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» LymeNet Flash » Questions and Discussion » Medical Questions » NEED TO VENT !!!!!!!!

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Author Topic: NEED TO VENT !!!!!!!!
Kellie
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Member # 22491

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So, I have been having sxs of Lyme's since May 2008. My western blot came back igm bands 23 and 41 positive. The doctor I was seeing when this lab came back positive was a Rheumatologist. We will just call him Dr. A.

He stated he would treat me for it but flat out told me he did not think it was a true positive. He that maybe I have some type of Autoimmune disorder. He only gave me 10 days of Doxy.

I have been feeling bad on and off ever since then and this last episode effected my ability to concentrate and think clearly. I had a spinal tap which was negative for Lyme and WBC's.

I have had several MRI's and CT's. Nothing major showing up. I do have some "spots" on my lungs that I had a bronchoscopy for and it only returned chronic inflammation.

I have seen an Infectious Disease doctor a couple of weeks ago. We will call him Dr. R. He repeated a western blot that returned positive for IGG bands 39 and 41. I followed up with Dr. R today and he still will not diagnose me with lyme's.

He is requesting a CT of my abdomen and pelvis to rule out "spots" on my other organs. I had to basically beg him to run a CD-57 but he did and also a complete lymph panel (they have been elevated on the last couple of cbc's).

I just don't understand why Dr. R. is so hesistant to diagnose. [confused] He talked to me about cost. This baffles me. I was a very healthy young woman and now I barely have the energy to get out of bed in the mornings, much less keep up with my 3 year old son. He just keeps looking at me saying, "You don't feel good Mommy?"

What does cost have to do with anything. This is my life!!!!!!!!!! I have been infertile for the past 18 months and my husband and I really wanted to have another baby. I just don't get how you can put a price on your quality of life.

Dr. R. did give me 8 weeks of Doxy but he is not a LLMD. Is this gonna help me? From the research I have done, I think I need more aggressive treatment.

I am so frustrated about this. Why are these doctors so hesitant. This is my life and I have been out of work for 5 weeks on FMLA because I can't think clearly to do my job (I am a RN). Dr. R. also is making me go see a Neuro-Pshyschologist to assess my cognitive function to clear me to go back to work because he is uncomfortable releasing me but he doesn't want to treat me either.

I am desperate for any advice. I live in NC. I am willing to travel anywhere, I just for once like to walk in a Doctor's office and have a doctor really listen to me and care about making my life better. [Frown]

And then on top of all this, the doctor have the nerve to ask me if I feel depressed. Why would I feel depressed? I don't have enough energy to be a good mother or wife. I will lose my job if I can't get back to work in 7 weeks and I am infertile. I am only 29 years old, and I feel like I am 70. [dizzy]

I feel like me whole life is going down the drain because either doc's are scared or ignorant of this terrible disease.

If anyone has any advise, it is welcome.

Should I get a second opinion?
Where do I go to get a second opinion?
Do I have to have a refferal to see a LLMD?
Should I even take the Doxy?
What is the general cost of treatment?

People go in debt over cars, houses, even bad habits, and for some reason I doctor feels like he needs to warn me about cost for a treatment that could enormously increase my quality of life and /or could possibly cure me, or at least get my symptoms managable.

Well, like I said before, any replies or advise is welcome. Thank you for taking time to read!!!!!

Kellie

Posts: 3 | From Winterville, NC | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
BC
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Take the Doxy. It's what my wife's LLMD started her on. 8 weeks is a good amount for a non LLMD to give you, you should be thankful for that.

What is the daily dosage of the Doxy?

Posts: 27 | From Binghamton, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
kitty9309
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Edited to take out my wrong assumption, noted below! [Roll Eyes]

Mentioning cost is a way to frighten you. I had a neurologist tell me that the only way to be sure I don't have Lyme is with a "SPINAL TAP" and he had a scary look in his eyes. It caused me to back down, but I wish I had been stronger.

Get a second opinion. Sadly, most of us have been where you are now.

Go to the Seeking a Doctor section and ask for a refferal. Note your state in the subject line.

[ 09-24-2009, 05:26 PM: Message edited by: kitty9309 ]

Posts: 819 | From East Coast | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
BC
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I believe her son is the one who says "you don't feel good Mommy?"... not the doctor.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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STATISTICS ... LYME POLL

by Tincup posted March 8, 2005,

Lyme Disease Survey Responses,

FINAL RESULTS shown below!

February 27, 2005 - March 9, 2005


1. How many doctors did you have to see before being properly diagnosed? 112 responses
Average number of doctors consulted before being diagnosed - 14
Answers ranged from 1- 120 different doctors


2. Have you had problems getting insurance to pay for doctors or treatment?
87 responses? Yes- 63 No- 24


3. Have you lost income because of Lyme disease? 106 responses
Yes- 99 No- 7


4. How much does it cost you (average) per month for Lyme related expenses? 61 responded
Average cost per month per patient- $4,472.49
Low- $500.00 High- $21,492.00


5. How many different medications do you take per day? 77 responded
Average - 14 different medications per day
Low- 3 High- 25

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TerryK
Frequent Contributor (5K+ posts)
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Welcome Kellie-
You have some significant bands in your test results. This will help explain.
Dr C's Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

You need appropriate treatment (more than the typical 200 mg per day of doxy) AND you need testing for co-infections. The tick will often pass more than just lyme disease.

Some of the co-infections require an entirely different treatment than lyme disease. If you have an untreated co-infection, it is much more difficult if not impossible to get rid of lyme.

Your best course of action is to seek out an ILADS LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.

You can go to the seeking doctor section of lymenet and put your location in the subject line and ask for help in getting a list of doctors that are close to you.
http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors)
http://www.ilads.org/

You can go here and register and get a list of ILADS doctors that are closest to you.
http://tinyurl.com/6na364

You can also check for your local lyme group here.
http://www.lymenet.org/SupportGroups/

A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories.

As far as cost, it can be expensive but it would be impossible for anyone to give you a $ cost. There are too many variables. It depends on who you see, your insurance situation, what prescriptions are covered by your insurance, how long you need treatment, cost of travel etc. etc. Like you said, you can't put a price on health.

Personally, I wouldn't bother with the psychological testing. Many a lyme patient has been put through that wringer. You are not crazy, you are sick! You can get better with the proper treatment.

Since you haven't been sick for very long yet, I'd get to someone who knows what they are doing. This early in the game, you may get well quickly. Doesn't happen for everyone but the chances are good for you. The longer you wait, the longer you will need treatment.

Terry
I'm not a doctor

Posts: 6286 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
coltman
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Well get igenex test once you off of doxy for 2 weeks. I know people here keep repeating stuff about clinical only diagnosis, but I personally feel more confident in dx with labs to support them.

DRs wont help you make decisions anyways. At least that is my impression so far . You gotta know what you want to do and how you want to treat it .

LLMD visit range from copay (for those few who take insurance ) to $1000 for first visit/ $500 follow ups. Drugs can cost quite a lot , especially IV ones, most orals with co-pay are very cheap though (even out of pocket they are affordable)

You definitely need to get 2nd opinion (and maybe 3d and 4th ...) and more tests. Treatment for lyme is also hard thing to decide on -many people are not helped by abx and have damaging side effects. Aggressive treatment might be too damaging, while careful approach might also yield no results. It

Posts: 856 | From MA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
kitty9309
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quote:
Originally posted by BC:
I believe her son is the one who says "you don't feel good Mommy?"... not the doctor.

OK. I misread that! I am so embarrased. It makes sense to me now.

I guess I transferred my own experience to hers.

Ditto on the Doxy. Take it and find a doctor with Lyme experience.

Posts: 819 | From East Coast | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
n.northernlights
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Maybe get a western blot by Igenex, they test for more bands, and report the IND bands too (the others ignore them) if you are a bit unsure about the thing. Or if the doctor is unsure...
If you are sure about the lyme (it really does sound like it, and those bands are enough together with the symptoms)
you need some kind of treatment.

First you might also want to go on the diet, no sugar, no gluten, no alcohol as those lower the immune system.
Probiotics are necessary, and worm treatments (!) people have reported that in hindsight they would have done the parasite treatments sooner or more often. Some use humaworm herbs.

Now you can go to an LLMD, or buy a zapper, or do salt/C, or do herbs, and there are a few other treatments out there reported to help, but just do something other than go to the ID.
Doxy is a good start.

Posts: 366 | From Europe | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
TerryK
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Personally, I think it's best to hit Bb with both allopathic and alternative treatments. In my view, it is important to have an LLMD or LLND on board.

I used a zapper every single day for over a year and it did nothing for my lyme disease as far as I could tell. They are used primarily for parasites. Didn't kill those for me either. It does stop a cold in it's tracks most of the time.

Terry

Posts: 6286 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
xoxoxox
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What's a "zapper"?

--------------------
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Danni

Posts: 311 | From Glen Mills, PA | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
ConnieMc
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If he is in NC, Dr. R is likely scared to death that if he treats you with anything more aggressive than doxy, he will be brought before the NC Medical Board. I watched as one of the best LLMDs in the country was taken down by the NC Medical Board.

And it was not a pretty site. Stories like his get around and doctors are scared to help patients. It sounds like he wants to help you, but is reluctant. What a shame.

But with the anti-Lyme climate in NC, you will likely have to travel to another state if you want help. Sad but true.

I know of an LLMD in the Tidewater VA area but do not know if she is taking new patients. Since you are in eastern NC, that would be the closest one for you. Otherwise, you will end up traveling north from there.

I know exactly where Winterville is as I am a proud ECU pirate. I spent 9 years in Greenville and they were some of the best years of my life.

Feel free to send a private message if you want the VA doctor's name.

Best of luck to you!

Posts: 2274 | From NC | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
gemofnj
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kellie,

you have lyme. i had the same bands positive as you and i also had nuts tell me i didnt have it, even when my regular MD said i did.

i found a good LLMD, and im in remission now. SO,

get a real LLMD as the others have stated above. READ as much as you can, especially Dr. B's guidelines.

dont wait. get to a doctor as soon as possible because the longer you wait, the harder it is to treat. -- and you could have coinfections too.

lyme can last a lifetime if you dont get the right treatment (and it is well worth it)

good luck and keep us posted.

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
LisaS
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Everyone has different advice on what to do. And Lyme affects each person differently and each person infected will respond to a different treatment.

Some people respond to antibiotics, while others go natural, most mix both to get better. There are also many alternative treatments like rife machines, zappers, accupuncture and tons more.

The best advice I can give you is be your own advocate. You're an RN so you already have a lot of knowledge, so don't let Drs try to tell you you're not sick when you know you are. Don't let them dismiss you.

Start doing your own research and reading everything you can. On here, and on http://www.ilads.org/, lymediseaseassociation.org. There's lots of good sites, and you will learn the debate between getting treated by ILADS Drs and IDSA docs.

Also there are lots of good books on Lyme, and also a movied documentary called, "Under Our Skin".

Good luck, I hope you get well soon!

--------------------
https://www.facebook.com/profile.php?id=1660435643

Posts: 1078 | From Lake Geneva WI | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
Starfall1969
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Kellie, unfortunately, welcome to the world of Lyme treatment.

I went through a lot of the same garbage with doctors.

I had a few flat out tell me I was depressed/anxious because I'm a stay at home mom who neeeds a job, a life, a hobby and an antidepressant.

I was seeing a psychologist whom I stopped seeing because all he seemed interested in was proving that my symptoms were psychosomatic.

It took close to a year before I found and was seen by an LLMD who actually spent the time to listen to me and begin to help me.

Oh, and from what I have read/heard, spinal taps are not useful in diagnosing Lyme; I think it was something about the Lyme bacteria doesn't prefer that environment.

Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
TerryK
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Danni asked:
What's a "zapper"?

It's a low voltage electronic device (battery operated), used to treat parasites. It was devloped by Dr. Hulda Clark.

You can find more info by searching the internet.

Terry
I'm not a doctor

Posts: 6286 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
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E-mail me, and I'll give you a comprehensive (easy to read), list of physicians for your area. Just tell me which states you'd be most willing to travel to aside from NC.

E-mail: [email protected]

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
minimonkey
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Believe it or not, you got further than most of us with a regular doctor.

Fighting with doctors and trying to get and pay for treatment is generally worse than the disease itself... and that is saying a lot when this disease is so awful.

Hope you find a good LLMD soon.

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

Posts: 822 | From California | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
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If you need any further advice, let me know.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
   

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