I am so glad I talked to and got your input before I went today. I so need your input now.
Ok so I went to see the duck and see if this sounds like what you all heard:
First he told me that I have SOME symptoms consistant with lyme disease but he thinks I was infected previously with both the lyme and the mono. Because my first test on both were low (lyme only having 2 bands on the first 1 on IgG and 1 on IgM and the second test coming up 7 on the IgG and 1 on the IgM). And I am just having a reoccurance.
Second He wants to test me for everything else like bacterial and infectious diseases, like some personal stuff. I told him I was NEVER sick like this before but....
Third he thinks that if I did have lyme dis. and took the Doxy those 2 times then that should be enough. He's not apposed to putting me on them again but that would be in the future sometime after he does more blood test and gets those results.
Fourth He is going to get a CT on my abdomen done and thats ok with me cause of the pain I have been having since this began. I want to know if it's anything..
Sound like what you all said it would be like. Pretty frusterated right now I thought maybe I'd get lucky but it's really sound like what you said... bummer.
Let me know your thoughts please.
take care Beth Posted by sixgoofykids (Member # 11141) on :
I wouldn't waste any more time with him ... I'd go straight to an LLMD.
Posted by rubjord (Member # 13586) on :
I would too. Go to an LLMD there is a great one in NJ Dr. F. Also have them check for co-infections and they will find something. How long have you had symptoms.
Posted by eliza85 (Member # 13630) on :
Since the middle of june
Posted by 5dana8 (Member # 7935) on :
Original Quote by eliza85
" Because my first test on both were low (lyme only having 2 bands on the first 1 on IgG and 1 on IgM and the second test coming up 7 on the IgG and 1 on the IgM). And I am just having a reoccurance."
Hi Beth
I am so sorry you had to go threw that
There is no such thing as having a "Little reoccurance"...that's like being a little bit pregnant. You either have lyme or you don't.
And no, a few doses of doxy does't guarantee you from not still being infected with lyme disease or any co-infections either.
I ditto the other posters in seeing a LLMD .
Hope you can feel better soon Dana
none of the above is medical advise...just my 2 cents
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by eliza85: Because my first test on both were low (lyme only having 2 bands on the first 1 on IgG and 1 on IgM and the second test coming up 7 on the IgG and 1 on the IgM). And I am just having a reoccurance.
JUST??? Just a reoccurance? 7 bands on the IgG is very significant. How can he ignore that??? What an IDiot!
Get SOMEONE to prescribe some doxy for you before you become chronic. For every day that goes by you are closer and closer to having this long term.
I'm very sorry to say that, but it is true.
Get help now...even if it means going to an Urgent Care clinic and telling them you've been bitten and were undertreated.
I have no clue if that will work, but it might.
Find an LLMD with great haste!!!!
Posted by Michelle M (Member # 7200) on :
Ditto the above advice.
Chances of him "finding" something in your stomach?? Mighty slim.
He's not going to "find" lyme 'cause he's not LOOKING for it. In fact, he's already decided he's not going to find it because it already got "cured."
Yup, sounds really familiar!!
Post in "Seeking a Doctor." People will PM you if you put the nearest big city. Make sure your Private Message option is turned on in your profile.
(Drag your screen down and find the thingie to change to that forum on the bottom right.)
Meantime, make some excuses to politely pass on your next appointment. Unless it's costing you absolutely nothing, of course. Claim you can't afford it right now, gotta save up a bit first. Some such nonsense.
Let us know if you can locate an LLMD. The faster you start calling one, the faster you'll get in. It will help that you already have your test results. At least SOME of them!
You're on the right track!
Hugs,
Michelle
Posted by CaliforniaLyme (Member # 7136) on :
Get thee to an LLMD*)!*)!)!! !*)!*)!*)!*)!*)!*)!)!*)!!
Best wishes, Sarah
Posted by roro (Member # 13383) on :
It would not matter if EVERY SINGLE BAND came back double positive. Ducks do NOT treat lyme disease period.
All he will do is waste your time and you will get sicker and sicker. Trust me, I have been doing this for 12 years and have been to 50+ doctors and specialists.
all they will do is try to treat the symptoms.
if you do get someone to believe you have lyme, all they will give you is 14-28 days of doxycycline, and that is not enough to cure it anyway.
no doctors treat lyme except for LLMDs
Posted by eliza85 (Member # 13630) on :
Yeah I know I need to get a LLMD. I was excited when I first walked in the room with the nurse because I asked if the Doc treated very many lyme patients. she said " OH Yeah we get a lot of lyme patients. I was so excited then HE walked in and spoke by the end of my time there I thought "They were so right, bummer"
thanks for the input from all Beth
Posted by Michelle M (Member # 7200) on :
Roro, I couldn't agree more!! It was only intended as a stop-gap measure to get her some doxy until she could get in with an LLMD.
Michelle
Posted by canbravelyme (Member # 9785) on :
Only had symptoms since June? I thought to myself that's not long.
I agree with tutu and others who support her opinion here: get to the best LLMD you can find NOW! Because you do not want what some of us have. You think you've got doctor problems now? Don't wait until you have a smorgasborg of other horrid symptoms that doctors other than LLMDs think you're nuts. When you're covered in head to toe burning pain - hopping burning pain and your doctor looks at you like you're nuts then imagine how you would feel.
And by the way, I went to one of those doctors who "treat Lyme" in Toronto; he even believes in IgeneX and clinical diagnosis. Then year and a half later when his protocol doesn't work (no IV), and the Lyme has progressed apart from some minor non-lasting improvements, _he_ starts suggesting that I'm depressed (impossible) and maybe I never had Lyme in the first place because I had multiple negative Canadian ELISA tests? Huh?
So now I'm cronic. I wasted 2 years as a result of that man, because it took me some time to re-establish my confidence in myself after being so abused (yes, this is abuse).
He did treat me with a course of fluconazole at my request (why am I being the doctor?), which he resented (clearly on his written report) and the fluconazole I would say was the only thing he did to lasting effect.
Now I see a very experienced ILADS LLMD. They have to be ILADS or I suspecy you're in for aggro at some point, and this is one disease that has serious repercussions the longer you wait.
I also had stomach pain as a first symptom. Only thing that helped was abx and now anti-convulsant medication. My stomach was fine; it was neuro-Lyme..
Love and best wishes,
PPS This Lyme ILADS doc that I am now seeing has got me functioning at about 50%. 6 months ago, I would say I was functioning at - (minus)10% as a result of seizure-like events and various and sundry other samplings of physical suffering.
Please post on seeking a doctor and see an ILADS member. This is my experience.
Best wishes,
Posted by eliza85 (Member # 13630) on :
Thanks to all again
canbravelyme wrote:
Now I see a very experienced ILADS LLMD. They have to be ILADS or I suspecy you're in for aggro at some point, and this is one disease that has serious repercussions the longer you wait.
I also had stomach pain as a first symptom. Only thing that helped was abx and now anti-convulsant medication. My stomach was fine; it was neuro-Lyme..
Three questions: What is aggro?
and
the stomach pain (actual stomach or in the stomach area? was it constant and was it tender to the touch?
Posted by canbravelyme (Member # 9785) on :
Hi again
aggro = aggravation (understatement)
My stomach pain was upper abdominal and not tender to the touch. I posted not to diagnose your stomach pain but to imply that one must find a very knowledgable doctor because, for example, who would think that all these issues I had with vomiting were neurological? Well that took 4 years to figure that out.
There can be so many reasons behind stomach pain. I don't recall whether you have investigated the stomach pain with your GP, but I would personally not wait to see the LLMD if you haven't because you can't be too safe with your body, and you never know it could be something else ON TOP of the Lyme that has to be addressed. Who knows? Perhaps it could be urgent.
Thank you for your PM.
Best wishes,
Posted by eliza85 (Member # 13630) on :
thanks for the input. No I havent been as sick as all of you God bless you all. Trying not to. But I see where I could be heading and it's really overwhelming
Sorry if I offened you in asking about your pain just grasping at any and all straws I can.
I now have serveral list for LLMDs and will be making phone calls on Monday.
Spoke to my GP today and told him the duck doc wanted me to have a CT scan on my abdomen and I want to have that done so I know.
take care Beth
Posted by canbravelyme (Member # 9785) on :
Boy there is some good advice here.
I'm relieved to help you. I find activism the way to some relief.
Helping someone here is a direct form of activism.
It's interesting that you picked up my irritation! It had nothing to do with offending me, and I read my post to make sure it didn't come through.
Which apparently it did. What that is about:
The situation in Canada is such that there is arguably one true LLMD. He lives in a different province than where I do.
There is a tendency that I fell into to disrespect the seriousness of this disease and figure that a "Lyme Doctor" vs. a true LLMD wil be good enough to resolve whatever is happening, especially if you educate yourself by reading the Burrascano guidelines, and conversing with others on boards about comparing treatments and symptoms.
What I like about this board is that there is very little of this going on.
Most of us have a significant respect for this disease, and realize that no matter how educated we get, we need doctors who know more about it than we do.
I got caught up with that "Lyme ducky" (is that a good term for it?) giiving him more respect than was healthy because I believed that if I reasoned with him, and discussed the various treatment suggestions in the guidelines, that I would get proper treatment.
Wrong.
So I'm a bit irritated when someone asks me such specifics about my symptoms when they don't have a proper LLMD because I'm concerned that what I say might encourage them that they might be able to work this out without the best help out there.
I did this and extended my suffering needlessly. If I had realized that what I needed was a true LLMD 3 1/2 years ago when I first was diagosed with Lyme, I could have saved myself much pain and suffering.
As Lyme_Ed points out it's important to check out all the possibilities, because it could be something else, even if you do have Lyme. Nobody here wants to take responsibilty for a diagnosis, because we're all so acutely aware of what misdiagnosis means.
Best wishes to you all,
Posted by eliza85 (Member # 13630) on :
I understand what you are saying and I resepct that. Thanks for the explanation. I have SSSSOOOO much to learn. Just so excited to have all of you to throw thing around with. I was even surprise that the ducky I seen actually said what Michelle told me he would say. Not that I didn't believe her at all, but it was almost word for word. Blew my mind. I tend to ask a lot of questions and get input from all and go with that. I have an very good RN friend who isn't Lyme literate but is willing to learn with me before I had just her and did I bumbard her with questions. I think she wants to change her number, lol. Set me straight if I over step but so glad to have you all. Thanks Take Care, Beth
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