Volume 1 FAQ

85 Total Items

Question Volume 1

Have you found Quest’s VIP to be reliable? I haven’t seen any low levels yet when I used to see it all the time with LabCorp’s?

Answer

LabCorp curiously changed the manufacturer of the kit they use for VIP in November 2011; the resulting normal range was changed markedly just after our VIP paper was presented at the Johanning conference in September, 2011. It is my distinct feeling that there is an agenda that someone at LC in Burlington has about Lyme that impacts on that lab’s aberrant behavior. I have no proof of that concern and cannot say for sure. The normal range has been altered by LabCorp in no less than 6 tests. I was able to have the bizarre range for MMP9 changed but the decision only applied to my patients! Still, I use Quest for all VIP assays now. We still see “odd” levels from other docs who send samples to Quest but not as many as when they used LC. We still add Trasylol to chilled tubes just after the draw. I hope your office is drawing your blood samples; otherwise you are at the mercy of other lab techs.

Question Volume 1

Is it ever possible for the VCS, C4a, or TGFB1 to be not improved compared to baseline after adequately removing mold exposure, using biotoxin binders, and treating Lyme and MARCONS?

Answer

Yes. Especially in 4-3-53 and 11-3-52B. The absence of correction of these parameters led to the VIP protocol.

Question Volume 1

I’ve noticed several patients on biotoxin binders who have had dramatic increases in their C4a levels at their follow up visits while on biotoxin binders. What are the common reasons for this?

Answer

Which Biotoxin Binders? CSM? Welchol? Or are you trying something else? We have tried just about everything. Some people have said they get good results variously with charcoal, bentonite, chitosan, pectin and more. Every time I tried those there is no change in labs. Re-exposure is the most common by far. As MASP2 gets revved up, auto-activating, the idea of sicker, quicker comes into play. C4a can go to over 190,000. Eradication of MRCoNS will also usually be followed by a rise in C4a.

Question Volume 1

I am looking at your VEGF cases versus controls and having some difficulty understanding it. I only see results listed for the mold cases. And if I understand it about 21 percent have VEGF values above 85. This is a long winded way of my asking if an elevated VEGF gives any information about the presence of mold biotoxins.

Answer

No. The labs simply tell us about innate immune activation. Without specific diagnostic testing we must rely on differential diagnosis.

Question Volume 1

When Ritchie was here last year, he outlined treatment protocols for each step. However, we didn’t get to VEGF. My understanding was that Actos was useful for that as well as for elevated MMP9. Does that mean that high dose fish oil treats low VEGF as well? Any other treatments besides the exercise? How long is the fish oil used for?

Answer

Yes, high dose omega-3 can duplicate the genomic effects of Actos. 2.4 g of EPA and 1.8 g DHA is easily obtained with three of the concentrated Nordic Natural capsules a day. Use enteric coated if you can. Follow for one month and re-check the labs.

Question Volume 1

Do any of the labs such as C4a, MSH, TGF beta, VEGF need to be drawn at a certain time of day or fasting?

Answer

No.

Question Volume 1

Two more lab questions. I am wondering if I have to specify to our local Quest lab that they send the C4a and C3a test somewhere back East to be run? Also, does the VIP test have to be done fasting and after 3 days of a high carbohydrate diet? That is what LabCorp says in their info on the test. I’ve ordered the nasal culture kits from Diagnostic Lab Medicine, thank you for the info.

Answer

The lab code for C4a should specify that the test is sent to NJC. Check with your local Quest rep. I never use LabCorp now for the VIP; so many reasons, not the least of which is the commentary on testing/diet.

Question Volume 1

I am confused about the normal range on TGFB-1. I am getting some results back from Cambridge Biomedical, with a range of 344 to 2382 pg/ml. Other samples are being run somewhere else (even though both are sent to Quest) and the normal range is listed as 3465 to 13,889 pg/ml. Those samples say “Transforming Growth Factor beta, serum” instead of “Human transforming growth factor beta 1, EDTA plasma.” Are they different tests, different techniques? Is it valid to use the results but with the lower normal range on the second kind of results, or do we have to re-run the tests, and somehow get Quest to do the same thing every time?

Answer

Suggest you call the lab where the normal range is so high. I suspect that is ARUP. The kit I validated with Cambridge uses double spun plasma to be sure that all platelet contamination is gone. I can’t vouch for accuracy of serum testing here. I would not suggest that you use ARUP for serum TGF beta-1. Sorry to ruin your data set. It is like VEGF. All my data is standardized by plasma and never with serum.

Question Volume 1

Please direct me to information regarding the testing and specific clinical interpretation of CD4 and CD25.

Answer

Take a look at the PowerPoint from 9/2011 on T regs (available in the Physician's section under member resources, January 2012), the multiple bibliographies and the recent newsletters. You probably need to set up a dialogue with the local Quest rep to send samples to Chantilly. Your rep needs to be involved at first.

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.