Move over, Good Doctor, there’s a new team in town.

After a year and a half of regular visits, I have broken up with the Good Doctor. She was a lifeline when I first started seeing her ~ somebody who was willing to stick with me and give me diet and supplement help when every other doctor had only offered painkillers and antidepressants and sent me on my way. However, I have lost faith in her and, worse, now that I know more, I think she probably contributed to my fast decline. I started an incredible number of supplements at full dose, all at once when I had never even taken regular vitamins before and, within two weeks, I was housebound. I eliminated grains, dairy, legumes etc. at the same time. Never did it occur to me that I should start one thing at a time at a low dose and work up. Never did it occur to me that I could have a genetic mutation that prevented me from breaking down certain drugs and substances. Never did it occur to me that you could have “detox” symptoms when you radically change your diet. I had blind faith.

Most recently, I have had some abnormal test results and the Good Doctor has given me little to no guidance on what they mean and what treatments are available, She hasn’t even answered my emails in the last 5 weeks asking her to clarify what supplements she wants me to try (she was very hazy during the appointment). So, we’re done and I have a new set of practitioners to try out (you didn’t think I was going to relax the search, did you?).

There is a clinic very close to my house where I am now seeing a rheumatologist, a medical nutritionist and a therapist. I like them all so far… kind of. There’s never a perfect fit.

Dr. O, the rheumatologist is the most energetic person I have ever met. I thought I used to bounce off the walls and multitask, but he puts me to shame. It was quite impressive, but extraordinarily exhausting. When I got home, I sobbed from the overwhelmingness of the appointment. I was in the clinic for four hours. He listened to my entire history (and, subsequently, wrote an incredibly thorough and accurate 4-page summary, which he sent to me); he thumbed through my entire binder of test results; he did a brief physical exam (during which I was hit with extreme vertigo after he did a Vulcan-type maneuver on my neck and proclaimed that it was because of sensitivity of the Brachial Plexus Nerve Bundle); he did quick x-rays of my spine (nothing significant, which I find baffling); a Dexa bone scan (osteopenia is worse, but I’m not sure if it is technically osteoporosis yet); ultrasounds of my shoulders (bursitis and fluid in both shoulders which he wanted to inject with cortisone right there and then ~ I declined because, as I told him, it’s like treating a stubbed toe while I’m fighting for my life); and, finally, a blood draw and instructions for a urine collection for mast cell tests (n-methylhistamine, PG D2, PG F2 Alpha).

I’ve put all my test results on this page. All of the MCAD urine tests were normal, which I expected, but was still frustrating. I am happy to have baseline numbers, though, in case I ever experience anaphylaxis again (knock on wood, toba toba) or a severe reaction. I will ask him to put in a standing order for another urine collection so I can retest, if needed. His directions to me were to try Zyrtec/Zantac (the latter gave me terrible nausea and stomach pain, but I’m going to try it again in case it was an anomaly), take fish oil and try Prednisone. He said he “wouldn’t blink an eye” if I were on low-dose Prednisone (Prednisolone) for the next year. I’ve had that Rx in hand now for -shocker- 10 weeks and haven’t taken it yet. But I’m going to. This is the fourth doctor to recommend trying Prednisone and, although I refuse to be on steroids long-term (because they put adrenals to sleep, cause sleeplessness, increase glaucoma risk when I am already a glaucoma suspect, increase osteoporosis risk when I’m already almost there, shut down the immune system/increase infection risk, can cause weight gain/edema and blood sugar issues, AND must be carefully tapered off over months), I think I will trial them as a diagnostic tool and, also, to know what my body’s reaction will be in case I really need them at some stage in the future.

The blood tests (ANA, CRP, ACE, PTH, ANCA, magnesium, calcium, celiac) were all normal except for high Saccharomyces cerevisiae IgG antibodies, which are found in 60-70% of Crohn disease patients. I’m not sure what this means for me. A quick google of symptoms shows that I have all of them except diarrhea, which is the main indicator of inflammatory bowel disease, so I’m hoping it’s nothing serious. I really don’t want to have a colonoscopy.

I went back a few weeks later to see the medical nutrition therapist. Dr. O had quite proudly proclaimed that she was the only Bastyr-trained medical nutritionist in the country (which I find hard to believe, but maybe I just didn’t understand her exact qualifications). Reading her bio was emotional for me ~ she attended the same Master’s program at Bastyr University that I got into but didn’t attend. I worked my ass off to do all the science pre-reqs, paying for night classes with my tips, got in and accepted the place, but deferred a year to save money and, during that year, wound up climbing the restaurant corporation ladder. I never went to Bastyr and I can’t help doing the Choose Your Own Adventure replay in my head ~ what would have happened if I went down that path? Where would my life be if I had gotten my Master’s and wound up doing something like my nutritionist is doing? Helping people, not being chronically stressed-out and sleep deprived, working normal hours, doing something I’m passionate about: food for health…. Would I be sick? I don’t think I would be. I kind of know I wouldn’t be. Anyway, she tested for SIBO and it was negative, which, of course, I was kind of disappointed about, but I’m happy I don’t have to go on the threatened liquid diet.

Lastly, I started seeing a psychotherapist, whom I like so far. He actually calls himself a “rehab counselor”, which is more accurate because he is helping me with doctor, disability lawyer and health insurance broker referrals and trying to make sure I have a supportive team that I like. He has dealt with chronic illness patients a lot, and ME/CFS patients in particular, so he gets it and I feel comfortable being my blunt, cursing, cynical self.

I have a lot of new doctor visits on my calendar, so there will be more posts like this. I know many of you think I should stop wasting my energy, but, until I stop getting leads that I think I need to follow or can’t leave the house at all anymore, I will continue my search for answers.

I was about to write, “…until I lose my healthcare or run out of money…”,  but, it turns out, the Affordable Care Act actually has worked in my case. I can’t be refused because I have these prior issues and Washington’s Apple plan is literally $0 if you have no income (but, I’m going to keep fighting to have an income, obviously). So, that it is some weight off my shoulders. Thank you, Obama. :)

41 thoughts on “Move over, Good Doctor, there’s a new team in town.

  1. BONNIE JOHNSON says:

    SOUNDS IMPRESSIVE–THE 1ST DOC IS DEFINITELY THOROUGH!! AS FOR PREDNISONE–I WOULDN’T TOUCH IT- I’VE SEEN WHAT IT DOES!! CORTISONE SHOTS I ENDORSE; I HAD ONE OVER 30 YRS AGO FOR BURSITIS IN MY SHOULDER–PAIN INSTANTLY GONE!! I ALSO OPTED FOR ONE IN MY KNEE FOR ARTHRITIS 2 YRS AGO, BECAUSE I COULD NOT WALK ON IT–TERRIBLE PAIN & AGAIN INSTANT RELIEF! I’D RATHER HAVE A CORTISONE SHOT & BE ABLE TO WALK! NO IDEA IF ANY ADVERSE REACTION, NOTHING VISIBLE, BUT THE EVIDENCE ON THE FACES OF PEOPLE ON PREDNISONE IS ALARMING INDEED!! HORRIBLE STUFF. GOOD LUCK WITH ALL THIS. I’LL CONTINUE TO REST IN MY BED, GO OUT WHEN POSSIBLE & AVOID DOCTORS & ALL THEIR TREATMENTS, IN OTHER WORDS, ENORMOUS STRESS, AS MUCH AS I POSSIBLY CAN. VERY LITTLE AVAILABLE IN MY SMALL TOWN–MAYBE WHEN I MOVE TO THE BIG CITY, BUT I’M GETTING SO OLD NOW! BLESSINGS!

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    • E. Milo says:

      BJ, I hoped (knew) I’d hear from you!! You’re always the voice of reason: “maybe you should stop all the drug and supplement experienced and all the exhausting doctor visits?” That’s the BJ angel on my shoulder. :-)

      I will indeed take your warning about prednisone and thoughts on cortisone shots into consideration, thank you!

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      • BONNIE JOHNSON says:

        MAKES ME HAPPY KNOWING U CAN HANDLE MY TENDENCY TO BE ”BOSSY” ! LOVED THE ”BJ ANGEL” & THAT U THINK I AM ”THE VOICE OF REASON”!! I REALLY NEEDED THAT POSITIVE REINFORCEMENT THIS WEEK, MY DEAR. BTW, MY FRIEND & I HAVE SIGNED UP FOR A COURSE & SUPPORT GROUP FOR CFS, FIBRO. IF THAT INTERESTS U, I CAN SEND U THE INFO. IT STARTS APRIL 14TH. EMAIL ME @ ibelieveinyl@hotmail.com, O.K? YOUR BJ ANGEL SENDS HUGS!

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      • E. Milo says:

        Is it cfidsselfhelp.org? If so, I just finished the January course!

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      • BONNIE JOHNSON says:

        YES–HOW WAS IT??

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      • E. Milo says:

        And thanks for the hugs- I’m happy I could give you positive reinforcement. :-)

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  2. Jackie says:

    Anyone who says you should stop searching so long as you still have the fire in you to do so is an idiot. I don’t just call people idiots, but that’s such a silly thing to say. I was told the same many times and also was let down by an integrative medicine dr who clearly became overwhelmed/at a loss with my complex case — I was not with her a few months.

    It took 4 years of normal tests, dead ends, good doctors, bad doctors, and moments of feeling hopeless, but if I hadn’t kept looking, I never would have found the POTS, the hyperadrenergic state, or the Ehlers Danlos Syndrome. My finding the EDS also helped my family members who, up to that point, had no good explanation for their pain symptoms.

    Don’t stop searching until you are ready. I know you don’t need told that, but I just want to confirm you’re not being ridiculous for continuing to search.

    Liked by 1 person

    • Jackie says:

      About the integrative medicine doctor — I meant to say “I was ONLY with her a few months” not “I was not with her a few months”

      The prednisone helps me with a lot of symptoms but I too fear being on it long term. I save it for 2.5 week spurts once or twice a year when my lymph node swelling/pain stop going away with tons of true bed rest and I begin waking up feeling how I usually do at bedtime.. It used to give me energy, now that I am more ill it just helps reduce the lymph node swelling and get back to my “normal” daily lymph node swelling cycle. I do notice I wake up after 8 hours when taking it whereas usually I sleep 9-11.

      Liked by 2 people

      • E. Milo says:

        Jackie, can you tell me how you take prednisone over those two weeks? How do you taper up and down? What amounts for how long? I think 2.5 weeks is a good trial for me, so I want to do it properly.

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      • Jackie says:

        I will find where I wrote it down and get back to you! This last time the titration over 2 weeks was too fast because I let everything get so out of hand so we ended up doing about 3.5 which concerned me but was necessary. Did your doctor make any mention of doing a high vs low starting dose?

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      • E. Milo says:

        My doctor wants me on it long-term. The Rx is for 5mg, but he said 10mg for a year would be fine. He doesn’t know I haven’t been on it the last few months, of course. I’m planning to start with a quarter of that 5mg pill and maybe just work up to 5 and then back down over the course of 2 or 3 weeks. As a diagnostic test. Also, I want to have a game plan if my sleep disappears. If I don’t sleep for a few nights, I need to come off it asap. Thanks for the help, Jackie! X

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      • Jackie says:

        I may not be much help based on my own experience. I start between 30-40 mg and taper down. If I started with a 10 and tapered down, I don’t believe I’d see much difference, but I could be wrong and each of our body’s react differently. What I can say, is I’ve known a lot of people who have had to take long term Prednisone for various issues. I’ve always seen that when people take 5-10mg long term, they often are started out with a larger dose to get everything under control then titrate down to the maintenance dose. Each titration is monitored for a worsening of symptoms/flare up and the speed of the titration/what the long term dose will be is determined with that info in mind.

        I know with how sensitive you are to meds, 40mg, or even 30mg, could probably equal no sleep for a good week and you wouldn’t be able to take sleep meds to knock you out!

        There are different way to taper, but I’m guessing for you, nice and slow would be best. Some people pulse their taper. For example, for a 2-3 week taper, instead of going down in dosage every few days and staying down, you’d take:
        Days 1-4: 10mg
        Day 5: 7.5 mg
        Day 6: 10 mg
        Day 7-8: 7.5 mg (evaluate body’s reaction and determine if you should do 10 next day or stick with 7.5 and continue tapering down).
        This way is not that common I don’t think or a “go-to” method (either that or my doctors just aren’t knowledgeable about pred), but it is what works best for me.

        Some people when they are tapering will only take the Prednisone every other day as to give the body a break every other day. If you Google Prednisone taper, you should be able to find info. I find many people go down by as much as 10mg a week, so I don’t find most threads I come across as helpful as others may because I can only go down 5mg at a time without my body getting angry.

        Liked by 1 person

      • Jackie says:

        I wanted to add, I go from 5mg to nothing when tapering (sometimes will do a day or two of 2.5, but not usually), so coming off 5mg ASAP if needed will hopefully be easy compared to the horror stories you hear should you need to discontinue.

        Liked by 1 person

    • BONNIE JOHNSON says:

      THIS IDIOT JUST SPEAKS FROM EXPERIENCE AFTER 12 YRS. I NO LONGER HAVE THE ENERGY & HAVE MUCH MORE PEACE NOW THAT I JUST ACCEPT THIS DISEASE FOR WHAT IT DOES & WHAT I’M ABLE TO DO. MY MANTRA IS THAT UNTIL THEY FIND THE REAL CAUSE, THEY WILL HAVE A HARD TIME FINDING A CURE & I REFUSE TO BE MADE MORE SICK WHILE SOME DOC EXPERIMENTS ON ME WITH NO IDEA WHAT THE RESULTS WILL BE. THX TO E FOR MAKING ME FEEL GOOD & JACKIE FOR INSULTING THOSE OF MY PERSUATION.

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      • Jackie says:

        I am sorry to hear my comment upset you. I do believe you may have read it with a tone/intention that was not there.

        I agree that sometimes there is no answer based on the current medical knowledge no matter how amazing of a doctor someone goes to and continuing to go to doctor after doctor can do more harm than good because of the energy the whole thing takes. I’ve had issues for 6 years, many still with no explanation, and I’d stopped pursuing it 2 years ago. I felt trying more doctors for my fevers was pointless so I stopped going to doctors in hopes they’d find a cause for that set of symptoms and instead focused on symptom management and management of health issues I had a name for. So I totally get the mindset behind just treating symptoms and not going to doctors for endless testing/being a guinea pig/told we are mental.

        I didn’t say anyone who stops searching for themselves is an idiot. That’s each person’s personal choice and I know it is never a choice made without extensive thought. I said telling her to do that when she hasn’t exhausted all possibilities and wants to keep searching… I do think that is idiotic and if I’d listened to that I’d have no diagnoses, so that view is unlikely to change.

        That’s why I told her for as long as she has a fire in her to search, to keep searching. If she comes to a place where she has exhausted every avenue that makes sense from her viewpoint or she just can’t continue this way, I’m guessing she will be content that at the current time, she is not going to find answers and should put her focus on treating symptoms. It sounds to me like that’s where you got to and you are confident there are no answers to be found for you at this time, which I’m very sorry to hear. So for you, not continuing to search works and is probably better for your well-being. To me, it doesn’t make sense for someone who hasn’t investigated every avenue they feel makes sense or that they would like investigated, to stop pursuing a root cause. She is not yet at that place and wants to search, so I say why not? I think wishing a particular cause had been looked into further or better or looked into at all can be just as stressful as all of dr visits. For some, continuing to search is fruitless, for others like me, they may gain some answers.

        Hopefully that clarifies my thoughts for you and mends any hurt feelings.

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      • BONNIE JOHNSON says:

        POINTS WELL TAKEN–NO OFFENCE TAKEN–JUST AN OFFENSIVE WORD, YES?

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      • Jackie says:

        I agree. I could have chosen a better word and next time I will. I’m not one to call names, but it scares me how many people may be misdiagnosed because not enough reasonable avenues are pursued hence my strong reaction. I definitely don’t think you are an idiot or your choices are those of an idiot — sorry that I made it seem I do.

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      • BONNIE JOHNSON says:

        I DIDN’T THINK YOU DID, JACKIE–I HAD UNDERSTOOD WHAT U SAID RIGHT AWAY. IT WAS THE WORD I TOOK OFFENSE WITH. AT 1ST I THOT I WAS TALKING TO 2 DIFF PEOPLE HERE, LOL. SO IT WOULD SEEM WE’RE PRETTY MUCH IN AGREEMENT & ON THE SAME PAGE. NOT EVERYONE RESEARCHES ON THEIR OWN, EITHER & IT CAN BE A LONELY, EXPENSIVE ROAD GOING FROM DOCTOR TO DOCTOR, SADLY, STILL PRETTY FRUITLESS, AFTER ALL THESE YEARS! BTW, DID U KNOW THEY THINK FLORENCE NIGHTINGALE, WHO WAS BEDRIDDEN FOR DECADES, MAY HAVE SUFFERED FROM CFS OR FM?

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      • Jackie says:

        Also, just so you know, I hadn’t read your comment when I said that, so it was not directed at you. I was going off of her saying some people comment she should give it up.

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      • E. Milo says:

        Wow, you two had a long conversation while I was watching Game of Thrones! For what it’s worth, BJ, you didn’t even tell me to stop searching, so I don’t think Jackie could have directed that at you. You have only ever said that it isn’t worth it to YOU and I appreciate hearing that side. It grounds me. Jackie is one passionate crusader and has chronicled her own search for answers in wonderful detail. She’s a very strong advocate for those of us who are discarded for by the medical community or left behind because of modern medicine’s limitations. Her drive and research also helps me by lighting a fire under my bum. Maybe she’s the other angel on my shoulder: “There’s more research to be done…perhaps this next door will open to answers…” :-)

        Liked by 3 people

    • BONNIE JOHNSON says:

      I JUST COMMENTED, BUT I WILL ADD THAT ALL I’VE LEARNED IS BY READING & DRAWING MY OWN CONCLUSIONS FROM HOW I AM AFFECTED. UP TO THIS POINT I KNOW SO MUCH MORE THAN MOST PEOPLE IN THE CARE PROFESSION, IT IS QUITE CRIMINAL, NOT TO MENTION RIDICULOUS! I DON’T MIND DOCTORS NOT KNOWING EVERYTHING, THERE R SO MANY DISEASES, BUT THEY R THE ”IDIOTS” WHEN THEY WON’T EVEN LISTEN TO WHAT WE KNOW ABOUT OUR OWN BODIES! I DIAGNOSED MY CFS–MY DOC REFUSED TO EVEN CONSIDER IT. I DIAGNOSED MY ORTHOSTATIC INTOLERANCE, ALLERGIES, ARTHRITIS, NIGHT TERRORS & ON IT GOES.

      Liked by 1 person

      • Jackie says:

        I agree. I’ve had to self-diagnose and get myself to a specialist in whatever it is I’ve uncovered. I’ve never had a doctor look at my and say “a-ha! You have disease x” I am lucky to live near Chicago and not too far from Mayo so I have access to good specialists with narrow scopes (ex: geneticist primarily spending career on connective tissue disorders), so once I figure out the type I need, I am in business. I carry journal articles with me on my conditions for surprise ER visits so I can educate my doctors. About 50% will read and be st least semi interested in learning, 25% skim it, ask a question or two, and basically just want to know what I want from them so they can be on their way, 25% claim they know about the disease (when they clearly don’t) and outright refuse to read anything I’ve brought along. It’s frustrating enough to have to play educator to our own doctors, but when they won’t listen after all the energy we use to get them reliable info, it’s enraging!

        Liked by 1 person

      • BONNIE JOHNSON says:

        SO VERY TRUE–REALLY LIKE YOUR APPROACH & U R INDEED LUCKY TO LIVE THERE! MY 1ST DOC HERE IS WONDERFUL–EVERYONE LOVES HIM, BEEN GREAT FOR MY HUSBAND—BUT–WHEN I HIT A REALLY BAD PATCH–STRESS OFF THE MAP, HE TOLD ME I NEED TO EAT HEALTHIER & EXERCISE–I ALMOST HIT HIM & NEVER WENT BACK. MY DOCTOR NOW IS YOUNG & CLAIMS THEY TOOK IT IN MED SCHOOL–HE’S SOMEWHAT BETTER, AT LEAST & SAT FOR AWHILE TO LET ME TALK TO HIM ABOUT IT! BUT WHO KNOWS BETTER ABOUT CFS THAN THOSE OF US WHO DEAL WITH IT DAILY?? ENRAGING INDEED! THX–TAKE ARE OF YOU!!

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  3. BONNIE JOHNSON says:

    HERE’S AN INTERESTING TID BIT. I WAS SENT TO A RHEUMATOLOGIST REGARDING AN INSURANCE CLAIM. HE LISTENED TO ME LIST ALL MY SYMPTOMS, LOOKED ME RIGHT IN THE EYE & SAID, WITH THE UTMOST CONVICTION, ”YOU HAVE CHRONIC FATIGUE SYNDROME!” I WENT HOME & PHONED MY DOC WHO HAD DISMISSED THAT IDEA OUT OF ”MY” MOUTH & TOLD HIM–BOY, DID I FEEL VINDICATED!! THEN I WENT TO THE LIBRARY & GOT ABOUT 5 BOOKS TO READ. MY FAVORITE BY FAR WAS ”CFS–THE HIDDEN EPIDEMIC” BYJESSE STOFF–HE’S EXCELLENT & WAS QUITE WELL KNOWN AT THE TIME. THAT WAS MY GO TO BOOK UNTIL I FOUND THE BLOG WORLD! WHICH HAS BEEN GREAT, I MUST SAY, AS I KNEW NOONE ELSE WITH CFS FOR ALMOST 11 YRS. JUST ME, TRYING TO CONVINCE EVERYONE & THINKING I MIGHT LOSE MY MIND IN THE PROCESS!!

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    • E. Milo says:

      I can’t imagine going through this hell without the internet for research and for support from others experiencing similar things. I don’t think I would have survived. It is inspiring to me that you are as strong and positive as you seem to be. I’m sure eventually I will tire of the chase, but I still despise that Dx of CFS. As Laura Hillenbrand said, fatigue is what we experience, but it is what a match is to an atomic bomb.

      Liked by 1 person

      • BONNIE JOHNSON says:

        PEOPLE ALWAYS SAY,”YES. I’M ALWAYS TIRED, TOO!” SO WE NEED TO SAY” DEBILITATING” FATIGUE–LIKE A FLU THAT CAME & NEVER LEFT!! FOR THE 1ST TIME I MANAGED TO SPIT OUT THE ME TERM ON FB THE OTHER DAY WHEN SOMEONE WAS BEING VERY IGNORANT ABOUT MY HEALTH ISSUES. SAYING IT IS NOT SO EASY, EH? BUT IT DOES LOOK IMPRESSIVE & WOULD SEEM TO HAVE SHUT HIM UP!! LOL. DOES ANYONE ELSE FEEL LIKE THEY R ALWAYS TRYING TO JUSTIFY THIS DARN ILLNESS TO OTHERS–TRYING TO EXPLAIN HOW IT DETERMINES OUR DAILY LIVES, HOW EXCITING IT IS WHEN WE’RE ABLE TO DO SOME SMALL THING THEY DO EVERY DAY? JACKIE & I GOT OURSELVES INTO A LONG CHAT LAST NIGHT. DO U LIKE WHEN YOUR BLOG BRINGS THAT OUT IN PEOPLE?? BLESSINGS TODAY!! WE’RE GOING OUT FOR OUR 7TH ANNIVERSARY–YAY, I FEEL UP TO IT, TOO! BJ.

        Liked by 1 person

  4. bertieandme says:

    When I first was diagnosed with ME I searched for answers/cure/help for 6 years then had to stop as the search was making me more sick. There followed 10 years without any medical intervention (where, to be fair, I did get much better ME wise). But then the pain was overwhelming and I re-started my search and discovered my EDS and MCAD. It’s such a personal and unique journey for everyone and we all do it differently.

    I did badly on Zantac (made me sick to my stomach) but do really well on Tagamet (cimetidine). Which, ironically, is on the list of mast cell degranulators but I take it because a) it helps my horrendous reflux and b) it’s the only H2 I can tolerate without awful side effects! I take Zyrec as a liquid (I always do better with liquids, even though they often have more fillers/preservatives, just so long as they don’t contain alcohol), although I’m only on the paediatric dose – I don’t often take the adult dose of any drug. I don’t take any supplements – I just don’t tolerate them well sadly.

    Jak x

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    • Jak, I think about your journey a lot. Finally, stopping the search and resting for an hour for every ten minutes of exertion – is that what you said? How incredibly difficult.
      I’m on the pediatric dose of liquid Zyrtec, too. I JUST increased it to about 8mg this week because I currently feel like I have a cat strapped to my face. I’ll try Tagamet (maybe), but can’t shake the feeling that I don’t want to be on more histamines. Xo

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  5. bertieandme says:

    Oops, I mean Zyrtec!

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  6. Great to hear Obama is being kind to you!! As for your college deferral, never say never!! Someday, who knows! The new doctors sound positive and on our side which is fantastic. Here’s to the next chapter! xx

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  7. Christine says:

    Today, in particular, I just really want to give up. After reading this post, I wonder if maybe, just maybe, I can get strong enough again to fight, even if it’s just a little.

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  8. Keep searching and being your own health care advocate. No one can better advocate for you than you.

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  9. Yeah, don’t ever give up. Eventually you will find it. You are a REALLY good researcher. I hope you do get to go to Bastyr and become a nutritionist or naturopath … you already have one prospective client (across the country, but I dunno … Skype?).
    Prednisone scares me for one of the reasons you mentioned–that it shuts down the immune system.
    Regarding “Game of Thrones,” what do you think of the recasting of Daario Naharis? Personally, I think HBO should buy all chronically ill viewers a month’s supply of supplements to compensate LOL.

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  10. That’s so kind of you! I was an obsessive researcher before this illness – I still am, obviously, but with my brain limitations, everything takes so much longer and I forget everything I learn so quickly!

    Regarding Daario, I hadn’t even noticed because I didn’t realise he was meant to be the same guy! I thought maybe a new suitor had popped up. They didn’t try to make them look the same, did they?!

    Liked by 1 person

  11. For the bursitis in your shoulders, you don’t need cortisone injections. I had it. I used this stuff called Volteran gel, it’s prescription, topical, antiinflmamatory gel, you rub on your shoulder everyday, a certain measured amount. I had a bad case, I thought, sharp pain and my shoulder would get kinda stuck due to the pain. but that gel worked for me. I am betting there is some other type, a more natural kind of anti-inflammatory, topical, cream or patch or something. Maybe someone else has a suggestion. I am suggesting something more natural due to your reactions to so many things (don’t worry, I am allergic to everything also… I am down to only ONE antibiotic I can take, a stupid zpack, which is like eating M&M’s, they really don’t kill the infection with one pack. I’m always having to get 2 or 3. It terrifies me…what happens if I get something bad? I nearly died from a sinus infection in 2012 because I couldn’t kill the infection with anything.. They were going to hospitalize me and put me on IV antibiotics and watch me, and treat me for a reaction at the same time. right..?!! NO THANKS! I said think of something else!!!!!! They called an ENT, explained my case and came up with AFrin and Mucinex every 4 hours for 3 consecutive days and if that didn’t work..had to be hospitalized. It worked! Thank God!). Now I have tonsillitis.. and waiting for a Zpack, wondering if it’s going to do anything, worried what happens if it doesn’t, will it turn into strep? That is how I went so downhill beginning Thanksgiving of 2010, and I thought I had already been downhill as far as I could have gone!. SOrry for rambling. OH SAlan paas is another patch I heard of …could try it for bursitis, it’s over the counter, or mineral ice.. I don’t know of anything that is a more natural solution, but I know there available! Try looking into Chinese medicine maybe.

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  12. That is great you can have a healthcare plan, the problem I keep hearing is …. difficulty finding doctors who accept the plans, and then the plans don’t cover a lot of intiricate tests, just some basics. For example I am on only Medicare now, and I can’t even get baseline blood test more than once every 6 months, whereas when I had a secondary policey at $300/month in addition to Medicare, I was getting blood tests every office visit, being sent for additional tests, etc.. now it’s like…I’m kind of left out in the woods to fend for myself and just “survive”. it kinda sucks. I hope you will share your experiences with the new insurance and I hope the things I’ve heard are the minority, and that you have great success with your healthcare plan and doctors accepting it and running the tests you ask for. I don’t think you should give up on doctoring as long as you find more things to explore and doctors who are not leading you on a wild goose chase. I slowed down partially due to the expense, the loss of my secondary insurance policy due to expense, my own decline in health oddly makes me less able to get healthcare, because I can’t GET THERE as often as needed. I stopped psychotherapy once I felt it wasn’t helpful anymore. I do miss talking about it and having someone understand but it became a point that she was “tired” of hearing about this and pushing me to change my thoughts, start hobbies and focus on other things besides my health, which is NUTS!!! I mean hobbies are great and all but my focus has to be on my health to SURVIVE and to try to get better, and get my life back! I could go on, but some people say I am depressing when I talk about it, so I will spare everyone that…. I’m not being a downer, I’m being realistic. I can’t live on hopes n dreams and “waste time” with meaningless tasks when I barely have the energy to care for myself and do my necessary, daily living tasks. Like I’m totally NOT going to trade my energy tha I would use to go grocery shopping, to stay home and paint or draw or knit or do yoga… the necessary things take up my energy, that is the problem, that is why I cannot work.. that is why I cannot live a normal life.. If I could use all this energy that I do not have, to do all these extra things, I could work instead..and I can’t…not yet. (I’m thinking it’s going to be never again, but we’ll see.. I’ve given up reading on all the new findints etc, got tired of the false hopes, I’l just have to trust that when there is a real cure I’ll get the treatment. My doctor is a well knwn fibro and CFS specialist, so she will definitely know when (if) said treatment is available. I’m leaving my life in her hands and I trust her 100% and I do not trust ANY other doctor at all, but I never question her, she’s amazing. She NEVER gives up, NEVER. always has another plan if something doesn’t help, she has never, in the 7 years I’ve been seeing her, has NEVER left me to fend for myself! She’s my rock. ………..

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  13. […] few weeks ago, I had the follow up with the rheumatologist I saw in January. The one who came highly recommended by multiple doctors I’ve seen. The one […]

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