Loose Connective Tissue Disease Specialist

Lipedema
Dercum's disease
Multiple Symmetric Lipomatosis
​Angiolipomatosis
Familial Multiple Lipomatosis

Did you know that fat is loose connective tissue? 
​If you have a problem with fat in any of the diseases listed above, you have a connective tissue disease.

MY GOALS AS YOUR PROVIDER

WHAT I PROVIDE
1. HOPE - Based on my years of experience with loose connective tissue disease, I have a lot of ideas for you to try.  With medical science roaring ahead, there are always new things to try.

2. EXPERIENCED FINGERS - Doctors and nurses, PAs and other healthcare providers were never taught how to examine fat.  I know how and learn more as time goes on.

3. A PLAN - you will leave my clinic visit with ideas on how to continue to improve your life.

4. A PARTNERSHIP - I learn from you as well so feel free to share your ideas with me on what works for you and what does not work; I will listen.


WHAT TO BRING TO AN APPOINTMENT

1. Bring any abnormal labs.  I like to see, a lipid profile, an ESR, CRP, CH50.

2. Any imaging that provides information on your ATD.

3. A copy of the Overview form filled out.  Click on the underlined words to download pdf, fill out and bring with you to the appointment. 

4. The fax number of any physician or healthcare provider you want your note sent to. 

5. Wear clothes you can easily take on and put on. Do not wear your compression if you are expecting an exam - you can put on after the exam.

6. LABS
Bring any labs you have completed within the past year.

a. Lipid panel; if on lipid lowering medications, also get homocysteine and Lp(a) levels

b. Marker of inflammatory mediators in the blood causing blood cells to precipitate quicker: Erythrocyte sedimentation rate (ESR)

c. Stable marker of inflammatory repair: C-reactive protein (CRP)

d. CH50 - checks if your complement (clotting system) is normal or elevated.  The complement system is part of the inflammatory cascade and when other markers of inflammation/repair tend to be negative, this one can turn out to be positive and guide us in your treatment.

e. Angiotensin converting enzyme (ACE) level - this is a non-specific marker of inflammation and can turn out to be positive when other markers are negative.  If it is positive, it does not mean you have sarcoid, a condition in which ACE levels are high - it just means you have inflammation.  Your healthcare provider may want a chest X-ray to evaluate for sarcoid if this lab comes back positive.

f. IgE, IgA, IgG levels - many people with fat disorders have low IgG levels.  IF this lab comes back low, check a IgG subclass panel to find which IgG is low.  You may want to see an Immunologist/Allergist if you have low IgG levels.

g. Vitamin D level - vitamin D helps fight off infections, improves bone mineral density and tends to be low in people who have excess fat.

h. If you have a lot of chemical sensitivities, allergies, itching, flushing, edema, or think you might have a mast cell activation disorder, please check:
   -Serum tryptase (Quest Diagnostics; 34484); CPT code 83520
   -Plasma histamine (Quest Diagnostics; 6586X); CPT code 83088     
   -Prostaglandin D2 (FPGD2 90154); Mayo clinic; CPT code 
       84150 - http://www.mayomedicallaboratories.com/test-catalog/print/90154) 
    -Factor VIII activity (Quest Diagnostics; 8353); CPT code 85240
    -24 hour urine for the histamine metabolite N-methylhistamine (Quest Diagnostics; 83011); CPT Codes 82570, 83789; Includes creatinine)
 Must be off all H2 antagonist/blockers (ranitidine, cimetidine, famotidine), all antihistamines (benadryl, zyrtec, allegra, claritin, quercetin and others) and off all NSAIDs (ibuprofen, naproxen, ketoprofen and others), and off aspirin (ASA) for 7 days to get the tests in "h".

i. If you have fatigue
***Please get a TSH to check the thyroid
***Check the hypothalamic pituitary adrenal axis circadian rhythm and function with four salivary cortisol levels: 8AM, noon, 4PM and before bed through Labcorp test number 502124 (four serial samples); CPT code 82533

IMAGING
If you have significant edema (lymphedema) and have never had a lymphoscintigraphy scan but want one to better understand your lymphatic anatomy and physiology, your primary care physician can order one for you either locally or at the University of Arizona.  Please call well ahead of time as they book 1-2 months out.  Lymphoscintigraphy can be used to detect blockages in the lymph vessels or the absence of lymph vessel. This test requires a small amount of radioactive material to be injected through a small needle into the hand or foot. Except for minor discomfort (some people with chronic pain experience more pain) and skin injection, this test is not otherwise dangerous or painful. 
More here: http://www.uahealth.com/library/sections/article/lymphoscintigraphy 

PULMONARY
If shortness of breath is a main component of your ATD and you will be seeing me, please ask your healthcare provider to order pulmonary function testing (PFTs).  If you have had a CT or MRI of your lungs, please bring the actual scan and report with you.  I am working with the Cardiothoracic Imaging Chief and she and her colleagues have taken an interest in ATDs.
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PLACES TO STAY
Please rely on your own decision for a hotel to meet your personal needs.


Sincerely,
Karen L. Herbst, PhD, MD

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Dr. Karen L. Herbst

Dr. Herbst was voted as one of San Diego’s top doctors in San Diego Magazine 2009 and in the "Guide to Americs's Top Physicians" in 2013 - see: consumersresearchcncl.org/ 
She was a guest on the Doctor's Show where she discussed the Cyclic Variations in Adaptive Conditioning (CVAC) Process as a unique form of exercise eventually publishing on the ability of the CVAC Process to reduce pain in a pilot study of Dercum's disease. Dr. Herbst was the research Physician on Mystery Diagnosis in June 2010 highlighting a young man with Dercum's Disease (The Man with 1000 Lumps).