LymeNet Flash: Jane's into

This is topic Jane's into - I'm new! in forum Medical Questions at LymeNet Flash.

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Posted by ontariojane (Member # 6526) on :

Hi. I am new to the board. I think you guys are wonderful. I get scared when I see how long treatment seems to go on for so many and wonder if that will happen to me too.
I watch my diet and take supplements out the old wazoo, try to get lots of rest and drink tons of water.....
Got diagnosed in late September with late Lyme...very lucky that my family doc here in Ontario accepted the Igenex results without batting an eye. (Formally they are not accepted; it's easier to pretend Canadians don't get Lyme disease!)
He then turned to me and said "okay, how do I treat it?" I asked him to call the Canadian Lyme guru in B.C., Dr, M., and next thing I knew I was off to the hospital to get something called a PICC line, put in. Apparently this i.v. protocol was because of the dizziness, weakness, speech problems and facial numbness I was at this point experiencing. I've also had muscle spasms and arthritis over the years, and black matter and fibres coming out of the skin (because of the skin issues I also post over on Lymebusters and have made some dear friends over there). IN fact I'd say skin weirdness was my first "symptom". Laughed at by many doctors, long story, won't go into it here.
As a Canadian, where Lyme is even less understood than it is in the U.S., I want to say that I have nothing but gratitude for my American cousins. Because of Americans on a chat board I found out about Igenex, and at their insistent pushing, got tested after one of those stupid Canadian ELISA tests which of course came out negative (two years ago).
Anyway, by the time I got my test, I was sicker, weaker and more discouraged than I had ever been in my life. I felt that life wasn't worth living, even with my two beautiful daughters urging me to hang in and keep pushing the medical establishment for answers.
I now have an i.d. doc in Toronto who seems to be one of the few in Ontario who knows anything, even though I would classify him as conservative in terms of treatment protocols, based on what I read here on this board.
I'm into month four on rocephin (called ceftriaxone in Canada)and still have one numb finger and two numb toes, exhaustion and dizzy spells. I've also dropped 15 pounds which I wonder about, since I haven't been trying to lose weight.
so hi everyone and thank you for this board - there is so much knowledge and experience here and I have already followed some of the advice here and posed some new questions to my doctor because of it.
Btw I am not a spring chicken either, but a menopausal Mom. Hard to know what the night sweats and chills are from...babesiosis or age

Ontariojane

Posted by Lymetoo (Member # 743) on :

Hi Jane! Welcome! We're glad you finally came out of the lurker closet!

When you post things in the future, would you please push "enter" twice after every 2 or 3 sentences? It would help the Lymies who are visually impaired....and that's most of us! thanks!

I'm glad you finally found a good doc. I hope he continues to be a "learner"...keep up on stuff here so you can help him!

One thing you MUST do is get treatment for babs ... I'd be willing to bet money on babs, not menopause! The tests for that are often as flawed as the Lyme tests, so it's important to be treated for it, regardless of test results.

[that's my opinion, and I'm not a dr!]

So here are your goodies in case you need them!

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

More info: http://www.ilads.org/

Breakthroughs in Lyme Disease http://www.pacificsites.com/~dglaser/lyme/ARGFocus_October2003Newsletter2.pdf.

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oops!
Lymetutu

[This message has been edited by Lymetoo (edited 05 February 2005).]

Posted by lymiecanuck on :

Hi Jane,

Welcome to the board.

Jane and i have communicated quite a bit. She has been a great help to me. As many of you know my story of being refused proper treatment. Again Jane thank you for the information I needed to get where I am going.

Jane directed me to her doctor and I am now being treated and have been for about 2.5 months. I would be a great candidate for iv as well, but am grateful to be treated at all.

I knew of him before, but was misinformed and was not aware that he was lyme literate, so after looking into and making some calls decided it would be another waste of time and I had been wasting much time seeing many specialists and have so many tests it was riduculious.

After hearing of Jane's good exp. I decided to go and it turned out to be the real thing, much to my amazement. I am still having a lot of problems, but feel I just might live now, how long who knows. I am also able to test my son now as a result of this.

Jane is a lucky girl having such a great GP to help her, as her situation is almost unheard of around here.

Hope you enjoy the site, it has been an amazing place for me to keep my sanity through this nightmare.

Lymiecanuck

Posted by lou (Member # 81) on :

One of the symptoms of babesia is anorexia. I lost so much weight, my clothes didn't fit and I looked terrible. This was despite being on lyme treatment. I credit additional treatment for babs with the fact that the weight came back nicely, even to the point that I can't gobble up everything fattening in sight anymore.

So, the night sweats and the weight loss suggest to me that you should be tested for babesia also. Unfortunately, you can test negative and still have it. That was my situation for FOUR YEARS because they were looking only for Babesia microti.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by lou:

So, the night sweats and the weight loss suggest to me that you should be tested for babesia also. Unfortunately, you can test negative and still have it.

I agree. I didn't point out the weight loss, but my brain heard it. Points to babs in my opinion.

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oops!
Lymetutu

Posted by minoucat (Member # 5175) on :

Hi Jane. How great about your GP. With stories like this, and Duramater's, and Beachcomber's, I'm encouraged to think that the grassroots movement for treatment will finally overwhelm the BS flowing down from Steere, Sigal, et al.

And Lymiecanuk, I'm so very glad to here that you're finally in the hands of a good doc. It's been a long hard haul for you, I know.

And just for the record (and this relates to another post but hey, I'm a Lymie, I can go on a tangent if I want to) -- all the "LL" means in LLMD is lyme literate -- someone who reads the literature, understands the ramifications of the disease, and is willing to treat to efficacy, whatever that takes. It isn't a formal designation, isn't conferred by any organization, and doesn't imply a specific protocol.

And now for the real reason for this post: Jane, you know about the theory that Rocephin has has a strong propensity for converting Bb to the cyst form, and how that needs to be treated? There's a very good article on this on the CanLyme site. I failed on Rocephin because, I think, the cyst form wasn't addressed AND I didn't treat coinfections. I believe this is where the "abx don't cure LD" myth came from.

Rocephin is my least favorite abx, and if you use it I think you have to follow up aggressively with orals or IM bicillin (just my opinion) but I hope it works well for you, and I know others feel it has helped them.

Take care of your gallbladder! All the best, nice ta meecha.

Posted by Tincup (Member # 5829) on :

Hey Ontario!

Welcome!

Glad you are getting help up there!

Hope you join in and help others here with your experiences.

We sure could use some help!

Especially considering what we have now is a bunch of fruitcakes who have posted to you already.

YEP... THAT is our help!

HA!

They are gonna kick me bad.. hehehe

Anyhow.. some of the best of the best are here.. and if you need ANYTHING... we will do our darnest to help.

Feel better soon!

Posted by bg (Member # 46416) on :

Welcome Jane to this 24/7 educational, suppor group board.

Glad someone posted TINCUP's newbie list; TREEPATROL has one too ... NOT sure if they are the same web links or not.

But please print off the list of links, check them off as you read, as there are months of reading there.

Use the search feature also on what your questions is as majority of questions have been asked over & over. Good replies.

Please EDIT your post and hit enter twice after EACH sentence as our brain fog will not let us follow continuous sentences ALL in one paragraph. Thanks so much!

Betty G.

Posted by Corinne E (Member # 4670) on :

Hi ontariojane from another canadian, Sorry to cut in but after reading lymetoo's post about babs. That is so astonishing/weird. When I thought I was in the throws of menopause (about 12 years ago) or so I thought I was b/c of the terrible sweats and a bunch of other horrible stuff, I now realize that it was probably babs. Although I was just told that I am now going through menopaul Oh, so interesting.

I have read your posts on canlyme and I really appreciate all you have posted. I have a twin sister in Metcalfe who I think has lyme too, but her doc said no after neg elisa test AND she says she is too ill right to really care. I must take a trip home, her bossy 5 minute older sister will try to set her straight. Actually there are a few of you in Ontario that I could visit too.

The only reason I go back east is to see my sister, and my mother who passes away 2 years ago. Now I have other reasons to visit. It will be very interesting to see how you doc handles lyme controversy.

Corinne

Posted by treepatrol (Member # 4117) on :

WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Conflicts in Lyme

How to Search Courtesy of Danq
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TC Warning To Posters

Lida Mattman

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CDC Website on Lyme Disease
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Rose's 15 Facts for Newcomers
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

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Interested in what Trolls are?
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A copy of this is stored in computer Help section.

Posted by GEDEN13 (Member # 4151) on :

jane,
i want to apologize for my behavior yesterday.i am truly sorry if i offended you in any way.

my anger was toward's areneli,not anyone else.

actually,it has been a dream of mine to take a train across canada.from one end to the other.my brother told me that ,in montreal reminded him of being in europe....

again i apologize,,,gary

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Posted by ontariojane (Member # 6526) on :

Gary - no need to apologize, but you must have a sweet character ...How very nice!

I was not offended, really - too fogged, probably

I just wanted to register my surprise and didn't want nationality to play a role in the kerfuffle. 'Nuff said.
btw to everyone: thank you for the warm welcome. My family and friends don't understand (surprise!!) so it's really good to be among people who do.. at the beginning of October I printed out Burrascano's guidelines and took them to my G.P. who had first made my diagnosis. He also read Danto (whose stuff I also brought along) and another doc (whose name I forget) whose posts are up there on canlyme. Underlined stuff in yellow - bless his heart. I left out material on herxing for my nurses so they wouldn't think I was having an allergic reaction (it looks like that, doesnt it?) and they all learned alot too. The sweeties.
My G.P. (general practitioner) eventually passed me on to the i.d. doc Lymiecanuck and I now see in Toronto, after I found out about him on canlyme. My G.P. got scared when I got c. dificile and couldn't contact our Canadian guru, Dr. M., in B.C. because of time changes and busy schedules. However,if the i.d. doc stops the abx and I relapse and he refuses to treat with any more abx, I'm on a plane to Vancouver...or back to my G.P.
(Have to have a backup plan

And I've added magnesium to my plan thanks to a post here somewhere, and thanks to Lymiecanuck I'm taking a mega probiotic. Sleeping better already from the mg.
I still feel exhausted, though. My i.d. doc has sent my blood to our national health lab in Winnipeg for testing for babs and erlichiosis, so it's occurred to him. Full marks on that one!
Jane

Posted by islandgirl (Member # 5914) on :

Hi Jane,
Welcome from a fellow Canadian. What do you call a female fellow?

I would be very interested in hearing your test results from our Winnipeg lab. Hope they are better than the regular stuff we get. Please keep us posted here and on canlyme.

Poor Dr. M, I think the US lyme gang would be amazed that one little guy can be holding us all together as we learn and try to help educate our GPS at the same time...

I agree with the people above who suggest babs. I am now on my 4th month of Mepron/Zith, and recognize that this is what was truly keeping me from getting over Lyme. I am getting there!! Slowly but definately surely.

Welcome to lymenet...I owe my life to this group.

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