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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Kent Holtorf, M.D.

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Rockt

Senior Member
Messages
292
Anyone heard of this doctor/clinic or been there?:

http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html

One of the things I'm pretty sure of about this disease, (and there aren't many), is that I'm not getting enough oxygen to my brain, (hypoxia) - like I'm at relatively high altitude all the time. This doc seems to acknowledge the existence of coagualtion issues that could casue this, as well as other factors in the illness of CFS'ers.

Seems like it might be a good "one stop shop" :)

Please let me know if you have any info./experience.

Thanks.
 
Dreambirdie

Dreambirdie

work in progress
Messages
5,569
Location
N. California
We've discussed Holtorf Medical Group on here several times. Here's one of the threads, and I'm sure there's probably more.
http://forums.aboutmecfs.org/showthread.php?5802-Holtorf-Clinic&highlight=Holtorf

I would personally NOT EVER recommend them. Ridiculously over-priced and not qualified to deal with the complexities of CFS.
My downslide into my current long setback was initiated by taking the advice of one of their doctors.
 
Jenny

Jenny

Senior Member
Messages
1,388
Location
Dorset
Rockt said:
Anyone heard of this doctor/clinic or been there?:

http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html

One of the things I'm pretty sure of about this disease, (and there aren't many), is that I'm not getting enough oxygen to my brain, (hypoxia) - like I'm at relatively high altitude all the time. This doc seems to acknowledge the existence of coagualtion issues that could casue this, as well as other factors in the illness of CFS'ers.

Seems like it might be a good "one stop shop" :)

Please let me know if you have any info./experience.

Thanks.
Click to expand...

Why do you think you have low O2 Rockt? I assumed that too as I have frequent air hunger, but it turns out that my subcutaneous O2 is fine, but I have abnormally low Co2, which is being corrected.

Jenny
 
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Rockt

Senior Member
Messages
292
Thanks for your replies Dreambirdie and Jenny.

Jenny, my supected low O2 theory is not terribly scientific I'm afraid. It's mostly that I feel like I'm at about 6-8K feet altitude - somewhat light-headed and brain foggy all the time and I get bad mental PEM riduculously easy, (like from a brief conversation or 10 minutes on the computer). But there are some other reasons: First, I went to a "complimentary healing center" where they do live blood analysis. Now I've heard that this isn't a proven science, but I had it done for about 6 months in a row and it showed my red blood cells to be all clumped together, each time. Not a great situation for transporting O2 to my beleagured brain, I'm guessing. They recommended taking high doses of vit. C. I've been doing that for about a year, but it doesn't seem to be helping. Second, I've had a couple of concussions and a study done at the U. of Buffalo, NY, showed a decrease in blood flow to the brain following concussion. They use graduated exercise to overcome post-concussion syndrome. I went to their clinic when I though I had "only" post-concussion syndrome, but I was too exercise intolerant to maintain their treadmill test - my heart rate only got up to about 100 bpm and my blood pressure dropped to around 80/50. And I experienced significant physical PEM afterward. This is when we started thinking CFS.

It's funny with me. I'm not really tired or fatigued, more like "over-stimulated". I don't have flu-like symptoms either. I can walk 20 minutes fairly easily, but I can't push it to where my heart rate increases too much or I get physical PEM. And anerobic exercise, (ie weights), brings it on more. However, I'm badly debilitated by the menatl PEM. If it wasn't for that I could live an OK, albeit careful life.
 
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Rockt

Senior Member
Messages
292
Dreambirdie, read the thread. Doesn't sound good. I think I got sucked into their marketing. I'm getting kind of desparate and I think I wanted to believe the hype. I need some help with this - I'm not getting there on my own. And I'm no longer looking for "the cure", just some help with symptom management, (again, mostly mental PEM), so I can live a little.
 
Dreambirdie

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Rockt said:
Dreambirdie, read the thread. Doesn't sound good. I think I got sucked into their marketing. I'm getting kind of desparate and I think I wanted to believe the hype. I need some help with this - I'm not getting there on my own. And I'm no longer looking for "the cure", just some help with symptom management, (again, mostly mental PEM), so I can live a little.
Click to expand...

I personally go for the well recommended ND's and TCM people. They have helped me with symptom management a lot more than doctors, who have unfortunately only hurt me.
 
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Rockt

Senior Member
Messages
292
Sorry Dream, I've got the bad brain :) What's TCM?

I've been to an ND and he really tried to help, but nothing he recommended has helped. I'm thinking with the possibility of blood coagulation(?), I might need the testing found in traditional medicine. But I know what you mean - they love their pharmaceuticals and most don't seem to worry much about side effects or after-effects.
 
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perovyscus

Messages
96
I may have tunnel vision, but I think the plurality of people would agree that Dr. Peterson, Dr. Lapp and Dr. Klimas are the most knowledgeable about CFS. Podell, Lerner, Bateman, Montoya are knowledgable. If affordability is an issue, I'd see Dr. Enlander in New York City. United Healthcare accepts him.

Your theory is rooted in elementary science (hypoxia) causing a strong immune shift (to TH2). If you really feel that's the case, I'd recommended hyperbaric therapy.
 
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aquariusgirl

Senior Member
Messages
1,732
rockt, i think most of us have hypercoagulation. you may be able to fix this w/out going to a big name CFS doc, or while u are waiting to see them.
google david berg, hypercoagulation for more info.
The best test is supposed to be the ISAC panel from Esoterix (esoterix.com).
Yr doc will need to have or set up an accoutn with them to order the test.
IF you're positive, the therapy is a couple of months of lumbrokinase to eliminate fibrin (titrating up the dose to avoid headaches from hell) then add heparin or lovenox or whatever to prevent fibrin production.
Read up first....google david berg, hypercoagulation, toxic shock.
Could be dangerous to combine heparin and/or lumbro with drugs or antifungals, antivirals, antimicrobiasl.....cos lots of ppl got sick doing a biofilm protocol which this essentially would be.
If yr doc is not familiar or comfortable with prescribing, mayhe he/she cld consult with david berg...google azcoag.com.
Tired today.. but lots of info on experiences with this on this and other forums.
Hypercoag is a tricky diagnosis....in this and other conditions.....so important to do it right.. with someone who can diagnose..it.. important too to run the right labs.
HTH
 
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