Is ME/CFS a Rich Man’s Disease?

[AngelM]

Isn't that how the US system 'works'.

I wouldn't go extending it to other jurisdictions.

I’m confused, but curious. What do you mean? If it has something to do with the U.S healthcare system being a “trainwreck,” you are absolutely correct. If only that were the least of our problems.

 

[heapsreal]

I think you are very wise. We’re all looking for that magic bullet, but while we’re looking, life is passing us by. There is a word I think they use in Alcoholics Anonymous—“Acceptance.” And it doesn’t mean “giving up.” Acceptance is something I have fought against for many years. But my battle for control of every aspect of my life, has only made me bitter. And it has often turned me into a victim—and I hate that. But if I am a victim, it was my choice, and not because I couldn’t get into see a particular doctor, or don’t have a trust fund to pay for everything I want.

Sometimes just reading what you write on this forum is a wake up call. And having a group of people kind enough to listen to you on your bad days without judging, is more powerful than any magic bullet.

Spot on about acceptance. Some days you have to accept that you will be just lying in bed feeling like shit. Buy you hold on and wait for it to pass. One thing you learn quick is you cant force getting better and you just have to go with it.

I think we need to keep experimenting within reason. We can sometimes find things that might help us say 2%, get a few of them and it starts to adds up.

 

[alex3619]

I had been pretending to myself I wasn't sick until I got too sick to pretend.

This is a very common ME story.

 

[alex3619]

the other half of me is with @geraldt52 and just waiting for a real cure, because I'm not really sure even the specialists have an answer right now.

I think its important to not deplete all of your resources in a search, though testing things for yourself can indeed lead to benefits. The reason is that at some point there will be a cure or treatment that works, and for some years it will only be available if you have cash, as insurance might take time before it covers it.

 

[valentinelynx]

My only guess re: the doctor in San Diego is that he either cannot practice, take insurance, or prescribe meds outside of the state (although I do not know why)?

I agree, I don't know why this doctor won't see out of state patients. True, he likely cannot practice out of state, but that's true of most doctors, as licenses are granted by the state, so unless you pay for multiple state licenses (I have 5, and it hurts to pay for them all!) you can't practice in another state. But if the patient comes to you, that is practice in the state. Most states (all, I believe) will honor out of state prescriptions, except for some states (Hawaii is the only one I know for sure) won't accept out of state prescriptions for controlled substances. Insurance depends on what kind. If you have traditional Medicare, you can get your care anywhere that takes Medicare.

The only thing I can think of is that if this physician (I've never heard of him, either) writes a lot of prescriptions for pain medicine, in the current hysterical anti-opioid climate, one of the things the DEA looks for is patients traveling across state lines. Which is ridiculous given how few doctors are left who dare practice good pain medicine. Also, I know some Lyme-literate MDs have been targeted for treating out-of-state patients, but I'm not sure if that's been an issue in California.

I did a little research (reading reviews) on Dr. Shikhman and I'm not sure I would choose his practice. A lot of the reviews talk about unexpected high fees despite having insurance, and there are several people who say they were turned down by the practice for odd reasons: one was told the practice had just stopped taking Medicare that minute (!), another was refused after asking if they took Medi-Cal (California's Medicaid) even though the person said they would pay out-of-pocket after being told they did not accept Medi-Cal. So, it may be that they were just telling you that they don't take California patients because they suspect your pockets aren't deep enough for them. He may be a great physician, but he associates with some flaky practices (the "Complementary Medical Services") and they sell their own branded supplements at high prices.

If you don't mind saying, what in particular attracts you to his practice?

 

[perrier]

@AngelM

Everything you're saying...one of the most heartbreaking things about dealing with this condition. The money, the finances, the suffering. The lost dreams, lost relationships, the isolation, lost hope. You ask for help and then people won't look you in the eye later after they say no. Or they just ignore your pleas. Or you don't want to look them in the eye. If you're single and alone without a very significant savings or inheritance, it's like descending into a hell that very few could begin to fathom.

Dear Confetti
Yes, you have described this perfectly; even for families it is a nightmare; parents spend all their saved cash to help their children, and the money goes and there is not improvement. It is indeed a descent into some circle of hell. I pray non stop that a breakthrough is imminent.

 

[jaybee00]

Why would you want to go to someone promoting homeopathy, auricular therapy and other nonsense on his website?

 

[AngelM]

If you don't mind saying, what in particular attracts you to his practice?

I really appreciate your reply. I saw Dr. Shikman’s name on the forum and because seeing a doctor in SD was an option for me financially, I called. It really wasn’t until later that I began to hear about his practice. I assumed, incorrectly, that he would be a good choice for CFS. But that’s how desperate I am.

Seems like twenty years ago, things were simpler. A very few doctors believed in CFS and treated the condition. The majority thought all PWCFS were crazy. So you asked around until you found that one particular doctor—and you were lucky if you found him or her within a 500 mile radius. These physicians had a personal interest in CFS, and even though they considered “quacks” by their peers, but that didn’t stop them from treating CFS patients—and with the same respect snd dignity they used when treating their non-CFS patients. My doctor began treating AIDS patients in the 1980’s when other doctors refused. I think he saw CFS patients as being discriminated against, in the same way as AIDS victims, and wanted to make a difference. He has since retired. I think most of the good ones have.

Now it seems like the majority of us are left with functional medicine doctors who are only a couple of bottles short of being snake oil salesmen. Not every doctor, of course. But where ten years ago, integrated medicine was an exciting new concept, now it has become an excuse for dispensing pain medication, selling herbal remedies, and using unorthodox treatment protocols. But that is the only choice a lot of us have.

 

[ebethc]

Is ME/CFS a rich man’s disease?

yes, yes, yes... It's completely financially devastating unless you're rich. Even if you don't see doctors, stay home and "self treat" w diet and supplements, you will go to the poor house.. I've been on a push-crash cycle my whole adult life, and during the down cycles, I get as much rest as possible for as long as I can before I even think about trying to work... If I have insurance, I see doctors, but they're not helpful.... My insurance ran out just as I discovered Dr Kaufman, but I don't know if he could have helped me b/c honestly I've helped myself more than any doctor ever has, so why should he be any different?? It would be great to have help and explanations re WHY certain things help, but from what I hear, he's not too focused on gut for some bizarre reason, and that may just be my root cause... I don't need a doctor to test/re-test SIBO, leaky gut, uBiome between my "n = 1 experiments"... Martin Pall's protocol has been helpful, but only after working on gut and infections and viruses and getting LOTS of rest... I'm using up my savings just to keep a roof over my head, so before doctors even come into the picture, I have a v high "burn rate"...

I don't have POTS. I don't have CMV or HHV-6 (which, IMO, seem to make ppl sicker)... Even w what would be considered a "mild" case of CFS, it's been financially devastating

The NIH grant researchers aren't doing enough re gut to really help me too much... it seems very high level and not aggressive, so the cavalry is not coming.. at least not for me... So, if you're rich and super aggressive about figuring it out yourself, and don't have the worst case of CFS, you just might get better... i'm two out of three

 

[joanierav]

very good thread. i thought i coined that phrase "rich mans disease" yrs ago. when my son asked me why i spend so much money on food. i had to answer, because i have a "rich mans disease". meaning i had to pick up my dinner, near where ever i was at that moment ie: 7-11, wa-wa, deli's. i couldnt shop around where the prices might be cheaper. been having to live like this for years.

 

[AngelM]

had to pick up my dinner, near where ever i was at that moment ie: 7-11, wa-wa, deli's. i couldnt shop around where the prices might be cheaper

I had to respond because, when I read your post, I had just been thinking about how “eating healthy” is impossible when you are too fatigued to get to the grocery store, much less prepare a bealthy, balanced meal. There are weeks when I live off the Dominoes menu, which offers limited options, but is pretty much all that is available where I live. But restaurant delivery is expensive no matter what you order—and those drivers deserve a nice tip because, like everybody else, they’re trying to make ends meet. I’m assuming when you say you pick up dinner where ever is easiest, it is because you, too, have run out of the energy it takes to shop, lug, and cook. I feel guilty every time I order food, rather than cook, but sometimes I don’t have a choice. I don’t even want to know how much money I’ve spent at Dominoes this month. I’m on a first name basis with all the drivers. I don’t know how many people can say that.

 

[AngelM]

@ebethc, you mention the “gut issue” and I am surprised that it is not considered significant in every CFS causal theory. It sounds like you have been dealing with this as long as I have, and if I were asked today to list symptoms that I associate with every flare I have had in the last forty years, number two on the list would be stomach and lower abdominal pain. I’m also guessing you have had more endoscopies, colonoscopies, sigmoidoscopies, abdominal CT Scans, and full upper and lower GI studies, than, as my grandmother used to say, “Carter has little liver pills.” And the findings were always negative? It took years for me to connect the dots between my gut and the fatigue. And I figured it out myself—but only after decades of drinking barium and prepping for those miserable gastro tests. Torture. If there isn’t a connection between gut and CFS, then I am as crazy as dozens of gastroenerologists have told me I am.

 

[Stretched]

You won't.

I'm 35 years in, and have spent an ungodly amount of my own money on doctors who were all sure they had the answer. None of them did. There weren't any refunds. I've been done with chasing illusions for more than a decade now. I'm no worse without specialist care than I was with.

I'm skeptical when any doctor holds themselves out as a CFS specialist, at some ungodly price, when it isn't even known what CFS is. I think a lot, maybe most, of the treatments being offered are just nonsense, or playing Russian roulette with pharmaceuticals. I'd like to see some published results, however informal or small, validating the success rate by CFS specialists. There aren't any. Why not? It isn't that difficult to do a small informal study and make the results public.

I can't tell you what to do, but I'm going to hang on until someone actually figures out what this is, perhaps even for a treatment that has passed the muster of a blinded study. Fortunately, there are people now working in that direction in ways that were non existent for decades.

I’m a cynic, too... .

After running the gamut of GP's in the local area with almost nil CFS knowledge (nor interests) I picked a neurologist
(with multiple med degrees) near a major hospital/doctor complex . I had prepared a tome of point-making research for him to review at his leisure, for the purpose of thoroughly informing him of my condition(s) and to establish credibility for my requests.

The long and short of the visit was that he had never seen anyone with CFS but that he had heard of it! He gave me
a script for a spinal tap and other test workups. I left but didn't follow through with his pioneering-like efforts.

Frustrated again, I paid upfront at a VIP concierge practice, and ended up with little more than costly lip service and basic tests. I did get my requested scripts filled for a year but did not renew for more wasted time and energy.

In searching out yet another candidate PCP (as yet without success) I again came across the above neurologist. This time he was listed as an ME/CFS specialist! Now, about my cynicism... .

 

[Stretched]

yes, yes, yes... It's completely financially devastating unless you're rich. Even if you don't see doctors, stay home and "self treat" w diet and supplements, you will go to the poor house..

Keep in mind there’s always the overseas pharmacies where you can get most of the symptom relief rx’s that the ‘specialists’ dispense.

 

[ebethc]

Keep in mind there’s always the overseas pharmacies where you can get most of the symptom relief rx’s that the ‘specialists’ dispense.

right now, I'm focused on gut... I need affordable tests for SIBO, leaky gut and uBiome would be nice... I don't need a doc for those, either

 

[ebethc]

@ebethc, you mention the “gut issue” and I am surprised that it is not considered significant in every CFS causal theory.

y, I can't believe there's not a bigger research focus on gut when it's such a common issue w CFS. Not all CFS'ers have gut issues, but most do, I believe... I think CFS is more than one illness, though, which is why nobody can figure it out...

FWIW, taking Betaine HCL w Pepsin w meat was a BIG help and no doctor ever told me to do that... I take the Thorne brand, but it's individual... I tried a vegan diet first, and my gut felt so much better, but I was WAY more tired...I broke down and had a piece of chicken and felt better... Eventually, I figured out the low stomach acid problem (from reading) and started taking the Thorne Betaine... Low stomach acid can throw off so much in your gut... I used to get lots of stomach infections.. I even got a staph infection in my gut once! ugh.. it's amazing that something so simple can help... It's not a panacea, but so much better... Still fixing my gut from the "downstream" problems caused by low stomach acid..

I'm also sensitive to oxidative stress... eg the wildfires in california cause so much particle pollution, which is one of my biggest triggers... I really can't function at all, whereas most ppl just have itchy eyes or a little coughing.. we've been lucky b/c I've only had one bad week (last week) w the pollution in my city, so I'm counting my blessings. the reason I bring this up is that the second thing I've found to be helpful is a modified version of Martin Pall's protocol.. basically, high antioxidants: non-corn vitamin c (ecological formulas, 4g per day); NAC (Now brand, w co-factors selenium + molybdenum, 3g per day); Alpha Lipoic Acid (dr's best, 600mg 2x per day), and Zinc Picolinate (a few days a week, 150mg)... Mg Citrate at bedtime ~ 500mg..

@ebethcIt sounds like you have been dealing with this as long as I have, and if I were asked today to list symptoms that I associate with every flare I have had in the last forty years, number two on the list would be stomach and lower abdominal pain.

I also tested positive for SIBO, and treat w herbs.. more effective than rx (and WAY cheaper), but still ~$50 for the Biotics herbs on amzn... recommend reading up on SIBO and getting a test.. SIBO is mainstream now, so your doc may be able to give you this test ... plus, low carb diet, of course!

https://www.ncbi.nlm.nih.gov/pubmed/24891990

 

[lindaso1]

I just had a similar experience with Shikman’s office. I live in San Diego & am dual insured- Kaiser through my work & Tricare through my husband. Kaiser is PPO & they do not have a specialist & dont refer out of network. So i made an appointment with my Tricare PC to get a referral. In the meantime called Shikman's office to verify they take Tricare but was told that by their office that I couldnt use Tricare since I have primary insurance, they can't bill my secondary insurance and all treatment would be out of pocket. Just to meet with the doctor is $600, private pay. I find it absurd that I have 2 health insurance plans, yet can't seem to use either to get treatment!

 

[AngelM]

I just had a similar experience with Shikman’s office. I live in San Diego & am dual insured- Kaiser through my work & Tricare through my husband. Kaiser is PPO & they do not have a specialist & dont refer out of network. So i made an appointment with my Tricare PC to get a referral. In the meantime called Shikman's office to verify they take Tricare but was told that by their office that I couldnt use Tricare since I have primary insurance, they can't bill my secondary insurance and all treatment would be out of pocket. Just to meet with the doctor is $600, private pay. I find it absurd that I have 2 health insurance plans, yet can't seem to use either to get treatment!

I’m sorry—but that is so ridiculous it makes me mad. Who is this guy—Dr. Shikman? It sounds like he is telling you that his office won’t go to the trouble to bill a secondary insurance company, and so it is up to you to pay up and then get the secondary insurance company to reimburse you. My son is a medical provider and I know from personal experience that Tricare is very easy to work with, and that they pay very quickly. Obviously, Shikman is not accepting ordinary patients—but only VIPs who can spend a lot of time and money at his office. I personally think his policies are indefensible. And if his policies reflect his ego—I’ll pass!

 

[ebethc]

Who is this guy—Dr. Shikman?

exactly. all the years I've been on this board, and others, I've never heard of him.

correct me if I've got this wrong, but I believe you're focused on shikman b/c your daughter is in san diego and you can stay w her for free AND shikman is in san diego??... Dr Chia is in Torrance (2 hrs from S.D.) so maybe it's time to investigating him as an option? I haven't been to him personally, but there are ppl on this board who have been to him, so maybe you can find them and ask for feedback. best of luck

 

[TiredBill]

This guy sounds like a con-man. Consider yourself lucky.

Bill