I have been to a FFC Clinic. I am from Florida and went to the Atlanta clinic. That is where they diagnosed my Lyme/Ehrlichia.
I really like them. However, it is VERY expensive!! My first visit was $1,000. They do not accept insurance.
They gave me lots of things that other doctors would not. Thyroid meds, adrenal support, diflucan, progesterone, and help with my disability at work.
They were a god send to me.....I went there because I thought for 20 years I had chronic fatigue and fibromyalgia.
Posts: 893 | From Florida | Registered: Dec 2008
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Keebler
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I called a F & F center here when they opened. In my state, they will not treat lyme. Each state (or country, in your case) may differ. Some here say their local F & F center helped to dx lyme; others say many supplements without attention to the underlying cause. I don't know if you are talking about F & F centers or some other CFS clinic.
What some CFIDS researchers do is fantastic in the area of mitochrondria damage/repair and cardiac insuffenciency (sp?)
However, if you have lyme and they do not treat the lyme you will not get better. This is key.
Some supplements used with CFS are also used as support with lyme but if infections are present, they must be adequately addressed.
Discuss with the doctor the full range of his knowledge and the full extent to which s/he would be able to treat. Has this doctor worked with other lyme/TBD (tick-borne disease) patients before? If so, successfully?
Still, this comes down to being assessed by a seasoned LLMD for lyme or coinfections. It's best to be seen by someone who has experience with hundreds and thousands of patients with tick-borne infection.
Tests alone are not enough to diagnose and I hope you can find a LLMD who can help figure out what is going on.
All that said, I've never been able to work with a LLMD due to access issues in my state and the state of my finances.
So, you might just get lucky with the CFS doctor. I don't want to write off any group across the board. Just do your homework.
You might ask at your local lyme support group, if others have seen this doctor.
Perhaps, too, that doctor may want to establish a relationship with a LLMD or explore becoming a member of ILADS. ILADS has training for doctors.
ILADS - International Lyme and Associated Diseases Society
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I know I have in my file a medical article about CFS turning out to be lyme for many patients. I can't find it right now but will look after I get some breakfast and rest a bit.
posted
I went to the FFC in CT back when I was searching for answers to my illness. Big waste of time and $$. The Doc there didn't think I had Lyme. Said she wouldn't test me for it until the 31 vials of blood they took came back. This would have required another office visit which I would to had to pay out of pocket for.
It's helpful to go for the testing, but they're going to try and feed you a ton of supplements that they sell. I wouldn't recommend them for long term treatment.
Keebler
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I'm sorry to hear that 2 years of abx has not helped the fatigue.
Are you getting treatment with a LLMD?
Are you on the ILADS protocol or Burrascano's? I guess what I'm asking is if you are getting combination treatment that also addressing the cyst form of lyme. Sometimes, changing the combination can help.
Have coinfections been assessed?
In addition to TBD (tick-borne disease), there is Cpn to consider. And HHV-6 (which some CFS researchers acknowledge). See Timaca's list below.
Are you getting adrenal and liver support, too? The Singleton book addresses that in detail.
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This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
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If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
And, all that considered, it can take years for fatigue to get better, even under the best circumstances with the best combination of treatment.
You might also check out books at Amazon on Rhodiola - and other "adaptogens" to gently help adrenal function. Singleton's book discusses some of that.
Keebler
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While, very often, CFS turns out to be undiagnosed or under treated lyme - or other chronic stealth infections, this information may be helpful to patients across the board.
Mitochrondial failure is also one result of lyme. There are things that can help, in addition to treating infection. Hawthorne, magnesium are just some helpers.
Respect for what the body is going through is of great help, too. I used to be so angry at my body. Now I realize that it's really do a fantastic job in light of all it has to overcome - with very little support.
Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome
Journal: Am J Med Sci. 2003 Aug;326(2):55-60.__Authors: Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH.__
Affiliation: Department of Neurosciences, CFS Cooperative Research Center, University of Medicine and Dentistry of New Jersey, Newark, NJ, USA.
BACKGROUND: Findings indicative of a problem with circulation have been reported in patients with chronic fatigue syndrome (CFS). We examined this possibility by measuring the patient's cardiac output and assessing its relation to presenting symptoms.
METHODS: Impedance cardiography and symptom data were collected from 38 patients with CFS grouped into cases with severe (n = 18) and less severe (n = 20) illness and compared with those from 27 matched, sedentary control subjects.
RESULTS: The patients with severe CFS had significantly lower stroke volume and cardiac output than the controls and less ill patients.
Postexertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance) and were predictive (R2 = 0.46, P < 0.0002) of lower cardiac output. In contrast, neuropsychiatric symptoms showed no specific association with cardiac output.
CONCLUSIONS: These results provide a preliminary indication of reduced circulation in patients with severe CFS. Further research is needed to confirm this finding and to define its clinical implications and pathogenetic mechanisms._
- Link to full article at PDF. , . or Google first half of title for other formats
Cardiac Insufficiency Hypothesis - article and many links, including to: Pittler MH, Schmidt K, Ernst E.,
Hawthorn extract for treating chronic heart failure: meta-analysis of randomized trials. Am J Med. 2003 Jun 1;114(8):665-74.
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It's a tiny screen, but you can see this right on your computer for free (if you have high speed). You might find this on DVD, too, if you search around.
Video: A three-hour talk by Dr. Cheney on diastolic cardiomyopathy and ME/CFS.
CFS and Diastolic Cardiomyopathy - Paul Cheney, M.D., Ph.D.
======================
New Research on Cardiac Insufficiency
several articles
There is new research from a New Jersey team, authored by Doctors Arnold Peckerman, Benjamin Natelson et al., which found
left-ventricular dysfunction following exertion and orthostatic stress in patients with myalgic encephalomyelitis/chronic fatigue syndrome.
. . . Peckerman and Natelson found that low cardiac output correlated with symptom severity in ME/CFS.
Dr. A. Martin Lerner . . . Viral infection persists in the heart, causing left-ventricular dysfunction, producing exercise intolerance. Exercise, in turn, worsens the cardiac dysfunction.
. . .
More recently, physicist, physician, long-time ME/CFS researcher and clinician, and heart-transplant recipient Paul Cheney, M.D., Ph.D., has offered an alternative theory that
a subset of ME/CFS patients suffer from a diastolic cardiomyopathy, a problem with ventricular filling
resulting from mitochondrial dysfunction and low ATP energy in the heart.
=====================================
Again, presented not to sadden, but if there is a dysfunction, treatment for underlying causes and employing support measures can make a difference.
the link to the Hawthorn research above holds hope. I feel so much better when I take that.
[ 15. January 2009, 02:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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This book is specific to lyme and other chronic stealth infections.
The author discusses the endocrine connection and effects of cortisol from the stress of this illness.
The Singleton book (linked above) also discussed the importance of the endocrine connection.
You can read customer reviews and look inside the book at this link to its page at Amazon. While the title is grim, it holds key information in what can help.
posted
Keebler, you deserve an award for all the help you give people on lymenet.
I would just like to add that some lymies who have chronic fatigue problems have been helped with low dose naltrexone.
Posts: 8430 | From Not available | Registered: Oct 2000
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Ditto on what the others said about the CFS clinics being a waste of money. I have not been to one myself, but thankfully because the negative feedback I read about the FFCs and the Holtorf clinic (which is think is affiliated with the FFCs).
A few months ago, someone posted asking about Holtorf's clinic and some people responded with their experiences. If you do a search for "Holtorf", it should come up close to the top.
Since you are already treating for Lyme, I recommend getting supportive treatments with a Lyme-literate (or at least Lyme-friendly) naturopath or holistic MD.
Posts: 408 | From California | Registered: Apr 2008
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Keebler
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Lou,
Thanks for your comment. I just pass along others' works - or what others have shared with me in my quest to conquer fatigue when it became crystal clear that pushing harder is no longer possible.
Good mention of naltrexone - in Singleton's index, it is listed as being on over a dozen pages.
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