Have here anyone seen KDM at WPI? Can you tell me about your experience?

[Valentijn]

Now we've decided the only way is to go live in Reno for the few months. We've tried for WEEKS - several phone messages, emails, etc. - to get an appointment with the doc on staff at WPI - P0r z@n - to no avail. WPI's website (or Facebook?) at times has said "Reopening in Sept. 2014" - that's scary!

He doesn't spend a lot of time in Reno I think, and is mostly at the Brussels office. But even if he's not in Reno, the office should theoretically be able to handle the IV infusions without him.

So I've really got no idea - maybe @Sushi knows something?

 

[Sushi]

...We've now exhausted every possible doctor in these 2 locations who are seeing new patients. None are willing to do someone else's protocol. I understand why, but all we really want is someone to put in a PICC line and prescribe us the meds (since KDM's prescriptions don't seem to work in the US for us).

Now we've decided the only way is to go live in Reno for the few months. We've tried for WEEKS - several phone messages, emails, etc. - to get an appointment with the doc on staff at WPI - P0r z@n - to no avail. WPI's website (or Facebook?) at times has said "Reopening in Sept. 2014" - that's scary!

So - is anyone still going to WPI? Do you see one of the other docs on staff or do you wait for KDM? Do they do the IVs for you? How, if the doc is only there 3 days/week? Are they responsive when you're Herxing and need help? Can you eventually go home and continue treatments without any other doctor, or do you need a local doctor for emergencies? If the latter, how do you find one who'll follow another's protocol? Yikes this feels so hard, and I'm not even the sick one with exhaustion and brain fog!

(Thanks for listening...Sorry the end is a bit ranty but it's SOOOOOOOO frustrating!)

We must have crossed paths in Reno in January--sorry we didn't meet. I have seen KDM many times in Brussels and the last time in Reno. Yes, too bad you didn't get the Infectolab test in the first round. The reason he does this (I think) is that the shipping from the US is so very expensive so he does other tests first to try to judge if this test is worth the extra cost. I had it done in Europe which was much less expensive.

I just successfully filled one of KDM's prescriptions in the States, as do other patients. They faxed it to Walgreens for me and there was no problem. He just uses his US license instead of his Belgian license. So, theoretically you might be able to get the IV's through Walgreens Home Health or Infuserve (http://infuserveamerica.com/).

I do have some experience with the Reno clinic. Do you use chat? (sign in in the lower right hand corner of the screen, then click on chat next to my name). It would be easier to discuss it there. But from what I have heard, if you did need to go to a clinic for infusions, it would be better to go to Brussels where the process is all set up and runs pretty smoothly. I know several who have gone from oversees for the infusions.

Best,
Sushi

 

[*GG*]

Hi this is my first time posting (to any forum ever!) tho i've been stalking (kinda negative term for reading and learning...) PR's wonderful forums for a while now. Thanks to all of you for sharing - it is REALLY HELPFUL!!

My 29-year-old daughter has had CFS/ME for 8 years. We saw KDM in Reno last January and yes, waited way longer than he'd said for test results. But we both liked him a lot and think he certainly knows his stuff.

After first batch of test results, he ordered LTT test from InfectoLabs which confirmed his suspicion of Late Stage Lyme (tho she'd been tested several times previously in other ways for Lyme, and even treated for Bartonella and Lyme via oral abx with no improvement two years ago). However doing this test as an afterthought has delayed treatment even longer.

Since April we've known that he recommends IV abx - similar to what many of you are told: 6 weeks Ceftraxione, 6 weeks Azith...We've been trying since then to figure out how to accomplish this. We live in the NY metropolitan area (in NJ), and have an easy place to stay in New Hampshire. We've now exhausted every possible doctor in these 2 locations who are seeing new patients. None are willing to do someone else's protocol. I understand why, but all we really want is someone to put in a PICC line and prescribe us the meds (since KDM's prescriptions don't seem to work in the US for us).

Now we've decided the only way is to go live in Reno for the few months. We've tried for WEEKS - several phone messages, emails, etc. - to get an appointment with the doc on staff at WPI - P0r z@n - to no avail. WPI's website (or Facebook?) at times has said "Reopening in Sept. 2014" - that's scary!

So - is anyone still going to WPI? Do you see one of the other docs on staff or do you wait for KDM? Do they do the IVs for you? How, if the doc is only there 3 days/week? Are they responsive when you're Herxing and need help? Can you eventually go home and continue treatments without any other doctor, or do you need a local doctor for emergencies? If the latter, how do you find one who'll follow another's protocol? Yikes this feels so hard, and I'm not even the sick one with exhaustion and brain fog!

(Thanks for listening...Sorry the end is a bit ranty but it's SOOOOOOOO frustrating!)

@NHjane I see a Dr in Boston and have had a couple of people tell me of a good Dr in Concord, NH, not sure how knowledgable she is in regards to Lyme, perhaps you could figure that out via a phone call? Not sure, perhaps you would want feedback from patients. I thought some of the good Drs were in CT, since that is where Lyme gets it name!

GG

 

[Gingergrrl]

Wow, this thread has been so incredibly informative and eye opening as I just learned last night that KDM even sees patients in Reno! I live in L.A. and am way too ill to travel to Belgium (this is out of the question) but I think we could manage a one hour flight to Reno if I use a wheelchair at the airport.

Long story short, I called WPI and spoke with "Kellen" today who was very nice. She said that KDM is now coming to Reno every other month to see patients and that the wait time is not long. But she said there needs to be enough pts in any given month for him to make that trip. I e-mailed his assistant/scheduler, "Ira" and am awaiting a response. From this thread, it sounds like I may be waiting a while LOL.

In my case, to the best of my knowledge, I do not have Lyme disease and have ME/CFS from multiple other triggers including mono/EBV, HHV-6, and and an initial neurotoxic reaction to an antibiotic. I was tested for Lyme once out of sheer curiousity and the test was negative.

My questions are:

1) Does KDM only focus on Lyme disease or does he investigate all possible causes of CFS? I am totally open to having another Lyme test but I hoping for a broader perspective!

2) Does KDM look at the cardiac issues related to CFS which for me at present are the most predominant and distressing?

3) If I bring him all my past results (for example, I am negative for SIBO but positive for Leaky Gut) do I have to repeat them or can he utilize my past results without needing unnecessary duplication?

4) Do the blood tests have to be processed in Belgium or can he use a U.S. lab? I have insurance (at least for now) and "Kellen" at WPI said that I can submit everything to insurance and many patients get reimbursed. Is this not accurate? I can pay $700 for the consult but cannot pay $5000 for Belgium lab tests/fees as stated by an earlier poster.

I really would like to see KDM (as I have called other specialists like Dr. Montoya at Stanford and was told he no longer even sees new patients at all!) My viewpoint is that I have nothing to lose by seeing KDM (except for a lot of money...) but if he can identify even one thing that helps me, I will be eternally grateful

I am open to all feedback on how to proceed and thank you all in advance.

 

[Sushi]

...I e-mailed his assistant/scheduler, "Ira" and am awaiting a response. From this thread, it sounds like I may be waiting a while LOL.

My questions are:

1) Does KDM only focus on Lyme disease or does he investigate all possible causes of CFS? I am totally open to having another Lyme test but I hoping for a broader perspective!

2) Does KDM look at the cardiac issues related to CFS which for me at present are the most predominant and distressing?

3) If I bring him all my past results (for example, I am negative for SIBO but positive for Leaky Gut) do I have to repeat them or can he utilize my past results without needing unnecessary duplication?

4) Do the blood tests have to be processed in Belgium or can he use a U.S. lab? I have insurance (at least for now) and "Kellen" at WPI said that I can submit everything to insurance and many patients get reimbursed. Is this not accurate? I can pay $700 for the consult but cannot pay $5000 for Belgium lab tests/fees as stated by an earlier poster.
...

First, you would get a much quicker response if you called Himmunitas (KDM's clinic in Brussels). They get overwhelmed with emails but do answer the phone during office hours. Check the here for the hours. I called Ira recently to follow up on an email--calling works much better!

1) KDM checks for a big variety of pathogens--viral and bacterial, not just Lyme and co-infections. He also thoroughly checks the immune system, the gut and prescribes cardio-pulmonary exercise testing when appropriate.

2) He is a cardiologist (he is certified in several specialties), so yes, he is good with ME-related cardiac issues.

3) He will not feel the need to repeat tests if he feels that you have had adequate ones and if you give him copies. However, he usually prescribes DNA gut testing and since Redlabs seems to be the only lab (that I am aware of) that does this, he would probably request that test.

4) I use US labs for any tests that can be done here (he writes separate lab requisitions). But, most of the tests which he would think necessary are considered specialty or experimental and are not generally available in US labs--and if they are, insurance wouldn't pay.

I have never heard of WPI submitting things to insurance. Generally, patients do this themselves. But the tests he orders at US labs would automatically be processed through your insurance.

Best,
Sushi

 

[Gingergrrl]

First, you would get a much quicker response if you called Himmunitas (KDM's clinic in Brussels). They get overwhelmed with emails but do answer the phone during office hours. Check the here for the hours. I called Ira recently to follow up on an email--calling works much better!

1) KDM checks for a big variety of pathogens--viral and bacterial, not just Lyme and co-infections. He also thoroughly checks the immune system, the gut and prescribes cardio-pulmonary exercise testing when appropriate.

2) He is a cardiologist (he is certified in several specialties), so yes, he is good with ME-related cardiac issues.

3) He will not feel the need to repeat tests if he feels that you have had adequate ones and if you give him copies. However, he usually prescribes DNA gut testing and since Redlabs seems to be the only lab (that I am aware of) that does this, he would probably request that test.

4) I use US labs for any tests that can be done here (he writes separate lab requisitions). But, most of the tests which he would think necessary are considered specialty or experimental and are not generally available in US labs--and if they are, insurance wouldn't pay.

I have never heard of WPI submitting things to insurance. Generally, patients do this themselves. But the tests he orders at US labs would automatically be processed through your insurance.

Best,
Sushi

@Sushi I wanted to give you and everyone a quick follow-up.

Ira (who is in Belgium but schedules the appts for KDM in Reno) so far has not responded to my two e-mails. I was not able to call Belgium last night due to the nine hour time difference from L.A. My gut feeling right now, even though I think KDM is a brilliant doctor and researcher, is that it is too chaotic and difficult to get an appt at the Reno clinic b/c it is so new. Maybe once it is up and running, the process will be easier. The woman at WPI is unable to tell me when KDM will be back in Reno and I need this info as my husband and I would have to book a flight, hotel, etc, and would need a good amount of advanced notice.

Also, from reading previous posts, I cannot afford the costs of sending the bloodwork to Belgium ($5000K or more!!!) when I can choose another Dr who can run tests through a U.S. lab who will take my insurance.

If I have any chance of seeing CFS specialist within CA (so we can drive vs. fly) that is my first choice so I am going to pursue seeing Dr. Kogelnick or Kaufman at the OMI. Of course, if I ever do hear back from Ira or anyone at WPI that could change things.

 

[Sushi]

Note: I did get an email response to my request for a phone appointment--it took a week, pretty good knowing how much email traffic they have. But I'd guess established patients might get a quicker response than prospective patients.

Sushi

 

[Gingergrrl]

Note: I did get an email response to my request for a phone appointment--it took a week, pretty good knowing how much email traffic they have. But I'd guess established patients might get a quicker response than prospective patients.

Sushi

@Sushi, I am glad you heard back from them and I suspect for an established pt, it is much quicker than a new inquiry. In any case, I got an appt for mid-July at OMI and posted all about it another thread. Thanks for your help and guidance with this!

 

[end]

We must have crossed paths in Reno in January--sorry we didn't meet. I have seen KDM many times in Brussels and the last time in Reno. Yes, too bad you didn't get the Infectolab test in the first round. The reason he does this (I think) is that the shipping from the US is so very expensive so he does other tests first to try to judge if this test is worth the extra cost. I had it done in Europe which was much less expensive.

I just successfully filled one of KDM's prescriptions in the States, as do other patients. They faxed it to Walgreens for me and there was no problem. He just uses his US license instead of his Belgian license. So, theoretically you might be able to get the IV's through Walgreens Home Health or Infuserve (http://infuserveamerica.com/).

I do have some experience with the Reno clinic. Do you use chat? (sign in in the lower right hand corner of the screen, then click on chat next to my name). It would be easier to discuss it there. But from what I have heard, if you did need to go to a clinic for infusions, it would be better to go to Brussels where the process is all set up and runs pretty smoothly. I know several who have gone from oversees for the infusions.

Best,
Sushi

www.infuserveamerica.com has been nothing but a bloody NIGHTMARE for me. My temperature sensitive Glutathione has been stuck in Customs for days on end, and still counting. They have made NO attempt in helping to rectify the situation, all I have had is excuses. They even had issues processing my Credit Card initially(at no fault of my own)which has never happened with anyone ever in the past. I am sooo f****n furious.

 

[Sushi]

@end

Sorry that Infuserve has been so bad. I have no experience with them--I just have heard that they are one of the few home health services in the States. I hope it gets straightened out to your satisfaction.

Thanks for telling us all your experience.

Sushi

 

[Gingergrrl]

www.infuserveamerica.com has been nothing but a bloody NIGHTMARE for me. My temperature sensitive Glutathione has been stuck in Customs for days on end, and still counting. They have made NO attempt in helping to rectify the situation, all I have had is excuses. They even had issues processing my Credit Card initially(at no fault of my own)which has never happened with anyone ever in the past. I am sooo f****n furious.

@end That is awful and I hope you get it straightened out. I also take liposomal glutathione (liquid) every day which must be kept in the fridge and I know how super expensive that sucker is. I hope they get it back to you in time and everything works out okay. Keep us posted.

 

[Sammy]

www.infuserveamerica.com has been nothing but a bloody NIGHTMARE for me. My temperature sensitive Glutathione has been stuck in Customs for days on end, and still counting. They have made NO attempt in helping to rectify the situation, all I have had is excuses. They even had issues processing my Credit Card initially(at no fault of my own)which has never happened with anyone ever in the past. I am sooo f****n furious.

Sal, check your email dude. Your phone's still switched off?

 

[end]

@end That is awful and I hope you get it straightened out. I also take liposomal glutathione (liquid) every day which must be kept in the fridge and I know how super expensive that sucker is. I hope they get it back to you in time and everything works out okay. Keep us posted.

Hi @Gingergrrl

As it turned out my Glutathione spent 15 days in transit. The product degraded which was apparent visually. However this was NOT Infuserveamerica's fault!

-FedEx IS to blame. FedEx gave specifics to the shipper(Infuserveamerica)regarding postage terms etc which were met by the shipper(Infuserveamerica), then FedEx decide to alter those requirements DURING transit!

Of late FedEx has causes me multiple delays from different shippers with the same issue - "insufficient documentation"

Where with others couriers, I have not experienced an issue. That has been my experience....

 

[Gingergrrl]

@end Sorry to hear this happened and hoping that somehow you can get reimbursed by Fedex for the Glutathione?

I order Liposomal Glutathione from "Empirical Labs" and did the two day shipping and it actually arrived in two days with no problem. They told me not to order at the end of the week as it could sit in a wherehouse over the weekend and the best day to order is on a Monday. I think they use UPS vs. Fedex (but I am not sure, do you live in the US?)

I usually purchase the Glutathione from my ND to avoid this problem but don't know if buying from a local practitioner is an option for you. She is sometimes out of it unless I plan ahead. Sorry again this happened to you!

 

[end]

Hi @Gingergrrl, thanks for the heads up. Infuserveamerica send at a stipulated day of the week to avoid excessive time spent in transit. All I done was call Infuserveamerica after it was finally delivered, and they had me return the shipment via FedEx. I spent a while speaking with there CEO(who is a really nice guy)and he just resent my order with out an further hassle!

Overall despite the initial concerns, it has worked out well. If there are any future issues I now know that all I need to do is give them a phone call as there is a lag via email

I am in Australia and the cost of the Biological Therapies brand Glutathione for a 2000mg unit is about $150. We pay far far LESS from Infuserveamerica