Anyone else Diagnosed by Dr. Lapp?

[Horse Crazy]

I was diagnosed almost one year ago by Dr. Lapp. I have had slow onset CFS presumably beginning several years ago during a few very stressful years which included a very sick premature infant, chronic colds followed by sinus infections, sinus surgery and the like. Each year that has passed I have dropped about 10% in functioning, looking and looking for answers, until I found Dr. Lapp at about 30%.
When I left his office, I felt very hopeful, hanging on to his statement that people can recover in 4-7 years (60-100%) provided they stay within the energy envelope, diet changes, sleep, rest etc, etc. As the year has passed and I have read peoples stories and struggles, I am not finding many cases that have followed this profile of recovering if recovering at all. I find myself getting depressed and disheartened and wondering if the idea of "getting better" is not really attainable. Is the "get better plan" just a bunch cow manure? Do I need to see another doctor? have more tests done? Anyone?

 

[Effi]

Hi @Horse Crazy , welcome to PR!

Sorry to hear you're struggling. It sounds very familiar though, as I'm sure it will to many on here.

I haven't seen Dr Lapp, but I can relate to your confusion around diagnosis and recovery. First of all the diagnosis: there is no biomarker for our illness, so we never know 100% sure that we have it or not. It's easier to know what we DON'T have, if you know what I mean.

As a direct consequence it is hard to interpret recovery stories. There are people who recover forever. Then there are people who recover for a short/longer period of time. There are also people who never recover. The people who recovered, even if it was temporarily, was that a consequence of the treatment protocol they followed, or was it spontaneous, or a combination of the two? It's hard to really pinpoint anything. I hope I'm not creating more confusion, but what I personally try to do, in lack of any certainties, is cling on to the hope that there ARE indeed people who recover, or at least get x% better. It's all about finding an approach that works for you.

Sadly there is no one-approach-fits-all. But there is a ton of valuable information on these forums. And if you have any questions about a certain approach, just ask and many people will share their personal experience.

PS: if you wonder about tests, this document is a good start (link here - by @Hip )

 

[minkeygirl]

I know someone who saw Lapp years ago. She really wasn't doibg much treatment wise that I remember

Are you getting any treatment from dr Lapp? Or is he just telling you to rest etc?

What did you find out from your labs? What labs? Mine was viral onset so I'm in AVS. I also have immune issues to I work on that.

If you feel you need to be more proactive then maybe you should talk to dr Lapp or look into seeing soneone else. If you've had labs maybe a fresh pair of eyes.

The sooner you start treatment after getting sick the better. I just am not sure about Lapps recovery numbers.

 

[Apple]

I don't know anything about Dr Lapp, but please remember that the people who recover don't tend to hang around on the internet talking about it! They go out and live their lives and do all the things that normal people do (and more!) Please don't focus on the negative stories (including myself in this). There are lots of people who do recover, some spontaneously, some through alternative diagnosis, or maybe experimental treatment.

Stay hopeful. I truly believe there is recovery out there for us. It's just a matter of finding what works for you.

Good luck

 

[SOC]

When I left his office, I felt very hopeful, hanging on to his statement that people can recover in 4-7 years (60-100%) provided they stay within the energy envelope, diet changes, sleep, rest etc, etc.

I was diagnosed by Dr Lapp. I saw some improvement under his care -- learning to pace slowed my decline and gave me some small improvement. I needed to learn to pace at that point in my illness, so that was definitely beneficial. Diet didn't do much, but I wasn't consuming most of the things he advised against, anyway.

Medication for hypothyroid helped some, too. Both of these treatments helped (some) with the complete exhaustion associated with my ME, but didn't do much for my other symptoms -- OI, severe cognitive dysfunction, flu-like symptoms.

I liked Drs Lapp and Black, but I felt they didn't have the treatment in place for my subset of ME/CFS. Maybe if I'd been eligible for Ampligen the story would be different. I think they might be better with fibro and Fukuda-CFS than ICC-ME.

I moved on from Hunter-Hopkins and got more pathogen, immune, and OI treatments which have improved my condition a lot. I went from bedbound and unable to read to able to work part-time and walk around stores on my own (with caution). My daughter is in remission (with a lot of treatments still). So I think recovery is possible, but you need to find the right treatment plan for your individual symptom set. Not every ME/CFS specialist does the same treatment, although the top handful are coming around to similar treatment programs.

Even so, there's no guarantees with this illness. Improvement is possible, but not guaranteed. I suspect this is largely because, as @Effi said, we don't really know what we have or if we all have the same thing.

My suggestion is that if you are not improving under a certain specialist's care, try another specialist with a different approach... or one with a more broad-based approach so you have access to more symptomatic treatments.

 

[*GG*]

sorry to hear of your situation.

Have you had the good tests for Lyme?

GG

 

[Horse Crazy]

Hi @Horse Crazy , welcome to PR!

Sorry to hear you're struggling. It sounds very familiar though, as I'm sure it will to many on here.

I haven't seen Dr Lapp, but I can relate to your confusion around diagnosis and recovery. First of all the diagnosis: there is no biomarker for our illness, so we never know 100% sure that we have it or not. It's easier to know what we DON'T have, if you know what I mean.

As a direct consequence it is hard to interpret recovery stories. There are people who recover forever. Then there are people who recover for a short/longer period of time. There are also people who never recover. The people who recovered, even if it was temporarily, was that a consequence of the treatment protocol they followed, or was it spontaneous, or a combination of the two? It's hard to really pinpoint anything. I hope I'm not creating more confusion, but what I personally try to do, in lack of any certainties, is cling on to the hope that there ARE indeed people who recover, or at least get x% better. It's all about finding an approach that works for you.

Sadly there is no one-approach-fits-all. But there is a ton of valuable information on these forums. And if you have any questions about a certain approach, just ask and many people will share their personal experience.

PS: if you wonder about tests, this document is a good start (link here - by @Hip )

Hi @Horse Crazy , welcome to PR!

Sorry to hear you're struggling. It sounds very familiar though, as I'm sure it will to many on here.

I haven't seen Dr Lapp, but I can relate to your confusion around diagnosis and recovery. First of all the diagnosis: there is no biomarker for our illness, so we never know 100% sure that we have it or not. It's easier to know what we DON'T have, if you know what I mean.

As a direct consequence it is hard to interpret recovery stories. There are people who recover forever. Then there are people who recover for a short/longer period of time. There are also people who never recover. The people who recovered, even if it was temporarily, was that a consequence of the treatment protocol they followed, or was it spontaneous, or a combination of the two? It's hard to really pinpoint anything. I hope I'm not creating more confusion, but what I personally try to do, in lack of any certainties, is cling on to the hope that there ARE indeed people who recover, or at least get x% better. It's all about finding an approach that works for you.

Sadly there is no one-approach-fits-all. But there is a ton of valuable information on these forums. And if you have any questions about a certain approach, just ask and many people will share their personal experience.

PS: if you wonder about tests, this document is a good start (link here - by @Hip )

I was diagnosed almost one year ago by Dr. Lapp. I have had slow onset CFS presumably beginning several years ago during a few very stressful years which included a very sick premature infant, chronic colds followed by sinus infections, sinus surgery and the like. Each year that has passed I have dropped about 10% in functioning, looking and looking for answers, until I found Dr. Lapp at about 30%.
When I left his office, I felt very hopeful, hanging on to his statement that people can recover in 4-7 years (60-100%) provided they stay within the energy envelope, diet changes, sleep, rest etc, etc. As the year has passed and I have read peoples stories and struggles, I am not finding many cases that have followed this profile of recovering if recovering at all. I find myself getting depressed and disheartened and wondering if the idea of "getting better" is not really attainable. Is the "get better plan" just a bunch cow manure? Do I need to see another doctor? have more tests done? Anyone?

Hi @Horse Crazy , welcome to PR!

Sorry to hear you're struggling. It sounds very familiar though, as I'm sure it will to many on here.

I haven't seen Dr Lapp, but I can relate to your confusion around diagnosis and recovery. First of all the diagnosis: there is no biomarker for our illness, so we never know 100% sure that we have it or not. It's easier to know what we DON'T have, if you know what I mean.

As a direct consequence it is hard to interpret recovery stories. There are people who recover forever. Then there are people who recover for a short/longer period of time. There are also people who never recover. The people who recovered, even if it was temporarily, was that a consequence of the treatment protocol they followed, or was it spontaneous, or a combination of the two? It's hard to really pinpoint anything. I hope I'm not creating more confusion, but what I personally try to do, in lack of any certainties, is cling on to the hope that there ARE indeed people who recover, or at least get x% better. It's all about finding an approach that works for you.

Sadly there is no one-approach-fits-all. But there is a ton of valuable information on these forums. And if you have any questions about a certain approach, just ask and many people will share their personal experience.

PS: if you wonder about tests, this document is a good start (link here - by @Hip )

Thank you so much for the response. I feel very supported, This is my first time to post or reply and I have no idea how to do it. I tried looking up the instructions in the help section, but, that takes a lot of brain power. Thank you again, I really appreciate your time and effort to help.

 

[Effi]

This is my first time to post or reply and I have no idea how to do it.

No worries @Horse Crazy ! Just keep posting and you'll get the hang of it.

PS: if you want to edit your own post, you can do so by clicking the word 'edit' on the bottom of your post (right next to the posting time). A window will pop up. Change whatever you want to change in your post. Then click the 'save changes' button on the bottom of the window.

 

[aquariusgirl]

He is so freakin useless he should just retire already. My consult was a total waste of time. Man is clueless.