posted
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 **
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!
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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!!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
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.
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Street,
I just wanted to say HI!
On Prohealth I am Nanie46.
Hope you find the right Dr.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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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!
Posts: 770 | From USA | Registered: Jul 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
LLMD
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
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.
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posted
My cousin used to have CFS... until she found out it was really LYME.
Glad you like it here, street!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
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NJ08534USA http://www.lymenet.org/
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