Horowitz patients

[DataDude]

I've been searching the forums here for stories from people that have been treated by Horowitz, but am not finding much. Anyone have experience with him?

I have seen him claim to have treated 12,000 people (in his book) with about a 90% success rate (in an interview), so it seems incongruent that there are so few (no?) PR users that found their way to him and later improved given how prevalent "chronic Lyme" diagnoses are in the CFS community.

Interested in any thoughts or experiences. Thanks all

 

[barbc56]

Gosh, he's made up a new disease all on his own, cures 90% of his patients as well as selling a book!

Does the saying, "If it's too good to be true...." apply?

I call this syndrome Lyme-MSIDS Multiple Systemic Infectious Disease Syndrome, and represents sixteen potential overlapping medical problems contributing to persistent symptoms in patients with chronic illness

.http://www.cangetbetter.com

This syndrome seems so broad and muddled. It lumps a bunch of conditions which may or may not be related and may or may not need the same treatment.

It's generally known the symptoms of each condition do overlap and that's important for a physician to keep in mind. But I'm not convinced that putting them under one syndrome would be necessary or even beneficial for patients. It seems to overlook the possibility that each case can be unique as far as causes and treatments.

Isn't this what we' been trying to avoid for me/cfs/seid or am I misinterpreting what he's saying?

Barb

 

[Sidereal]

Gosh, he's made up a new disease all on his own, cures 90% of his patients as well as selling a book

I am sick of these "doctors" who make up new conditions just to avoid saying the three apparently dirtiest words in the English language - chronic fatigue syndrome. They sell bullshit to patients who don't want to accept they have CFS because it's stigmatising and incurable.

 

[duncan]

Yeah, it's not quite as clearcut as that. Or as simple.

Depending on where you live, getting diagnosed with refractory Lyme or chronic Lyme, also can be stigmatizing and prove equally incurable.

They are both crappy labels.

 

[msf]

Barb56, you might be right about MSIDS, but speaking personally, I don't have the medical knowledge to critique Horowitz's ideas (simply because, as you pointed out, it's quite complicated).

Datadude, I think the reason why there are few (if any) Horowitz patients on here is a simple one: he made his name as a Lyme expert, therefore the people who go to see him mostly already suspect that they have Lyme rather than ME. For that reason they are more likely to hang around on the Lyme forums. If you want to find patients of his, I would look on the American Lyme forums for them. Someone like KDM has far more patients on here because he was originally an 'ME' physician, and so patients who believe they have ME go to see him, and only then find out that they have Lyme.

 

[justy]

KDM follows and uses Horowtiz's idea of MSIDS and I think there is a lot of merit in it. As a programme for treating patients who don't get better with conventional Lyme therapies then it makes sense to look at other aspects that may be causing the immune system to go awry such as mold, heavy metals etc and treat them.

Have any of you who are slagging him off actually READ his book or watched any of his talks? He looks like a great Dr to me, really caring and dedicated to his patients and the Lyme community in general.

I agree with msf that he primarily sees Lyme patients as he lives and works in a very high risk area for Lyme. He found that some of his Lyme patients got well with antibiotics etc and others only partially so, so he went looking for the causes and found that each patient has a unique set of issues keeping them sick and then he tries to help them. Whats not to lik in that - isn't it what we are always taking about - Drs that actually make the effort to listen and then investigate until they find things they can treat, and don't just abandon you when you don't fit the model.

 

[barbc56]

I think I see where I misunderstood what Dr. Horowitz wrote. I didn't realize he primarily sees Lyme patients and thought he sees many chronic medical conditions. That's why I was questioning his theory focusing on lumping them all under one syndrome.

He found that some of his Lyme patients got well with antibiotics etc and others only partially so, so he went looking for the causes and found that each patient has a unique set of issues keeping them sick and then he tries to help them.Whats not to lik in that - isn't it what we are always taking about - Drs that actually make the effort to listen and then investigate until they find things they can treat, and don't just abandon you when you don't fit the model

My original take was that by labeling them under one syndrome, it would make it harder to individualize treatment. But from what you are saying, he's talking about how the conditions are. interrelated which is not the same as saying thet are the same medical condition.

@duncan said:

Yeah, it's not quite as clearcut as that. Or as simple

.

A good point to keep in mind.

Barb

 

[Dufresne]

Gosh, he's made up a new disease all on his own, cures 90% of his patients as well as selling a book!

Does the saying, "If it's too good to be true...." apply?
.http://www.cangetbetter.com

This syndrome seems so broad and muddled. It lumps a bunch of conditions which may or may not be related and may or may not need the same treatment.

It's generally known the symptoms of each condition do overlap and that's important for a physician to keep in mind. But I'm not convinced that putting them under one syndrome would be necessary or even beneficial for patients. It seems to overlook the possibility that each case can be unique as far as causes and treatments.

Isn't this what we' been trying to avoid for me/cfs/seid or am I misinterpreting what he's saying?

Barb

I think that's an unfair characterization. He doesn't claim to cure anyone, in fact he believes nobody is cured of chronic Lyme. What he does claim is that he sees improvement in 90% of cases he treats using his model.

As for his "new disease": he's merely saying there's another way to look at and treat patients who present with these symptoms and labs because it's far more complicated than the single cause approach to disease most in the mainstream use. Perhaps that's what's screwed us in the past. So it's not the same treatment for everyone; he uses lab-work and his clinical understanding to guide each approach. He's not lumping us all together at all, he's recognizing the differences and that there are a lot of bases that need to be covered. He's made an effort to devise a system (however imperfect) that attempts to elucidate the complications each patient presents with. I think this is the responsible way of tackling the problem. It beats waiting around for a medical establishment hero like Ian Lipkin to save us.

Edit: @barbc56, I wrote and posted this before seeing your above concession. I'll let it remain as it addresses a couple things not yet expressed in the thread.

 

[barbc56]

It beats waiting around for a medical establishment hero like Ian Lipkin to save us

Does it?

If we are going to find out what is really going on with our disease, I don't want the the quality of medical knowledge to be diluted by scientific speculation that may be questionable.

Whether this applies to this particular person, I have no idea. It's just a general statement and my personal opinion.

Barb

 

[soxfan]

YES I was a former patient of Dr. Horowitz and I am STILL sick....I was seeing him and his PA for two years. I read his book and I can tell you right off that most of the stuff he writes about was never talked about with me. The only thing he ever treated besides Lyme was heavy metals....

I am very curious as to how just a few years ago when I was seeing him none of those other conditions which he claims goes along with Lyme disease was ever discussed with me. I was only given a couple herbals along with oral antibiotics. He also did not give me another antibiotic along with IV Rocephin which I am sure help cause my relapse after going off IV. I was only on Rocephin for 6 months.

After about a year and half of still not really well they gave up on me and wanted me to go up to Vermont and see a Chinese herbalist...I said no thanks.

I was extremely disappointed in how casually they just let me go when I wasn't "90" percent well....

His book was a huge waste of money and I wish I had never bought it. As you can tell I was not a happy patient with him....
I don't want to bash him too much as I do believe people get well but I wasn't one of them...

And he also did not dig deeper into why I wasn't getting well.....

 

[DataDude]

Thanks @msf, good suggestion -- I will take a look at the American Lyme forums. I have looked at about 40 folks on this website who have reported a Lyme diagnosis though, and not found anyone who was treated by him until @soxfan so that is still curious to me. With 12,000 treated I would expect more people to have worked with him here.

Barb56, you might be right about MSIDS, but speaking personally, I don't have the medical knowledge to critique Horowitz's ideas (simply because, as you pointed out, it's quite complicated).

Datadude, I think the reason why there are few (if any) Horowitz patients on here is a simple one: he made his name as a Lyme expert, therefore the people who go to see him mostly already suspect that they have Lyme rather than ME. For that reason they are more likely to hang around on the Lyme forums. If you want to find patients of his, I would look on the American Lyme forums for them. Someone like KDM has far more patients on here because he was originally an 'ME' physician, and so patients who believe they have ME go to see him, and only then find out that they have Lyme.

 

[DataDude]

Thanks @justy -- great you've found a doctor you trust. What has your experience with the Lyme treatments been like? How long have you been at it and have you experienced a change in your functioning -- going from housebound to working or working part-time to full-time or anything like that? What are you working with today?

I've been given a "chronic" Lyme diagnosis if I didn't mention that, so interested in experiences with Lyme diagnosis/treatment generally. Hope things are going well for you

KDM follows and uses Horowtiz's idea of MSIDS and I think there is a lot of merit in it. As a programme for treating patients who don't get better with conventional Lyme therapies then it makes sense to look at other aspects that may be causing the immune system to go awry such as mold, heavy metals etc and treat them.

Have any of you who are slagging him off actually READ his book or watched any of his talks? He looks like a great Dr to me, really caring and dedicated to his patients and the Lyme community in general.

I agree with msf that he primarily sees Lyme patients as he lives and works in a very high risk area for Lyme. He found that some of his Lyme patients got well with antibiotics etc and others only partially so, so he went looking for the causes and found that each patient has a unique set of issues keeping them sick and then he tries to help them. Whats not to lik in that - isn't it what we are always taking about - Drs that actually make the effort to listen and then investigate until they find things they can treat, and don't just abandon you when you don't fit the model.

 

[DataDude]

Thanks @Dufresne -- have you had a Lyme diagnosis and/or treatment as well? Anything to report about it if so -- who you worked with/what you did, for how long, changes in your functioning (e.g., from housebound to working, or part-time to full-time working)?

Of the 40ish folks I've seen with Lyme on the PR forums I haven't found anyone who has said they've been cured, and only a few people reporting improvements from antibiotics but they didn't seem to last. May not be a complete sample of course, so I'm keen to learn about more people's experiences. Sad to hear of these relapses, and I wonder what mechanism is at work in those cases.

I think that's an unfair characterization. He doesn't claim to cure anyone, in fact he believes nobody is cured of chronic Lyme. What he does claim is that he sees improvement in 90% of cases he treats using his model.

As for his "new disease": he's merely saying there's another way to look at and treat patients who present with these symptoms and labs because it's far more complicated than the single cause approach to disease most in the mainstream use. Perhaps that's what's screwed us in the past. So it's not the same treatment for everyone; he uses lab-work and his clinical understanding to guide each approach. He's not lumping us all together at all, he's recognizing the differences and that there are a lot of bases that need to be covered. He's made an effort to devise a system (however imperfect) that attempts to elucidate the complications each patient presents with. I think this is the responsible way of tackling the problem. It beats waiting around for a medical establishment hero like Ian Lipkin to save us.

Edit: @barbc56, I wrote and posted this before seeing your above concession. I'll let it remain as it addresses a couple things not yet expressed in the thread.

 

[DataDude]

Thanks @soxfan - very sorry to hear you didn't experience improvements but thanks very much for sharing your story.

How did your function/symptoms change during the treatment? It sounds like you felt you had some changes as you describe a "relapse" from going off of IV Rocephin. Would you go on Rocephin or other antibiotics again? What is your status now? I actually think I read a post of yours describing feeling worse during Lyme treatment? Or am I thinking of someone else (very hard to keep track!).

When you mention some people getting well, were these people you met at Horowitz's clinic? Or are the reports of improvements more things you've heard about rather than watched?

YES I was a former patient of Dr. Horowitz and I am STILL sick....I was seeing him and his PA for two years. I read his book and I can tell you right off that most of the stuff he writes about was never talked about with me. The only thing he ever treated besides Lyme was heavy metals....

I am very curious as to how just a few years ago when I was seeing him none of those other conditions which he claims goes along with Lyme disease was ever discussed with me. I was only given a couple herbals along with oral antibiotics. He also did not give me another antibiotic along with IV Rocephin which I am sure help cause my relapse after going off IV. I was only on Rocephin for 6 months.

After about a year and half of still not really well they gave up on me and wanted me to go up to Vermont and see a Chinese herbalist...I said no thanks.

I was extremely disappointed in how casually they just let me go when I wasn't "90" percent well....

His book was a huge waste of money and I wish I had never bought it. As you can tell I was not a happy patient with him....
I don't want to bash him too much as I do believe people get well but I wasn't one of them...

And he also did not dig deeper into why I wasn't getting well.....

 

[soxfan]

Before I went to Dr. Horowitz I had been seeing a Lyme doctor in NH. He is actually the one who put me on Rocephin 5 weeks before I went to NY. By the time I saw Dr. H I was already feeling improvement from the IV. I really thought I was on the road to recovery but they didn't add another antibiotic to go along with Rocephin which is why I think I relapsed.
My doc in NH sent me to Horowitz because he thought he could give me another option in getting better.

I am just really puzzled as to why none of the other issues that Dr. H writes about in his book were ever mentioned to me. The only thing he ever co treated was heavy metals which I really don't feel had anything to do with my symptoms.
I was never tested for parasites or most of the other co-issues he talks about or even tested for them.

I don't personally know of anyone else who went to see him..I am not really sure if he treated me longer would have made any difference in my outcome. I will say that on the Rocephin I was almost back to normal.

I totally feel now that my major symptoms are a result of the CFS which I also feel was caused from the original Lyme infection.

I don't think there is anything I could take now that would make a difference...No I will not go on antibiotics again.

The symptoms that almost completely resolved while on Rocephin were the chronic fatigue, nerve pain in my feet and calves and constant muscle twitching in my calves. Those were all 90 percent GONE. I did go back on Rocephin about a year later but it had no impact whatsoever with those symptoms.

Today I am still struggling with the constant nerve pain and twitching....constant fatigue....easily over stimulated mentally which leads to exhaustion...I have PEM....crashes....and am unable to work anymore....

The symptoms I DID not have in the beginning of all this (2004) were PEM...mental overstimulation and crashes. Those symptoms all developed about 5 years into this....

Sorry so long....Just one last thought....I think Dr. Horowitz is a great pioneer in Lyme Disease and definitely seems to help tons of people....I just feel they gave up on me because I was not going to be a success story...

 

[DataDude]

Thanks @soxfan -- no problem with the length, I'm interested in your experience!

Given the progress you felt from the antibiotics what is it that makes you not want to try them again? The side-effects were too strong?

And what was your experience with metal detoxification -- did you do chelation? I've done a few months of chelation and not noticed any improvements. Did you end up with low metal levels based on a challenge or other test? And what were your side-effects like if any? I have rather suddenly developed a blood condition called PV which may be from the chelation -- my red blood cell counts have been normal my whole life, as well as my cholesterol levels, but since doing chelation both are very elevated.

I'm a bit worried that some of these "treatments" might make me worse if they don't make me better. I've heard of people experiencing setbacks from antibiotics as well, thus my hesitation to try them. Thanks again for sharing! Sorry to hear that you're not feeling better and I hope that things turn around for you soon.

Before I went to Dr. Horowitz I had been seeing a Lyme doctor in NH. He is actually the one who put me on Rocephin 5 weeks before I went to NY. By the time I saw Dr. H I was already feeling improvement from the IV. I really thought I was on the road to recovery but they didn't add another antibiotic to go along with Rocephin which is why I think I relapsed.
My doc in NH sent me to Horowitz because he thought he could give me another option in getting better.

I am just really puzzled as to why none of the other issues that Dr. H writes about in his book were ever mentioned to me. The only thing he ever co treated was heavy metals which I really don't feel had anything to do with my symptoms.
I was never tested for parasites or most of the other co-issues he talks about or even tested for them.

I don't personally know of anyone else who went to see him..I am not really sure if he treated me longer would have made any difference in my outcome. I will say that on the Rocephin I was almost back to normal.

I totally feel now that my major symptoms are a result of the CFS which I also feel was caused from the original Lyme infection.

I don't think there is anything I could take now that would make a difference...No I will not go on antibiotics again.

The symptoms that almost completely resolved while on Rocephin were the chronic fatigue, nerve pain in my feet and calves and constant muscle twitching in my calves. Those were all 90 percent GONE. I did go back on Rocephin about a year later but it had no impact whatsoever with those symptoms.

Today I am still struggling with the constant nerve pain and twitching....constant fatigue....easily over stimulated mentally which leads to exhaustion...I have PEM....crashes....and am unable to work anymore....

The symptoms I DID not have in the beginning of all this (2004) were PEM...mental overstimulation and crashes. Those symptoms all developed about 5 years into this....

Sorry so long....Just one last thought....I think Dr. Horowitz is a great pioneer in Lyme Disease and definitely seems to help tons of people....I just feel they gave up on me because I was not going to be a success story...

 

[soxfan]

@DataDude- I did chelation for a while and it made me feel really bad. My metals were not horrible but I gave it a go anyway. I looked up side effects for each of the heavy metals I had and I really didn't have any of them. I just felt that my problems were not due to that and decided to quit the chelation...I have not had my metal levels tested since.

Dr. H really didn't push the issue either so I am guessing he was really just trying another piece of the puzzle.

I have been on and off antibiotics since 2006. I would list everything I have been on but it would take up a lot of space here. If you want to know everything I have taken I can PM it to you. I can tell you that it will be a shock....

I truly feel that my remaining symptoms which are different then when I first became ill are due to me developing CFS from not being treated for Lyme right off. I may have gone into remission but it wasn't long lasting and I relapsed shortly after having to quit Rocephin. I also feel if I had been on another abx. along with the IV I wouldn't have relapsed but that is just speculation.

I definitely feel my symptoms are CFS from reading about others on this forum experiencing the same ones and I never read about these on Lyme forums...that's how I know.

PEM..Severe mental exhaustion with little stimulation....chronic fatigue....unable to handle stress...concentration issues when driving...are all CFS....

 

[duncan]

Yes, soxfan, they are all symptoms of CFS.

They are also symptoms of late stage Bb, particularly late stage neuroborreliosis. The only possible exception to what you have listed is PEM - and I am not certain it is an exception.

They are also symptoms of what some like to call post-treatment Lyme disease syndrome.

 

[Dufresne]

Thanks @Dufresne -- have you had a Lyme diagnosis and/or treatment as well? Anything to report about it if so -- who you worked with/what you did, for how long, changes in your functioning (e.g., from housebound to working, or part-time to full-time working)?

Of the 40ish folks I've seen with Lyme on the PR forums I haven't found anyone who has said they've been cured, and only a few people reporting improvements from antibiotics but they didn't seem to last. May not be a complete sample of course, so I'm keen to learn about more people's experiences. Sad to hear of these relapses, and I wonder what mechanism is at work in those cases.

What's your chronic Lyme diagnosis based on? Do you meet the criteria for ME/CFS, or more specifically, do you have PEM?

If you have typical ME/CFS symptoms it's pretty safe to say you're not going to recover with IV ceftriaxone, or metronidazole, or whatever. Even Dr Burrascano acknowledges a chronic Lyme sufferer is not going to get well and stay that way from ABX therapy alone. And in my opinion ME/CFS is tougher. I don't know of a single ME patient who's resolved their PEM from such treatment. Which isn't to say improvements can't be made with drugs alone, just know you could get worse too. But you probably know this already.

I tested positive at Igenex for Lyme and babesia duncani. I've no doubt they are major players in my illness, particularly the latter. When babesia is neutralized my head clears up to the point that I don't have a single complaint with its functioning. A huge improvement! But had I not dealt with candida and dysbiosis to some extent before taking wormwood or cryptolepis I would never have realized this benefit. This is just one example of how things tend to be layered. It takes a fair bit of research and trial and error to figure out what's causing your symptoms and how you might relieve them. It also helps if you're lucky.

Unfortunately I haven't been able to sustain this effect due to my inability to sufficiently manage intracellular infections. This is likely the norm with ME and what I'm trying to figure out at the moment. So just when you think you've accomplished something it turns out there's another angle needing to be addressed. This is why I agree Horowitz's approach. I think throwing long-term pharmaceuticals at this disease without proper support (detoxification & anti-inflammatory strategies, etc) is risky.

On another note, mycotoxins are a huge component of my illness. I mention it because it's incredibly common with these diseases. I think anyone positive for TBD's or meeting the criteria for ME/CFS would do well to investigate this possible complication.

 

[soxfan]

I just want to clarify that the PEM I have is immediate...especially from mental stimulation. If I shop too long...socialize with too many people....work too many hours. I will have to come home and lay down for hours in a dark and quiet room. My entire body feels like it is vibrating inside.

The times when it can last into the next day is when it is stress related. Then I have a hard time recovering and can take up to a few days where I am basically unable to do much at all.

The fatigue is a constant though from the time I wake up till bed...it never goes away and I have it to some degree everyday. I am also unable to do anything at all at night as my resources are totally gone by then and even if I have rested they do not get restored.

I feel totally that this is all CFS related....I am not sure why I still have constant nerve pain in my calves except that it is either permanent damage or something else but that never goes away either unless I stay on Neurontin....

I think I mentioned this before but in the first Six years of this illness I Did NOT have PEM...this started occurring after 2010 and is totally from mental exertion... or stress....not physical exertion.