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» LymeNet Flash » Questions and Discussion » Medical Questions » I am so afraid

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Author Topic: I am so afraid
Misfit
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Hi all...im new and cant type very well right now even on my phone so plz forgive me. I have all the symptoms for lyme and at least 1 coinfection. My gp even said lyme was what jumped out at her when hearing my symptoms. Ive been reading so much since it was 1st suspected. Spent 5 hours on the phone who said ANY LLMD would dx me as positive and start treatment immediately. My gp rx'ed doxy only for 7days. Prescribed pred which i didnt take bc id been warned. Talked to the nurse yesterday. All she would say is my labs were abnormal but my RA numbers were high. No western blot from igenex so no faith in the test. My fear is ill get a dx of RA and sent to a rheumy and wont get the right treatment. Any advice? I see my gp on tues. No LLMD in my state. Im really sick and now im scared.
Posts: 624 | From Oklahoma | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
bcb1200
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I know how scary it is when you first find out you may or do have Lyme. I'm only 1 month into my diagnosis.

I know you say there is no LLMD in your state. Are you sure? If not...find the closest one and go to them. It could save your life.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3114 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Misfit
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Thank you for replying. Im not absolutely positive theres no dr in my state. I put out an SOS on the other board. I hope someones got an answer. Its my understanding theres one in KS...with a year waiting list. At the least im hoping my gp is open to being mentored by a LLMD if all else fails. So many sick ppl...it shouldnt be this hard.
Posts: 624 | From Oklahoma | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
dmc
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print out the green lyme booklet from http://lymepa.org

Goes over the tick diseases pages of symptoms and the things lyme is commonly misdiagnosed as.

Try contacting the oklahoma support group
http://www.lymenet.org/SupportGroups/UnitedStates/Oklahoma/

Maybe they know an LLMD in OK

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I had to fly to see my LLMD. I live in Ohio and he's in NY.

Many will do phone consults and only make you go in person three or four times per year if you're flying in like I was. You just get the bloodwork done monthly somewhere local.

You really need to see an LLMD or be under the care of your gp if he is willing.

--------------------
sixgoofykids.blogspot.com

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Misfit
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Im afraid im going to have to rely on my gp. Its not humanly possible to afford a LLMD. Thats assuming i get the dx in the 1st place. I had started to tell the nurse that if my lyme test was negative i wanted to order the wb from igenex myself...she cut me off at the "if my lyme test is negative im going to" part and said i needed to see the dr. She would only say my RA numbers were high. If my pcp were lyme literate she wouldve dx'ed me on the spot. I dont think she knows its a clinical dx. She sure wouldnt have rx'ed me prednisone. I probably know more about lyme than she does at this point. Im just hoping shes willing to learn. Shes my only hope.
Posts: 624 | From Oklahoma | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
littlebit27
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Well in my experience most doctors that aren't LL won't do anything for you. But if she said it popped out at her *maybe* print out the info about 1 week not being long enough and see if she would be willing to do at least a month. Anything to keep you going until you can get into a LLMD.

Call around to LLMD's and I mean in every state, near or far, there are many that will work with you and your distance issue. Many LLMDs know that people have to travel far to see them so they understand and work with people.

My new PCP says he doesn't believe in Lyme-it's not in GA-LLMDs are only trying to make money-but then he said "how can I argue with success"-talking about treatment. So that leads me to believe he *might* be open to it but isn't going to let on because of the implications docs face when treating Lyme. His office also refilled my doxy script-even though I'm not taking it anymore- for a month supply. When according to their records they know this is the 3rd month I've would have been on it. He signed off on the prescription on problem. My old PCP gave me a week and that was it.

There's a forum in general support-about running out of money- http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22281
they have good suggestions about meds in that thread.

Anyway, Good Luck to you!

--------------------
*Brittany Lyme Aware on FB*
http://littlebithaslyme.wordpress.com/

Posts: 2310 | From Southeast | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
groovy2
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Hi Misfit --

This is what I suggest you do --

Make a list of your symptoms on paper-
Include EVERYTHING that you can think of-

List All symptoms - no matter how small--
length of time you have been sick ect-

Did you See tick or bullseye or any type of rash--

List Any medicine you have taken-
Amounts and length of time taken --
List Any Effects of medicine Good or Bad --

If you have a Bullseye or rash it is Important
that you take a picture of it for later use-

If you found a tick Save It in a jar -

After you have made you symptoms list
and organized it Post it here on Lymenet--

Break up you post into short sentences like
I did in this post ---

Use Plain English not doctor lingo --

You should know that All Lyme tests are wildly
inaccurate --
Dont put much faith in a Negative Western Blot -
No matter what Lab dose it -

If your infection is very recent and you
get proper treatment Quickly you
can make a full recovery --

As time passes treatment is Much Harder and Longer-

If you do not have money for travel and Doctor Bills --

Contact your Local churches and charities-

I know several people that were able to get help
from these type organizations in just a few days-
and covered full costs --

There is a Lot of people here with Lots of Knowledge that are happy to help you and steer
you in the proper direction --

Once you have decided that you likely have Lyme
and or Co Infections Personally I would
not waste time with any regular doctor--

The odds are that you will just waste time and money-- If you have Lyme you Really need to
be treated by a LLMD --

If you GP will give you a script for Doxicycline
It is likely it will be a Low dose for a very short time period

So It is Important that you take the doxicycline in the correct manner so that you can have the
best effect --

Do Not eat ANY Dairy ---

Do Not take any Vitimines or Antacids or Minerals-
These reduce the effect of the Doxicycline--

Hope this helps you--Jay--

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
dj
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I think we all are shocked and scared when we were first diagnosed. So many questions and no good answers. This board was so helpful. Lot's of great advice and support.

If you really feel that you have lyme you have to find an llmd. Other docs will waste your time and you'll miss the opportunity to treat lyme early. Once you've had it for a while and it becomes chronic, it's tough to "cure" it...or basically force it into remission.

Realize that llmd's are expensive and so are the labs. Hopefully you can find a gp that is willing to learn and work with a llmd in another state?

Please let us know how you proceed so we can support you through this time.

--------------------
I am not a doctor and am only expressing my opinions...please do not take this as medical advice.

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merrygirl
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The best advice I can give is to pay for a llmd anyway that you can. DOnt fart around with a doc that has no clue. You will be sicker in the long run. I run a support group and see it all the time. Heck I did it too.
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gwb
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quote:
Originally posted by Misfit:
Thank you for replying. Im not absolutely positive theres no dr in my state. I put out an SOS on the other board. I hope someones got an answer. Its my understanding theres one in KS...with a year waiting list. At the least im hoping my gp is open to being mentored by a LLMD if all else fails. So many sick ppl...it shouldnt be this hard.

Misfit,

I can tell you with absolute certainty that there is NOT a LLMD in OK. And for the record, there is no Lyme disease in OK either. [puke] Don't believe me? Just ask our Infectious Disease doctor in OK who doesn't know a bull eye rash from a bulls aXX. He told my wife that her bulls eye rash was a "age mark" from getting old. [dizzy]

There's one doctor here in OKC that does the Marshall Protocol and there's another ND here in town who claims to have "healed many people with *lymes* disease--whatever that is. [bonk]

I know it's not cheap, but if you have Lyme disease, and you're going rely on your GP, well, all I can say is you're gonna be wishing you spent the money to get diagnosed and treated right in the first place.

If you think you're suffering now, just wait until you get strung along by all the so called "specialists" telling you that you have this disease, or that disease, or that you don't have lyme disease because it doesn't exist here in OK.

The longer you put off getting a proper diagnosis from a LLMD you're just going to make your life that much more miserable for yourself. I'm sorry if I don't sound very compassionate and understanding (I don't mean to come across that way). But after suffering with this evil, wicked disease for 15 years, and seeing others (including my wife) suffer with it because doctors didn't have a clue, yeah, it infuriates me to no end that doctors can be so ignorant and narrow minded.

I pray you don't have to go through what so many of us had to go through and learn the hard way. If you've read the lyme forums you'll know by now there's only one way to get to the root of this, see a LLMD, get a Igenex Western Blot test, and don't muck around with "specialists" who have no clue about Lyme disease.

The sooner you get treatment for this disease (assuming you have it) the better your chances are of recovering. The longer you wait and muck around with clueless doctors, the more you're going to suffer with this disease. I wouldn't wish this disease on my worse enemy.

Get to an LLMD asap. You won't regret it.

Gary

Posts: 1349 | From OK | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
dj
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misfit - probably most of us here have been to specialists and been misdiagnosed with a variety of illnesses. Usually things like lupus, rheumatoid arthritis, cfs, sleep apnea, all kinds of things. It will take you months or years of messing around with these docs and so much frustration.

So if you really feel that it is lyme you're better off somehow getting the funds to go to an llmd.

As gwb stated - the longer you mess around with the other specialists the more lyme and other tick borne diseases will dig into your system. Also, other specialists may prescribe prednisone - do a search on this site for that about the warnings if you do have lyme.

I know it is a real struggle because it is very expensive to get treatment. My insurance doesn't cover any of the doctor bills nor the labs. But they have been good about paying for most of the medication so am thankful for that.

Sorry - don't have a simple solution for you - but think most people here will advise you to work with an llmd. (or your doc has to be in close contact with one)

--------------------
I am not a doctor and am only expressing my opinions...please do not take this as medical advice.

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Misfit
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Thank you all for your replies. Ive been doing my homework since this 1st happened. Got a long way to go. Ive likely been sick for years and didnt know it. Ive had tick bites all my life but it was the one 3 yrs ago that had the rash. I paid no attention to it at the time and cant remember if i got sick. My memory is so bad. I am on medicaid so that tells you my financial status. Its not that im wasting money on other doctors...there is no money for doctors. My gp takes medicaid. If i have no other choice i pray shell do whatever necessary to get the right info on how to treat me. I understand the importance of seeing a LLMD. Im just afraid wo insurance im screwed.
Posts: 624 | From Oklahoma | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
sickpuppy
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Misfit, you HAVE to find a way. Max out the credit card. Better a bad credit score than dead or totally disabled. Friends, family, sell all your stuff. You're gonna have to get creative--please!
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riverpatrol
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If you can't find an LLMD, maybe you can find a sympathetic rheumatologist. There are rheumies that believe in treating with abx instead of steroids. They are usually affiliated with the Road Back Foundation - http://www.roadback.org/ . I have been seeing a Road Back rheumie as well as my LLMD. My rheumie only ever recommends a steroid shot when the inflammation is really bad, and then the choice is up to me.
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Misfit
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I see my gp tomorrow. Got my lab results in the mail sat. My RA was high as well as my CRP. CRP was 12.76. Ok...not good. Everyone says that im like a dog with a bone with the lyme thing...they dont get that i cant afford the WRONG dx. Tell me what you will...just make sure its the RIGHT thing you know? I dont want to be rx'ed a bunch of steroids that could make me worse. Id be willing to max out credit cards if i could get one. Id have to have something to sell 1st. My life and financial status went in the toilet when i became disabled 14 yrs ago. I just want my life back...such as it was. Im guessing my lyme test wasnt back and thats why i didnt get that report. This sucks. Somebody somewhere needs to wake the hell up and realize lyme IS a problem and these doctors need an education on treating it. Shouldnt have to travel hundreds or thousands of miles for treatment. Its a disgrace.
Posts: 624 | From Oklahoma | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
randibear
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the closest one is in missouri.

sadly we lost our doc in texas.

good luck.

until somebody higher up gets it, we're stuck.

--------------------
do not look back when the only course is forward

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keltyl
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Sorry for what you guys are going through with no LD's. I travel 3 hrs., which is a drop in the bucket compared to your states.

It is a disgrace that ppl in our country have to go through all this. Someday, probably not in my lifetime, someone will pay.

Posts: 847 | From upstateNY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Misfit
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I dont get it. All this burying of heads in the sand by the powers that be. People are SICK out there and they make a conscious choice to ignore it. Im really mad at the whole thing. Im not the brightest bulb in the box but im no dummy either. If i can find out this info why cant they? Has to be more than they just dont want to. I dont get it. I know something is terribly wrong with me. Im not one to exaggerate symptoms. If anything i minimize bc i dont like going to the dr. I just hope for answers. I want my life back. It wasnt great before but it was better than this. Not knowing when/where the crippling joint pain and fever is going to strike next is maddening. The fog and fatigue are always there. Im beginning to wonder how much longer i can take care of myself. I hate that.
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dj
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Ya it is a disgrace to our country. Ever since I got diagnosed with lyme I now realize how little docs really know. They really only want easy cases and to give you meds and get you out of their office.

One rheumatologist I went to must have gone to a weekend seminar or something - he didn't run any labs or anything - he just asked me a few questions and then said that all my symptoms are caused by a sleeping disorder. OMG...that was his absolute final diagnosis and sent me away with a prescription for sleeping pills.

There are so many quacks out there it's actually quite scary.

Then the llmds who are willing to help you are probably at a high risk for malpractice and getting their license revoked. Most don't take insurance and their hourly rate is astronomical...but we are lucky they will at least try to help us get better.

Hang in there - we're all on this journey together.

--------------------
I am not a doctor and am only expressing my opinions...please do not take this as medical advice.

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keltyl
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The government doesn't want them to know about or believe in Lyme. There is such a coverup here, it's huge IMO. Maybe I'm just crazy. [loco]
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LightAtTheEnd
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"Everyone says that im like a dog with a bone with the lyme thing"

I got accused of that for several months. When I finally got diagnosed by an LLMD (several states away who doesn't take insurance), and my family watched the DVD "Under Our Skin" with me, they thanked me for persisting until I got the right diagnosis and treatment, even though they had doubted me before because my GP said I couldn't have Lyme disease.

Your loved ones will realize you're doing the right thing when they see you getting better. Meanwhile, hang in there.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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groovy2
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Misit--

Try going to your local churches for help--

I know people that been able to get money
help there --

Put a ad on craigslist asking for help--

There is Always a way to get things done -
Think out of the box --Jay--

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
   

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