i have an appt. with cfs dr., i found a dr. m, he want 750, ill call again and see what he covers, if he slso covers cmv. lyme, mycobactriuum, hhv6, cfs....i areally, really need to see a dr...
the cfs dr sees cfs pstients with hhv6, cmv hhv6 ebv, but im not sue of lyme, ill call today and find out. thy want 650, to do tests. 150 consultantion, and 250 each for some echo summagam and carido. i will tell them i need to be put on valcyte and monitor, i took 2 of these last night, i dont know if they are working, not feeling not to bad today yet...im really confused bout who to spend my money on....a lymd dr...or cfs dr..
i am waiting for an infectious desiease dr to get back to me, up to now they havent, call call later this morning, i really want to continue taking the valcyte that i have multiple in my home, but noone to moniter me. to checj my lab work weekly, i told i need that
** moderator's note, edited to remove doctor's name **
[ 12-14-2009, 07:20 PM: Message edited by: sixgoofykids ]
Posted by Munch (Member # 11323) on :
Hi Street:
Nice to find you posting over here. Aren't you from Prohealth?
I'd try to find a LLMD near you rather than waste more time with a "CFS" specialist. Just my humble opinion based on experience.
I tried the Detroit Fibro and Fatigue Clinic (FFC) 3.5 years ago. They tried to tell me I didn't have Lyme based on my Quest and Igenex testing.
Maybe try to reword your post here or check the "Seeking a Doctor" forum for past requests of people who live in your area of NY. I bet someone here can PM some names of other doctors to you.
You'll probably need to do AV (anti-viral), AF (anti-fungal) and Abx (antibiotics) like I did in order to get better. After you've been sick for a long time you pick up loads of bugs in your infectious soup.
Good luck!
Posted by seekhelp (Member # 15067) on :
I agree. Dump the CFS specialist. Dump the LLMDs who only treat one thing (Lyme). Go only to the very best, smartest LLMD you can afford who is smart as ####. Make sure the LLMD treats metals, viruses, bacterial disease, etc. Second best is a waste if you want to get well.
Don't see researchers. See LLMDs who have seen endless patients and check cure rates with real patients!!!
Posted by sutherngrl (Member # 16270) on :
Great idea from Seekhelp. Something I actually did, found ppl that my LLMD actually cured and had been cured for several years. It is much more encouraging to see a doctor that you know "cures".
I agree.......you are wasting your time and "money" on a CFS specialist. I don't even take a second look at any illness with the word "syndrome" at the end of it. That just represents a group of symptoms. There is a cause to these symptoms. Find a doctor that treats the cause and not the symptoms. That would be a LLMD!
Posted by Hoosiers51 (Member # 15759) on :
I remember you said in another discussion that you have Medicaid.
That should cover tests like an echocardiogram, etc.
I would tell the CFS doctor, if you see him, that you will only do tests that your Medicaid will cover. Hopefully that will force him to be creative, and refer you somewhere else to get those tests done by someone who might cover them (like maybe getting it done at a hospital?).
Can you find a CFS specialist who's appointment is covered by your Medicaid? Then you could afford to see the LLMD too.
Posted by street129 (Member # 23472) on :
MUNCH, YEA IM FROM PROHEALTH, NOTHING going on over there on lyme board...dead....here is alive and kicking, people here respond to your posts....refreshing.i love it here.
Posted by timaca (Member # 6911) on :
Street~ Find a doctor who will test you for lots of things, and then treat the most obviously wrong. That doctor might be an ID doctor, a CFS doctor or an LLMD. I started with an LLMD (great doctor), but he was not able to treat the viruses. So I am now with a great ID doctor that is doing his darn best to treat Infection Associated CFS (he's amazing).
You should not be taking medication, especially valctye without a doctor monitoring you.
Good luck, Timaca
Posted by Dekrator48 (Member # 18239) on :
Street,
I just wanted to say HI!
On Prohealth I am Nanie46.
Hope you find the right Dr.
Posted by Myco (Member # 9536) on :
Street,
Misdiagnosed with CFS for 10 yrs by well known CFS Dr. Treated with supplements, antivirals, with no progress, worsening symptoms.
Saw well known LLMD - Positive for Lyme, Bartonella, Babesia and Rocky Mountain Spotted Fever. On antibiotics and 100 times better.
See an LLMD!
Posted by treepatrol (Member # 4117) on :
LLMD
Posted by WildCondor (Member # 434) on :
a good LLMD will address all of these things at once. CFS is a one of the main symptoms of Lyme and these viruses are common with Lyme.
Posted by Lymetoo (Member # 743) on :
My cousin used to have CFS... until she found out it was really LYME.
Glad you like it here, street!!
Posted by Keebler (Member # 12673) on :
- yes, CFS is frequently caused by lyme.
I've posted many links explaining WHY you need to see an ILADS-educated LLMD and some links answering other questions of yours over at another thread of yours. Be sure to see these: