posted
In 2006, I spent about $10,500 on medical care at the Fibromyalgia and Fatigue Centers. For the first few months I felt great then crashed.
I sent an email to my FFC doctor explaining all the reasons why I thought I was mis dx'd. Their reply was to send the letter below with two $100 off coupons only good for doctor visits.
After the Quest test came back, I was started on Doxy until I could make the trip from central IL back to Detroit. The Igenex test was done 9 days after starting on ABX.
I herxed like crazy for 4 days then started feeling better. Changed to 100 mg. Minocin per Roadback.org protocol because I was getting a sun rash from Doxy.
My email said that I wasn't tested for every strain of mycoplasma known to cause disease in humans like m. fermentans, m. genatalium, m. genitalium, m. hominus, m. hominis and Ureaplasma urealyticum, m. incognitus and m. penetrans pirum. I was tested for just m. pneumonia.
This is the letter I received in reply.... I am in receipt of your email of 3/12/07 which was sent to the program manager. After reviewing your concerns I would like to provide you with additional information which may be helpful to you in better understanding the complexity of Lyme diagnosis and treatment.
The current state of laboratory testing for Lyme Disease is very poor. Even with the most sophisticated tests available today, the testing is far from perfect.
I have had professional contact and consultation with both dr. Raphael Stricker of ILADS and Dr. Nick Harris of Igenex and am well aware of the current issues pertaining to Lyme diagnosis and treatment.
During the last ILADS conference, which I attended, Dr. Harris discussed the state of lab testing for Lyme. For example, the study of the comparison of the frequency of antibody reactivity (positivity) to various B. Burgdorferi protein bands between Lyme patients, syphilis patients, and normal controls (non-Lyme) revealed positivity.
As you are aware, you had a positive 41 band on the Quest Western blot test. Because the 41 band is non-specific, the Igenex test was needed to provide further information as it is a much more sensitive and specific test. According to Ignenex your test was negative. However you had several bands which were indeterminate, both IgM and IgG.
You wrote that indeterminate bands are "clearly not negative", but I must point out that they are clearly not positive either. That is why they are called "indeterminate".
Furthermore, most Lyme Literate doctors would not treat according to these lab values alone. Because lab tests are imperfect and the symptoms of Lyme can be the same as Chronic Fatigue and Fibromyalgia, it would be imprudent to treat all CFS and FM patients for Lyme Disease.
Side effects of Lyme treatment can be hazardous and Lyme treatment must be justifiable. ILADS also discussed evidence-based guidelines for the management of Lyme. According to ILADS, Lyme diagnosis is a clinical diagnosis and tests should be obtained to support the physician's judgment.
In addition, please bear in mind that there is widespread misuse of the current Lyme Disease case surveillance definitions. The Center for Disease Control (CDC) states that, "the surveillance case definition was developed for national reporting of Lyme Disease. It is not appropriate for clinical diagnosis." One needs to be mindful of this when assessing for Lyme utilizing lab test results.
I'm not certain of the specific reason you are taking Minocin as it was prescribed by your primary care doctor. If you are taking Minocin to treat Lyme, please be aware that Minocin alone is inadequate as it does not attack all forms of the B. Burgdorferi.
As for your concern that there may be an undiagnosed mycoplasma infection, you were checked for mycoplasma pneumonia IgG and IgM in March 2006 via Quest laboratory and both tests were negative.
You mentioned that you have not used an inhaler since August. Please remember the implementation of glutathione nebulizer treatment last fall. This may have contributed to your positive outcomes. Regarding the band 30 positivity, this is non-specific for Lyme.
Your indication that you were misdiagnosed as it pertains to Lyme Disease is based on inadequate information. Hopefully, the above information will provide some clarification to you.
I would be happy to meet with you via in-person visit to the center or by phone to further evaluate your condition and treatment plan. Should you wish to discuss this further, please contact the FFC office to arrange an appointment. As always, my interest is in improving your health and working together with you to achieve your goals."
I am trying to write a letter to their corporate office to complain so I'm seeking facts to dispute what the doctor wrote. Can anyone help?
Band 30 is the same as band 31? Band 58?
What is the revised criteria with WB (below)? Is this something published or something Dr Holtorf wrote?
REVISED CRITERIA WITH WB 1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity
2. Can diagnosis Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93
3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)
4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83
5. If positive for Borrelia on any test, consider testing for neurotoxins
6. Consider testing for co-infections (discussed below)
7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)
Anyhelp or information anyone can provide with this would be greatly appreciated. Many other patients were mis dx'd by this doctor. The Michigan Lyme Disease Association is aware of the situation because I called to complain. I'd like to take my complaint even further. Help???
[ 19. September 2007, 07:27 PM: Message edited by: Munch ]
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
The doctor who wrote this letter is an odd mix of contradictory ideas. He sounds pretty nice and gives you the respect of a detailed response, and sounds like he understands some of the issues, but is objecting to your treatment. I would question this statement:
"It would be imprudent to treat all CFS and FM patients for Lyme Disease."
Since people with chronic Lyme disease have been described as impaired as people with congestive heart failure, it may indeed be both prudent and humane to give all CFS and FM patients a trial of treatment, since the diseases are clinically indistinguishable.
I also question this statement: "Side effects of Lyme treatment can be hazardous."
Only the patient can decide whether the risks of treatment are worth taking and the patient should be given that choice. Years of experience with treating Lyme patients according to the ILADS guidelines has proven that longterm treatment is quite safe.
Please check on CALDA's "Open File Drawer" website at http://calda.webexone.com and sign on as a guest. Then look for "two standards of care."
Sometimes people who test negative at first will seroconvert after several weeks of treatment. Bands that were negative or indeterminant on the western blot can become stronger. With those IND 31, 34 and 39 bands, all of which are highly specific for Borrelia burgdorferi, I'd be really tempted to push for more treatment and retesting in 6 weeks, especially if I'd been diagnosed with "fibromyalgia." Look at www.ilads.org for the Burrascano guidelines for treatment indications. Remember that some people have recovered on doxycycline and minocycline.
As for suing or filing a complaint, doctors are protected as long as they follow a standard of care. Since the IDSA standard constitutes legalized medical neglect, his behaviour would have to be egregious to make any charges stick.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Band 30, according to Dr. C, is considered to be a variant of borrelia burgdorferi's outer surface protein.
It is common in European strains and in one California strain of the disease.
Band 30, as well as Band 58, are among the bands Dr. C finds definitive. And he knows what he's talking about.
The Fibro/Fatigue Center has only recently been trying to get up to speed on lyme. Unfortunately, they're not quite there. At this point they're kind of paying lip service only and don't truly understand the finer points. If you were CDC positive and it was starin' em in the face, they MIGHT get it. They need to read a few studies on how many people (frankly a huge percentage) are seronegative, despite having proven lyme.
I agree with Phyllis. There may not be much you can do about it, except move on, and try to educate them for the good of future patients. But remember, they're in the business of treating fibro & fatigue patients. That's kind of what they want to find, if given a choice...
Glad you're on the right track and I hope you find a good LLMD!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks for the replies! I'm looking for this kind of feedback. From other former FFC patients, I'm hearing the Detroit doctor is convincing people who have CDC positive cases that they don't have Lyme.
The FFC advertises on the bottom of some Lyme boards like Immune Support. Seems like their "Struggling with Lyme?" ad pops up all over the place on the web. Their fishing expeditions for patients are reeling them in but they are not being treated properly.
As for me, I moved on to Dr C last April. I'm finally doing a tx protocol that is appropriate for me. I'm adressing low growth hormone levels, getting B-HRT pellets implanted and working on hypercoagulation issues. All things the FFC claims to address in their 6 step protocol.
I've made considerable progress on abx. The FFC doctor started me on Doxy when the one band showed something on Quest. Then I was told to stop them after the Igenex test.
Abx should not have been denied to me by FFC based on the borderline results of my Igenex test. I'm smart enough to do my own research but others are not able to due to diminished cognitive function.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Munch,
Can I ask what you are trying to achieve with the letter?
If you are trying to change the Center, then I think the best bet would be to find pieces that are written by ILADS doctors, maybe even on ILADS' website, as sources. Since this doctor mentions them.
But, quite honestly, not many doctors will change the way they work because of comments from lay people.
If you want to protect Lyme patients, well then I think you need to share your experiences. It is very sad if they are advertising to Lyme patients and then don't really know how to diagnose and treat it.
As was said, if you are looking for redress, there is probably not much that can be done.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I spent over $12,000 at this same FFC last year and was sicker when I left than before I started. This doctor was the one who diagnosed my identical twin sister with lyme, but continued to insist that I didn't have lyme based on a quest test.
After I kept crashing I went to a different doctor, got a positive Igenex test (says positive right on the bottom of the test) and am now recovering with long term ABx. I sent a letter to FFC along with my test results, and this FFC doctor still insisted I do not have lyme. I recieved a letter that word for word was almost identical to Munch's letter. Do they use form letters?
Since leaving FFC I have discovered several others like myself who had positive lyme tests who were told they did not have lyme. How many more are there that we do not know about? I worry about those people.
This same doctor also overdosed me on T3. She kept increasing my dose without blood tests to determine if it was necessary. I understand that people can benefit from T3 when they are in the normal range however, I had symptoms that I now know are overdose symptoms, yet she just kept increasing the T3. My new doctor noticed this immediatly and adjusted the dosage and I am much more comfortable now. He did a blood test and my T3 was over 400 points ABOVE the range.The overdose could have caused a stroke or heart attack. FFC is dangerous in my opinion. At least the Detroit office is.
The thing that is different about the FFC is that these physicians work for a corporation and there is a corporate office that they report to. They are not self employed, they have superiors that they are accountable to. I contacted their corporate office and told them about my negative experience. They kept asking if I was a current patient, and once I said I was not, they were not interested in my complaints. It's all about $$$$ there.
Sooner or later, they are going to seriously hurt someone. That is what I worry about and feel compelled to do something, but what more is there to do except to warn people? And I can't reach everyone.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I am Dar's twin. I went to this center from Feb to May of 2006. I was blessed to be postitive on band 41 for Quest which led to an Igenex test. I was CDC negative and Igenex positive for both IGg and IGm. During my appointment she said "we don't care what the CDC says" and then told me that I don't have Lyme but had another "flagella" type germ that we would treat. I could see that there was a lot of ++ on my test so I asked for a copy of the test. I could see I was clearly positive and at that time I knew NOTHING about Lyme. I questioned her and she took a week to consult with headquarters and agreed I was positive. A month later she started me on treatement (although I was taking Doxy the whole time for other bacterial infections). She also overdoses me on T-3 but I recognized the symptoms and stopped taking it. She had me on so much Corisone that I didn't sleep for two months and I was a mess.
It wasn't as expensive for me (although I did spend several thousand dollars there in that short time) because I have a PPO and was reimbursed for portions of my treatment.
I also had a conversation with a supervisor at thier headquarters and she did't seem very interested in speaking with me.
This is what I'd like the public to know about the FFC:
1. They are very expensive and they encourage people to go into debt for treatment there. 2. They are as good as the doctors. I know some folks in other states that are happy with their treatment. 3. It's all about the money. Their supplements are hugely expensive can be found much cheaper online (a fraction of the price) until they come up with their own expensive version. 4. They use a "shotgun" approach to treatment and treat everything they could possibly think of at one time which is a shock to the body. I was on five hormones that I didn't need.
I suffered dearly due to my experiece there but at least I got my Lyme Diagnosis so I have to be grateful for that. I agree that certain doctors may sericously hurt someone and it's only a matter of time. She (Detroit Dr.) seems to be making the same mistakes that she made a year and a half ago. They advertise in EVERY medium that they are Lyme experts.
The "idea" they have is great but they don't have it quite right.
Posts: 1761 | From USA | Registered: May 2006
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posted
Wow! That's scary stuff!! You folks keep spreading the word out there....expecially on FM boards.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The T3 overdosing is scary. If you want to get their attention when complaining, you can always threaten a report to the state medical board.
Just be aware, if you do report, that the board might actually grasp onto the cases where they do use longterm abx treatment for Lyme. So it could be a double edged sword.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Annie and Lymetoo: You are right it is scary. I get moments when I look back and regret what I had to go through BUT then I have to consider what other people have gone through to get to a good Dr. and try not to be bitter about it.
Several of us (former FFCers in this area) have considered what may happen regarding Lyme treatment in this area if we report her so that's why we contacted the headquarters instead. Don't want to open that can of worms, for sure.
We do what we can to educate and help people.
Thanks for the support.
Posts: 1761 | From USA | Registered: May 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Wow- good to know!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Wow, I can't believe I stumbled on this thread.
I am going to FFC in another state. I started going there out of frustration with my GP and Endo and had no idea what was wrong with me except a strong suspicion of adrenal fatigue and hypothyroidism.
At the last visit, my third, I learned I have CFIDS and _probably_ Lyme. I had no reactions at all to any bands on the Quest Western Blot, but I was bitten by a tick 18 years ago and my symptoms do trace that far back. I was told most people test negative, especially after a long time, and I believe that.
Because I have to pay for my own testing, the Dr suggested to not bother with the IGeneX test unless I really wanted it. I went along with that and have been started on Doxycycline and a few other things.
After doing more research and realizing what chronic Lyme treatment usually entails, it scares me to embark on long term anitbiotics without knowing for sure if I have Lyme, especially when my symptoms are not as severe as people I read about here.
For what it's worth, I don't think Dr. Holtorf is with FFC anymore. The only place you can find him on their site is in the older clinical articles.
I have a DVD that I bought from the FFC site that is of him and two of the other center's doctors giving a lecture (In which one of them promotes the Marshall Protocol). I don't think those two doctors are with the center anymore either and you can't buy the DVD on the site anymore. I wonder what all this means???
If I wasn't confused about my treatment before, I sure am now! I have my next appointment this week. Hopefully I'll get a better grasp of where I'm at.
While you guys have had your troubles with FFC, the doctor I am seeing is by far more knowledgeable, compassionate, and helpful than any other I've been to. I've never been to a LLMD though, just family practice doctors and specialists. I am considering going to a LLMD for a confirmation diagnosis.
Posts: 21 | From NY | Registered: Sep 2007
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posted
Hi there vin. I would suggest that you see a LLMD about your tick bite and have an igenex test. If you do have lyme, you will never recover unless it is addressed.
I had mixed feelings when I found out I have lyme. I was terrified because my sister has it and I knew what treatment entailed. But I was also relieved because I knew I could be treated for it and recover. I have been in treatment since Feb 07 and am doing so much better! I still have a ways to go though.
Good luck to you!!!
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I think a friend of mine is going to one of these centers in October instead of an llmd because an llmd will not take her insurance. Do they take insurance? I did not really look for that.
I went on their site and was also amazed at the $$$ of their supplements.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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No the FFC does not take insurance. If you have an HMO, nothing will be covered. If you have a PPO or private ins then your labs will most likely be covered and office visits at the out of network reimbursement rates. Note that they charge around $400 for the first and second visit. Insurance will only pay about $70 for the visit. And that $400 does not cover the labs or supplements.
They usually give you a bag of several hundred dollar worth of supplements on your first two visits. After that it may be a bit cheaper unless they want you to come for IV's or gamma globulin shots. Those are several hundred as well.
If your friend has insurance that will cover labs, the first and second visit will likely cost $600 to $800 each or more. Labs would be an additional few thousand on top of that.
FFC is very expensive. They are a for profit chain and are always looking at improving their bottom line. It's all about money.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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The FFC is all about profit. I wouldn't be suprised if they didn't have sales quotas to meet for moving supplements and IVs.
I was told there was nothing else they could do for me unless I came back for a series of AV IVs. To me that didn't make sense because lots of people have high EBV titers but are not as sick as I was when I arrived there.
The FFC experience has made me rethink many things about the medical profession. I realize the diagnosis of Lyme Disease, chronic fatigue and fibromyalgia are considered very controversial.
There'd be little hope of getting any of my money back. I'm not even interested in that since in some respects it was money well spent. The lab testing they do is very comprehensive. They promise you'll know exactly what is causing your fatigue.
Mainly I'd like to spread the word about the mishandling of Lyme Disease by the Detroit FFC. They have 14 clinics in the USA and many of them are in Lyme endemic areas.
I thought I had a type of relapsing and remitting chronic fatigue since 1981. I also have a long history of endometriosis with many surgeries. Many women with stage 3 and 4 endometriosis have a gradual onset type of chronic fatigue.
The only thing I ever needed to do for my fibromyalgia was take breaks. After lying down for 20 minutes my muscles were fine. Now 40 mg of Opana ER + Oxy-IR + 3 Soma tablets does not touch the pain.
For years, I could get myself back into a remission mode with the fatigue end of things by doing certain healthy things for myself like eating all organic food, following an elimination and rotation diet with mainly a mono-food diet, de-stressing and getting lots of fresh air, massage therapy, soaking in my spa, mild exercise and plenty of sleep.
That all changed in 2001 when I had a tick bite and EM rash after two different weekend camping trips. I was hospitalized for 3 weeks in 3 hospitals mostly in neuro intensive care with encephalopathy, a high fever, diarrhea, joint and muscle pain, dehydration, kidney failure, facial numbness, episodes of aphasia/dysphasia and liver failure (or possibly elevated enzymes.)
The first hospital shipped me off to the second for a bronchoscopy. My PT & PTT were crazy so they couldn't do it safely. After pumping me full of Vitamin K it was finally done. The doctors said it was all due to sarcoidosis. The third hospital said it was some form of epilepsy but not sarcoid.
I never really got any answers as to why I was perfectly normal one day and a falling down the next. I was unable to pass a neuro exam and was not oriented to person, place or time. My EEGs were slow for someone my age. When asked to repeat the word "World" it was "Dowl."
I never agreed with the sarcoid diagnosis because my body temperature is on the low side maybe 96.5 - 97.2. I'm hypothyroid and have been on meds since 1981. My temperature during this hospitalization was 103-104 degrees.
Some of the symptoms of sarcoid are suspicious to me since they overlap with those of Lyme. Is sarcoid just another fancy name for a new 20th century disase because doctors are ignorant of Bb and evil coinfections?
Since I was told by the FFC doctor that it was not Lyme disease, I thought maybe it was mycoplasma because I was responding to Abx. I was told numerous times by the FFC doc that I should not be on Abx but I refused to stop taking them due to the progress I was making.
My holistic doctor was not comfortable doing the Marshall Protocol but agreed to write a prescription for Minocin per the Roadback.org protocol. I had many reservations on embarking on a long term Abx protocol because of candida issues.
After 2-3 weeks on Minocin, my TMJ was much improved. After 8 weeks, I said goodbye to GERD meds for the first time in over 20 years.
After 12 weeks, no more asthma inhalers. I had been on Flonase for sinus problems and Albuterol and Flovent. After 16 weeks, the chest pain or costochondritis was gone.
I pulled out my medical records from the sarcoid admission and reread them. Imagine my surprise to find that I was supposed to get an ELISA test for Borrelia. Since I didn't know what the word "Borrelia" meant I didn't know it was significant.
The insect bite was documented by my Pulmonologist in the differential diagnosis. He had written on the transfer paperwork to the third hospital that I was supposed to start on Doxy which I never got until 5 years later.
I was examined by about 25 doctors and only one made a connection between my symptoms and the bite on my leg. Had the FFC doctor bothered to look at the medical records I was asked to bring to the first appointment she would have seen this information clearly too.
The doctor never bothered to ask if I have any hobbies that might put me into contact with ticks. I'm an avid gardener, tent camper, and National and State Park hiker and cross country motorcyclist. We have made trips all over the USA and Canada on the Harley.
The FFC doctor claims in her letter to be aware of ILADS info but the FFC did not use the ILADS point system. Nor did she ever ask if I had any history of tick or odd insect bites with or without rashes. Had she bothered with the point system she would have found that I have 12 points.
The 3 hospitals involved in the sarcoid thing never made any sort of connection to the ill fated camping trips both in July 2001. Now I'm trying to go back through my pictures to see which states I was in and when. Do these trips correlate to periods where I was fatigued?
I now doubt whether or not I really had CF. For someone with a fatigue based illness like CF I was always very active and had no trouble riding my bicycle 60-80 miles per week. Exercise is one of the things that cause most CFers to relapse.
A person with some chronic illnesses and prexisting CF & FM does not simply go camping and come back incapable of feeding one self. Nor do they fall down as if they are drunk. Walk into walls. See and hear things like music that no one else can hear.
My point in sharing my story very simple. The FFC is advertising everywhere their "Struggling with Lyme?" ad. If they couldn't diagnose me with Lyme and denied Abx based on a borderline Igenex test is there hope for anyone else in their care?
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thanks, Twingal. She must not have an appointment at one of these chains because she stressed to me they could not afford llmd charges & needed someone to take BC/BS insurance.....So it must be a different Fibro clinic.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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bettyg
Unregistered
posted
himunch,
thx for this post; i couldn't figure out what FFC is.
i suggest editing it to also spell out what it means in topic line; too important TO MISS!
to edit, click pencil icon opening up subject line and body text. thx! for opening up all our eyes!
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posted
Betty, I changed the topic line as you suggested. Hopefully, General Support is the area to post something like this. Being new to the board I wasn't sure.
From reading I'd done on the web I was certain Lyme was my problem. Lyme was diagnosed because of one band on the Quest WB. Then it was undiagnosed after the Igenex WB.
According to Dr. Holtorf's revised WB protocol I'm positive two different ways. The band 58 and bands 30 & 41. It took an additional year to get a clinical diagnosis from Dr C. I'm glad I wasn't treated by FFC because of some of the meds they use (see below).
I had asked earlier in the thread if anyone recognized the revised WB criteria. It looks like something Dr Holtorf put together from culling medical literature.
Some of my symptoms are classic for Bb, Babs & Bart especially the musical and visual hallucinations and the complete personality change. Then there's that whole sarcoid diagnosis.
Dr Kent Holtorf created the FFC tx protocol to cure himself of chronic fatigue. He has his own medical practice in Torrance, CA. One of his FM patients, Bob Baurys, is the CEO of FFC. Bob thought he'd take the cure to the people and created the centers.
The info below outlines some of the treatment protocol that they use for Lyme. Many patients have strong herxes due to the high doses. For that they use Burbur. Mostly they tell you to keep taking the meds. I find that very scary!
Diagnosis and Treatment of Lyme Disease (A Culmination of the Literature) Kent Holtorf, M.D.
CHARACTERISTICS of BORRELIA BURGDORFERI 1. Over 1500 gene sequences 2. At least 132 functioning genes (in contrast, T. pallidum has 22 functioning genes) 3. 21 plasmids (three times more than any known bacteria)
TYPES OF LYME DISEASE 1. Early Lyme disease (``Stage I'') ... A. At or before the onset of symptoms ... B. Can be cured if treated properly 2. Disseminated Lyme (``Stage II'') ... A. Multiple major body systems affected ... B. More difficult to treat 3. Chronic Lyme Disease (``Stage III'') ... A. Ill for one or more years ... B. Serologic tests less reliable (seronegative) ... C. Treatment must be more aggressive and of longer duration
CHRONIC LYME 1. Disease changes character 2. Involves immune suppression 3. Less likely to be sero-positive for Lyme 4. Development of alternate forms of Borrelia 5. More likely to be co-infected 6. Immune suppression and evasion 7. More difficult to treat 8. Protective niches
ALTERNATE MORPHOLOGIC FORMS 1. Spirochete form has a cell wall 2. L-form (spiroplast) has no cell wall 3. Cystic form
IMMUNE SUPPRESSION BY Borrelia burgdorferi 1. Bb demonstrated to invade, inhibit and kill cells of the immune system 2. The longer the infection is present, the greater the effect 3. The more spirochetes that are present, the greater the effect
PROTECTIVE NICHES 1. Within cells 2. Within ligaments and tendons 3. Central nervous system 4. Eye
DIAGNOSING LYME
1. It is a clinical diagnosis supported by appropriate testing (likelihood of a false negative must be understood) 2. Look for multi-system involvement 3. 17% recall a bite; 36% recall a rash 4. 55% with chronic Lyme are sero-negative 5. PCRs- 30 % sensitivity at best- requires multiple samples, multiple sources
NATURAL KILLER CELL ACTIVITY AND NUMBER 1. Low counts seen in active Lyme 2. Reflects degree of infection 3. Can be used as a screening test 4. Can be used to track treatment response 5. Can predict relapse
ELISA ANTIBODY TESTING 1. Over 75% of patients with chronic Lyme are negative by ELISA
WESTERN BLOT 1. Reflects antibody response to specific Bb antigens 2. Different sensitivities and specificities of the bands 3. Some bands are potentially seen in different bacteria- ``nonspecific bands'' 4. Some bands are specific to spirochetes 5. Some bands are specific to Bb 6. Specific: 18, 23-25, 28, 31, 34, 37, 39, 58, 83 & 93 7. Spirochetes in general: 41 (flagellum) 8. First immune response if present is usually 41 and 23 KD bands 9. Response to the 31 KD proteins is not usually seen for a year after initial infection
CDC IGG WB CRITERIA 1. IGG WB 5 of the 10 bands (18,23,28,30,39,41,45,58,66) 2. Criteria based on early Lyme 3. IGENEX adds 3 specific bands (31,83 and 34) and 3 non-specific bands (22,37,73)
CDC IGM WB CRITERIA 1. IGM WB 2 of the 3 bands 23, 39, 41 2. IGENEX adds 3 specific bands (31,34 and 83) and 3 non-specific bands (22,37,73)
REVISED CRITERIA WITH WB
1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity
2. Can diagnosis Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93
3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)
4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83
5. If positive for Borrelia on any test, consider testing for neurotoxins
6. Consider testing for co-infections (discussed below)
7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)
LYME DISEASE TREATMENT
1. Use an integrative treatment for optimal results. NEED MULT-SYSTEM TREATMENT (See CSF/FM pages).
2. Treating with just antibiotics has poor likelihood for success with chronic Lyme. 3. Extended duration often needed for chronic Lyme 4. Use clinical endpoints 5. Watch for Herxheimer reactions (may occur in 3-4 week cycles) ... A. Directed nutraceutical can be beneficial ... B. Immune modulatators ... C. Antibiotics ... ... 1. Oral ... ... 2. Intramuscular ... ... 3. Intravenous ... ... 4. Often need antibiotic combinations with lysomotropics in addition to integrative approach to address different forms (spirochete, L-form, cystic) ... D. Intravenous Antimicrobial IV's (Viral Plus, etc) or IV Immunoglobulin ... E. Adjunctive medications (Lysosomotropics) to increase antibiotic effectiveness
NUTRACEUTICAL 1. Samento or improved version Keline 2. Cumanda improved version Eklipse 3. Consider combination of Eklipse, artemesinin I and Keline as a basis 4. Fibrinolytic enzymes and heparin if coagulation defect present (present in approximately 80% of cases) 5. Give probiotics and natural antifungals when using prolonged antibiotics
IMMUNMODULATION 1. Essential to improve immune function ... A. Leukostim ... B. Proboost ... B. Maitaki Mushroom ... C. Transfer Factor-Lyme specific ... D. Low Dose Naltrexone 3.5 mg qhs ... E. Delta-Immune F. Neupogen (filgrastim) (Enhanced eradication of Bb demonstrated in mice) 5 mcg/kg SQ
G. Benicar (Marshal Protocol)
ORAL ANTIBIOTICS 1. Tetracyclines-Doxycycline, Minocycline 100 mg II tabs bid or Tetracycline 500 mg II tabs tid-qid ... A. Good Tissue penetration ... B. Covers Borrelia and Ehrlichia ... C. Anti-inflamatory properties ... D. Photosensitivity, GI upset frequent
2. Penicillins such as Augmentin 875 mg PO bid-tid or Amoxicillin 875 II tabs bid-tid ... A. Monitor LFT's with Augmentin ... B. Addition of Probenecid 500 mg/qd-tid ... C. Cannot exceed 3 tabs Augmentin per day due to clavulanate, thus can give with Amoxicillin
3. Macrolides such as Zithromax 500-600 mg, Biaxin 1000-2000 mg/day or Ketek 800 mg/day ... A. Combination therapy often needed (ie plus cephalosporin or Flagyl or tinidazole) ... B. Well tolerated ... C. Improved tissue penetration with hydroxycholoroquine or amantadine
4. Cephlosporins (3rd generation) Omnicef 300 mg one po tid or (2nd generation) Ceftin 500 mg II tabs bid
5. Flagyl 250-500 qd-tid or tinidizole (better tolerated) 500 mg bid for 2 weeks every 1-3 months ... A. Kills spore forms of Borrelia ... B. May decrease effect of tetracyclines ... C. Antabuse reaction with alcohol ... D. Potentially neurotoxic ... E. Adults only
6. Rifampin 300 mg bid
IM ANTIBIOTICS 1. Benzathine Pennicillin 1.2-2.4 Million Units 1-2 times per week ... A. Excellent foundation for combination treatment ... B. No GI Side effects ... C. Efficacy may be close to IV
IV ANTIBIOTICS 1. Consider if illness for greater than year 2. Failure or intolerance of oral therapy 3. Consider starting with IV antibiotics for 1- 3 months (until clearly improved) then oral/IM maintenance 4. May require extended duration with long term disease and immune supression 5. Ceftriaxone (Rocephin) most commonly used (dose 2 grams qd 4 x/week) ... A. Risk of billiary slugging-use Actigall ... B. Monitor LFT's 6. Cefotaxime (Claforan) ... A. Requires twice daily dosing 2 grams bid. Can give as continuous infusion of up to 8 grams/day ... B. Monitor LFT's 7. Doxycycline 400 mg qd (slow infusion) ... A. Requires central line ... B. Do not use in pregnancy or children 8. Azithromycin 500 mg qd ... A. Requires central line ... B. Limited experience 9. Unasyn (ampicillin-sulbactum) 3 grams IV tid 10. Timentim (4th generation penicillin and clavulanate) 3.1 grams IV q 6 hours 11. Primaxin 500-1000 mg IV bid-tid
CO-INFECTIONS IN LYME 1. Very common and nearly universal in chronic Lyme 2. Diagnostic tests even less reliable 3. Co-infected patients more ill 4. Co-infected patients more difficult to treat
POSSILBE CO-INFECTIONS 1. Babesia 2. Bartonella 3. Ehrlichia 4. Mycoplasma 5. Viruses such as EBV, CMV, HHV6, HHV7 6. Others
TESTING 1. Antibody testing has a high rate of false-negative 2. Consider treatment if poor response despite negative test results.
BABESIA 1. Is a parasite (one study showed 66% of chronic Lyme have Babesia co-infection) 2. Many different species found in ticks (13+) 3. Not able to test for all varieties 4. Diagnostic tests insensitive 5. Chronic persistent infection documented 6. Infection is immunosuppressive
TREATING BABESIOSIS 1. Can be treated while on Lyme medications 2. Lariam 250 mg (5 caps loading dose) then 1 po week for 5 weeks with Artemisinin 2. Atovaquone (Mepron) 750 mg qd-bid plus azithromycin 500-600 mg for 4 to 6 months 3. Consider Flagyl or tinidiazole 4. Artemesinin demonstrated to be beneficial (2-3 tabs bid)
BARTONELLA 1. More ticks in NE contain Bartonella than contain Lyme 2. Clinically seems to be a different species than ``cat scratch disease'' 3. Gastritis and rashes, CNS, seizures, tender skin nodules and sore soles 4. Tests are insensitive
ADJUNCTIAL MEDICATIONS TO INCREASE ANTIBIOTIC EFFECTIVNESS 1. (Lysosomotropics) Will increase the effectiveness of antibiotic and improve success A. Porbenecid 500 mg qd-tid. Decreases B-lactam excretion and used to achieve higher serum levels. 1. Will also decrease excretion on NSAIDS, benzodiazepines and other medications B. Hydoxychloroquine (200 mg qd-bid)-decreases formation of cystic forms and increases penetration of antibiotics into cysts C. Amantadine 100 mg qd-tid. Increases penetration into cells and cysts, immune boosting and is antiviral
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
valeymemom: She could be doing to an FFC as she could be doing the "out of network" thing. She will have to file the paperwork herself which is a part time job let me tell you. BCBS is notorious for "losing" paperwork so it's quite a challenge to keep on top of them. Sometimes they lose it tow and three times - I think they want you to give up.
Once I sent several claims in one large envelope insured mail so the would have to sign for it. They lost one of the claims! I think it's their policy to do that to see what they can get away with, I swear. It was a lot of work but I got a lot of money back (thousands)
She will still pay a lot of money for their supplements though.
Posts: 1761 | From USA | Registered: May 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
munch, give that doc. this info.
"Yale says don't pay attention to band 41 because it means nothing." Yet they have patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate. These are the people who have refuse to respond to Attorney General Blumenthal's subpoena. This test has been put in moth balls.
US patent # 5,618,533
Also the second link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease. He also states that you can tell the difference between these illnesses by a clinical diagnoses. All the lymies have band 41 but few people produce many other bands, R. S.
"Yale says don't pay attention to band 41 because it means nothing." Yet they have patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate. These are the people who have been working to hang Dr. J for treating lyme disease and refuse to respond to Attorney General Blumenthal's subpoena. This test has been put in moth balls.
US patent # 5,618,533
Also the second link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease. He also states that you can tell the difference between these illnesses by a clinical diagnoses. All the lymies have band 41 but few people produce many other bands,
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I have my next appointment this week. Hopefully I'll get a better grasp of where I'm at.
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