does sound like you could very possibly have lyme and you will find wonderful helpful people here. Welcome and let us know ok?
Posted 2/20/2011 5:36 AM (GMT 0)
When I was tested, the doctor wanted an MRI both with and without contrast. Do you remember if you had contrast when you had your MRI?

For more info about the different kinds of Chiari Malformation (Types I, II, & III), see http://www.csfinfo.org/

Take care,
Posted 2/20/2011 12:55 PM (GMT 0)
A negative test doesn't mean you can't have lyme. Your symptoms sound a lot like lyme but it is something you are going to have to continue to find out. I tested negative over a two year period. Twice with an elisa and my very first western blot only had one band so they told me I didn't have lyme and rather I was having "emotional issues" and should seek mental help. Well, I was having emotional issues because I was so far out of my mind from having lyme disease and being misdiagnosed and untreated. This went on for another year and by that time I was dying. I couldn't get out of bed, feed myself (I had lost a great deal of weight) and had I not found a lyme literate dr soon after I may not be here today. He diagnosed me over the phone on our first call and started me on treatment right away. 3 months later I went in to see him and had another western blot done. This time I had all the bands for lyme disease and all the strains of the bacteria. It was proof positive that I had lyme the entire time. The blood tests still aren't 100% so they are usually used as a backup and your symptoms are proof that something is going on. Keep on fighting for answers. I went to many dr's. When I was told many times that there was nothing wrong with me and to go outside and get fresh air. It ended up taking me 3 years and countless trips to the ER and Dr's to finally get my diagnosis and start treatment. Had I been treated years earlier I could have been saved many future years of suffering.

However, after a long treatment with abx I am not pretty much well. My only symptoms that remain are anxiety and headaches but I use exercise to combat those and it works wonders.

Hang in there and don't take no for an answer. If you have to come to the US or go find another Dr it is worth it to get your life back and to feel well again.
Posted 2/20/2011 8:14 PM (GMT 0)
You may also want to check into CCVSI. This is a condition where the mane arteries in the neck narrow. This can cause toxins to build up in the head causing fatigue, brain fog, dizziness and more. CCVSI is found in lyme patients and MS patients. You could ask to have this checked by your doctor.

Where in Canada do you live?
I have a friend that lives in Victoria, Canada and believes she has lyme disease. She is going to a Fibro/ Chronic fatigue center in Seattle for help. They treat lyme disease as well as many other health issues. She wasn't getting anywhere with Canadian doctors. I hope you find some help for your situation soon.
Posted 2/21/2011 3:14 AM (GMT 0)
Thanks for your reply. I live in Ontario Canada. I have had my neck arteries checked so I presume that would show what you suggested. I do appreciate your suggestion. It was about 8 years ago that I started not feeling right but I got by without thinking to much of anything because I spent most of that time sedated on ativan for my anxiety. It was just this past year that things relly started going down hill fast. I have had sinus and gastrointestinal issues as well as extreme fatigue getting worse all the time. Can a person have Lyme all that time and not have severe problems? Also, I never have swoen lymph nodes, no fever, and until recently no muscle or joint pain. Everything seems to be all neurological for me. Is Lyme still a possibility for me do you think?

Thanks to everone for your input. I really want to get my life back.
Posted 2/21/2011 3:19 AM (GMT 0)
Your symptoms sound like Lyme, but you need to be tested for all related type diseases as well. I have Lyme (paid for testing in US cause I couldn't even get tested here in Manitoba) and it came back positive. Fortunately I have a GP who is willing to take a chance (no names used) in prescribing different combos of antibiotics...I saw 17 specialists before I gave up and got tested. Now I'm on zithro, doxy and soon to be flagyl and feeling better, although not completely cured. The only reason I'm doing as well is my Dr. at least agreed to put me on doxy while I was being tested (and not having my Lyme taken seriously) by all the so-called experts. the only reason I even got in to see them was I have low platelets and that's something they can understand...if they'd been told I'd tested positive for lYME, they wouldn't have seen me...I know this from others. It's a nightmare here and now I'm going to the government to influence changes. This is rediculous! I suggest you get tested at Ingenex lab in California...I got mine through a Natural Science Dr.
Posted 2/27/2011 2:58 PM (GMT 0)
I received a copy of my Lyme test results from my doctor which I knew where negative but I can't really tell which lab it was done at. The test was done at a Public Health Laboratory in a nearby city.

Lyme IgG/IgM EIA - Non Reactive
Borrelia burgdorferi (Lyme Disease) - No serological evidence of infection.

So what does this mean for me now?
Posted 2/27/2011 6:05 PM (GMT 0)
Are there any numbers listed in your blood work?

I agree with the others - you should definitely be checked for Lyme & other tick-borne infections. A lot of us have had to be diagnosed clinically (by symptoms) because this infection can hide in the tissues, so that it is not detectable in the blood.

It seems as though you may be looking at a chronic infection that is similar to mine. I was first infected with RMSF (& maybe others) at the age of 5. Over the years, I have managed to collect most of the other tick-borne infections. I experienced a lot of 'health issues' as I grew up, but not much to actually cause great concern. This is one way these infections work, they can be very insidious. Don't let that fool you.

Once it's been determined tha tyou have tick-borne infections, you could treat yourself at home.

I hope this helps some!!
Trav.
Posted 3/10/2011 7:24 PM (GMT 0)
no, there are no numbers listed on my blood work form. Should there be?
Posted 3/11/2011 4:53 AM (GMT 0)
Hi JR,
You are not alone and I assure you, you are asking the right questions and have come to a good place for support. I too knew I would die before I received treatment. From the sounds of it you have not. Antibiotics may or may not be the beginning of what you need to do to get functional. It is almost most certainly not the only modality you will try to stay ahead of this illness. I have never tested positive for Lyme, but I know that I have a Lyme strain int system which can not yet be identified or some as yet to be identified bacterial illness which us very persistent.

Bottom line is you must get to a knowledgable Lyme literate doctor LLMD. You can find the closest one near you by just asking around on this site. Perhaps somebody has already pointed you in the right direction. You most definitely sound like a suffering Lyme patient needing help. I wish you the best and please let us know how you are doing going forward.
Posted 3/11/2011 7:57 AM (GMT 0)
JR, I had to post because I know exactly how you feel. Ive been sick for 9 years since I was 12 and have gotten so bad over the past 2 years and for the past year I really thought that I was dying, like I still sometimes think that I could die young. Ive had all of your symptoms at some point or another. The past 2 years have been horrible. I statrted developing stomach pain, nausea, lost 70 lbs. I had every stomach test there is and they all came back negative except for some blood work that tested posative for several but not all of the crohns disease markers, They didnt want to diagnose me with full on crohns disease because all of my other stomach tests were okay. So they diagnosed me with IBS from the Lyme disease with a ntiboitcs as a trigger. Both my LLMD and my gasrto doc agreed that my stomach symptoms were most likely from Lyme bacteria infecting my gut. Just like it can infect you brain or muscles or joints. That the Lyme bacteria was mimickingthe symptoms of Crohns disease. I should say that my LLMD is quite well know (not some quack) and I respect what he has to say and to me and my parents it makes sence seeing as how Lyme seems to mimick other diseases such as MS, CFS, and bells palsy, just to name a few. I just wanted to share that with you so you know that youre not alone.

It sure sounds like Lyme to me, especially if youve been tested for everything else and youve tested negative. Also, a negitive Lyme test doesnt really mean anything. The Lyme bacteria is very tricky and clever that way. Hopefully once you get on antibiotics you well start to improve even if you herx at first.

For me, the stomach issues are a real problem so I wanted to give you the names of the meds that I take for it so maybe you could talk with your doc about them and maybe be put on them.
-Zofran(for nausea, they give it to Chemo patients, I would probably throw up everyday if it wasnt for this)
-Nexium(for GERD or acid reflux)
-Domperidone(it is a compound for nausea. usually your gastro guy gives you a prescription and you take it to a pharmacy and they make it for you.)
Levsin(for the stomach pain and spasms)

Also, GAS X is good and this thing called "Complete Relief" you can get it online. it is a stong dose of peppermint oil in pill form. it is really good for the burping and gas pain. Just go to Syncom.net
Ginger tea is always good too. And taking a good probiotics has really helped. Flora Probiotics is a good brand you can get it at nutri-health.com. Also Allign is really good too you can get that in the drug store.
Also, Candida which is yeast overgrowth can give some of the symptoms of Lyme so you might want to ask your doc about that. They gave me Nystantin for it which is an antifungal which did help some.
I really hope that anything that Ive said can help you even if it is in some small way. If you need to talk or vent you can PM me or email me anytime. Take Care.
Posted 3/11/2011 1:43 PM (GMT 0)
Hi Jr,
First off, let me say - I don't know anything about trying to get medical care in Canada.

With that being said, here in the U.S. when we have the tests done for Lyme Disease, there are numbers that appear describing what 'bands' are reactive - ie. band 23, 39, 41 etc.

Although some docs are negligent at allowing the patient access to their own test results, usually just asking (or even insisting, if one has to) will motivate the doc to release these results to the patient.

These numbers will allow us to be able to help you interpret your test results to see if any bands were seen and if so which ones. There are few of these bands that are highly specific for Lyme Disease. For more info on this, please read the thread at the top of the forum titled, "new to Lyme?... Start here!". Scroll down to about the middle or lower half of that thread for that information.

If you can't get a positive test result, others that are from Canada are members here - maybe if you start a new thread with a title that will catch their eye will bring answers to what they are doing??? Just a thought.

I hope this helps a bit. Please feel free to ask any more question that you may have though!
Trav
Posted 3/11/2011 2:12 PM (GMT 0)
Thanks to everyone who responded, I really appreciate your advice and comments.

The blood test that I had done didn't have any numbers like what you are referring to. I did get a copy of it from my Dr. and it just said the following:

Lyme IgG/IgM EIA - Non Reactive
Borrelia burgdorferi (Lyme Disease) - No serological evidence of infection.

I like the suggestion about starting a new thread reaching out to other Canadians... thank-you for that.

Regarding my stomache problems, my doctor is convinced that it is my GERD that is causing all these other issues and he wants me to have the laparoscopic hernia surgery. I have seem him a couple of times trying to tell him that I think there is something else going on. Obviously this isn't going to effect my vision, but he thinks that I am chronically inflamed from it which is effecting my stomache, sinuses, ears, vision, and head symptoms. I have booked the surgery because I feel that if I don't have this done than I won't be able to go back to him for more help unless I try this. It's so hard to find a doctor in Canada and I can't imagine starting this all over again with a new doctor. I asked him if we could just try the Lyme treatment, since he has thrown every other pill at me but he said "I've had 4 Lyme patients and you don't have any Lyme symptoms". I feel so lost. I can't even get him to refer me to a LLMD. I need to get to one in the US I think this is the only way I will know.

I have seen myself go downhill so much over the last couple of years, and even at a faster rate over the last couple of months. I honestly can't see myself being around 6 months from now if someone doesn't figure out whats wrong with me.

Thanks again to everyone who responded... I really do appreciate it. :)
Posted 3/11/2011 3:04 PM (GMT 0)
Unfortunately, having only had 4 LD patients doesn't make any doc knowlegeable about this disease.

After going over the symptoms that you listed above for a 2nd time, you really do need to be checked & likely treated for LD. Some docs in the US will diagnose clinically - which is the way it's supposed to be done - even according to the US CDC.

Hang in there, Jr!!
Posted 3/13/2011 2:40 AM (GMT 0)
I believe you only had a lyme elisa test and not a western blot. Try and get a western blot test done. Not many doctors will order one based on a negative elisa though. Do not give up. Most lyme tests are negative. Seek out a lyme literate doctor or perhaps travel to one if you need to. You will be glad you did because if it is in fact lyme, you will not get better until you get the proper treatment. Keep researching and educating yourself about the lyme controversy, best treatments, etc. Although you don't feel well, you have to be your own medical advocate as this is a disease that there is not much known about by the medical profession.
Posted 3/16/2011 3:00 AM (GMT 0)
Jr991 just wanted to comment that your symptoms are really similar to mine, and I had Lyme for many years before it got real bad! I had food poisoning which caused my immune system to break down so that the Lyme got an upper hand.. And then.... Chapter 2 of my life began really. It's been so bad. Luckily I am a lot better now today and I want you to know that I felt like I was very close to dying also, but am feeling so much stronger now. So my conclusion; to me it sounds like this is def Lyme. I've had the ground move underneath me, and curtains move around, you name it.. The ground would move like water. I think you should explore the possibility of you having bartonella also. Oh, and for the record- I've had 6 positive results and 2 negative. It's just not reliable. Go see a proper Lyme doc that measures CD57. And also, google "supergreens - by innerlight" drinking this every day has wonderful benefits for your body! Has helped me a lot!! Drink plenty of bottled water! You need to do everything good for your body! Xx
Posted 3/22/2011 6:11 PM (GMT 0)
Thanks again for everyones responses. I am leaning towards a visit to the US to consult with a LLMD. When I call around should I be asking if they use the Igenex lab. Also, would it be inappropriate to ask if the diagnose clinically as well? It's going to cost me a lot of money to travel and see the Dr. so I want to be sure i'm getting the most out of my money.

thanks again.
Posted 3/25/2011 2:32 PM (GMT 0)
I have a questions regarding my Lyme test. I posted the results above but here they are again:

Lyme IgG/IgM EIA - Non Reactive
Borrelia burgdorferi (Lyme Disease) - No serological evidence of infection.

My question is, I was under the impression that in Canada we don't do a western blot test, but I thought the IgG/IgM indicated western blot? Also, there is no reference to band numbers... is this because all were non reactive, or if should there still be a list of band numbers?

I'm just confused about these results... maybe this was an accurate test? Am I still better off to get a test done through the Igenix lab?

Thanks
Posted 3/25/2011 3:42 PM (GMT 0)
Hi JR,
"Lyme IgG/IgM EIA - Non Reactive"
Notice the "EIA" in the middle of this? I believe - someone please correct me if I am!!!! - but I believe that means an ELISA test was done, not a Western Blot. I don't know much at all about the ELISA, but I don't think they give numbers.

Sometimes docs will use the ELISA as a screening tool before attempting to do the WB. Although, the US CDC states that all dx's should be clinical. ELISA & even the WB are not very accurate, as the infection must be currently active in your blood stream for these methods of testing to pick them up. A lot of patients who have chronic LD, don't test positive.

I hope this helps a bit!
Posted 3/25/2011 3:54 PM (GMT 0)
Thanks for your response.

I understand you may not be able to answer this for me but I have a concern that if I spend the money and travel to an LLMD in the US, they will do the test and if it comes back negative that will be it. I have been ill for several years now and if I do have LD I believe it would have to be chronic by now. I want to make sure that my LLMD will still consider it even if I do have a negative test result come back. Will most LLMDs diagnose based on symptoms? Does my concern make sense?

Thanks again.
Posted 3/25/2011 4:20 PM (GMT 0)
Your concern makes a whole lot of sense!!! I don't blame you a bit for being concerned, I would be!! I would be bold enough when calling to ask if the doc considers diagnosing clinically.

If not, I would consider that to be a sign that the doc doesn't really understand the rate of false negatives the current test produce & that doc possibly would be capable of treating you properly. I would actually find another doc to go to if that were the case - but that's just me. devil

Another suggest, if I may? Read through the thread at the top of the forum titled, "New to Lyme?" - there you will find instructions on how to detox. By starting now, you will have a head start on your healing. They are as easy as soaking in Epsom Salts & peroxide for up to 20 minutes!
Posted 3/25/2011 5:19 PM (GMT 0)
Thanks again! I actually have been calling around and when I ask about whether the Dr. considers a clinical diagnosis the receptionist usually doesn't know what I'm talking about. However, one place I called said they use the Igenex lab as well as a local lab for testing. Sounds like they are pretty good.

I will start doing the detox baths as suggested.
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