Topic: What I believe: 2009--A brief overview (LymeMD blogger)
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Interesting blog entry from LymeMD: ---------------------- Friday, January 2, 2009
What I believe: 2009- A brief overview
We are no closer to any acceptance by the medical community of the existence of chronic Lyme disease. Patients and their physicians alike are dismissed.
Lyme is difficult to treat. IV antibiotics are frequently required. In my experience, the disease is frequently under-treated. Excessive concerns about severe Herxheimer reactions are frequently associated with inadequate therapy.
The goal of therapy is clinical remission. The persistence of the organism in cells makes it virtually impossible to eradicate. Despite this, some patients may experience a sustained remission off antibiotics. Other patients may have a remission maintained with low doses of antibiotics.
We still know very little about the disease. I would be concerned about claims that a physician is a "Lyme expert." No such experts exist at this time. The term LLMD has no specific meaning.
Patients frequently harbor a parasite that may or may not be a species of Babesia. The existence of this parasite may be impossible to prove based on current diagnostic standards. Treatment of this entity is critical for recovery of many- not all patients.
Ehrlichia is a fairly common co-infection. It resides in white blood cells. It too can be somewhat difficult to treat, but it usually responds to antibiotics well.
Bartonella appears to be a rare coinfection based on objective measurements. The optimal treatment for this bacteria is a matter of debate.
Bartonella like organism- "BLO" does not exist.(My opinion)
There are major, yet unidentified, co-infections- at least one of which is very difficult to treat. This is the small, highly motile, gram negative bacteria seen in the blood of most Lyme patients. This bacteria is highly resistant to most antibiotics. At this time it is not clear how to treat it.
An unidentified small protozoan has also been seen in the blood of Lyme patients. This too is unidentified, but may account for some the clinical responses seen with Flagyl and anti-malaria drugs.
Rickettsia species may be frequently transmitted as a co-infection, but are probably eliminated with anti-Lyme therapy. Atypical Rickettsia have been identified in 20% of Ixodes ticks.
Mycoplasma species and Chlamydia pneumonia are frequently present in Lyme patients. They are intracellular and are also difficult to eliminate. Their role in the pathogenesis of the syndrome is not well known.
Standard allopathic treatments are very effective. I believe the role of CAM in managing this disease has been over emphasized in most quarters.
Therapy must be individualized. It remains difficult to predict how individual patients will respond to any given regimen.
Chronic Lyme disease is associated with objective measurements and findings.
The role of vitamin D remains unanswered. For now, I see it as a marker which relates to an immunological response to infection.
CD57 counts appear to be of little clinical benefit.
Many, if not most of the symptoms associated with chronic Lyme disease, reflect the bodies immunological reactions to infection, rather than infection per say. Auto-immune responses play a large role in the pathogenesis of the disease syndrome.
Proven antibiotics (classes) include: beta-lactams. macrolides, quinolones, rifampin, Flagyl/Tindamax, anti-malarials- Plaquenil, Malarone, Mepron, clindamycin- related to macrolides, tetracycalines and artemesin. I see no significant role for sulfa drugs like Bactrim.
Complementary medicines which appear helpful include: Bile binders- Welchol and Questran. I remain unconvinced about any others. I am cautious about recommending things which have no proven clinical benefits.
Information about Lyme and tick borne illness remains very confusing and contradictory. Lyme patients need to become well informed about their illness so that they can partner with their physician. Patients must also be informed so that can decide whether or not a physician's approach makes sense to them.
Patients and doctors should not be wed to a particular paradigm. If a therapy isn't working then something else should be tried.
I do not believe it is ethical for physicians to sell supplements and books to patients from there office. It may be legal, but I see it as a conflict of interest.
The vast majority, yes 90% or more of patients, experience significant improvement when the correct therapy has been established. There remains a small minority of patients who are resistant to treatment. Even these patients generally improve to a variable extent, if the physician is both creative and persistent.
Multi-specialty Lyme clinics must be developed in the coming years.
Posts: 3528 | From US | Registered: Apr 2007
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posted
He's right in many of his statements, however I DO believe major progress was made this year with both "Cure Unknown" and "Under Our Skin" as well as the Nat. Cap. Lyme congress viewing of both.
Hopefully we can build on this success in 09 Posts: 371 | From CT | Registered: Jun 2008
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posted
Has anyone tried Questran or Welchol and do I have to have a Prescription?
Posts: 15 | From New Hampshire | Registered: Jan 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Thanks for posting this!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks for posting. He sure is a straight shooter. I wish there were more like him really. It's refreshing. I get tired of hearing BS about how you need 80 supplements sold by a LLMD to prosper. He seems to have ethics, which is rare nowadays.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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there need to be Lyme specific clinics as well as those for other infectious diseases, where the doctors truly care for the cures and not just the basics of trials and errors,
and much more funding and more research is quickly needed by our Governments...
What about Ceftin pills ?
Thats what my so called LLMD prescribed me...
any thoughts on those...
Thank you.
Best Regards, Eric
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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adamm
Unregistered
posted
Agree. I always say, when asked to define LLMD, that it simply refers to a doc who's willing to admit he/she's flying blind.
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Respectfully disagree on the statement about CAM therapies and believe you will never get well without it.
CAM therapy treats the entire body and rebuilds it. This is absolutely necessary as not only the bugs but also the drugs are destroying the body.
Every fire fighter knows that the water used to put out the fire causes as much and many times more damage to the building as the fire itself.
Every good doctor should know the same thing about allopathic medication but sadly does not. Neither apparently does CD57.
How sad to see so many remain ignorant of the impact of diet and lifestyle regarding physical health.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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massman
Unregistered
posted
Thanks luvs2ride !
Changing the internal terrain is of upmost importance.
Sorta like rats in the house. Until you change the reason WHY they are there you can keep killing them but the next ones that come by just move right in.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I wonder: Is this doctor a member of ILADS?
How long has he been treating lyme and co's and how many patients has he treated successfully?
I'm dismayed by this statement: Excessive concerns about severe Herxheimer reactions are frequently associated with inadequate therapy.
Combined with this statement: I believe the role of CAM in managing this disease has been over emphasized in most quarters.
And this: Complementary medicines which appear helpful include: Bile binders- Welchol and Questran. I remain unconvinced about any others. I am cautious about recommending things which have no proven clinical benefits.
His comment about "Excessive concerns" is disturbing. Many patients who don't get adequate help in dealing with herxheimer type reactions cannot remain on abx or at the very least end up with inadequate treatment.
Without help from CAM type treatments, I would be one of those who would not be able to tolerate aggressive treatment.
In reading his blog I see no mention of methylation issues. I've seen mention of a few situations in his blog where this could be very important.
I appreciate his blog and reading of his observations but I recoginize that I would be one who would not be helped by his approach because I could not tolerate treatment without more support than he offers his patients.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I like his blog mainly because it is a fascinating look inside a doctor's mind, though I myself would not choose to go to him--like you, Terry, I'd be completely wrecked by his aggressive, drug-only approach. I can't tolerate those massive amounts of drugs. At least I know that so I haven't ended up bedridden or in the hospital as a result. However I think he sounds like a very good LLMD in terms of the straight abx approach.
I've annoyed a few of his patients posting what I think are reasonable questions and thoughts. Oh well. A few of his patients do get somewhat vituperative, and I'm not sure why.
One very good thing about his blog is if someone wanted to go to him they'd know exactly what his philosophy is (aggressive abx treatment) and what they would be getting. If they wanted CAM treatments they'd have to enlist another second doctor for that.
Posts: 2276 | From united states | Registered: Jun 2004
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"God is light. In Him there is no darkness." 1John 1:5 Posts: 10185 | From Illinois | Registered: Aug 2004
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
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CAM = complementary alternative medicine (I think)
Posts: 3528 | From US | Registered: Apr 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Yes.
CAM doctors are looking beyond just treating symptoms. They do use allopathic medicine but focus more on identifying where your body is deficient and out of balance. By fixing your deficiencies and bringing your body back into balance, your own immune system can assist in the healing process.
This is a whole body approach. It doesn't throw out western medicine.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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