posted
Hello! I'll try my best to fit my whole story in here and not leave anything out, but its been a battle, and I might forget a few things.
My name is Austin, I live in southern Ontario, I'm 19 years old.
About 2 years ago, summer 2007, I went to alberta with my mom and my girlfriend at the time for a vacation. We were in the banff area, we took a lot of hikes I went horse back riding through the mountains and forest, it was a good time.
While in alberta I started to notice myself getting hot flashes, my face felt very warm, and i would get a foggy feeling in my head, my eyes would feel very heavy.
After the vacation we headed home and for like 3 months some days I would get this flushed heavy eyes feeling, I just felt out of it when I would get this. One day, I got this feeling, and it didn't really leave and I noticed I was VERY fatigued in my arms and in my legs.
I began to search stuff up, and convinced my self I had chronic fatigue syndrome.
Somehow I dealt with this for a year, but noticed whenever I would get sick with a sinus infection or strep throat, my fatigue would go away, at these times I would be on antibiotics, zithromax etc...
In the summer of 2008 I developed what I thought to be prostatitis, and ended up on cipro for about a month, and levaquin for another month after that.
My fatigue completely disappeared at this point and I was extremely happy to be rid of it, I thought it was gone for good.
But because of my steady run of unlucky things happening in my life, I had a very bad reaction to the Cipro and levaquin, that didn't show its self till a month after taking them, and I ended up with severe anxiety insomnia, leg pains, all related to the fluoroquinolone antibiotics and I can't stress enough to anyone out there to avoid these antibiotics like the plague.
Eventually the symptoms from the antibiotics abated and I was extremely lucky, because some people end up permanently screwed up from these drugs.
I had a great summer, I could actually be myself for once, hang out with friends without worrying about my health, go to parties and actually drink alcohol without it causing me to be very fatigued. It was just a really good summer.
jump to october, I'm working and I start getting the hot flash heavy eye feeling again and alas, the fatigue is back, and for some reason it just feels worse.
i began researching and here I find about lyme disease and it just kind of clicks, my main symptom really though is just fatigue and anxiety. I don't really have any pain, I do have clicking in joints and some muscle twitchs.
i've been tested for lyme in the past but it came back negative, surprise surprise!
My mom, and my GP don't believe that I have lyme disease, but my mom set up an appointment with a natruopathic doctor, and I just find it to be a crock of ****, pardon my french.
I want to find an LLMD but going to the states is out of the question, I heard of one in toronto, but I called and the guy is super expensive, somehow I have to convince my mom that I need to see this dude and for her to loan me the money. He also doesn't take patients that smoke. but i smoke, so I'm probably going to have to lie because I can't see myself quiting anytime soon.
I also find that a little silly to not accept someone as a patient because they smoke, yes I understand its extremely stupid and bad for you, but you're going to refuse me help because I smoke? just seems childish to me.
I don't know. I'm super stressed over this, I have some oil of oregano that i've been taking and it just seems to make me feel worse, I'm working at walmart right now to save up money for college, but whenever I go I just feel like the pits.
I want to just live life, be myself, have fun, and make something of myself, but I can't because of the way I feel day to day.
I'm disgusted with our health system here in canada and in the states and I'm disgusted by how those with lyme disease are treated.
I just don't know what to do.
any help would be much appreciated.
and thank you for reading all this, I know it was very long
Also, the LLMD in toronto I was talking about is DR. K, I ended up calling again to book an appointment but it turns out he isn't taking any new patients. FML. I'm suppose to call back in February and the receptionist said they would "know by then" or some crap.
God I hate my life
-Austin
-------------------- depressed Posts: 17 | From canada | Registered: Dec 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Austin, so sorry you're going through all this, especially with trying to find a doctor.
Yes, it certainly does sound like you have lyme and/or coinfections.
Have you tried posting over in Seeking a Doctor?
Someone over there should know of doctors close to you.
I agree that it's ridiculous for a doc not to treat you because you smoke--yes, it's not a wise decision, but...
I really hope you get the help you need. This disease is hell even for those of us getting treatment.
I can't imagine not being able to see a doctor for this.
Good luck, and welcome.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Welcome Austin.
So sorry you are dealing with these issues. Keep researching. Mybe post in seeking doctor page and hopefully there will be a Lyme literate doctor (llmd) in your area.
There are other herbal things you may find helpful. Others here know lots of that stuff.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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I think I got Lyme in the Banff/Kananaskis area too.
I'm in Alberta, so I don't have THAT much info about Ontario- but what I know is that there is ONE doctor in Ontario who treats Lyme. He only accepts in-province patients. There may also be someone in the maritimes, but I don't think so.
I know anyone in BC/AB/Saskatchewan has to go to the US.
I don't know the initial of the LLMD in your area, so I don't know if it's Dr. K. But I thought the guy in Ontario did not have a private clinic, and so would be covered by health care- BUT I don't know for sure.
Have you visited the Canadian Lyme Disease foundations website? (www.canlyme.com) They have a list of regional contacts, and if you email the person for Ontario, they should be able to give you better information.
Also- don't dismiss all naturopaths out of hand. yes- I've seen some who are terrible, but the only lyme-literate person in Alberta is a Naturopath. She is very, very good. If you contact canlyme, they might be able to guide you to a better naturopath.
Unfortunately, unless that doctor I am thinking of is covered by health care, it will be expensive to treat this. Not trying to get you further down- but as you said, the medical systems are screwed up when it comes to Lyme.
I just got Lyme 2.5 years ago when I was 18 (only found out it was Lyme 4 months ago). I was the one who go myself diagnosed, and I had to convince my parents that Lyme existed and I had it. So if you want someone to talk to, feel free to PM me.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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thats amazing! I too was in kananaskis This is where I was hiking, I stayed at a hotel there as well.
Really crazy that we both got it in the same area, around the same time, and are close to each others age. ahhaa.
I think the doctor in ontario is Dr. K and apparently he isn't taking any new patients and he might think about taking some new ones in February, so I have to wait without knowing my fate till then.
I am skeptical about the Naturopath, buttt, I'm going to see if she cant hopefully keep my symptoms at bay untill then and help me the best she can.
shes also a registered vet, so i'm thinking she might know a thing or two about lyme.
thanks for the words everyone!
-------------------- depressed Posts: 17 | From canada | Registered: Dec 2009
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posted
Hi - one idea - some people are treating Lyme with herbs, for which no prescription is needed. For example, the Buhner herbs are a common way to treat.
Herbalist Stephen Buhner wrote a book, "Healing Lyme", which is really interesting to read, about Lyme and herbal treatments. He's on the planetthrive web site, and also people are on the yahoo site Lyme_Aid_Buhner.
During this time that you are waiting to connect with someone, I suggest you study Lyme treatments. Read the Burrascano guidelines. They're listed under Links to the left of the screen. Read here about what people are doing. We're generally taking a lot of supplements too. The trick is to find the treatments we respond to.
Posts: 13117 | From San Francisco | Registered: May 2006
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I am so sorry you are going through this especially at such an early age. It does indeed sound like you probably have Lyme What everyone has posted to you is great info that I agree with it but I just wanted to add a few things.
1) DO NOT GIVE UP!! You MUST be your own advocate..no matter how many people (Dr's etc) tell you there is nothing wrong with you follow your heart and instincts!!!! and believe me there will be some that tell you that. You will even question your sanity. I ended up figuring out what I had myself as well.
2) DO NOT GIVE UP in trying to see the LLMD in your area...ALWAYS be polite when you call and call as often. You might even call in Jan and ask them just politely if the status has changed on new patients. If not call maybe once a week in Feb.
Again I stress BE NICE, remember in getting into seeing the Doctor you must first get through the front desk.
3) Even if you can not get into LLMD right away try to find a Dr willing to do a wesern blot test--they are not fool proof but might help in convincing people if it does come back positive. The Elisa test is WORTHLESS-DO NOT waste your money on it (I had TWO and both came back neg) and I have very bad case.
4) Pray, just from my experience I contacted my LLMD in APRIL and was told there was at least a 6 month wait for new patients. I was in VERY bad shape-could hardly function) I told my co-workers, friends, church etc not to pray I didn't have lyme (it was obvious to me) but rather to pray I could get into see Dr sooner.
WELL...I called back several days later and within a week I had an appointment.. Trust me God can move mountains.
One last note, I have a son close to your age--who I am fearful has Lyme as well so you are especially close to my heart.
Don't give up and please keep us posted...there is a wonderful group of people in this site.
Good luck and God Bless!!
Karen
Posts: 423 | From Virginia | Registered: Nov 2009
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Austin You should be checked for coinfections like Babeseosis,catscratch fever,ect.
As for the smoking,I don't know what to tell you about that except ,if the doctor doesen't have a nose you will be ok.
I can smell a smoker 100 feet away outside,anyone who doesen't smoke can smell it anytime.
Nicotene is a (poison),so I am afraid to tell Lyme people to quit,it may be killing the lyme somehow.
I have small airways disease from working in asbestos for years as an auto mechanic,cigarette smoke makes me coff till I puke.
MADDOG
Posts: 4010 | From Ohio | Registered: Oct 2000
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If, in fact, you do have Lyme disease, or more specifically, Borrelia, then smoking is totally incompatable and this is why.
Borrelia Burgdorferi is an anaerobic type organism, meaning that it thrives in a low oxygen environment. Smoking reduces the oxygen content in the blood, which in turn creates a micro-environment favourable to bacterial growth.
Lower blood oxygen levels will also hurt your white blood cells abiliy to seek out and destroy any pathogens in your tissues.
Your smoking habit will help the bacteria take over your body much quicker and easier than otherwise, regardless of any medications that may be prescribed to you.
Your smoking habit will make it pointless to treat you and this is why the doctor said no.
Uncontrolled and untreated tick borne illnesses, which includes Borrelia as well as many other co-infections, are terminal illnesses.
You cannot "just live with it".
Your life is on the line now - it is time to fight for it any way that you can.
Godspeed.
Posts: 45 | From upstate NY | Registered: Sep 2007
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posted
Austin - I agree that you HAVE to be your own advocate and FIGHT for your own treatment. Nobody will do it for you.
Try to convince your mom by educating her about the symptoms of lyme, the difficulty in diagnosing lyme, how unreliable the tests are. Try to find that John-Hopkins study that showed that regular lyme tests have a 60% (or so) false negative rate. Look up "success stories" here at lyme.net, find one (or more) that sounds like you, and show it to her. Maybe you could find all of the above and then schedule a day and time that you sit down and explain everything to her. She'll know you're serious and that you've done your homework. I know that this will be exhausting, but it's all great information for you to know, also.
Good luck and keep us posted.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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posted
P.S. What if you asked some of the moms or dads with sick kids on this board to e-mail your mom? I know that there are several caring for kids who are in their teens and early twenties.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Austin,
There is a member here by the screen name of maps who lives in Toronto.
I really don't know if she has any new ideas for you as far as a Dr but you can try sending her a private message and ask for any suggestions.
She is quite sick and isn't on the computer real often, so be patient.
Here is a link to one of her posts....click on it and then at the top of her message click on the envelope with the 2 people....then compose and send her a private message.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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