This is topic Increased Lyme testing for CFS/Fibro patients in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/39520

---

Posted by lymebites (Member # 6709) on :
 
In my decade-long "name-that-disease" odyssey my first dx. was CFS. I still get the "Remedy Find" newsletter and just read the December issue - can be found at http://www.remedyfind.com/newsletter_archives/Dec_05_CFS.html.

Was heartened to read that the Fibromyalgia and Fatigue Center (FFC) is opening labs in several cities to concentrate on testing/assessing hormones, thyroid, adrenals, Candida, infections, vitamins, etc.

BEST OF ALL, Lyme disease testing is offered without the bat or roll of an eye!!

Not surprisingly, in this issue, a frequent contributor found that she "also" has Lyme disease on top of her CFS. She writes: "Finally and most importantly, I came back positive for Lyme disease on the IgM portion of the Western blot from IgeneX; just this past week I have started taking doxycycline, which I will pulse with Flagyl and a few herbs."

Hooray! I've followed her story and always wanted to contact her and say "hey, I think you might have Lyme...check it out!!" Every single CFS 'story' I've read has ALWAYS made me think: LYME DISEASE.

My doc, Dr. C., says that he's found that when a person with Lyme suspects the disease in another they are rarely wrong. This said when I told him I think my mother has Lyme. She insists she's just 'getting old' and won't be tested.

Apparently these FFC tests don't come cheap. But at least Lyme disease testing is inching onto the CFS radar which can only be good for all of us.

For more info. on the FFC, see
http://www.fibroandfatigue.com/.

Lymebites
 

---

Posted by karatelady (Member # 7854) on :
 
Lymebites,

I go to the FFC in Atlanta and finally felt validated. They took 23 vials of blood on my first visit. Usually the lab on site is Quest so most of mine was paid by my insurance.

They send you a 24 page questionnaire before your first visit part of which helps them determine if candida is a problem.

The doctor spent about an hour with me listening to me and answering all questions treating me like a human being!

At the next visit tested me for hypercoagulation through Hemex labs and began Heparin treatment along with Lumbrokinase.

Then they did lyme testing through Igenex, also tested for co-infections and viruses.

I am now on Zithromax/Ceftin, Samento, Cumanda, Artemisinin, Heparin shots twice a day, bio-identical hormones for thyroid, cortisol, estrogen, progesterone and testosterone and a slew of supplements including probiotics and sleep meds.

They are very thorough and treat the whole body building up the immune system while attacking lyme, co-infections and viruses.

Sandy

[ 04. December 2005, 07:24 PM: Message edited by: karatelady ]
 

---

Posted by lymebites (Member # 6709) on :
 
Thanks Sandy,

This is all new info. for me. Am going to check to see if the FFC has a lab anywhere near me.

Encouraging!!
 

---

Posted by karatelady (Member # 7854) on :
 
People actually fly in from all over to go to these centers. I met a woman about a month ago who had flown in from the Caymen Islands.

They are fairly new (about 2 years old I think) and don't have the luxury of experience a lot of the LLMD's have but they seem to be learning fast.

I think headquarters is doing a lot of research on lyme since so many with FM/CFS are testing positive for lyme and co-infections plus the viruses that go with it.

Sandy
 

---

Posted by aliyalex (Member # 6976) on :
 
So which of these is the treatment for viruses?
 

---

Posted by FoggyLikeLA (Member # 8170) on :
 
I would just like to add that any Lymies here in Southern Cali would benefit, the Medical Director of the FFC is Dr. H and he is based here in SoCal. I have just had one visit and my expierience is pretty concurrent with everybody elses. Combine that with the fact that they much of their testing and treatments are covered, one day hopefully my suffereing will be over. They are very open minded there and they do a whole bunch of research before they conisider administering a certain treatment.
 

---

Posted by Lymetoo (Member # 743) on :
 
That's great news! I'm glad to know they are using Igenex. Do they all use them??
 

---

Posted by Boomerang (Member # 7979) on :
 

quote:

---

Originally posted by karatelady:
Lymebites,

I go to the FFC in Atlanta and finally felt validated. They took 23 vials of blood on my first visit. Usually the lab on site is Quest so most of mine was paid by my insurance.

They send you a 24 page questionnaire before your first visit part of which helps them determine if candida is a problem.

The doctor spent about an hour with me listening to me and answering all questions treating me like a human being!

At the next visit tested me for hypercoagulation through Hemex labs and began Heparin treatment along with Lumbrokinase.

Then they did lyme testing through Igenex, also tested for co-infections and viruses.

I am now on Zithromax/Ceftin, Samento, Cumanda, Artemisinin, Heparin shots twice a day, bio-identical hormones for thyroid, cortisol, estrogen, progesterone and testosterone and a slew of supplements including probiotics and sleep meds.

They are very thorough and treat the whole body building up the immune system while attacking lyme, co-infections and viruses.

Sandy

---