nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
and he did not make me angry. He was actually a fairly kind man even though he held to the CDC principles that borellia can be cured with a short course of abs and Bb is not here in this state (not that strain of borellia). We didn't get into that - thank goodness.
He agrees I have an infection and he is doing a full tick panel including tests for bartonella hensale and brucellosis. Maybe something will show up. If not, I will have to fly to AZ.
I have Medicare and supplemental insurance. This is the FIRST time any of my testing has been covered. Since it doesn't cost me anything, I thought I might as well give it a try.
They are going to culture some of the blood. They took two samples to double the chances of anything showing up. I had to have blood drawn twice 15 minutes apart .
If you see an infectious disease doctor being re-infected makes perfect sense to them, and they might not even require a test because if you tested positive before, you will always be positive.
I really do think I was re-infected with something else and I really do believe I am over borellia. He agreed I could have gotten something from many biting insects or my cats.
He said a local person was very sick and they couldn't get him to test positive for anything. He gave him a lab slip and told him to go to the lab to have his blood drawn when he had a fever. He tested positive for tularemia, which only tests when you have the fever.
-------------------- 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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posted
I saw 2 different Infectious D. docs in different Texas cities and both told me I couldn't have Lyme disease, no tests or anything, just their assumption.
They knew from my medical history I had been bedridden 9 years, failed biologic therapies for RA, and was extremely ill. They more or less discouraged me from seeking further Lyme treatment.
Most are not as Lyme friendly as yours, I am glad you found one showing interest.
Posts: 245 | From Texas | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Steve, I know who that NP is. I traveled to see her in 2010. I had treated borellia two years at that time and my symptoms were all bartonella with babesia emerging.
I had just started Bactrim DS and was finally, after a year, getting relief from the bart symptoms. She told me, "I always treat Lyme first" , meaning she has a recipe that begins with abx for borellia. Even though I had no symptoms of it, having quit having the 28 day flares a year before, she refused to adjust her thinking.
She gave me what she gives everyone - including Augmentin, which has a drug I had a reaction to, so I couldn't take it. She refused to prescribe Bactrim or diflucan, insisting nystatin was just as good.
I continued with the Bactrim, which is what got me over the bartonella. I knew babesia was a problem but of course she would not even consider addressing that. I didn't get drugs for it until I traveled 3K miles (round trip) to see Dr. S. That was nine months later after the babesia had taken over.
I was supposed to have a telephone consoltation with this NP 3 months later and they were supposed to call to remind me. No one called. The day of the call I was on an airplane flying to my mother's burial. When I got home and got her message I called to inform them what had happened. I was charged for the appointment anyway.
The NP I am seeing now works with two LLMD in CA but she is VERY RELUCTANT to do any testing or to prescribe any abx although she can. I made an appointment to talk to her tomorrow during my IV. She told me she has a patient whose husband tested positive and is not sick.
That proves her theory that getting the body in optimum health by removing heavy metals and giving minerals and vitamins will get rid of disease. I am willing to bet those patients tested positive on bands 41 and 23 which indicates they have protomyxzoa, which does not make you sick immediately.
She knows absolutely nothing about methyl cycle mutations and has no interest in knowing. Like the other NP, she has her healing cocktails. She isn't the slightest bit interested in F or how she could be contributing to disease by giving IV magnesium and calcium.
Everyone here is like that. I have to take control of my treatment one way or the other. I can't rely on any of them to make the right moves. When you are sick and can hardly think, that is like being crippled and trying to drag yourself up a thousand steps.
These people are making big bucks and even though they appear to be very sympathetic, their practice comes first and they won't do anything to risk getting anyone after them for treating chronic lyme disease. I am going to ask her for the fourth time to test me for bartonella hensalae at IGENEX.
I need to know what is causing this. My blood pressure has always been 60/120. When I had it taken at the NP's it was 76/135 and yesterday it was 86/ 135. When I say I feel like I am exploding internally I mean it.
The ID said F is not recognized so his lab and all of his work are just theories and not to be relied upon. He said the stippling in my blood could be caused from any number of things, including my thyroid or just old cells in the process of dying. So he wouldn't consider calling him.
He believes I was infected with Bb in another state some other time in my life and what I picked up from the tick here was something else. He said there are different strains and it was no specifically Bb. I believe that is ridiculous thinking but I got a test. It is the ELISA, which he considers 90% accurate.
It is sad really that a nice person like him, who seems to really want to help people, doesn't know the truth.
-------------------- 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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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
It is sad that he believes in the Elisa.
But I am very happy that your blood tests were covered, and I am very happy very pleased he was kind and respectful to you.
That puts him in 10% club.
I believe 10% of docs stay kind to their patients.
The other 90% lose the ability of kindness when they hang their stethoscopes around their necks.
Sorry but it's true, in my experience.
Who knows, maybe the conversation. You had with him, will plant some seeds in his mind and he will read more studies regarding Bb.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im glad you had a mostly positive experience and hope it helps you
im confused when they say if you test positive you will always test positive.
i did and now i dont
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
He said once you have antibodies, you always have them. That confused me too because I was positive for babesia and ehrlichia in 2010 and retested in 2012 and was negative.
i should have asked him about that but since it was IGENEX, he might have had something negative to say about that lab and I didn't want to go there.
i was very surprised that he was so polite and even more so that he was actually CONCERNED. I have never had that happen before. The other doctors couldn't wait to get me out of their office.
He treats a lot of AIDS patients. He is also testing me for AIDS and hepatitis - just in case he said. So he is being very thorough. I would like to give him the book about LDN for his AIDS patients but I know he will shut the door to that. He is very much dictated by the CDC guidelines.
It is sad people have to die because doctors are afraid to try something considered "alternative". What do they have to lose?
-------------------- 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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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
WHY did you go to an I.D. doc? A short course of abx is the IDSA "cry". (The CDC has no "recommends" as that isn't their job.) As for no Lyme in MT, have him READ the CDC data. Montana #s are low, but they ain't zero!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Neff, Glad it was a more positive appointment than we thought it would be.
Remember, I'll be going back down to AZ in Feb or March... we can coordinate that we are flying in at the same time and I can drive us up to Scottsdale. We can think about this.. if needed.
And yes, the NP in Bozeman doesn't even take insurance and costs an arm and a leg and half another leg! I tried to get a young girl in, to see her, and it was crazy how much money up front she was. I have had better luck with just GP's here in Montana treating me.
Ok... will be thinking positive thoughts and saying prayers that there will be some answers in those blood tests!
Hope you're feeling ok in this ultra cold weather we've been having! I upped all my B12 and D3 for sure!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm glad your doc is concerned. I guess you have to work the system getting blood tests and such. It doesn't sound like you will get much help regarding proto there though. You may have to travel to see Dr. F. I'm thinking of going to see him too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks hadlyme. That sound like a good plan but I may have to travel there in January if I don't get some relief before then.
Keta - we do what we have to. I am getting tested for FREE and if they come back negative, then I will get tested again through Dr. F. The tests with any LLMD will cost me thousands because they aren't covered by insurance.
If I know I have something, then at lease I will get some kind of treatment so I can then find someone who can continue it - or even buy the drugs online if I have to.
This doctor did a complete panel - things I never would have thought of like brucellosis. He is aware there are many infections I might have. He just believes they are easily cured.
He is also culturing my blood and doing two samples. They culture it to let it develop so it is more likely to get a positive test. Having two samples from different parts of my body (drawn 15 minutes apart) increases the possibility of picking up something.
Have you ever had a lyme doctor do that? I sure haven't, unless it was F labs and that is very pricey. I am not expecting him to do long term treatment. I am only hoping his tests will find out something.
I feel like I am hooked up to an electric outlet getting random shocks.
-------------------- 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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