nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am editing so the Doctor is not pointed out although I don't think you could or should consider him an LLMD. That was my mistake. I thought LLMD= treatment. No so.
I can't believe this. Don't anyone else make this mistake. Dr. will not prescribe a test (and he didn't suggest one out of IGENX -) because it is considered a conflict of interest for him to test someone out of his own lab. That is a medicare rule.
Since I have not been diagnosed for this new infection, he will not give me any drug.
No one told me this prior to my trip. He gave me a test kit and told me what to order thousands of dollars of tests from a doctor when I got home. The WHOLE reason I came here was because ALL the doctors I saw at home REFUSED to order ANY test, much less a whole pile of them!
I came down here for nothing.
In addition to this, I called them to remind them to put my test results that I did have done in my folder. I reminded the receptionist when I got here. He didn't have them and didn't read any of the information that they requested in their forms I filed out prior to the appointment. I had to tell him what my test said and ask what he meant. Can you believe that? He said it was probably a protozoal infection.
At the end of my appointment he went back to the lab and came back with a paper for a sample that had been refused but I had sent another one. He was so unprepared and completely apathetic.
I wrote out my history and he didn't bother to look at it. He gave me a sleeping pill and a script for stromectol (for the PR diagnosed in 2010), which by the way will not be covered by medicare. Good grief. I could get horse wormer from the feed store and any doctor will give me a sleeping pill that is covered by medicare.
I can't believe I am being treated this way - and it is legal! I am on the wrong side of the law.
So I have to treat myself. I know what I have and just have to trust my own gut and go after it. I have to order something for bartonella online. If it doesn't go away, I'll try something else.
I believe from some unconscious level I knew this was going to happen and that was causing a lot of the anxiety. I was crying in his office. I couldn't help myself. Now I feel calm - out of it, spacey, detached - but calm - because I know what I have to do.
He hates ObamaCare. He was blaming it. I was in shock and couldn't really understand what he was ranting about. I went from crying to just wanting to punch him.
Anyone know of a good online pharmacy where I can buy Rifampin/Rifabutin? You can PM me if you want.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
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Member # 25251
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Crying in public shows you're crushed. Sending you a private message.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6479 | From Louisville, Ky | Registered: Jan 2002
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GretaM
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posted
Oh Neff!
I am devastated for you!
My heart is breaking over your experience. I am so sorry Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I remember getting ready for my LLMD appointments, getting there and being exhausted just to do that much.
I would have been heartbroken to get there and receive that treatment or lack of.....
I am so sorry. I am speechless. Hugs
-------------------- 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 Posts: 1967 | From California | Registered: Oct 2010
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GretaM
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Member # 40917
posted
It's too bad the fatigue from lyme takes the edge off a good bartonella rage.
I did 3 laps of cursing and pacing and then had to sit and rest.
What a P-O!
Neff-do you need us to do the Car Shuffle?
First stop-Margarita Alley. I'm buying. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Sorry. Unfortuneatly not surprised. Sending strength to do what you have to. Keep coming back here for love and support
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I can drink one margarita without too much toxicity. I had one Sat nite at O'Charleys and oh my was it ever good.
When I ordered it I asked my husband to help me drink it. They only had one size and I thought it was too large.
One sip and I was hooked. Heavy glass & lots of rocks. Not so much of the bad stuff.
I'll drink one with you Neff. We'll do happy hour and try to get you happy, happy, happy.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6479 | From Louisville, Ky | Registered: Jan 2002
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I'll be absolutely hammed after two sips.
But I will eat my body weight in chicken wings to sober up.
Neff-you and Pam can split the rest of my margarita and then we'll throw some darts at baskets of french fries.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I don't know what to say.
This whole medical system is a debacle.
I just don't have words here, but thinking of you with support-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
What is his role in Lyme then? Just conjecture and what ifs? No real tx. I wish you could have gotten a refund for false advertising.
posted
Not totally surprised but heartbroken for you all the same.
It sounds like one of the major issues is that you have medicare -- that is the reason even though hubby qualified and received social security we kept his private insurance policy even though at the end it was costing $1500 per month. Private insurance gave us a lot more options as far as testing and meds.
It is my understanding that the doc does not actually see that many patients -- he has cut back his office hours to spend more time in the lab.
I did not know that he could not order IGeneX testing -- I want to look up that law because that does not sound right to me.
I don't know all the rules about medicare, but I do think maybe at least part of the problem is not the docs fault.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lax mom
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posted
Bea: why would having Medicare have anything at all to do with the Dr being this way toward her?
I know you have a personalish relationship with him where you could call him whenever you needed, but he treated her very poorly after her long, long travel and blaming Medicare is not helpful.
As I said I don't know all the ins and outs regarding Medicare. But technically I don't think Medicare allows clinical diagnosis and treatment -- I think you are supposed to treat based on positive test results only. And Neff has not been tested so no treatment yet.
That is my interpretation of the situation.
Yes, the doc should have been prepared for the appointment.
I really do not have any personal relationship with the doc. Actually had major issues around getting any feedback from the doc regarding hubby's test results.
It took several months to arrange a brief phone consult with hubby's LLMD and the doc. And even then the doc did not have hubby's results in front of him during that discussion despite the prior scheduling of the consult.
The lab director was much easier to contact and communicate with than the doc. But of course they were only allowed to share and discuss limited info.
I think in this situation since the doc owns or is at least a major stockholder in the lab he has to be very very conservative and not prescribe meds without a positive test.
He is in a unique situation and cannot do anything which might be seen as a conflict of interest.
Neff did get the test kits and if she does order the tests and then they were positive then I think the doc would prescribe treatment.
There are other LLMD's who will not clinically diagnose or at least will not prescribe meds until test results are available.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I have Medicare and it has paid for all of my labs and meds based on a clinical dx.
I just don't want the takeaway for neff to be that she would have had a better experience today had she had private insurance. No he was a flake.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Steve - I can't have any of that stuff - only in my imagination! So i will imagine having a party with you guys while Greta drives me to CA!
I knew medicare wouldn't cover anything but I had no idea he wouldn't treat me. I should have been told. He didn't say he couldn't do testing at IGENEX. He just wouldn't. I think he is too arrogant to use another lab other than his own.
Besides that he would miss out on a lot of money. The tests he told me to order were a LOT of money. One of them was $800.
If you have had bartonella before you know what it feels like. Classic symptoms of bartonella hensalae are sore soles of the feet in the AM, irritation/rage/anxiety, depersonalization and insomnia.
41% of cats carry bartonella and remain asymptomatic. I have a cat that has diabetes. According to a UK vet study 44% of cats with bartonella developed diabetes because it can attack the pancreas. I gave my cat a shot and then accidentally stuck myself with his needle. I got sick. I was doing well before that.
I think it is a no brainer but apparently the doctors I have seen have less than no brains.
If he cared he would have sent a test to IGENEX.
So I ordered Bactrim DS. I may tell that NP to either send my blood test to IGENEX or expect some trouble from me because she has gotten over $2000 out of me, not to mention the cost of this trip. She promised to do an IGENEX test. I am going to hold her to it.
Should I stand up to these people or just go somewhere else. The problem is somewhere is a long way away.
I really feel abused but that is what happens when you have this disease.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It could be that Medicare does not have a code for the infection in this case. No code, no coverage ?
And "research" doctors may not have the authority to diagnose or treat.
There are likely some hoops that were not all out in the light before your eyes. I'm sorry that you went through all this to be disillusioned.
I've traveled far a couple times and was totally caught off guard.
But Medicare has also refused to pay for many things, even a broken bone in my foot. Told the doctor to just "write it off" -- all over a minor glitch on their reporting requirements. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Warning: catty (ha ha) message ahead-
Perhaps if he knew how much you talked about protomyxzoa and brought it to light to people with infections,
and as a result lab tests ordered $$$
You would have been comped! VIP treatment, green smoothie served, whatever can I do madame...
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Neff-These are fat free lentil patties shaped like chicken wings and baked Yam fries
And you can have the whole back seat of my car to yourself if you need while I try to navigate my way back to Montana.
PS. We may take a slight detour to pick up Steve and Pam, and also to check out the 3-Toed Sloth, but we'll get you back to Montana sometime before 2020.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Keebler's last post was probably what happened.
If a researcher comes upon a new pathogen that you obviously have, say "borrobabesiprotobart" that hasn't been acknowledged yet, thus no dx code, therefore no coverage by any insurer.
Sooo, why is even seeing pts then?
He either needs to be a researcher or clinician... not half of each.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I believe if I was you...I'd start pushing that ND to order the Igenex testing. Because of Medicare I paid $0 for Igenex which included babs and bartonella, some other co-infections.
I didn't waste time doing lyme. That was positive years ago, so why bother. I can't get a positive bart or babs.
So frustrating because I have a strain of bart, no doubt in my mind. Babs I've been iffy about for almost 15 yes until about 6 mths ago.
Some sx popped up that hadn't occurred since early days with vertigo and weird headaches lately. Some of the bart sx all these years might have been babs.
It's all so confusing and overlapping in all these bacteria(s). So Neff, clinical is still the way to treat. Testing is very poor % and the mutations that are happening within these bad guys is making it even harder to get positive.
I believe that research that went out recently on felines, bart & diabetes was about mutation also?
It seems to me it would be easier to test the cat. Since vets are so much more advanced in testing and finding these strains.
I'm going to copy/paste a bart write-up off my lyme support group page. It might be helpful and just maybe a phone call to these vet that gets it. maybe he could speak with you about it.
Here is some writing from a vet that knows the bad guys.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6479 | From Louisville, Ky | Registered: Jan 2002
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Rumigirl
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Member # 15091
posted
Oh, how awful neff, I'm so sorry that this happened. The number of times that some version of this has happened to us is an unreal #!!!
I don't know what the answer is, other than to treat yourself, but whatever you need to do, you need to do.
It's unreal that you, and many of us, have to be our own doctors and everything else that is needed.
If I were you, I'd go punch some pillows and yell your heart out into them----and/or cry your heart out. What a mess this whole thing is for so many, many people.
Posts: 3778 | From around | Registered: Mar 2008
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posted
Sounds terrible. I'm confused - have you had tests done through IGeneX or not? It's free for anyone on Medicare. If you haven't had one done, any doctor can order it, even if they don't know anything about Lyme.
The test results go back to them and you get a copy, which you then take to someone who knows what they're doing. That is, if you want tests done.
Posts: 13117 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Igenex does not do that particular test. I think the AZ lab is the only lab looking into that one (FL 1953, I think it's referred to). And likely why it's not on any insurance code.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I once traveled 3,000 to see a doctor I thought was a LLMD, but turned out not to be. I had read an article about him treating someone previously diagnosed with CFS who was then found to have lyme. The author of the article stated that the doctor would treat her for as long as it would take.
Wrong. I got there and, while he was certainly much more lyme aware than most, he did not believe in more than 3 weeks of antibiotics and he also did not believe an ANY herbal support supplements.
Still, he was brilliant about some things and I wanted to learn at least what else I might with phone consults but they turned out to cost a great deal (and I know they are still taking their time and giving their expertise but beyond my means . . . and no Medicare coverage for phone consults.
This was over a decade ago, so he may have since grown since regarding lyme and TBD. That was before LymeNet, before I even had internet access -- only one book had been published about lyme at that time.
He told me, with the lyme bands on my Western Blots, the dreaded specific HLA gene (I forget the letter?) (nice that he did that test) my history, symptoms, etc. that I just needed to accept that I'd be very ill the rest of my life but he could help in one way, neurotoxin reduction.
And he was not at all in line with ILADS, although some ILADS doctors do incorporate that one part of his protocol regarding reducing toxin levels.
He did take Medicare, though, but in the end it was of no help whatsoever and the trip was very hard on me in many ways. So disappointing. I could find no other doctors to treat lyme, covered by Medicare & who was located somewhere where I knew someone I could stay with (no money for hotels).
I will never believe what I read in just one article, from one author again. I consult many different top sources now before I do anything.
BTW, at an ILADS conference a year or two ago, one ILADS LLMD stated that the "dreaded HLA gene" need not be so dreaded, that they did see some get better even with that marker. Nice to hear. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Can I meet you in casper?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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GretaM
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Member # 40917
posted
Yep! You bet Randibear! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Oh I see - you're referring to PR1953? I'll be back later with some info from a friend about it.
Posts: 13117 | From San Francisco | Registered: May 2006
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Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
Another Lymemare St. I feel like I could win the Javelin Throw at the Lyme Olympics / Oh-Limpicks
But remember the Drs are being controlled buy yes buy the CDC FDA AMA
I had one of my first Drs pat me on the top of my head and said its a false poss. The he wrote a script for sleeping pills. I said No because that's all I do is sleep. He was just trying to shut me up and leave.
Try and find the Yolanda story. It's on here somewhere. So can any of you all help this person find it. Thank you
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Annie,
Yolanda is NOT being treated by an ILADS LLMD or LL ND. Never has been. Too bad, she is such a lovely person. I hope she finds a truly LL and TBD-Literate doctor soon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Yeah Annie,
Sadly, with all of Yolanda's resources, she hasn't been treated by ILADS.
I shudder to think what the "Electroshock" clinical trial was about.
I sent a tweet (or whatever it's called) to her about Dr H's book...never showed up
posted
my theory is that Yolanda is being treated w/something similar to a rife machine but on her head?// not ECT. That would be ridiculous.
She's concentrating so much on "brain function" which in most lymies is visible with MRI and Spect Scans, etc. Showed on mine.
What pulsing the brain has to do with a disease that is overall body/brain infection confuses me?
I know she mentioned she has fatigue, but not much about pain in bones, muscles, nerves, tendons and skin. I thought all of us had all of these effects from the spirochetes.......but then it took almost 15 years to identify I had lyme.
Mine started as fatigue and vision/hearing probs and then rest came attacking my whole body as it bounced around and destroyed me.
Yolanda did advise one twitter follower to seek an LLMD, so she knows the term. Not sure if her doc is one.
Sounds fishy to me..but I'm following in case she does find a solution w/her wealth, contacts and fame.
Anyone wanting to read her Twitter doesn't have to sign up for it...I didn't, but I can read her tweets and she does talk about lyme a lot (see web address below).
Note her latest photo of a dress for the Grammy's.
My husband said, her eyes look just like mine in that you can see the pain and illness showing. Amazing what tv makeup can do to hide it...I certainly can't.
posted
Oh Neff, it's very late and I can't even wrap my head around what just happened to you, or find the words for your awful treatment by doctors again and again.
Posts: 431 | From New England | Registered: Dec 2011
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lyme in Putnam
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Member # 11561
posted
I just saw this neff. I'm so sorry. What about cowden , a lot of people are doing. Byron white. I find, went to antibiotics and then bicillin. I'm on the titanic. Pm, write, you've been an inspiration yo me for what you've been through.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Not any type of rife machine I've ever seen. That looked scary to me.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6479 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I had the same thought about that machine up to her head. Not a rife.
A rife would be an excellent option but not sure why that was not explored.
I would like to know more about that machine but it's not found with a basic web search. Still, I hope that - maybe - this will be the ticket.
I do wish her well yet have some concerns about this new intensive action (would an ILADS expert agree?) and the fact she has never consulted an ILADS LLMD or LL ND (which would be more likely for her given her past choice, a naturopathic doctor with ILADS training).
I hope she finds her way to a workable plan. I also know that she must be very scared about all this -- and my guess is that it does not help that she is so out in front in the public. I cannot imagine how stressful that must be. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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