Topic: (WAS:crying.Drs drs drs ,so dumb.I can't take it)-FUNCITONAL MED DRs- are they all $
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
get my padded cell ready ....!!!!!!!!!!!!!!!
I am steaming!!!!!!!!!!!!!!!!
I called the hemotogolgist this moring.. thought she sounded like a great perspective match to help me with my B12 issues and my iron overload problems - both also found in my genetic profile-
her staff took my info and said the scheduling nurse would call me back.
I got a call back. a woman left a message and said that another dr reviewed my records (in the medical network here) and he said that my blood work looks fine and I don't need to be seen.
no asking me my symptoms!!! nothing!!!
what the H E double hockey sticks is wrong with all of these idiots!!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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momindeep
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I wish everyone could have a functional medical Dr...problems like yours would be addressed properly...you have had your share of doctor failures for sure.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Won't your PCP help you? I think most specialists require a referral.
Don't give up!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
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posted
I think you should call backand say yes you do need to be seen.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Member # 47170
posted
Most hematologists are oncologists. .i self refered to one to see why i had thrombocytopenia and low iron and he was one to mention lyme...
he did protien test said no lymphoma go else where...and you would think if one was to study blood he would have looked at it...hmm iron overload ...
can you do chelation of sorts the have a special heme process for that ya ?...try another office ...took 3 neuros to get eeg ...ducs are quacks ...keebs is more knowledgable that most...even my llnp has lyme so she is loosing it ...she did hormones at least...
...........................................
(breaking up the post for easier reading for many here)
posted
My opinion is you need to see a doctor who takes you seriously, and get a good referral to such. Possibly a functional medicine doctor referral? The Institute for Functional Medicine makes referrals.
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
lymetoo, I am leaving my PCP... when I tol d her my gene dr ( who is a ND and wont rx blood work) told me that my genetics shoe I could have B12 issues and also I have gentics for iron overload associated with hemochromatosis, she ordered me the single lab for B12 serum and wouldn listen to me about the correct labs to get for B12 or iron. she is not the brightest pineapple on the tree.
when I called the hematologist I did tell them that she didn't rx me the right testing. they just don't care.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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Member # 41384
posted
Jordana, I did call them back and told them I wanted osmeon to call me becaue they didn't even ask me my symptoms and that if they consider determining a B12 def just with a serum level then they are stupids.
something like that.. I don't even know what I said I was livid. they probably will tell me they will never see me even if I was dying now. haha. but not funny. it felt good to yell anyway. I am so tired of this B S.
Bluelyme, that is interesting... good you found someone. I hope I can too. I haven't lost all hope, but it is hard to hang in there.
thanks Robin, and Hoping... I will check that out- functional... I have been menaing to, but I can't remember anything any more!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
It really stinks. I hope you can find a real doctor somewhere.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
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Member # 41384
posted
thanks lymetoo
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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Member # 41384
posted
so FUNCTIONAL medecine---- I see the dr list is pretty long near me, so that is great! but, how do I know what to do? I mean I call and say what to them?
my mom says I tell drs too much and that is why they think im crazy. like no one can have that many symptoms and look as good as I do or with the seemingly ok blood results.....
so what do I say?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
do all these drs on the FM list know what they are doing? like, are they all going to be sort of the same? all of them are trained it says. so I hope they would be sort of on the same page. or will it be like any dr that I will have to shop around for the best for me? and I see they all specialize in different things - that is grreat.. like gyno, etc. and psych.
I feel excited about this
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Can you ask around to see who is good? Check their status on www.ratemds.com .. find a way.
PS.. Don't call and ask anything. Get an appointment.
Be prepared for expense.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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MichaelTampa
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posted
It is sad that doctor you had thought was a good prospect did not work out.
When doctors give responses like this, I really think it best to understand that they are saying, in the only way they can, that they simply cannot be of any help. No need to fight it, you may still need help of course, but if they can't help you, then they can't help you. It just means you'll need to look further.
Posts: 1927 | From se usa | Registered: Mar 2010
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LisaK
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Member # 41384
posted
thnaks Lymetoo
thanks Michael.....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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Member # 41384
posted
SO............
I found a list, checked it a few times and found someone I thought would be an OUTSTANDING fit for me. then I see her prices! Again- another dr $650 for the first visit with NO testing, then followups are $400, and rechecks are $275!!
are all the good ones like this?!
she sounds so so so great. I just can't swing it.
once again so sad. so discouraged. maybe I should just give up. take advil for the rest of my life and just suffer in silence.?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Jordana
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posted
Why don't you just contact that doctor and ask if she has a sliding scale? I mean a personal email or conversation where you describe your issues and situation.
What do you have to lose?
Posts: 2057 | From Florida | Registered: Feb 2015
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LisaK
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good idea Jordana! thanks
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Lisa K, I thought u were taking Monastery of Herbs. Didn't it work out with the bioenergetic Dr to clear many of ur infections cause I was going to get treated by a similar Dr using those herbs?
Posts: 9 | From Philadelphia | Registered: May 2016
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me
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Member # 45475
posted
LisaK. In some states doc's have to do a certain amount of pro bono work per year. Maybe you could inquire about that?
Posts: 1431 | From USA | Registered: Mar 2015
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posted
A functional Dr I used in West Chester pa helped me soon much.
Posts: 9 | From Philadelphia | Registered: May 2016
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LisaK
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Member # 41384
posted
phillytwin-- yes! you are correct. I was treated with a protocol similar to Cowden and I was cleared of ALL of my tick borne illnesses.!!!! yay!!!
I am NOW working on all the other "stuff" that needs to be put back in place so to speak. like my house that had gotten completely out of control with clutter and mess and dirt and disrepair,
my body is also feeling the ravages of all these terrible diseases in that it was thrown all out of whack and needs help just like my house.
I just had blood work for B12 def. and pernicious anemia. I found a lot out when I went to a genetic person and I am working on all of that to clean up all of this lyme damage aftermath.
some how somehting sent my liver in a crazy mode and I can no longer drink any alcohol as my liver does not process it any more. which I am sad about becasue I enjoy a drink now and then
my thryoid is still messed up . so that is another thing. and I still have heavy metal issues and also found through genetic testing that my body can't get rid of the metals which includes iron- so I am working on all that too.
thank you for asking!! hope you are doing well
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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me -- that is interesting! I wonder how I would find out who is doing this pro bono ??? I have in the past told drs that I have no money and that I will probably die without their help and (their recpetionist, etc) had no qualms in sending me away. haha.
I DID just finally think that maybe this fabulous functional medicine dr I found would work with a sliding fee scale so I did call and ask. the receptionist took all my medical info and said she would consult with the dr and call me back.
never heard from them. that was like 3 weeks ago.
sadly, this seems to have become the norm.- no calls back, etc.
I don't mind asking though, and next time I will about this pro bono idea. If you or anyone knows a good way to go about it please let me know! thanks!!!!!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
phillytown, I PM you about your dr
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
My current primary is supposedly a functional medicine doctor. Ha!
Just because they took the continuing education course doesn't mean they will actually practice what they learned or go on to do self-study.
I need to get rid of her, but until I find a doctor that actually cares, I am stuck.
A compassionate doctor who may not know everything, but isn't afraid to self-educate is sooo hard to find. I know they are out there, I have had the honor of being treated by a few of these awesome doctors.
Anyone know of any compassionate doctors in the Twin Cities, MN area? (Sorry for the hijack request)
-Ede
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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LisaK
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posted
Ede, I think I found a dr like that EXCEPT (can't teach an old dog new tricks) he is like 90 years old! bless him haha... so he really is open but at the same time stuck in old ways. if that makes sense at all.
I guess we shall see at my follow up in a week
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
You have pernicious anemia and hemochromatosis?
What is your hemoglobin, ferritin and TSAT% levels?
Do you have insurance?
Sorry for all the questions. For the HH I would go to a oncologist. That is where I am since I cut ties with NIH. While NIH is awful with lyme they are great with HH.
Posts: 832 | From Somewhere | Registered: Nov 2010
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LisaK
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terv, I found out years ago I am a carrier for H, but the new genetic findings are that even carriers are now recognized in that they can develop iron damaging illness- even death. so my genetic dr was adamant about me staying on top of this. not sure really what to do because no one seems to know much - just like lyme.
and the PA thing... also via gene dr found I don't absorb or utilize B12. my recent blood work shows that I went down 200 points in B12 in 6 months,, but still in normal range. not sure what this means, but...I feel horrible. like really bad like I am giong to die soon. I don't know what to do.
my recent results and where they were in Jan. - only including things that dropped.: Jan: Now: B12- 850 650 TSH- 2.4 1.4 ferritin 14 11 ALT- 28 25 Anion Gap-10 6 WBC- 7.1 5 MCV-94 90 Absolute Neotrophils -3 2
not sure what half of those are for, haha, and all were in normal range, but jsut seemed odd to me that so many went down, but many blood does that?
all i know is that i feel like crap. not sure i feel lyme-y crappy, but more like my body is shutting down or something. im probably malnurished becasue I have been avoiding all iron foods and glutamate foods which is most things to eat. so I have been eating meats and rice and a limited amount of veggies, sorry to say.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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what is TSAT% ??
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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While they don't recommend doctors they do recommend a way to find one.
If you poke around that website you will find a blog (not familiar with this) and an email list. When I was going through this I used the email list. Post about your b12 issue coupled with you HH issue People may have suggestions.
This website has a wealth of info.
Are you in menopause?
What is your hemoglobin or hematocrit?
If you had a CBC it should be there.
Posts: 832 | From Somewhere | Registered: Nov 2010
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LisaK
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no no haha sorry- ferritin was 14 in jan and now 11. I should have put more spaces between.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
That is good. I was envisioning weekly phlebotomies for a year for you.
As far as iron overload, your numbers look fine. Actually they are my dream numbers. I have to keep my ferritin below 50 in order to keep my TSAT% within range.
If you dont have iron overload then your ferritin is on the low side. I don't know the reference ranges.
Was it just your genetics that they used to diagnose iron overload? Usually people with iron overload have 2 copies of the C282Y mutation. If you only have one it is highly unlikely you will ever load iron.
If you didn't find it, here is basic info regarding anemia:
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