Case Management FAQ
12 Total Items
Question Volume 1
Have referred pt. (KB) to you for evaluation. She has had all testing with the exception of
pulmonary stress test and MRS which we would like to get at your location. Has had a +
response to CSM. Obtaining second VCS after 1 month treatment.
HLA-DR 7-2-53 and 15-6-51
MSH 28
VIP23.7
MARCONS+ but do I need to order an ID before starting antibiotic + Rifampin and Hopkinton
nasal spray? I can order an EKG here if you want one. She is working on an expanded time line
for you along with the narrative. She thought her letter to you contained the necessary
information. Ordered Physicians Training videos last week. Have not received them yet so
perhaps answers to these questions are contained there.
Answer
The culture from DLM gives the antibiotic resistance. After one month CSM of start BEG at two sprays each nostril three times a day. We don’t need rifampin any more as the higher dose BEG is confirmed to do the job. Continue CSM. You need ERMI. You will need to monitor the labs she has that are abnormal including TGF beta-1, C4a and VEGF, among others
Question Volume 1
Our patient, Kathleen B. is doing much better although still remediating and awaiting most
recent ERMI. Labs of 3/27, reported 4/13 are improving too:
MMP-9 = 262 (85-332ng/mL)
ADH= 1.5 (1.0-13.3pg/mL)
Osmo = 285 (278-305 mosmol)
I think ADH/Osmo is ok now although I had planned to use DDAVP. Would you confirm that I can
skip this step and go on to VEGF which is elevated?
VEGF = 105 (31-85 pg/mL) and improved from 173
I know to use Actos or Omega-3 FA if VEGF is low, but is any treatment required if it is elevated?
What does a high VEGF tell me?
C3a = 274 (<940ng/mL)
C4a = 1541 (<2830ng/mL)
Since these have normalized, shall I treat TGFbeta-1 of 17,960 with low-dose (12.5 -25mg/day)
Losartan since she is so tiny (110#) and watch BP closely?
Answer
I would not worry about the minor elevation of VEGF. Similarly, if her symptoms of thirst and frequent urination aren’t a problem, then go on to TGF beta-1. You could use losartan in pediatric doses but you also could start her on VIP. Take a look at the PowerPoint on the site for more info on the VIP protocol.
Question Volume 1
Question about a case: A multisusceptible (11-3-52B/ 7-2-53) patient with Lyme by Quest
Western Blot. Declined to do ERMI. Initial C4a was 7340. Treated with doxy then CSM/Actos.
Tried serial C4a to look for mold. First C4a was 84000 on CSM. After one week off CSM, was
64000. Is there any useful information I can get from the results?
Answer
What was baseline C3a? Levels that high are unusual and invariably reflect a processing problem. If not then ERMI is mandatory. Look for serial changes in VCS; continue CSM until VCS is normal. Would not expect a + nasal cult with C4a that high but in Lyme all bets are off.
Question Volume 1
Didn’t have a C3a due to difficulties getting Quest to send it to NJH. MARCoNS positive. VCS
prior to stopping CSM was normal. What kind of processing problem can cause false elevations
of C4a?
Answer
Usually delays in shipping sample or sample not frozen quickly. Or, sample thawed in transit to lab.
Question Volume 1
I’ve had several cases in which C4a started off as quite high then improved quite a bit at the
follow-up only to find out that the patient never filled a prescription for a biotoxin binder. In a
couple of cases, VCS improved. Have you seen this before and are there any explanations
besides less exposure to mold?
Answer
Need more information. I don’t see cases self-healing very often.
Question Volume 1
57 y/o women originally seen 11/09 with severe debilitating multisystem problems (some of 20
year duration) including local and systemic pain severe enough to cause emesis daily, muscle
spasms, sub q nodules, cognitive debility in memory recall word finding etc, cardiomyopathy
(PVC some conduction abnormality), tachy, endometriosis, hypothyroid, night sweats,
abdominal pain and indigestion, tinnitus, insomnia, fatigue, cyst pains, jerking muscles.
Her life was miserable and no help from any medical professionals. Standard supportive
treatments brought 30-40 % improvement and then tested for Lyme which came back CDC
positive; began multiple antibiotic treatment with slow but significant improvement over next 6-
12 months; finally convinced her to do ERMI 5/11 which was 2.37 (gp 1-gp 2) but high in A niger
and A pullulans Gp 1 log 23.99 She found multiple moldy areas and extensive remediation
followed. Waiting on most recent ERMI
Began treatment with CSM and all this seemed to provide significant benefit but still quite ill
and disabled. Presently on multiple antibiotics and CSM plus collateral support from the
alternative realm. GI remains improved, pain is reduced so only infrequent emesis, nodules have
diminished Labs as follows: HLA 4 3 53 12 3 52B, VCS passed, VIP 10, MSH 11, TGFB1 3780,
MMP9 715,C3a 228, C4a 2038.6 (LabCorp not valid?)
CD 57 426, Candida 4 plus Nasal culture positive Finished 6 weeks BEG and Rifampin recently
The Lyme treatment seems to be helping most symptoms but am curious about co treating with
VIP or starting with Cozaar, Actos, etc?
Answer
I'm delighted you have saved your wife. There is no better feeling than seeing a loved one return. Historically I have asked docs to do one thing at a time so you know what you did that helped. I would simply have you return to the lab data base, make sure your antibiotics didn't let a MRCoNS grow, make sure you are fixing CD4+CD25++CD127 lo/- too. Maybe we can start some discussion of diagnosis of tick borne co-infections. Please remember that the diagnosis of Babesia is not made by an antibody test. Good luck finding a Bartonella assay that is reliable. Most of what you might have read about Bartonella has not held up to careful review. Maybe Dr. Breitschwerdt's group can change that.
Question Volume 1
When using ddAVP, how long is it typically used for?
Answer
Start with 0.2 mg every other night to verify tolerance of the drug and absence of side effects, especially weight gain. After 5 doses, (9 nights) check serum osmolality and electrolytes verifying normal serum sodium. If symptoms persist, especially on the “off” days, then advance to QHS, again checking lytes and osmo after 10 days or so. Some people, especially those with putative POTS will be on the drug daily for an indeterminate basis. Some are on BID. Usually the osmo normalizes over time and the drug can be tapered. Don’t forget that all of your acquired von Willebrand’s patients need to carry DDAVP with them to stop nasal hemorrhage.
Question Volume 1
Can you clarify what you I should be looking for in terms of the osmo normalizing with ddAVP?
Generally, my patients have a normal to high normal osmo with relatively low ADH levels. If osmo becomes low normal, is that when I start to taper ddAVP? Can clarify what levels of osmo
you look for before deciding to taper ddAVP?
Answer
Yes, taper ddAVP when endpoint of normal ADH for a given osmolality is reached. You might have to re-start if the dysregulation is persistent (and it can be!).
Question Volume 1
I have several patients whom using the online VCS to monitor the efficacy and endpoint of CSM
is impractical either because their baseline was nearly perfect or on the other end of the
spectrum have cataracts. Which of the lab parameters would be the next best way to measure
the endpoint for CSM?
When VCS is normal, patients need to be assessed for completion of toxin binding by
CSM. The approach depends on whether or not patients are confirmed to be out of exposure in
their day to day life. If the home, workplace and school are all safe then simply stopping CSM
and monitoring VCS over time makes sense. For those with ongoing exposure, and who are 6
months out of initiation of CSM Rx, I switch to Welchol 2 tabs TID with food since CSM is such an
obnoxious drug to take longer than that. Others who are not assured of being exposed and who
are normal VCS can simply take Welchol if they know they have been re-exposed. Here use of a
stereotyped symptom appearance in reaction to exposure really helps a lot. If people know they
are being exposed by virtue of appearance within a few minutes of “their” constellation of
symptoms, then get out and take Welchol (or CSM for those who tolerate it) for 3-4 days is
indicated. The reality is that so many buildings are ones that have water-damage that for those
who are out and about, use of Welchol on a regular basis makes sense.
To clarify my question, I have patients who have cataracts or macular degeneration so we can't
run a VCS. Are there any other ways, such as labs, to determine the endpoint of CSM once the
environment is clear?
Answer
Yes, stability of labs to approximate those of controls.
Question Volume 1
I have a family of patients who I suspect may have biotoxin illness. For 7 years this family lived
in a house with a crawl space that was not properly maintained according to your
recommendations. They also had periodic water damage in their back storage room. Over time,
the mother developed debilitating chronic fatigue, daily chronic migraine, worsening of her
allergies and asthma, chemical sensitivities, along with other vague complaints such as joint
aches and myalgias. Repeat ANA, RF, ESR and CRPs have been negative over the past years
(performed by other physicians). Two of her children (ages 5 &10) are on the Autism Spectrum
and have multiple allergies, the oldest being hypermobile. Her middle son (7) is hyperactive,
with allergies and asthma. The father is 6ft 9 in with new onset eczema 2 years ago and allergies, but does not seem hypermobile. They moved to a newer home with a basement 3
years ago. They have had some minimal water damage while in this home (recent toilet
overflow from 1st floor through floor into basement/toilet leak on 2nd floor/bathtub leak 2nd
floor at drain into floor/occasional faucet leaks under sinks). Lyme has not been checked yet.
My questions are:
1. Do you have a basic screen of labs you use as a tip off for biotoxin illness?
2. Would you recommend ERMI for this family given the location of the water damage in the new home being in bathroom areas?
3. Is ERMI effective on laminate/wood flooring? I'm concerned that the gram amount needed of
dust would not be met if the flooring is not carpeted.
4. Do you have any supporting paperwork you send to insurance companies for pre-approval
and/or to appeal a denial for lab coverage (especially for HLA screening)?
5. Would you recommend any particular lab work for this family? The plan is to test the mother
first, given her symptoms seem the most debilitating.
Answer
Please see answers after each question: 1. Do you have a basic screen of labs you use as a tip off for biotoxin illness? Yes, on the website. 2. Would you recommend ERMI for this family given the location of the water damage in the new home being in bathroom areas? Yes 3. Is ERMI effective on laminate/wood flooring? I'm concerned that the gram amount needed of dust would not be met if the flooring is not carpeted. Use Swiffer testing. Mycometrics will provide directions. 4. Do you have any supporting paperwork you send to insurance companies for preapproval and/or to appeal a denial for lab coverage (especially for HLA screening)? Contact Debbie Waidner for specific letters. We do not post these. 5. Would you recommend any particular lab work for this family? The plan is to test the mother first, given her symptoms seem the most debilitating. Here is their website:http://www.mycometrics.com/
Question Volume 1
At most of my patients' follow-ups, I check VCS and draw complement C4a. I was hoping to see
that as the VCS improved, so would C4a. Instead, I often saw that they would go in opposite
directions. Have you seen this in your office as well? Would TGF beta or MMP 9 correlate better
than C4a to VCS?
Answer
I routinely look at TGF beta-1 and C4a at follow up. We are looking at a systemic inflammatory response syndrome for which there is no guarantee that only one aspect of that will be an appropriate marker when four or five others are involved. There are no simple short cuts to take in these cases. VCS must be normalized. TGF beta-1 must be normalized; C4a must be normalized. I cannot see a correlation of TGF-beta with clinical response, VCS or the other blood tests. For the patients who are well symptomatically, VCS is normal and C4a, VEGF, MMP-9 have all normalized, yet the TGF goes up (or down but is still high) what intervention is suggested? I do nothing, choose to ignore it. TGF beta-1, like all of these assays of inflammatory response is not the sole measure of wellness or illness. High TGF beta-1 usually is associated with low CD4+CD25++CD127 lo/-, a deficiency that is reported in the literature with greater than normal levels of inflammatory elements in tissue. We can’t measure tissue levels of IL-17, Il-2 or Il-23 and we need to be sure. High TGF beta-1 can occur in other illnesses includes breathing trouble, fibrotic changes and hypermobility. I usually watch those patients for change over time. I would strongly disagree that TGF beta-1 has no relations to clinical response as over the past 5 years, since this office brought the test to Cambridge Biomedical and over 4000 assays; it has one of the most important tests in the book. I would appreciate seeing a deidentified roster of your patients that do not show any relationship to TGF beta-1.
Question Volume 1
I have several patients in one family who lived over an "earthy smelling" crawl space for 7 years
and had water damage in part of their home. They have been in a new location for 3 years now
that seems mold-free, but all are still having health problems that I suspect may be from
biotoxin illness. In particular, the 39 year old mother has developed debilitating chronic fatigue,
myalgias and arthralgias, and chronic daily migraine, all of which started when she lived in the
WDB. She also suffers from severe allergies and asthma. Two of her three sons are on the
Autism Spectrum and have allergies/food sensitivities as well as migraines - ages 5 and 10. The
other son has allergies and asthma - age 7. All 3 children were born while the family lived in the
WDB.
1. I was wondering what you would recommend for basic screening labs that would be a tip off
for Biotoxin Illness for this family.
2. Also, do you have any supporting paperwork for pre-approval and/or to appeal a denial for
HLA testing?
3. Finally, this family has laminate flooring. Would an ERMI be accurate on this type of flooring
given the minimal amount of dust that would be accumulated in the vacuum?
Answer
The basic screening labs for pediatric cases include HLA, MSH, TGF beta-1, MMP-9, antigliadin antibodies, anticardiolipin antibodies and CD4+CD25++CD127 lo/-. Also the C4a, understanding the C4a must be done at Quest and not LabCorp. LabCorp does not do the CD24+ CD25++127 lo/- assay. “Earthy smelling” homes are like art in a sense that beauty is in the nose of the beholder. I suggest ERMI testing. Please contact this office for the template letter we use for HLA. ERMI testing in homes with hardwood floors or non-carpeted floors are best done by Swiffer cloth used on surfaces such as a top of a shelf, top of a door frame or top of a window sill. Please check with Mycometrics regarding their protocol; they usually want 10 surfaces to be collected with Swiffer to be sure enough dust is present.
