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» LymeNet Flash » Questions and Discussion » Medical Questions » Now What?

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Author Topic: Now What?
nefferdun
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I had my LLND appointment today and she agrees 100% that I have bartonella. I could not walk with my eyes closed. I fell over. I hope no one tries to give me a sobriety test! Every single symptoms is bartonella. And she gave me a script for Bactrim.

She gave me a TON of supplements and two sheets of lab work to get done. Medicare does not cover naturopathic doctors. Great, I forgot about that but it doesn't cover much anyway.

Labcore did the tests and said I would probably be charged. Such is life. I am used to it.

Then I went to Quest. The person there said Medicare won't cover it and would cost thousands of dollars. Then she began giving me a hard time about paying for it myself! She was calling everyone and saying stuff like, "well I just want to make sure she can pay for it" actually looking for a negative response. Do they think I am a senile elderly person getting ripped off or something?

I got pretty annoyed with her and just left with the test request. As I was walking out she shouted , "have a nice day". I thought, should I have a bart flare right now?

Is this just me or what? So now what do I do with all these tests? I am going to email her about what happened. Then I will send a request to the ID doctor to send her the results of the previous lab work so nothing is duplicated.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
lax mom
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Can you go to a hospital lab?

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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surprise
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That's a good idea to see if ID Dr. tests you recently had are any duplicates.

When dd and I started Lyme treatment, and before that when I was doing biomed with her with a autism DAN! Dr.,

we had Kaiser who paid for NO tests, not a penny.
It was ridiculous what I spent.
Viral testing, mold testing, cost thousands.

Can you email the NP and see if there are some tests you can cut out, or go through them and decide for yourself?

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Dogsandcats
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I had my doctor write me a note stating I had a disease that would impare my ability to walk a straight line with my eyes closed. I kept it in my purse in case I got pulled over.

I don't think while I was treating I could have walked a straight
line with my eyes open!

Dr must have thought I had a lead foot and was a bad driver!

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Lymetoo
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neffer .. Personally, I would go thru the list and see what tests I might be able to skip. Do what you feel is essential.

--------------------
--Lymetutu--
Opinions, not medical advice!

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GretaM
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I agree with Lymetoo.

TBD tests are the pits anyways. Clinical dx at this stage in the game should be all that is needed.

Important stuff like CBC liver kidney function tests etc. can those be "submitted" to insurance for reimbursement after?

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
nefferdun
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Good ideas. I went online to try to figure out what they are all for and many of them are unnecessary. I know I don't have Crohn's for instance and I don't believe my heart is damaged.

I know I don't have strept because I have never had a sore throat. Do you think it is important to check for such things as Epstein Bar and clymadia? If I have those, is there a treatment?

I got $1000 in supplements! I just hope they let me through security at the airport!! Seriously, it looks like the makings of a small bomb.

She told me not to eat wheat or dairy. I was afraid of that. Can't I just get a test? I noticed there is a test she skipped for Celiac. Wouldn't that tell you if I was sensitive to gluten?

I ate out at an Indian restaurant last night and Thai tonight. I just took a fat binder and enjoyed myself. It was the best food I ever had.

I feel vindicated. I knew I had bart. She tested me and I hope it comes back positive. I was treating it myself but kind of worried about it so not very aggressive.

I am getting one of my other cats tested. He was treated for gingivitis and a yellow spot on his eye - horrible breath too. If bartonella is so prevalent in cats, vets should be more aware of it.

I got the F test in September because I knew I was sick, and here it is Feb. and I am just getting a doctor to treat me.That is terrible.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
GretaM
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Wheat and dairy are generally "inflammation makers" in some people.

Wheat can irritate and cause inflammation even if celiacs test is negative.

"In some folks".


I came back negative for celiacs, but swell up like a balloon on my joints if I eat wheat or gluten.
My joints hurt like the Dickens when I have eaten gluten-so I know it bugs me.

Maybe that is why she suggested no wheat or dairy?

Dairy is a "mucus maker".

At least that's what my mom has always told me [Smile]

Eptein barr can be a coinfection. Mine was.

Not sure if there is treatment for it. Same with chlamydia.

Are those plus HHV6 the viruses for chronic fatigue? I can't remember...

I pay for tests out of pocket also so I keep my tests to a minimum.

The heart test is likely a good one to get as they say heart disease is the "silent killer". Plus some abx like zith etc, can affect the heart.

I am sure glad you saw an LL. That is great news!

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Judie
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Hey Nefferdun,

Medicare paid for most of the tests I had awhile back. The issue is getting the "correct" diagnostic code for each test.

If you go to this link, I put in the first post links to tests to get. Medicare paid for 99% of them with the right code.

Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/127210?#000000

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beaches
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Nefferdun, DD NEVER had strep nor a sore throat! She was cultured numerous times and NEVER ever tested + for strep, yet had VERY high strep antibodies so IMO this would be an important test. What “heart” blood tests has the doc ordered? The only ones I’m aware of (that test for recent heart attack) occur in ER settings following episodes of chest pain. But I’m no expert on that. If the doc recommended a stress test or echocardiogram, it’s likely a good idea.

I do think it’s a good idea to test for EBV and Chlamydia pneumonia. I believe these are coinfections. They’re viruses and can be treated with anti-viral scripts like valtrex and/or natural supps like monolaurin.

As for eliminating wheat, that’s good advice. You don’t have to have Celiac Disease to have an allergy/sensitivity to wheat. I do not have Celiac, nor do my kids. They feel better on the GF diet, which isn’t really that hard once you’ve been doing it for awhile. I however, DO have an allergy to wheat (among other things) which developed after I got Lyme/cos. I really didn’t believe it at first, growing up eating great bread and pasta without a problem. But after cheating every so often and paying for it in the bathroom, I’ve come to the conclusion that it’s not worth “cheating” so I’m sticking to the GF diet.

As for dairy, you might do OK with fermented foods like yogurt/kefir/cheese. My kids love the yogurt and cheese but also ice cream. One of them has to take a digestive enzyme after eating that b/c she can’t digest fats.

Don’t know anything about cats or the “f” test you refer to.

Greta, your mom is right…dairy is a mucus maker! And dairy/wheat can sure cause inflammation. I know that b/c I’ve paid the price!

And yes, EBV and HHV6 are viruses associated with CFS. DD has been treated aggressively for both. IMO CFS is a unique manifestation of LD/cos.

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lpkayak
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I would save money for treatment

Many tests are not accurare

Igenex takes medicare-use that link judie gave

Also mant treatments go after different bugs

I have always regretted buying supps at a docs office...get the name and dose of supp or herb and ask on here for better brands

--------------------
Lyme? Its complicated. Educate yourself.

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beaches
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Judie, thx.
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beaches
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LP, good advice re: supps at doc's offices. ALways good to shop around for best prices.
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map1131
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Neff, please don't assume your heart is not effected. I made that mistake big time.

I had a 100% blockage of right coronary artery. My blessing was while it was being cut off, my God given wonderful body created a little bypass.
The outcome could have been a massive heart attack.

My lyme sx were so severe they covered up what was happening with my heart. I was only 42 when this all began.

Neff, lyme & co can and will damage your heart. Medicare will pay for stress test and basic heart test... if you are having symptoms like shortness of breath, extreme fatigue from doing something as simple as walking the stairs.

I do believe extreme fatigue goes with our illness. Everything is exhausting.

Just think about it, please.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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nefferdun
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This is all great advice. I actually have had twinges of pain in my heart and I can't exert myself, like run. I will go to a regular doctor first and get him to run as many of these tests as possible.

I will tell that doctor I am always tired and never mention lyme disease. I will tell him I have had pain near my heart and show him how I can't walk straight when I close my eyes. In the last six months my blood pressure has risen from 120/60 to 140/80. I don't think he can ignore that!! They will have to check for a blockage.

I will bring the test that shows I have hyper coagulated blood and high ferritin which adds risks of stroke and heart disease. I will say my grandmother died of a stroke when she was younger than me and my mother had dementia and heart disease.

If I don't mention lyme he won't ship me off to the Infectious Disease doctor again. After all, I already went to the ID and he said I was fine so it should not be part of anyone's consideration.

My back hurt too but they could blame that on age. My memory is really bad, I have bad concentration and I take imetrex at least once a day for horrible headaches, so they can give me a brain scan. I would like to know if I have lesions in my brain.

When the test results for my cat comes back, if it is positive, I will get all the animals treated and make sure my son is tested.

After i get them to cover as much as possible, I will get her to write a new order and pay for the rest of them myself.

My only question is - if my cat's are positive and I am positive, should I tell the doctors so I am not diagnosed as having early stages of Alzheimers or something? I am not sure I could count backwards by 7's very quickly, If fact, I would probably lose my train of thought. I had a hard time just spelling "water" backwards.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
   

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