nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I got the test at F labs where they photograph your blood. Unfortunately they did not say what exactly was in my blood and when I called the lab, they told me to have my doctor call and speak with Dr. F.
The GP I asked to order the test for me is so apathetic he has never pursued anything for me. I decided to try another GP and she refused to treat me saying she would refer me to an infectious disease doctor. That was nearly 3 weeks ago. I just got the call today. The appointment is in December.
In the meantime I had an appointment with an NP which is surprisingly lyme literate. The only problem is none of her treatment is covered by insurance (I have medicare) and it is very expensive. So far I have spent $1000 on the first appointment and tests. I was told she had a conference call set up with F, which is good.
So I am worried I will be dismissed by the infectious disease doctor, just like all the other mainstream doctors I have seen. I am wondering if it is even worth keeping the appointment. PR is probably considered complete quackery by mainstream.
I have some test results from two years ago that are abnormal. One of them indicates blood parasites. I also have the CDC positive tests for borellia, ehrlichia and babesia duncani. Isn't that proof that this is real?
If I keep this appointment, I am afraid I will tell him off if he tells me there is nothing wrong with me. On the other hand, I need more testing and it will be expensive if I don't get it through medicare. F lab said I have something with "motility" in my blood and stippling on my red blood cells.
As there are pictures clearly showing these things, how can a doctor say it isn't real? I need to know what it is and get the right treatment. The NP should know what F thinks I should get tested for. Will the infectious disease doctor agree to test for it?
-------------------- 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
This is one of those situations where it is up to you how much info you share with the I.D. doc.
If you take the old test results and say you have never been treated -- couldn't afford it or some other reason they might believe that -- then they probably would give you the standard 28 days of doxy for lyme and 7 days of mepron and Zithromax. Or you might only get 10 days of doxy for the ehrlichia.
Or if the doc is a real by the book person then they will retest the things you were positive for before and you will not get any treatment unless your tests come back positive and you make a 2nd appointment.
As for ordering tests from Fry lab -- highly doubt that would happen -- they are a reference or research lab and the doc will probably only order tests from Quest and LabCorp or maybe their own hospital lab. If you brought a test kit from Fry Lab to your appointment there is a remote chance you could get the doc to sign the orders.
If insurance will pay for the appointment, then I would go -- but just be prepared for a possible negative outcome.
If you have any abnormal bloodwork such as sed rate or ANA or other tests, you might be able to get some testing to at least rule out other things.
Or maybe you had a new tickbite ????? -- that might get some results.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks. I actually believe I am in remission as far as borellia goes and probably babesia, although the stippling might be that. Stippling can be anemia (my blood count is normal), lead (I am getting tested for that by the NP but previous blood work did not show elevated levels) or a parasite.
I really need to get the toxins, heavy metals and infections taken care of so I can stay in remission longer. I am concerned I may have an infection that I never tested for or treated.
I don't want or need doxycycline again - or mepron. I would tell him I don't believe I need to be treated for "lyme" - borellia. I hope this doctor can understand that. He would not be treating "chronic Lyme" that is so hard for them to accept. They would be looking for something else. Can they open their minds to multi tick born infections - or like you said, maybe I would get further if I said I just have something else from some other source
Dr. S told me I could be infected with Ehrlichia over and over because horses carry it and if a fly bite them and then me, I would get it again. Also the cats carry toxoplasmosis and I could get that cleaning out their litter box. Normally a healthy immune system would keep you from getting sick but mine was overwhelmed with so many infections, anything normally eliminated might get a hold
I am sure Dr. F's PR will be more than his mind can handle because it hasn't been published and accepted. But if my blood work shows a parasitic infection, wouldn't he ethically be responsible to find out what it is? I want him to re-do those tests to see if they have changed. I am not worried about it being normal.
-------------------- 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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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It's unlikely that he would accept F's results, but I guess you could try, as long as you are prepared for a likely negative outcome on that one.
You would just have to keep your cool if he gets dismissive in terms of implicating F, etc. Sigh.
good luck with it (seriously, not sarcastically);
Posts: 3771 | From around | Registered: Mar 2008
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nefferdun
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posted
I know. My expectation is it will be a complete waste of time. I am kind of worried - don't want to put the CDC's gun sites on the NP or Dr. F. - so I won't tell him much about them.
I know I will probably want to dive off the deep end when he tells me there is no lyme in Montana. I think I will bring the newspaper article from 2004 along with me. The state epidemiologist collected 345 ticks that had bitten people, and 6 of those people got the EM rash.
I am angry already just thinking about what he is going to say and do.
-------------------- 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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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Unfortunately the reality is, attempting to get things covered draws the attention of the insurance companies. For that reason, we don't submit any doc visits. It's a tough choice for us all.
Trying to get the insurance to pay for anything lyme related has been such a hassle, we just pay for it ourselves. If we can't afford it, we don't get it. That actually opened my eyes to try something new and go after parasites (thank god I did).
If you go to the ID doc and he says you don't have lyme (likely) then you will have to be prepared for insurance denying you any treatment related to it. So it would have been worse to go to the ID doc. It's a risk. I'm not sure what would happen here. Unfortunately, I don't know of any ID docs who "gets" lyme. They are trained to dismiss it. Once the insurance companies are onto your case, it's a constant battle to prove things afterwards.
As far as your amalgams go (not sure how many you have), some people who've never gotten their amaglams out are fine after treating lyme and company. The fact that you can eat so much sugar tells me that the metals might not be a problem for you. Metals = yeast. You can eat more sugar than any lyme patient I know. So maybe that is not your issue.
I've chatted with people who actually detoxed metals out (never had amalgams) yet are still very sick. The same with people who've had amalgams removed. It's a shot in the dark. It really is so complex. Lyme is usually multiple issues. Maybe Doc H's new book (due out this month) will help guide you. At least the things you're doing to improve methylation help. You're ahead of the game here.
I would treat for other parasites if I were you. IMO, we all have them. They are part of this earth. Iver doesn't cover everything. It's a good broad spectrum med, but this is probably why Dr. K uses multiple drugs. Also, rotating them is important. It seems like rotating anything and everything helps me. The bugs adapt (same as lyme does).
Also, not sure if you have babs, or perhaps it went into remission on you, but for people with babs, my doc discovered that the worms don't easily exit. It takes lots of attempts at killing parasites off to do this.
Neff, I wouldn't go see the ID guy, but that's just me. I would just stick with your NP. :)
-------------------- --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
I have a feeling it is a bad idea. In fact, over a year ago the GP I had been seeing recommended that I go to him and I refused. The GP said he told the ID doctor I had lyme and he was will to see me but I did not trust the idea. Before that, I had an appointment with an Internist who refused to treat me and recommended I see an ID doctor. I just continued to treat myself as it was obvious no one was not interested in helping me.
If my appointment goes well with the NP, I will just cancel the ID. I am kind of worried if I make too big a stink they will target me or someone else like F or the NP. It would be very difficult for me to keep my mouth shut if he were to say lyme does not exist in this state or it is easily cured and I have residual damage - especially when I have blood tests showing otherwise.
Sometimes I just want to have a big confrontation with one of them and tell them off. Deep down I know they won't do anything to help me so I think I am just setting myself up for a fight I won't win. If I insulted them too badly (which I am sure I would do) then they might come after me.
I am very close to remission but I have missed something. Yes I treated babesia - babesia duncani, bartonella, ehrlichia and borellia. I treated five years with doxy, ketek, levaquin, rifampin, bactrim ds, biaxin, mepron, zithro, coartem, malarone and other drugs I could not tolerate very long.
I used huge amounts of herbs- Zhang's, Cowden's, Buhner's, and many others. So tired of it! For parasites I have also taken mimosa pudica, Alinia and wormwood. I have albendazole and I have taken it once.
I hope this NP does not disappoint me. I can't believe I paid $600 for the test from F labs and still don't know what is in my blood. What is moving around between the blood cells? What causes stippling? What do I need to test for? Worst case scenario I will have to get on a plane and fly to AZ to find out - hopefully find out.
-------------------- 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
- An NP who works for an ID doctor will likely not be able to do anything the doctor would not. They would be even more guarded in their decisions, I would think. They have to answer to their boss, after all. And they've been trained by them, too, regarded the scope of their office practices.
Anything out of the typical, they would likely need permission to implement or authorize.
We want to think that a NP can think outside of the box, and often they can. Still, the box in which this one works is clearly within IDSA ID constrictions.
Their job is on the line if they cross it and that comes before any patient ever will. Their job description does not state: be open-minded and explore all avenues and possibilities. They still have to "go by the book" - the one they have, not you.
Be clear exactly who they are, their skills and power - independently of what you want them to be.
Have you been able to research them by talking to area support groups, seeing what papers they may have worked on, etc.? Their mind-set?
Still, there are other ways to find the answers you need. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Years ago, I thought I might be able to side-step an ID doctor who was so against lyme and get treatment with one of the (new to the city) residents on his staff. No way. Hands were tied, so tight.
I had no other option at that time but it worked out to be a terrible decision on my part in so many ways.
You ask how they can ignore what's seen in bloodwork? They can. They call it "artifact"
I wondered how they could discount seizures that happened right before his eyes. He could. And did. More than once. It took me several appts. trying but no help at all.
It cost me in energy, self esteem and physical wear and tear. Even though, I never fought, was always "professional" and mild mannered . . . they labeled me "wacko" ("difficult patient") in my medical file. That changed how other doctors - and ER staff - saw me from there on out.
ONLY if you have reason to believe that this NP can offer you a clear plate, would it made sense to test the waters. YOu need some indication from various sources though so it's not just a roll of the dice. This kind of gamble is usually lost.
Determine the odds first. You know who you want them to be. Now find out if that is true before jumping in that water. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
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Member # 40917
posted
Neff-i don't know what advice to give you except the ID docs in BC are of the mindset that lyme is hard to catch and easy to get rid of, that bartonella is very rare.
I've also been told that they reference Montana's lyme rate (non-existent?) to exclude lyme dx in other areas of BC.
I just think that if all the ID docs in BC are of the mindest, and no one on lymenet has had a good experience with an ID doc....then the one you have an appt with is probably of the same mindset.
It will get you angry, and getting angry will get you ill...
I don't submit anything to insurance either, because I don't want the word lyme to prevent me from getting healthcare for other things if I need it.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Catgirl
Frequent Contributor (5K+ posts)
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posted
quote:Originally posted by nefferdun: For parasites I have also taken mimosa pudica, Alinia and wormwood. I have albendazole and I have taken it once.
It doesn't sound like you've treated enough. Some people have to treat constantly. I did for a whole year and started seeing things a year later. They are there, even if you cannot see them. It takes a LOT of work getting them out, especially for people with babs. Neff, this sounds like your missing link (parasites).
-------------------- --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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Judie
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posted
"You ask how they can ignore what's seen in bloodwork? "
This is how (and I just went through this), the doctor will INSIST on retesting you for Lyme along with your other blood work.
This has been a disaster for me. I was CDC positive last year. I just got reinfected and am worse off that I've ever been (had the bullseye and everything).
Well, I'm now CDC negative (and am in the process of retesting to undo the crap from this last crappy doctor).
I wouldn't bring up the Lyme blood work at all with the ID doc!
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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posted
Could you call F labs and see if there's a doctor in your area that they work with?
My worry for you is the ID doc will be a big waste because if they don't work with F labs already, they will just ignore the results and use their own labs that they're familiar with.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Neff... I have to say, I think the ID dr. will not be the answer you're looking for. I'm afraid he/she will give you the 'deer in the headlights' look and not believe any of the blood work. I have the friend/dr up here in MT that I sat with and told everything about Dr.F and what all I've been treated for, and he gave me that same look. I know this dr. for years, so he knows I'm not 'crazy', but he really didn't buy it, but said he would do whatever as it didn't seem like a 'scam' with how Dr. F is treating me.
I wish you could come down to AZ with me next time, in Feb or March and just see Dr. F....
I know you want to do all the tests and find some 'answer', but we really need to be careful in who we see at this stage of the game. Until all of this is recognized by the mainstream, we're the 'weirdos' I'm afraid.
You do know that I have seen Dr.F for over 6 years, and I've never bought any of his tests. He has treated me without us 'seeing' the buggers. I am ok with that. I said one time to him that I should do one of his tests, and he said, why? I said so I can see my demon... he replied I didn't need to see it. So we are treating. He did see all my other tests that I had done way back when I was seeing Dr. H and my first MT dr. He has treated me going on what was on those reports and then my symptoms.
Hope the NP is the answer.... I vote for staying with them and not the ID.
Talk later!
-------------------- 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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