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Chicago Doctors (Dr. Keith Berndtson & Dr. Edelberg)

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Slayadragon

New Member
This is for deliarose and whoever else might be interested.

Delia, I did a content search and noted that you (and one or two other people here) saw this doctor a couple of years ago.

Your comments suggested that you had a bad experience on the Xyrem that he prescribed and weren't sure about his following of the Teitelbaum approach.

Someone else said that she really liked him, but stopped being able to afford him.

At the time, he was heading up a center associated with Rush and funded by venture capitalists. It sounds to me like the FFC's, which makes me think that it must have been pretty expensive. He also expressed his frustration to me about having to report the center's operations to a group of regular doctors. (I wonder if that might have been part of his focus on "conventional" CFS treatments---e.g. Teitelbaum and drugs---though he didn't state that explicitly.)

Anyway, he's had his own practice in downtown Park Ridge for about nine months. Thus far I've spent two hours with him. Last week we did an initial interview, and today we talked some more and did a Vitamin C IV slow push.

Apart from Dr. Guyer, he's probably the best CFS-type doctor I've seen. I think he may have more potential than any other doctor people have mentioned on this board, though it's possible that our high-level discussion made him come across especially well to me. (It's hard to know how good other doctors are when patients just report what on their treatment suggestions and bedside manner rather than their understanding of CFS theory.)

Anyway, he was really interested in all my varied experiences and certainly understood everything that I'd discussed. He says he's particularly interested in detoxification issues, which obviously puts him at the cutting edge. He talks in more of a theory formulating tone (Dr. Guyer seems to think about these things on his own and always way prior to my bringing them up), which is interesting to me.

Whether he will end up giving me any original and useful suggestions, I don't know. Thus far we're just discussing what I've done so far. He caught on very quickly with regard to those things he'd not picked up on in the past (e.g. my insane detox reaction when adding the FolaPro and the related MetaMetrix test results), and was perfectly agreeable to my request of doing Vitamin C IV's twice a week.

He did the IV today and hit my vein fine (unusual). I think he tried the slow push rather than a normal IV just as an experiment, which is fine. We shall see if it works as well as the regular IV's (meaning absurdly well!) over the next few days.

It's hard to believe that I've found a CFS doctor who's in-network (BCBS) for me. That means a $25 co-pay. I don't know how long BCBS will pay for me to see him twice a week, but that's okay. I don't intend to keep doing the Vitamin C IV's twice a week forever....just until I get a grip on the mold crap.

(Dr. G said it would be a dozen or so IV's before I'd start to feel a long-term effect. So far I've done six and am still up and down a lot. Going from one to two per week may make a big difference.)

I am under the impression from previous posts here that his fee was something like $250 for a follow-up when he was at Rush. I don't think that's the case now. Perhaps he will raise it eventually (a lot of the "famous" CFS doctors seem to), but I think that will be a while.

In any case, having an M.D. in Chicago (15 minutes from my home) is kind of reassuring. Rarely do regular M.D.'s do anything for me but mess me up more, no matter what health problems I have.

Oh, you know, he did recommend something to me today. I was talking about the huge (and painful!) detox reactions that I've gotten to essential fatty acids, and especially to this stuff called Udo's Oil (which contains flax and some GLA's). We talked about why that might be, and he theorized on the spot that lecithin, phos choline or phos serine might help. And of course, that's the Rich/Yasko supplement that I've skipped. Considering that he knows nothing of Rich/Yasko/etc., I think it was impressive that he came up with it on the spot. (I am pretty sure that Dr. G would have hit it right away too, but at $375/half hour and him 200 miles away, there's only so much in-depth experiential stuff we can cover.)

The one thing that seemed only moderately knowledgeable about was hormones. That's a huge part of my treatment plan....probably the thing that over the years has helped me the most. (The verdict is still out on the resolution of the mold thing, though I'm convinced that the problem was getting so much worse over the past year that both my husband and I were on the way to very early deaths had we stayed there.) For anyone reading this, I'd considering finding another doctor to monitor hormones and wouldn't skip them forever if Dr. B doesn't bring them up in detail.

(Note that he actually could be really great with hormones, since we didn't discuss them at length.)

How much do you know about Dr. Edelberg? Apparently Dr. B did his initial training with him a decade ago, and he says his approach isn't that much different. I recall reading some things about Dr. E a long time ago on the board, but none of it was impressive for me to go seek him out. I think my thought at the time was that he had his own sort of narrow approach and would be disinclined to deviate from that based on my thoughts (and hearsay of Dr. G's). Maybe I am wrong about this though.

After these past two sessions, I tend to think Dr. B is a bit more open-minded and flexible. Those doctors who respond well to me (obviously many don't) are invariably those who are interested in learning as much as they can from wherever they can, which is a very unusual trait. And now that he's on his own (rather than reporting to committees of doctors and investors) and has time to think about things a bit more, he may well move to an advanced level very quickly. He certainly has the potential.

Anyway, I will continue to write to you about my experiences. I think perhaps if you wait a bit, I will get him up to speed on the stuff that he doesn't already know about. That would likely make any visits you have with him more fruitful, I think.

BTW, thanks for the reference to the Renteas. I talked to "Dr. Ross," who actually was pretty good. He understood and "believed in" all the detox stuff already, which was nice. And he could tell just by looking at my supplement list what all my issues were, which also was nice. His treatment suggestions were things I'd never heard of (starting with frankincense/boswellia for inflammation), but he seems to me legitimate and knowledgeable enough that I'm willing to give him a chance. I'll definitely go back to him. Maybe not until I feel like I'm starting to get a grip with regard to the mold detoxification (or when it starts to seem stabilized) though.

The bad thing was that they insisted on giving me the Vit C IV for a full two hours. The tech there was very competent (and apparently Dr. Ross is even more so), but I think that length of time is too much of a shock to my system. (I also got a huge green bruise on my hand that, after 10 days, has yet to go away.) Dr. G's office does them (on me) for about 35 minutes. (Dr. B took about 15 minutes for this slow push.) I don't know if they'd speed it up or not. It's nice to have them there in the event I need them, anyway.

So that makes two out of three new doctors I've seen in the past two weeks well worth the visits. Considering that I thought that there were no doctors in the Chicago area worth seeing, that's pretty impressive.

For anyone reading this (or doing a content search) the doctor NOT to see is Dr. Thomas Drost (Dr. Tom Drost) of Oaktree Wellness in Wheaton, Illinois. I have been forbidden by the moderators to post a summary of our meeting, apparently because they believe that it was so horrible as to be potentially libelous. Fortunately I have other doctors and didn't pay for my session with him, so I was only out the two hours I spent driving back and forth to Wheaton. I find it hard to believe he would help anyone though, and would hate to have anyone spend a lot of time and money with him for no good reason. WORST CFS-TYPE DOCTOR I'VE HEARD OF. Beware!
[This Message was Edited on 06/06/2008]
 

munch1958

Member
I found Dr Edelberg from the Co-Cure Good doc list. I've been seeing him for 16 months.

He is the author of the book "The Triple Whammy Cure." His theory is that this cluster of illnesses is caused by stress, shifting hormones and low serotonin.

He believes my stressor is the chronic pain of FM. I do agree that hormones are an issue. Serotonin is not a problem for me. He did a Neuro relief test which showed my serotonin levels are high and the rest of my neurotransmitters are normal.

He did order some tests for Celiac Disease; Vitamin D, a Spectracell nutritional analysis, an ELISA candida test and other labs for hormones.

He does not find growth hormone helpful for CFS or FM. He thought I was wasting my time with it and went so far as to say I'd be a diabetic in 6 months by using it. (It's been 6 months - and no -- I'm not!) For me it's been a wonderful therapy but I did flunk the stim test for HGH release.

We don't agree on Lyme treatment and have had 2 nasty discussions about the science of it. Spirochetes can't be cultured from humans. The only way to harvest them is upon autopsy of the brain. Not feasible in a live person. DUH!

When I said I wanted to treat my Lyme Borreliosis with long term Abx he sort of threw up his hands and said that next I'd want to treat my ABs to chicken pox.

Those ABs are not making me sick while spirochetes are at the root cause of my chronic illness. He did relent and write a RX for Minocin when reminded that teenagers take if for years for acne or to look good. Hey, I just want to feel good.

Now we start out appointments with him saying "you are here for Fibro which you believe was triggered by Lyme Disease" then we move on to my issues which are:

sleep initiation and duration insomnia.

HPA axis dysfunction -- low thyroid, adrenal insufficiency, adult growth hormone deficiency.

He was prescribing B-HRT and is very good at it. I've switched over to pellets because sublinguals were not
getting my blood levels up. Pellets are implanted under the skin of the hip. Dr E doesn't do these.

Dr E is not treating underlying infections of Borrelia, Babesia, Bartonella, Candida, CPN, EBV, and my newest infection that I picked up in Phoenix in Jan 08 -- Valley Fever.

Valley Fever is a fungi infection that is inhaled into the lungs from the spores in the dirt. Valley fever is a form of coccidioidomycosis (kok-sid-e-oi-doh-mi-KOH-sis), or cocci (KOK-si) infection.

My CD-57 count is 70 (up from 30) so my immune system is still surpressed. It should be around 200/ Those with a low immune systems are very susceptible to Cocci infections.

Dr E doesn't do any treatment for hypercoagulation with heparin. This is one of the newer cutting edge treatments for killing pathogens.

Most of my treatment is being done by my LLMD with some treatment from my endocrinolgist. Dr E is sort of my primary care doc at the moment.

He is accessible by email but not by phone. If your question is too complicated he asks me to come in for an office visit.

I live too far away to take advantage of the rest of the health care practioners that are on his team. It's a 2 hour drive (one way) to see him. I go 4 times a year.

In a nut shell, if you are looking for someone who believes in FM or CFS then he's very helpful. If you are looking for a doc who will RX hormones then he's very helpful.

There's no blaming the patient or telling you it's in your head. That's why I continue to go back there. He is open minded enough to admit he doesn't know EVERYTHING.
 

deliarose

New Member
I did find Berndtson to be friendly and open-minded, but I don't know that I will ever get past his advice about Xyrem...

When I subsequently quizzed an ID doc who specialises in CFS on this... Joe Brewer.. he looked it up.. shook his head.. and said he didn't know why anyone would put a young person on a powerful drug with NO KNOWN MECHANISM that affects the brain.

But then look at Valcyte. I'm not sure about the wisdom of docs Rxing that drug either...

Unfortunately, we're all just guinea pigs.

Thanks again! And glad Berndtson is helping you.

Delia
 

Slayadragon

New Member
I mentioned to Dr. B yesterday that I thought he was astounding that in New York state only endocrinologists were allowed to prescribe human growth hormone.

I think he told me the same thing was true in Illinois. (This was about two seconds after he inserted the IV, and so I wasn't paying as close attention as I sometimes am.)

I'm under the impression that Xyrem is an artificial way of getting the brain to create more HGH. If you push it down into Stage 4 sleep, more HGH is supposed to be produced.

I don't know if that's true of people with CFS, and I certainly haven't heard a whole lot of good experiences about it on the board.

It would be a lot simpler if doctors could just prescribe supplemental HGH, which for me has been outstanding. Cheney was recommending that for a while, which perhaps accounts for the mini-craze of doctors in prescribing Xyrem in the hope of getting its effects.

Stupid, obviously. Hormones seem to me almost always better than drugs for CFS patients, if you're trying to accomplish the same goal.

I'm not sure I agree that his theory was off though.

There are doctors that I won't forgive for a single bad incident though, so I certainly don't blame you for being reluctant to go back.

If I'd had a doctor who'd strongly encouraged me to take a high dose of an antiviral even after I reported that it was making me really sick, I'd not be very forgiving of him/her at this point either.

 

Slayadragon

New Member
Hi Linda,

Thanks for the info. That’s all very interesting.

Is it true that only endos can prescribe HGH in Illinois?

Your note makes me feel like Dr. E is a bit on the “I’ve made up my mind” side. That could be annoying, but with the dearth of CFS-type doctors in Chicago it’s kind of a miracle to find anyone.

Dr. B (I can’t spell his last name yet) asked me several questions about HGH but didn’t express any concern about my using it. It’s possible that he didn’t want to criticize my other CFS doctor, but in that event I’d think he’d be even less likely to try to override the conclusions of an endo.

I really like HGH too, and probably should bow to Dr. G’s wisdom of taking it every day regardless of the cost. Or not take it for a while and see if I can get an IGF-1 low enough for an endo to do a stim test. On or off the HGH, I've never gotten one under the cut-off before, but maybe I'll get "lucky." (How long do you think I should be off before doing the IGF-1?)

What I have found is that my body absolutely, positively does not heal from any trauma if I don’t take HGH. Sprains never heal, surgical incisions never heal, bruises don’t heal, cuts don’t heal. And I’m talking MONTHS for all of these. Several days of HGH makes a huge difference. So I’m figuring that my insides must not be healing very well from stress either.

I can’t believe you got another bug (Valley Fever) on a trip. How did you find out about it?

I really want to go camping to see if being in a pristine environment will decrease my mold sensitivity, but you are making me afraid to go for even a short walk outside. Have you come up with anywhere that seems like it would be preferable in terms of pathogen avoidance?

Another question for you:

I’ve been getting regular slow drip IV’s of Vitamin C for the past five weeks. They’re supposed to be detoxifying, and I’ve been finding them really helpful.

Yesterday Dr. B suggested that we do a “slow push” IV instead. This is delivered with a syringe into the vein. The body gets hit with the same amount of solution but all at once (about 10 minutes) rather than spread out over time.

Today I feel quite awful. Like awful in a die-off way. Kind of psychotic. It’s hard to explain the difference between “die-off awful” and “detox awful,” but after the past 18 months I’m reasonably good at telling them apart.

I then recalled that his rationale for doing the slow push was some work that suggests that in very high doses, Vitamin C acts as a pro-oxidant and thus as a pathogen killer. Or at least he thought it might have that potential for me.

I said, fine, that’s nice, always good to wipe out some bugs. I didn’t think it would give me a herx though!

I suppose I shouldn’t be surprised, since even oral vitamin C (mixed with salt) gives some people very bad die-off. I’ve never understood that since I take more oral Vitamin C daily (30-40 g) that is on the protocol, but maybe somehow its work is boosted by the salt.

Anyway, have you heard of slow push IV’s of Vitamin C for pathogen killing? Apart from the potential expense, what do you think of it?

(I’ll ask Dr. G too. Probably I should start seeing him more often anyway.)

I kind of feel like it would be better for me to focus on detoxing the mold poison rather than killing stuff right now, but it’s sort of an interesting experience. I will have to give this guy points for innovative thinking if he came up with it on his own.
[This Message was Edited on 05/15/2008]
 
Thank you so much, all of you, for the doctor reports! I really appreciate it.

I am SO happy for you, Lisa, that you've found a good, close, cheap doctor. It must be nice to be able to sit and brainstorm and theorize with a doctor. I have not had that experience yet.

You may find it helpful to know that I tolerate Lethicin very well. It does absolutely nothing to me. Whereas the phos choline and phos serine disagree with me a lot.

Since we were both having not so great experiences with the phos serine recommended by Rich VanK, maybe you'd be able to handle Lethicin as well as I can.

I find that when it comes to hormones, I don't need a doctor who knows a lot about them. I just need a doctor who will prescribe me the hormones I want to try, and do any hormone tests I'd like to do. I can figure out the dosages on my own, since even a good doctor is just guessing when it comes to dosages.

My doctor has stopped writing the dose on some hormone prescriptions. lol She gave up! She's knows it's impossible to guess what I'll need and that I'll figure it out. She just writes "take as directed" to pacify the pharmacy.

It's great to know that there is a good CFS doctor in Chicago, and that you are breaking him in for all of us! hee hee

I'm sorry to hear about your Xyrem experience, Delia.

I guess another test of a good doctor would be, what does he do if you disagree with him on something? Like, if he recommends something and you don't want to take it. Can he handle it or does it threaten his ego?

Oh, Linda! I'm so sorry that you have a fungal infection from dirt as well as Lyme toxins! What next???

Love,
Forebearance
[This Message was Edited on 05/15/2008]
 

munch1958

Member
Hi Lisa,

Yes, Dr Edelberg has his mind made up what causes these illnesses. When I read his chapter on CFS I threw the book up against the wall. The FM chapter is much better. I didn't care for the TMJ chapter at all.

By then, I'd already seen him twice and liked him so I kept going back anyway. It's really hard to find anyone in Chicago so I'm willing to work around the difference in beliefs.

As far as I know, any doc can prescribe HGH in Illinois. My out of state LLMD prescribed it for me. My insurance company (Express Scripts & Aetna) would not cover the cost unless an endocrinologist wrote the Rx. I also had to flunk the stim test for HGH release.

My insurance company and endocrinologist required that I be off HGH for 2 weeks before the test. This gives it time to leave the body. Your IGF-1 will drop back down to the before HGH range.

In my case, it was even LOWER than it was before HGH use. I felt the effects leave my body in abug 3 days. From everything I've read, stopping hormones causes the body to go back to the same lousy malfunctioning endocrine glands that I had before.

My LLMD suggested that I increase the dose of HGH in order to recover from the osteoporosis compression fractures. It made sense because like you I don't heal from trauma either. I'm now on 5.5 mg per day. I have no signs of too much yet.

After my MVA in 1993, I was in a cast from toe to hip for 16 weeks. Imagine having to keep your leg straight and drag around a heavy cast like that for 4 months! Hobbling to the bathroom on crutches and then navigating peeing with a straight leg was awful.

It's almost as bad now with this stupid splint I have to wear for my back fractures! Finally, after 11.5 weeks I noticed I'm more comfortable without the splint than I am wearing the splint. Maybe it means it's healed?

I also can’t believe I got another bug (Valley Fever) after an 8 day trip to Phoenix. I was feeling so good out I was actually tidying up someone else's home!

Here I was helping my DIL sweep the patio and dust off the patio furniture because the rest of my DH's kids were coming from Chicago. Everything was covered in this red dirt. Little did I know these spores were a problem to people with poor immune function. I must have inhaled the spores when I was sweeping.

I came home towards the end of Jan and was coughing for over 8 weeks. My DH didn't get sick with this -- just me. My symptoms started out with strange white spots all over my throat. I thought it was canker sores at first but we coated them with Zantac and it didn't help.

Then I thought it was strep but it didn't look like strep. I've had that before and the symptoms weren't the same. Plus I was on Rifampin and Zithromax. I had fever, chills, cough, chest pain, headache, fatigue, night sweats, stiff neck and bloody sputum.

I got my estradiol levels checked and my pellets were fine. My estrogen was high at the time so that wasn't the problem.

I was taking Diflucan and Nystatin so I had a hard time believing it was a fungal infection. My LLMD thought it was Valley Fever based on my symptoms along with the recent trip to Phoenix.

When you get sick it's either viral, fungal or bacterial. I just couldn't understand why the Diflucan didn't kill off the cocci. My LLMD ordered pulsed Sporonox and would only allow the name brand not generic.

I took it for 1 week on then 3 weeks off then 1 week on and 1 week off then on more week on. Guess the cocci isn't easy to kill. After the first week, I started feeling like the fever was FINALLY breaking AND I stopped coughing.

The cough was so bad I kept my DH up most nights. This coughing started the first week in Feb and lasted until the last week in April! Nothing else got rid of the cough.

As far as travel goes, I do feel better in a pristine environment like the mountains. Dust mites don't live about 7,000 ft. and neither to do ticks (supposedly?)

In 2005, we took a trip to the Canadian Rockies touring British Columbia and Alberta. It seemed like once I got to the Northwoods (Wisco) I did feel way better. Less pollution. Cleaner air. Less environmental nasties. There were tons of mosquitoes though.

Sorry, I don't know anything about IV drips of Vitamin C for detox.

Have you looked into home oxygen use? That was wonderful for my migraines. When my MCS was at it's worst, breathing oxygen really helped me.

I'd like to check into HBO (hyperbaric oxygen) too. "Dives" are supposed to help kill pathogens too.

I'd sort of like to find out about Rife treatments. Went to the Chicago Land Lyme support group meeting in April but the speaker talked about the wrong topic.

This is where I connected with a naturopath, Dr Catherine Bright-Helms, Detox Centers of America, who does lots of alternative treatments including microscopic analyisis of pathogens. She's got the Brackman microscope and dark field.

Just thought I'd mention her because she's got an office in Evanston which isn't that far from Skokie. She is familiar with Dr Shoemaker's mold warriors book. She may know about detoxing from the mold. She's also got a PhD in Nutrition.

This website says her office is in River Forest but it's been moved. The phone number is correct in case you are interested. http://www.wholehealth1.com/TheDoc

Here are her credentials:

http://www.wholehealth1.com/Credentials

I'm having a beast of a time with the IL Dept of Public Health. Here is a link to the treatment guidelines for physicians in IL:

http://www.idph.state.il.us/health/infect/LymeDiseaseHlthProviderInfo.pdf

It's riddled with incorrect information and it goes to front line doctors in our state.

I still do outdoor activities. I'm not going to stop living my life because of pathogens. There are all sorts of ways to prevent tick bites. I'll just have to take better precautions.

Like many, I thought ticks were large enough to see. If I had any one me I could simply slap them away like flies and mosquitoes. DUH!

They are not big enough to see. A tick larvae is as big as this === > . A nymph (which is what most people are bit by) is the size of a poppy seed. An adult is the size of a sesame seed. I wish I had known!

TTFN!
Linda



[This Message was Edited on 05/15/2008]
 
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