New here... advice on finding Diagnosis/Treatment?

Lycosa

Member
Hello,

I am new here and I'm not sure if I am in the right place - I haven't been diagnosed with ME/CFS or Fibro or, well, anything specific yet. All I have is an ever increasing list of bizarre symptoms, and medical bills, and frustration. The most recent developments have been POTS and orthostatic hypotension, which led me to looking into dysautonomia (that matches a bunch of other symptoms I have as well) and I thought "aha! that's what I have!" except I dug a bit further and realized that's not really an illness either, more of a set of things that go wrong when something else is out of whack, and one of those something elses is ME/CFS, so here I am.

About ten years ago I had some sort of illness with extreme fatigue, fever, aches - I was flat out for days. I didn't have insurance at the time, but my boss at the vet clinic I worked at paid for me to go to a doctor, who said it was probably a tick or mosquito borne illness and wrote me a prescription for doxycycline. No testing was done because of the aforementioned 'no insurance'. I also had to vacate a mold infested house that had caused me some respiratory issues a few month before that. I did get better, but the symptoms returned periodically over the next few years - it felt like coming down with a terrible flu, but the flu never came, just the aching joints, sore skin, fever, and fatigue. I'd also get a rash around my temple area, large painful bumps that were not pimples. Several times I was so weak I could barely get out of bed. I did have insurance by then, and actually worked for a lab company so got free bloodwork. My doctor wrote up lab orders for everything she could think of including blood cultures - nothing specific came up.

More time passed; the episodes still come and go but have slightly lessened in severity over the years, at least as far as the aches and fever. But new symptoms came. I started to have terrible issues with night-time insomnia and daytime drowsiness. This led to a sleep study and a diagnosis of Narcolepsy with Cataplexy but I'm not sure that's accurate, or at least not as a primary condition. My eosinophils are always slightly high but my neutrophils and overall white count fluctuate at times, one time so low that I was sent to a hematologist who wanted to do a bone marrow test, but then the next count was low normal and he said to just watch it. It was low again on my last annual bloodwork. I could not take the medication they put me on for the narcolepsy (a central nervous system depressant, basically the legal version of GHB) as it affected me so badly I think it damaged my nervous system (nothing found on an MRI) and since then I've added bladder issues, gastrointestinal issues, orthostatic hypotension and tachycardia, and a host of other oddities. My primary care physician dutifully shuffles me off to whatever specialist seems appropriate for each new symptom but no one seems to want to work together to assemble the various pieces into whatever whole they are all part of.

I am not sure what direction to go in next. It's been over a decade now, and the doctors I work with agree that there's something going on, but since they haven't been able to identify it, it seems like they are content to sit back and wait and see if it turns into something they recognize. In the meantime, I am slowly watching my quality of life eroded steadily. The fatigue, fog, and dizziness are making it hard to do my job. Sometimes, I have good days, and that makes it even worse, because the contrast reminds me just how small my world has gotten.

Anyway, any suggestions of where I might look for some answers would be greatly appreciated. I am in Western NC.

Thanks,
Lycosa
 

Edie

Active Member
Hello,

I am new here and I'm not sure if I am in the right place - I haven't been diagnosed with ME/CFS or Fibro or, well, anything specific yet. All I have is an ever increasing list of bizarre symptoms, and medical bills, and frustration. The most recent developments have been POTS and orthostatic hypotension, which led me to looking into dysautonomia (that matches a bunch of other symptoms I have as well) and I thought "aha! that's what I have!" except I dug a bit further and realized that's not really an illness either, more of a set of things that go wrong when something else is out of whack, and one of those something elses is ME/CFS, so here I am.

About ten years ago I had some sort of illness with extreme fatigue, fever, aches - I was flat out for days. I didn't have insurance at the time, but my boss at the vet clinic I worked at paid for me to go to a doctor, who said it was probably a tick or mosquito borne illness and wrote me a prescription for doxycycline. No testing was done because of the aforementioned 'no insurance'. I also had to vacate a mold infested house that had caused me some respiratory issues a few month before that. I did get better, but the symptoms returned periodically over the next few years - it felt like coming down with a terrible flu, but the flu never came, just the aching joints, sore skin, fever, and fatigue. I'd also get a rash around my temple area, large painful bumps that were not pimples. Several times I was so weak I could barely get out of bed. I did have insurance by then, and actually worked for a lab company so got free bloodwork. My doctor wrote up lab orders for everything she could think of including blood cultures - nothing specific came up.

More time passed; the episodes still come and go but have slightly lessened in severity over the years, at least as far as the aches and fever. But new symptoms came. I started to have terrible issues with night-time insomnia and daytime drowsiness. This led to a sleep study and a diagnosis of Narcolepsy with Cataplexy but I'm not sure that's accurate, or at least not as a primary condition. My eosinophils are always slightly high but my neutrophils and overall white count fluctuate at times, one time so low that I was sent to a hematologist who wanted to do a bone marrow test, but then the next count was low normal and he said to just watch it. It was low again on my last annual bloodwork. I could not take the medication they put me on for the narcolepsy (a central nervous system depressant, basically the legal version of GHB) as it affected me so badly I think it damaged my nervous system (nothing found on an MRI) and since then I've added bladder issues, gastrointestinal issues, orthostatic hypotension and tachycardia, and a host of other oddities. My primary care physician dutifully shuffles me off to whatever specialist seems appropriate for each new symptom but no one seems to want to work together to assemble the various pieces into whatever whole they are all part of.

I am not sure what direction to go in next. It's been over a decade now, and the doctors I work with agree that there's something going on, but since they haven't been able to identify it, it seems like they are content to sit back and wait and see if it turns into something they recognize. In the meantime, I am slowly watching my quality of life eroded steadily. The fatigue, fog, and dizziness are making it hard to do my job. Sometimes, I have good days, and that makes it even worse, because the contrast reminds me just how small my world has gotten.

Anyway, any suggestions of where I might look for some answers would be greatly appreciated. I am in Western NC.

Thanks,
Lycosa
I've had Fibromyalgia for 22 years and 2 years later contracted a entero bacteria and lost most of my health at that point. Many MDs in those days did not know how to help us and most thought that we had psychiatric problems. I was diagnosed, however, within two years after a round of specialist. My MD. did help with sleep, pain and anti-inflammatory medication, But could not help with all the other myriad of problems of my illness. Eventually, I saw a Naturopath Doctor who did help me. They practice "Functional Medicine" where they seek the root of health problems and try to correct at the source. Though, I'm not cured, my health has greatly improved because of all the side health issues that he successfully dealt with. There are some MDs that practice both regular and natural medicine and refer to themselves as 'Integrative Practitioners'. There may be other names that apply to them as well, depending which Country they practice in. Because they are Medical Doctors, insurance companies may cover the cost of visits and drugs, but most probably, not natural supplements. I'm in Canada and the province I live in does not cover me for my ND., although I can claim his visits against my taxes. To find that kind of help, check the internet directories, or ask employees at Health Food stores. There is help out there, just be persistent. Take care.
 

Lycosa

Member
I've had Fibromyalgia for 22 years and 2 years later contracted a entero bacteria and lost most of my health at that point. Many MDs in those days did not know how to help us and most thought that we had psychiatric problems. I was diagnosed, however, within two years after a round of specialist. My MD. did help with sleep, pain and anti-inflammatory medication, But could not help with all the other myriad of problems of my illness. Eventually, I saw a Naturopath Doctor who did help me. They practice "Functional Medicine" where they seek the root of health problems and try to correct at the source. Though, I'm not cured, my health has greatly improved because of all the side health issues that he successfully dealt with. There are some MDs that practice both regular and natural medicine and refer to themselves as 'Integrative Practitioners'. There may be other names that apply to them as well, depending which Country they practice in. Because they are Medical Doctors, insurance companies may cover the cost of visits and drugs, but most probably, not natural supplements. I'm in Canada and the province I live in does not cover me for my ND., although I can claim his visits against my taxes. To find that kind of help, check the internet directories, or ask employees at Health Food stores. There is help out there, just be persistent. Take care.
Thank you!

I believe there are some integrative medicine clinic fairly near me but I wasn't completely certain what that entailed. There's actually a functional medicine doctor in my town but I've heard both good and very bad things about the practice, and it made me wary.
 

Not dead yet!

Well-Known Member
Thank you!

I believe there are some integrative medicine clinic fairly near me but I wasn't completely certain what that entailed. There's actually a functional medicine doctor in my town but I've heard both good and very bad things about the practice, and it made me wary.

I second the motion to find a Functional Medicine doctor, not an Integrative Medicine place. I am in Eastern NC, and Duke has an Integrative Medicine department which my husband has been going to. They are not any different from and not even as thorough as MDVIP (I am a member of MDVIP). We are very disappointed in the depth of Duke Integrative Medicine. Basically the difference is, if you discuss supplements they don't roll their eyes at you, but they also do not suggest or recommend any, and they deviate not at all from ordinary clinical practice. They even pooh poohed my husband when he asked for an Epstein Barr test after I had confirmed that I had unusually high values of Igg that would go down, with improvement in my health if I take Valcyclovir.

My doctor was willing to test me for many infections, and although he is still "normal" enough to be conservative, he is very obliging (he's MDVIP).

The difference with a Functional Medicine doctor is usually first of all they do not participate in any insurance, but they might help you file claims. The reason they do not is because their practice does not subscribe to Clinical Practice Guidelines, nor will they be held to any that are optional. That may sound risky, but that's the reason why you get the same ineffective healthcare from each doctor. CPG's are written by policy makers who are often very beholden to drug companies. Executives shuttle back and forth from Government Agencies that write CPGs, Insurance companies who also write CPGs, and Drug Companies. Over the years there has been a lot of discussion about limiting this traveling executive situation, but it's hard to make a law that says someone isn't allowed to apply for a job. Basically there are no safeguards to protect patients from profiteers.

So Functional medicine hamstrings that as much as possible by NOT participating in Insurance and only going so far as to maintain the MD license. This frees them to do much more for you, but it's expensive.

There are many examples of such doctors, Dr. Wahls, Dr. Horowitz, the Ultrametabolism Dr. (can't think of his name, sorry), etc. You might want to see this book, although there are hundreds if not thousands already published in a similar vein:

http://www.goodreads.com/book/show/23014887-how-can-i-get-better

Note: I read that book because so many times I'd see people claiming that CFS is Lyme under a different name. Once I understood that doctors who treat Lyme treat it as a functional disorder of the immune system, I could understand why there is such overlap. In my current opinion (subject to change if better information is found), CFS and similar illnesses are all suffering from two states of denial in the medical community: 1 - The "modern" world doesn't suffer from parasites and 2 - viruses are briefly transient and not dangerous. The book I mentioned deals with much more than Lyme.

The appendix is where that book really shines, it's otherwise a bit long winded and fluffy imo, but then, I've been struggling too, and for a long time, and I've heard all the general advice already a million times. So there is a certain amount of mental fatigue for me when I read for the n-th time that I should be getting good sleep, and avoid stress etc. The appendix looksl ike it was written for doctors, it has a format like "If you have a mold issue, this is what we do.... drug A, drug B, how often, how much, whether we use it as an IV or orally... etc" It's very specific.

There is another category of doctor, but it's only really relevant in Oregon or Arizona, the Naturopath, (often both ND MD) who might write a prescription per month, but otherwise heals only with diet, exercise and supplements, sometimes they also offer IV-drips of vitamins or chelation. They are only licensed in the two states, but they may practice in other places. I haven't found one like that in NC anywhere but I didn't look in Asheville, which is probably your best bet to find an ND/MD or a Functional MD. If you don't find anything in your area, then Michael Sharp MD is a Functional Medicine doctor in the Raleigh/Durham area. I haven't been to see him so I can't vouch, but his website looks interesting and I may try his practice later when I've exhausted all possibilities with my MDVIP doctor.

Integrative Care is basically "concierge service" like MDVIP, but in my experience it is just a marketing term that is more palatable to large medical institutions who recognize that people can't get good health care in a 10 minute office visit. The only real difference I've noticed is my husband gets more time to talk about health with a doctor. That's good, but any time he's asked for tests, he has been talked out of it or outright refused. MDVIP does not limit me like that. If I want a test for Ebola, I can get it just for the asking, with the proviso, that maybe I will have to pay out of pocket if there isn't enough clinical justification for the insurance company.

Still a Functional MD would be proactive, not waiting for me to figure it out and ask for tests. MDVIP offers me freedom, but once I'm beyond my MD's training, it can feel like freefall. In any case, the GP you see should be the one putting together a complete picture for you (including any reports from alternative practitioners), so if you're stuck with one limited to 10 minute visits, but otherwise a decent MD, then just make a series of visits (if they are willing too) and discuss one issue at a time, without a goal of solving it, but the goal of putting together the full picture before selecting a solution. It's slow but that tactic worked for me when I still had a regular GP, not a concierge GP.
 
Last edited:

Edie

Active Member
Hello,

I am new here and I'm not sure if I am in the right place - I haven't been diagnosed with ME/CFS or Fibro or, well, anything specific yet. All I have is an ever increasing list of bizarre symptoms, and medical bills, and frustration. The most recent developments have been POTS and orthostatic hypotension, which led me to looking into dysautonomia (that matches a bunch of other symptoms I have as well) and I thought "aha! that's what I have!" except I dug a bit further and realized that's not really an illness either, more of a set of things that go wrong when something else is out of whack, and one of those something elses is ME/CFS, so here I am.

About ten years ago I had some sort of illness with extreme fatigue, fever, aches - I was flat out for days. I didn't have insurance at the time, but my boss at the vet clinic I worked at paid for me to go to a doctor, who said it was probably a tick or mosquito borne illness and wrote me a prescription for doxycycline. No testing was done because of the aforementioned 'no insurance'. I also had to vacate a mold infested house that had caused me some respiratory issues a few month before that. I did get better, but the symptoms returned periodically over the next few years - it felt like coming down with a terrible flu, but the flu never came, just the aching joints, sore skin, fever, and fatigue. I'd also get a rash around my temple area, large painful bumps that were not pimples. Several times I was so weak I could barely get out of bed. I did have insurance by then, and actually worked for a lab company so got free bloodwork. My doctor wrote up lab orders for everything she could think of including blood cultures - nothing specific came up.

More time passed; the episodes still come and go but have slightly lessened in severity over the years, at least as far as the aches and fever. But new symptoms came. I started to have terrible issues with night-time insomnia and daytime drowsiness. This led to a sleep study and a diagnosis of Narcolepsy with Cataplexy but I'm not sure that's accurate, or at least not as a primary condition. My eosinophils are always slightly high but my neutrophils and overall white count fluctuate at times, one time so low that I was sent to a hematologist who wanted to do a bone marrow test, but then the next count was low normal and he said to just watch it. It was low again on my last annual bloodwork. I could not take the medication they put me on for the narcolepsy (a central nervous system depressant, basically the legal version of GHB) as it affected me so badly I think it damaged my nervous system (nothing found on an MRI) and since then I've added bladder issues, gastrointestinal issues, orthostatic hypotension and tachycardia, and a host of other oddities. My primary care physician dutifully shuffles me off to whatever specialist seems appropriate for each new symptom but no one seems to want to work together to assemble the various pieces into whatever whole they are all part of.

I am not sure what direction to go in next. It's been over a decade now, and the doctors I work with agree that there's something going on, but since they haven't been able to identify it, it seems like they are content to sit back and wait and see if it turns into something they recognize. In the meantime, I am slowly watching my quality of life eroded steadily. The fatigue, fog, and dizziness are making it hard to do my job. Sometimes, I have good days, and that makes it even worse, because the contrast reminds me just how small my world has gotten.

Anyway, any suggestions of where I might look for some answers would be greatly appreciated. I am in Western NC.

Thanks,
Lycosa
Hi again Lycosa Years ago, when I started researching my illness, I came across the book, 'FROM FATIGUE TO FANTASTIC' written by Dr. Jacob Teitelbaum MD. He had ME/CFS while in medical school and when he recovered, his main practice was helping people with ME/CFS & FM. I could see myself in pretty well every symptom he was describing and I'm thinking that it might help you as well, to decipher what is ME/CFS and what isn't. As I read the book, I realized that in order to access some of the treatments he was suggesting, I needed to see a Naturopath Doctor. Be aware, that a Naturopath is not necessarily a doctor. Mine is, so check whomever your' re thinking of going to see , is truly a Naturopath Doctor Physician. Dr. Teitelbaums newest book is called the 'FATIGUE & FIBROMYALGIA SOLUTION' that shares up to date ME/CFS & FM treatments, whether medical or natural. His website is www.endfatigue.com Hope this helps.
 

ShyestofFlies

Well-Known Member
Hi there @Lycosa Welcome to the forums, sorry to hear you are having struggles with your health also. When I first came here I also wasn't sure if I belonged here, had no diagnosis for my latest and greatest health issue. I personally feel if your symptoms have enough of an overlap to lead you here, you should stick around. We can all learn from each other at some point, as long as you alert people that you're undiagnosed or whatever they can make up their own minds based on symptom overlap and eventual diagnosis/recovery- what have you.

____
I got sick in Sept 2015, my pcp's position was if I waited it out I would get better and be totally fine. I got tired of waiting being bedbound and housebound for the most part- and in May of 2016 I went to a CFS specialist that was within my area... about a 200 mile drive to another state.

She listened to my story for about 45 mins-1 hour, said it did sound like CFS based on her experiences, but that we should do some tests to be sure and she would be willing to help me get to the bottom of this.

The tests reflected some trends found with CFS patients and she has tried me on a few medications that no other doctor would prescribe, and offered tests no one would write for. The insurance and my in-state doctors aren't really willing to listen, or work with me... they are convinced that I will get better with exercise, weight loss, or antidepressants.

They do nothing really, unless it is an acute problem or they can be convinced to write for a standard conventional test (X-ray, blood)... no MRI's, CT's, etc...


When I got sick I could leave the house once a week/alternating weeks for a short short period of time, provided I rested. I could still cook for myself, still attempt to do my own laundry, take care of my dog, etc.

I now use crutches, a cane, and a wheelchair.

I carry earplugs, sunglasses, and an eye mask where ever I go.

Leaving the house is rare. I hid my level of disability for a while from doctors, but if they can't see it it doesn't exist... so I started coming with my mobility gear for tests and to doctors offices.

I have a disabled parking placard which helps.

____


I personally think we each have our own preferences with doctors and that while we should caution/monitor how much we let desperation affect us...

Where ever you decide to seek treatment and whoever takes you seriously, respects you, and wants to help you is your best option.

Some people get lucky and get a great PCP who is willing to learn, others get the watch and wait... and wait.. and wait... and wait.

Some people like the specialist route, I have my preferences on some specialist beliefs over others (I prefer conventional medicine that is open minded to supplements, and no pressure to do coffee enemas, I don't like doctors who want to prescribe me 200$ a month of their own brand of supplements, or who charge over $300 for a follow-up).

Some people like the natural doctors, naturopaths, ND's... my state doesn't recognize them at all (and neither does the US social security administration).

Some people find one specialist of some kind, it can honestly be anything- except maybe a podiatrist? These days, Infectious disease, physiatrist/kinetic doctors, pain management specialist, rheumatologist, neurologist, endocrinologist, etc. Who is the most helpful to them.

____
If you need to go through insurance, then you are going to have to self advocate with a tremendous amount of your time and energy. If your current doctors aren't helping you, you gotta insist for what the plan is, ask for tests/treatments that are reasonable, and referrals until they listen.

It won't always be successful, it might even be demoralizing, frustrating, and cause you to fire doctors, but ultimately your doctor will rarely be as motivated to get you a better quality of life as you and your family are because they do not see and live with what you go through on a daily basis.

There are a lot of resources here and it can be overwhelming to find them sometimes, and possibly more than ever resources just on the web.

I've been working on a compilation of technology resource-tools and one for physical resource-tools to help people with ME and other illnesses.

____

I started my journey to my specialist with a packet of info I typed up.
Header: Name, DOB, date the packet is printed
Footer: page # out of # of pages total

Important ALLERGIES! (not annoying stuff, deadly stuff)

Current meds, # a day/ or as needed, how often, and specific instructions.

Current supplements
Same info as above, if there is a counter indication (blood thinning or Seratonin: mention that)

Current Life Limiting symptoms
(Try to limit it to 1-3 per appointment.)

All the important symptoms period that are ongoing
With my own description and definition, a rating/range of how bad they are with notes on whether they "flare," "spike," or are "chronic and consistant."

Resolved Symptoms!
And what 'fixed' them or made them tolerable

Current diagnoses
And what symptoms you have from each

Your pharmacy (or multiple)
Name, store number, Location (with address), fax number if you have one.

Your doctors/locations/contact
How long you've been seeing them or if you have dropped them ("Dropped" is nicer than "Fired")

This is ideal for a New Patient appointment, as you may want to get your records imported to your new doctor... you may also, not want to!

(Some people prefer "blank slate" appointments, other times doctors require your records which is fair if there are opioids/narcotics involved).

Notes (blank, for hand written during the appointment!)

Notes (typed):
What do you want to ask about. Sometimes showing the doctor is faster than you reading it.

Can I try LDN?
Do I need X test (insurance problems)?

Was once one of mine- it got me a script written!

_____

I would also decide how far you are willing to go, how much you are willing to spend at one time. Scope out local people- facebook groups, support groups, random posts on here or PR-phoenix rising, Inspire.com, any other groups you can find for ME, CFS, FM/FMS, EDS, POTS, dysautonomia, MCAS, Fatigue, pain, autoimmune diseases, if you're desperate and can find someone (MD, DO, ND, NP, PA) who is willing to listen and it hasn't been officially ruled out- it can't hurt as long as you are willing to give it the time and the money.
 

Lycosa

Member

Lycosa

Member
I second the motion to find a Functional Medicine doctor, not an Integrative Medicine place. I am in Eastern NC, and Duke has an Integrative Medicine department which my husband has been going to. They are not any different from and not even as thorough as MDVIP (I am a member of MDVIP). We are very disappointed in the depth of Duke Integrative Medicine. Basically the difference is, if you discuss supplements they don't roll their eyes at you, but they also do not suggest or recommend any, and they deviate not at all from ordinary clinical practice. They even pooh poohed my husband when he asked for an Epstein Barr test after I had confirmed that I had unusually high values of Igg that would go down, with improvement in my health if I take Valcyclovir.

My doctor was willing to test me for many infections, and although he is still "normal" enough to be conservative, he is very obliging (he's MDVIP).

The difference with a Functional Medicine doctor is usually first of all they do not participate in any insurance, but they might help you file claims. The reason they do not is because their practice does not subscribe to Clinical Practice Guidelines, nor will they be held to any that are optional. That may sound risky, but that's the reason why you get the same ineffective healthcare from each doctor. CPG's are written by policy makers who are often very beholden to drug companies. Executives shuttle back and forth from Government Agencies that write CPGs, Insurance companies who also write CPGs, and Drug Companies. Over the years there has been a lot of discussion about limiting this traveling executive situation, but it's hard to make a law that says someone isn't allowed to apply for a job. Basically there are no safeguards to protect patients from profiteers.

So Functional medicine hamstrings that as much as possible by NOT participating in Insurance and only going so far as to maintain the MD license. This frees them to do much more for you, but it's expensive.

There are many examples of such doctors, Dr. Wahls, Dr. Horowitz, the Ultrametabolism Dr. (can't think of his name, sorry), etc. You might want to see this book, although there are hundreds if not thousands already published in a similar vein:

http://www.goodreads.com/book/show/23014887-how-can-i-get-better

Note: I read that book because so many times I'd see people claiming that CFS is Lyme under a different name. Once I understood that doctors who treat Lyme treat it as a functional disorder of the immune system, I could understand why there is such overlap. In my current opinion (subject to change if better information is found), CFS and similar illnesses are all suffering from two states of denial in the medical community: 1 - The "modern" world doesn't suffer from parasites and 2 - viruses are briefly transient and not dangerous. The book I mentioned deals with much more than Lyme.

The appendix is where that book really shines, it's otherwise a bit long winded and fluffy imo, but then, I've been struggling too, and for a long time, and I've heard all the general advice already a million times. So there is a certain amount of mental fatigue for me when I read for the n-th time that I should be getting good sleep, and avoid stress etc. The appendix looksl ike it was written for doctors, it has a format like "If you have a mold issue, this is what we do.... drug A, drug B, how often, how much, whether we use it as an IV or orally... etc" It's very specific.

There is another category of doctor, but it's only really relevant in Oregon or Arizona, the Naturopath, (often both ND MD) who might write a prescription per month, but otherwise heals only with diet, exercise and supplements, sometimes they also offer IV-drips of vitamins or chelation. They are only licensed in the two states, but they may practice in other places. I haven't found one like that in NC anywhere but I didn't look in Asheville, which is probably your best bet to find an ND/MD or a Functional MD. If you don't find anything in your area, then Michael Sharp MD is a Functional Medicine doctor in the Raleigh/Durham area. I haven't been to see him so I can't vouch, but his website looks interesting and I may try his practice later when I've exhausted all possibilities with my MDVIP doctor.

Integrative Care is basically "concierge service" like MDVIP, but in my experience it is just a marketing term that is more palatable to large medical institutions who recognize that people can't get good health care in a 10 minute office visit. The only real difference I've noticed is my husband gets more time to talk about health with a doctor. That's good, but any time he's asked for tests, he has been talked out of it or outright refused. MDVIP does not limit me like that. If I want a test for Ebola, I can get it just for the asking, with the proviso, that maybe I will have to pay out of pocket if there isn't enough clinical justification for the insurance company.

Still a Functional MD would be proactive, not waiting for me to figure it out and ask for tests. MDVIP offers me freedom, but once I'm beyond my MD's training, it can feel like freefall. In any case, the GP you see should be the one putting together a complete picture for you (including any reports from alternative practitioners), so if you're stuck with one limited to 10 minute visits, but otherwise a decent MD, then just make a series of visits (if they are willing too) and discuss one issue at a time, without a goal of solving it, but the goal of putting together the full picture before selecting a solution. It's slow but that tactic worked for me when I still had a regular GP, not a concierge GP.
Thank you for that explanation. It makes sense to me and I'm somewhat familiar with the pitfalls of the medical system, having worked for a time for a lab company that was developing their own EMR - I learned more than I ever wanted to about so called 'meaningful use' among other things. I actually saw my own doctor, who has an internal medicine degree, go from really working with patients in depth to mostly filling out computer checklists, referrals, and prescriptions after her practice was bought out by a hospital chain. I think she's willing to dig deeper, but doesn't have the time or the flexibility to do so, any more.

I'll take a look at that book. Funny you mentioned Dr. Wahls - I actually had a friend recommend one of her books recently and following her diet guidelines have helped boost my energy a little.

Thanks,
Lycosa
 

Lycosa

Member
Hi again Lycosa Years ago, when I started researching my illness, I came across the book, 'FROM FATIGUE TO FANTASTIC' written by Dr. Jacob Teitelbaum MD. He had ME/CFS while in medical school and when he recovered, his main practice was helping people with ME/CFS & FM. I could see myself in pretty well every symptom he was describing and I'm thinking that it might help you as well, to decipher what is ME/CFS and what isn't. As I read the book, I realized that in order to access some of the treatments he was suggesting, I needed to see a Naturopath Doctor. Be aware, that a Naturopath is not necessarily a doctor. Mine is, so check whomever your' re thinking of going to see , is truly a Naturopath Doctor Physician. Dr. Teitelbaums newest book is called the 'FATIGUE & FIBROMYALGIA SOLUTION' that shares up to date ME/CFS & FM treatments, whether medical or natural. His website is www.endfatigue.com Hope this helps.
Thanks! :)
 

Lycosa

Member
Hi there @Lycosa Welcome to the forums, sorry to hear you are having struggles with your health also. When I first came here I also wasn't sure if I belonged here, had no diagnosis for my latest and greatest health issue. I personally feel if your symptoms have enough of an overlap to lead you here, you should stick around. We can all learn from each other at some point, as long as you alert people that you're undiagnosed or whatever they can make up their own minds based on symptom overlap and eventual diagnosis/recovery- what have you.

____
I got sick in Sept 2015, my pcp's position was if I waited it out I would get better and be totally fine. I got tired of waiting being bedbound and housebound for the most part- and in May of 2016 I went to a CFS specialist that was within my area... about a 200 mile drive to another state.

She listened to my story for about 45 mins-1 hour, said it did sound like CFS based on her experiences, but that we should do some tests to be sure and she would be willing to help me get to the bottom of this.

The tests reflected some trends found with CFS patients and she has tried me on a few medications that no other doctor would prescribe, and offered tests no one would write for. The insurance and my in-state doctors aren't really willing to listen, or work with me... they are convinced that I will get better with exercise, weight loss, or antidepressants.

They do nothing really, unless it is an acute problem or they can be convinced to write for a standard conventional test (X-ray, blood)... no MRI's, CT's, etc...


When I got sick I could leave the house once a week/alternating weeks for a short short period of time, provided I rested. I could still cook for myself, still attempt to do my own laundry, take care of my dog, etc.

I now use crutches, a cane, and a wheelchair.

I carry earplugs, sunglasses, and an eye mask where ever I go.

Leaving the house is rare. I hid my level of disability for a while from doctors, but if they can't see it it doesn't exist... so I started coming with my mobility gear for tests and to doctors offices.

I have a disabled parking placard which helps.

____


I personally think we each have our own preferences with doctors and that while we should caution/monitor how much we let desperation affect us...

Where ever you decide to seek treatment and whoever takes you seriously, respects you, and wants to help you is your best option.

Some people get lucky and get a great PCP who is willing to learn, others get the watch and wait... and wait.. and wait... and wait.

Some people like the specialist route, I have my preferences on some specialist beliefs over others (I prefer conventional medicine that is open minded to supplements, and no pressure to do coffee enemas, I don't like doctors who want to prescribe me 200$ a month of their own brand of supplements, or who charge over $300 for a follow-up).

Some people like the natural doctors, naturopaths, ND's... my state doesn't recognize them at all (and neither does the US social security administration).

Some people find one specialist of some kind, it can honestly be anything- except maybe a podiatrist? These days, Infectious disease, physiatrist/kinetic doctors, pain management specialist, rheumatologist, neurologist, endocrinologist, etc. Who is the most helpful to them.

____
If you need to go through insurance, then you are going to have to self advocate with a tremendous amount of your time and energy. If your current doctors aren't helping you, you gotta insist for what the plan is, ask for tests/treatments that are reasonable, and referrals until they listen.

It won't always be successful, it might even be demoralizing, frustrating, and cause you to fire doctors, but ultimately your doctor will rarely be as motivated to get you a better quality of life as you and your family are because they do not see and live with what you go through on a daily basis.

There are a lot of resources here and it can be overwhelming to find them sometimes, and possibly more than ever resources just on the web.

I've been working on a compilation of technology resource-tools and one for physical resource-tools to help people with ME and other illnesses.

____

I started my journey to my specialist with a packet of info I typed up.
Header: Name, DOB, date the packet is printed
Footer: page # out of # of pages total

Important ALLERGIES! (not annoying stuff, deadly stuff)

Current meds, # a day/ or as needed, how often, and specific instructions.

Current supplements
Same info as above, if there is a counter indication (blood thinning or Seratonin: mention that)

Current Life Limiting symptoms
(Try to limit it to 1-3 per appointment.)

All the important symptoms period that are ongoing
With my own description and definition, a rating/range of how bad they are with notes on whether they "flare," "spike," or are "chronic and consistant."

Resolved Symptoms!
And what 'fixed' them or made them tolerable

Current diagnoses
And what symptoms you have from each

Your pharmacy (or multiple)
Name, store number, Location (with address), fax number if you have one.

Your doctors/locations/contact
How long you've been seeing them or if you have dropped them ("Dropped" is nicer than "Fired")

This is ideal for a New Patient appointment, as you may want to get your records imported to your new doctor... you may also, not want to!

(Some people prefer "blank slate" appointments, other times doctors require your records which is fair if there are opioids/narcotics involved).

Notes (blank, for hand written during the appointment!)

Notes (typed):
What do you want to ask about. Sometimes showing the doctor is faster than you reading it.

Can I try LDN?
Do I need X test (insurance problems)?

Was once one of mine- it got me a script written!

_____

I would also decide how far you are willing to go, how much you are willing to spend at one time. Scope out local people- facebook groups, support groups, random posts on here or PR-phoenix rising, Inspire.com, any other groups you can find for ME, CFS, FM/FMS, EDS, POTS, dysautonomia, MCAS, Fatigue, pain, autoimmune diseases, if you're desperate and can find someone (MD, DO, ND, NP, PA) who is willing to listen and it hasn't been officially ruled out- it can't hurt as long as you are willing to give it the time and the money.
Hi Shy,

Thank you for sharing your story with me and for the ideas. I'm at a point where I've already spent so much - still paying off existing medical bills - that I have to pick carefully what I try next, because I feel like I might only get one more good shot before I just run out of funds and have to give up, at least for a while, anyway. Everyone who has replied has really given me some good things to consider - once the fog clears again a bit ;-)

I really like your idea of having that information packet - that would probably really help for me to do, especially since with such a long history and so many symptoms, and the fact that I don't always communicate very well verbally... Between the fatigue and the sensory issues / social anxiety related to my Asperger's, I can come off either very well spoken or barely able to form a sentence, depending on how many 'spoons' I have left at a given moment. It also depends on the manner of the doctor involved, as well. Maybe being able to pull 'me' out of the equation and reducing it to a page of written facts would help facilitate better progress?

Thanks again,
Lycosa
 

Not dead yet!

Well-Known Member
Oh there's one more thing I should mention. There are IV clinics, all they do is provide Vitamin C or multivitamin drips, sometimes chelation, and often glutathione etc. Although there is a doctor and a nurse practitioner on site and they do see you, mostly their practice is only to provide this service because it can be so hard to get.

In NC I haven't yet found such a place, although there are two "health centers" that offer if, maybe, after you go through their "nutrition class." I tried to point out to them that I can't attend a class because I'll pass out from exhaustion. It's a miracle if I can make it to their office visit and I won't be going there alone because of the risk of fainting.

You can search for Vitamin C IV clinic in google to find some. There are a few in PA and a few in Florida, but not much in between.

Best wishes to you!
 

Lycosa

Member
Oh there's one more thing I should mention. There are IV clinics, all they do is provide Vitamin C or multivitamin drips, sometimes chelation, and often glutathione etc. Although there is a doctor and a nurse practitioner on site and they do see you, mostly their practice is only to provide this service because it can be so hard to get.

In NC I haven't yet found such a place, although there are two "health centers" that offer if, maybe, after you go through their "nutrition class." I tried to point out to them that I can't attend a class because I'll pass out from exhaustion. It's a miracle if I can make it to their office visit and I won't be going there alone because of the risk of fainting.

You can search for Vitamin C IV clinic in google to find some. There are a few in PA and a few in Florida, but not much in between.

Best wishes to you!
I think there are at least a couple of places in Asheville, NC that do IV therapy. That always seemed weird to me - I don't know enough about it to make a valid judgement as to whether it's legitimate, I guess. I used to do field IT for a lab company and I know there were at least two facilities I visited where they had IV suites set up, a whole room full of recliners with IV drips...

Lycosa
 

Lycosa

Member
I wanted to thank everyone again who has replied to my post and messaged me with info. I don't know if my replies conveyed the gratitude adequately... I got a little overwhelmed and I was really foggy for the past few days, so in case I seemed abrupt, I wasn't firing on all cylinders and honestly, I really am thankful. ;-)

I guess I have a lot of research to do - I've been reading all of the resources that were suggested to me and it's a bit of a learning curve. One thing I realized is that I really need to get my medical records in order - I don't even have copies of a lot of my lab work, and what I do shows that the testing wasn't as extensive as I thought. I know there are services that will round everything up for you for a fee and put it in a usable format, does anyone here have any experience with that? I'd really be interested in a web services or app that would be able to take the data and chart it - I've used Microsoft Healthvault but it makes you enter everything in manually line by line and it's tedious...

Lycosa
 

Remy

Administrator
I'd really be interested in a web services or app that would be able to take the data and chart it - I've used Microsoft Healthvault but it makes you enter everything in manually line by line and it's tedious...
Maybe make this a new post with this as the headline to see if that gets you any more responses from people who aren't following this thread? I'd like to know myself. I use My Medical app but I don't think it is very well supported anymore. And it was tedious to enter the data too. :)
 

Lycosa

Member
Maybe make this a new post with this as the headline to see if that gets you any more responses from people who aren't following this thread? I'd like to know myself. I use My Medical app but I don't think it is very well supported anymore. And it was tedious to enter the data too. :)
Yeah, I was planning on doing that at some point but thought I'd sift through the forums first to see if that's an issue that's already been covered before...
 

Not dead yet!

Well-Known Member
I think there are at least a couple of places in Asheville, NC that do IV therapy. That always seemed weird to me - I don't know enough about it to make a valid judgement as to whether it's legitimate, I guess. I used to do field IT for a lab company and I know there were at least two facilities I visited where they had IV suites set up, a whole room full of recliners with IV drips...

Lycosa

Yeah it looks so odd, first time I saw it was when I was barely 20, mostly elderly people getting chelation from an MD office in NJ. From what I understand, the NP type sites started as a rebellion among the EMT's and nurses who could clearly see the benefits of saline and vitamins etc on weakened patients. But the medical community and even the doctors resisted their pleas to help them.

I have a personal story about that. Before I went to see a neurologist finally, I would end up in the hospital about monthly with a migraine plus loss of consciousness, inability to talk, etc. It was random whether I'd get a dextrose-saline IV or not. I always begged for it because it was the ONLY thing that helped me. Otherwise I'd be given opiates or benzos which would ultimately tighten the very muscles that were already beating on my nerves (later found to be occipetal neuralgia). I am allergic to imitrex (hives).

I'm sure that more than a few nurses would've gladly given me what I needed and foregone the opiates/benzos treatment. It wasn't until I heard the stories of other CFS sufferers that I realized the IV thing is a repeated theme among us. As is encephalopathy. My migraines turned out to be similar to a concussion and require specific drugs to keep the swelling down.

Thank you for mentioning Asheville, it's a bit far, but I my have more luck. I might go to one of the health centers for CFS, possibly in another country. My finances are not what they used to be and so it is a huge gamble. But status quo isn't helping anything either.
 

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top