dr chheda skype appointment and introduction

[Vansails]

hello everyone

I've been reading this site for many years and want to introduce my story and ask for help with ideas for treatment, research relevant to my case, medication that may help me, and anything else people would like to comment on. the more info the better, especially around rituximab. I know the OMI split up and there are unknowns across the board.

If you cannot read the whole thing, i'm skyping with dr. chheda soon and need to know what i should ask about. My main problems are MCAD, glial cell inflammation, severe psychological symptoms, POTS uncontrolled with beta blockers, and all the other problems ME brings.

i'm recently transitioning from severe ME to moderate ME with some backsliding as expected until my complications are taken care of.

I fell in at age 9, sub-clinically perhaps. I had late onset PEM in the evenings. i was very active and fit during the day, biking, running around outside, climbing trees, at 12 i could do 50 pull ups, and i swam for fun many days in a week, along with soccer and other sports.

yet at night i came down with panting, shortness of breath, cognitive and personality changes, long episodes of distressing crying, extreme pain in my head and entire body that was difficult to describe, fatigue as bad as moderate ME and extremely high heart rate compared to the day, that would go up and up and up as the evening continued.

I developed a bad case of OCD and it was all blamed on anxiety for years. I knew the doctors and my parents would not understand the severity of my symptoms, they were so incomparable to anything i've experienced, so after many trips to my confused but nice doctor, I started to keep most of my suffering to myself.

In 2006, age 11, I got a chest infection and those symptoms lingered into the daytime and caused me severe suffering for two weeks. I could barely walk. It was a nightmare, since i'd always feared my symptoms would get me sick in the daytime too. I was bedridden and went to the hospital on my doctor's request, where they only found a high heart rate, and despite their concern they could not help me.

somehow i recovered very quickly, one day i was a mess and the next day i was better. i was beyond relieved. i spent the next week travelling across the country with my classmates and did well.

fast forward to 2012, age 17, i had some continuous emotional abuse at home and stress from a personal problem and my family sort of rejecting me. my doctor begged me to leave the house, even sent in social workers, but i had nowhere to go since i depended on their care and I was getting ill.

At the same time I had a chronic cough again, that went on for months. Soon i was developing extreme fatigue in the day and missed about a third of school that year. Some days i was okay but most days i came home after one or two classes and slept all day.

My cognition declined went from an A students to failing my exams quickly. I could not concentrate. I did however graduate high school that year. I was accepted to university but was not capable of going.

I also lost the ability to exercise, and got sick after. My friends took my illness badly; belittled me behind my back, and stopped including me.

I was diagnosed quickly with ME and fibromyalgia from a local doctor who now works for simmeron research and is trying to get ampligen into his clinic. At the time he said it was mild cfs. Months later that quickly changed, and he was worried for my life. He also dx'd me with chronic lyme from igenex results, despite canadian western blot tests being negative. I wasted much time and effort on lyme drugs, and they made me sicker.

I was positive for mycoplasma pneumonia PCR as well. i used the canadian bloodtests and was positive igm for it, about five times over the years, and MDL labs showed i was igm and igg positive. it was dismissed by the infectious disease doc i saw, despite my coughs and respitory problems as my trigger. he said he worked in the lab and 20% or healthy people are positive. like i'm healthy.

my labwork also showed an ANA titer of 1:80 with speckled pattern. High IGM antibodies were found on two tests, in june this year, when i was really sick, and in the end of 2012, when i was becoming bedridden. weirdly my test from last week was normal igm.

i also have really high b12 at times, soaring to 800 and something when it's rare to be above 220. right now it's the lowest it's been. i wasn't taking b12 that i remember when it was so high.

my diagnosing doctor could not treat his patients with medication for fear of losing his licence (Dr Hyams), so he refered me to a lyme naturopath who put me on different antiboitics and antimalarials. I was still getting sicker.

In the spring of 2013, after a few jobs that i pushed myself through, I collapsed completely. I had severe ME, and was completely bedridden and developed such significant pain i was instantly suicidal. I was constantly in the ER with catatonic symptoms - i couldn't move or speak other than about wanting to die. I cried and screaming my way through the first six months. It was a dark, dark, time.

My doctor suggested i be hospitalized in psychiatry. i underwent much testing through dozens of ER visits, and nothing showed up. I worked with the pain management but the opioids were not helping my pain enough, so I was diagnosed with conversion disorder.

The nurses of course thought this was malingering and I was deprived of a wheelchair and couldn't walk, so i literally crawled around the hospital floors for a month until a neuropsychiatric expert told them i needed a chair, and confirmed the diagnosis.

I was an empty shell of myself, personality totally gone, many days of screaming, crying, begging to not wake up the next day. I was too tired to watch dvd's and do anything, and for someone with adhd, this drove me to a craze. My pain was unbelievable, and my suffering.

When I collapsed or got stuck on the floor, other patients took care of me and tried to bring me back to my room since the nurses would not. the patients who were quite lucid made sure i had enough water to get through the day, at my parents request.

finally the worst of it ended and the fourth effort to discharge me succeeded, 3 months later.

I slowly began to go outside again when dad found a home made electric trike on craigslist, and got me a dog, so i had my job of walking her each morning, and that calmed down my nervous system. i spent the other 23 hours in bed, but was well enough to keep myself somewhat busy with netflix.

I had moderate ME in 2014, but i was still convinced of my lyme diagnosis, and had not read any research on ME, and I thought chronic fatigue syndrome was like saying i had idiopathic fatigue. I could walk a bit. I tried to stay as active as possible, without exercise of course, but really my days were up and down with pain flares and catatonia symptoms, along with derealization and depresonalisation and severe brain fog, ect....

a year went by and i was confused by my diagnosis, but my parents thought conversion disorder made sense given my past history as a child, and i wanted to get better so i voluntarily decided to admit myself to a hospital, out of luck ten minutes from my house, that specialized in somatoform disorder, and my neuropsychiatrist was very very nice but knew nothing about ME and thought CFS was not existant.

i was able to go home everyday and take care of my dog, and the nurses were trained on malingering vs real uncontrollable symptoms, so i was fine with the set-up.

I could ride an electric bike, and each morning I took the forest trail to the beach and swam in the ocean, in the middle of winter, because since i was 9 i realized cold water reduced my symptoms.

I very slowly started to socialize with others, and started to play my guitar and the piano in the hospital. i was moving towards my best state in the five years of my illness.

i could spend 6 hours outside sometimes, but i crashed a lot, and severely, which included many, many fits of screaming, as the pain was still severe, my brain felt like it had been removed, and i was still suicidal. i stayed for 7 months, despite getting nowhere.

my neuropsychiatrist said he wished he could give me cancer, because treatment was so much easier (he had experience with cancer patients) but he never understood my insistance that my physical suffeirng was not the same as others- it was much more severe. He said his MS patients functioned through severe fatigue, little did he know ME is on average twice as disabling as MS (isn't that 100% more severe?)

i am at heart an adrenaline junkie, and throughout my moderate illness i pushed myself to keep this part of me alive. i was depressed, but not when i was able to leave the house. Now i'm depressed whatever i do, from chemical depression, not situational depression.

in late 2013- September 2015 there was many glimpses of hope; i went out on my sailing coach's boat to watch the racers practice on dinghy skiffs i used to sail.

i spent two summers at my cabin and swam at the beach in the city; teaching my dog how to swim.

i went adaptive sailing and placed 2nd in a national regatta for quite disabled sailors, and travelled twice alone to different regatta's. But i did miss most sailing after the first day; crashing of course. Volunteers had to take care of me at times.

i rode around the forest on my bike and got some good adrenaline, i rode my power trike each day with my dog in the forest,

I learned how to monoski/sit-ski and was subsidized to get my own sit ski from the provincial adaptive snow sports organization;, i traveled by 1.5 hour plane ride twice on my own to kimberly for a adaptive snow-sports festival where some coaches were impressed with my ability despite such little experience; i knew if i had health i could have taken the sport far; and I so wish i can do that one day.

i flew in a glider and did a loop de loop, and kayaked with the help of an adaptive program.

I was able to do adaptive hiking and brought to lakes where i swam and 10m cliffs i jumped off;

i crashed so badly after all this but it meant i was still living, even if i still was in bed most days, i still had some form of life. i miss it all; there are very little support for the home-bound, compared to the disabled and not home-bound.

i had a summer in 2015 that was great. 6 or 7 hours outside fishing, snorkeling, free diving and doing underwater photography every day, with friends. i was at my cabin on an island where i had a community of friends and could go boating all day. i would crash a bit after but i started using alcohol to manage it. in fact i was using alcohol all day.

i returned into the city in the fall and got sicker and sicker as my alcohol intolerance set in and addiction and dependence and tolerance grew. 2016 was a year i spent on and off alcohol and by the end of the year i was hospitalized again for substance abuse and suicidal ideations.

i waited a month in hospital to get into a mental health and substance abuse facility for complex patients, expecting help. they quickly ignored all my medical problems, thought i was malingering, told me I had no pain, and put me on an exercise program that i HAD to do to get my 15 minutes of fresh air.

I had been in a wheelchair for 3 years. this went as one could expect; i got sicker and sicker and started falling, fainting and going unconscious in the heat and was refused to see my neurologist.

my pain levels were intolerable and i was refused methadone, despite my pain disappearing on cough syrup of dextrmothorphan, an NDMA antagonist like methadone. I almost died and went into a coma at one point when i self-treated my pain with cough syrup; the doctors said the paramedics only just arrived in time to save me. I still was not put on methadone so continued my syrup habit without a care should i die.

I escaping the unit in all about a dozen times, looking for help to see my pain specialist. my fatigue made participation impossible, so i was kept in the locked up unit and punished with no passes for fresh air until i went swimming; which i never did.

once my doctor called security to get my out of bed. three big men stood in my room as i rolled out of bed onto the ground. i was soon forced out my room.

i was belittled, humiliated, suicidal, self-harming, smoking for the first time in my life, and my ME was getting worse, as the abuse grew and continued to horrific levels. I was forced to walk up and down stairs, and around the hallways three times for one pass outside. I was surprised at how ill i was getting by the end of my stay; so i planned an escape i wish i'd done months earlier;

i broke three windows and was discharged. i wish i had the energy to sue them, but it's not something i have the time for yet, as all time goes into getting help with my health. I do plan on doing something about it; i wrote to the board of physicians and surgeons and got a despicable reply.

i got home and was a total mess. after 6 months of waiting i saw a cardiologist and was diagnosed with severe POTS, and the 6 months of daily low grade fevers stopped with the beta blockers I was given. I was bedridden, could not stand up without losing vision, mom said i looked comatose most days, and a good day was when i had the energy to watch shows on my computer. Most days I wanted to die, and could not bare the thought of the next minute, hour, and day I had to go through. Even someone entering my room caused my brain to go into shock.

I did not speak much, i was in a catatonic like state. it was hell on earth. I had severe ME and severe neuropathic pain continued, while my pain specialist said i could try methadone, they messed up the dose and i failed the first trial (2 to 3mg and i had been on suboxone for two years, so my tolerance was as high as a drug addict on heroin who take at least 50mg) I had to stop the methadone despite knowing a higher dose would fix the problems of withdrawal, and take away my pain.

My naturopath did some bloodwork and i was positive for re-activation of EBV, and put me on valtrex then famclovir (EA-D igm positive i believe)

I also didn't know one of the drugs i was taking was causing a constant severe MCAD reaction, because i wasn't diagnosed. My depression was completely and utterly overwhelming me and it took all my energy to not cry all day.
severe bone pain,
paralyzed in bed,
could not eat much,
fevers, my body was extremely weak
lost my vision upon standing,
had hot sweats, total breathlessness,
severe adhd, no concentration,
bone crushing fatigue,
the rashes,
derier's sign and could "write" on my legs since i was a kid
skin itching from water,
my stomach was always bloated and my bowel movements days in between
tightening of my throat, like being choked, it actually hurt badly, since 2013 onset
major allergy to wasps (whole leg swelling up from toes to upper thigh last time)
new reactions to medications that were known to induce histamine reactions.
alcohol intolerance
terrible pain in my spine that feels like itching that goes away after taking microglial inhibitors.
an empty shell once again.

i have continous high leukocytes in my urine usually without a culture; is this MCAD attacking the smooth cell organs?

so i use xanax daily to stop the severe dysautonomia, sweating, breathlessnes and tight throat. now my naturopath who used to treat lyme is caring for my MCAD with cromolyn and today i start kefitofen

After 8 months in this condition, i began to stabilize a little. i saw my neuropsychiatrist who suggested ECT for my depression, but i said no due to my POTS, fragile state, and unknowns of anesthesia with severe ME. I do believe my glutamate, gaba and dopamine neurotransmitters need rebalancing but would they if i still have encephalitis which i think is from glial cells (???)
I was offered TMS treatment too but could not leave my bed to get there for the minimum 3 days a week for 4 weeks, but preferably 5 days a week for 4 to 6 weeks.

I wanted vagus nerve stimulation but nobody in Canada does it for severe intractable depression that i'm aware. that is how i could get it done with FDA or Healthcanada approval. Looking at the research it didn't have great depression remission numbers BUT it seemed to treat autoimmune conditions that were incurable, and put into total remission and cure, including fibromyalgia, lupus, and rheumatoid arthritis after one year, if i remember correctly.

more recently i saw an allergist, in the hopes he could help me diagnose MCAD, but all he did was confirm i had dermographia and so my skin was sensitive and i had red flared up marks after he used a pen to scratch my skin (derier's sign), an indication of MCAD. he only knew was mastocytosis was, but confirmed i had no food allergies with skin testing. Not much help.

After i stopped taking the drug that was causing the MCAD continuous flare, I was thrown into a hundred times worse MCAD reaction. withdrawal always does that to me, but this was the worst.

my abdominal pain was one of the worst things i've experienced. the first trip to hospital i was rushed through cat scans, x rays, ultrasounds, pelvic exams, going ahead of other patients because the GI specialist was sure this pain was something serious, but all exams were fine.
even IV hydromorphone barely took the edge off, and she told me she really wished she could admit me but she wouldn't know where (internal medicine - duh) so they sent me home; even after admitting i was her sickest patient. I could not eat or drink so this was a big problem.

So I spent my time going to the ER about 12 times for iv fluids before they admitted me; they threw me out once or twice, nothing i wasn't used to, and i changed hospital and found an internal medicine team wanted to admit me.

My pain was so severe i actually ran away from hospital once, then signed myself out against doctor's orders to get street methadone for my pain. i had spent 2.5 weeks screaming, punching the walls in my room, destroying my bedroom, in a haze of abdominal pain that was just UNbearable.

so i overdosed and almost killed myself accidentally, so after i was discharged from the trauma bay, i went back to the other hospital with the internal med team and they got the pain and addiction team to put me on methadone, going up to 40mg, so i stayed for a week. They were amazed my GP and pain specialist would have put me on 1-2mg, and said that shouldn't even count as a trial.

they diagnosed fecal impaction and waited for a bowel movement to fix me. after 6 days my x ray showed my bowel was unstuck from my upper abdomen, and i stopped throwing up water and bile, and after an ng tube overnight i was discharged, with the discharge paper saying my bowel movement fixed the problem, despite me stressing to them i knew i had not had a movement.

it was clearly, from the pain, some sort of intestinal blockage or ileus. I also had itching all over, rashes, severe joint pain, worse fatigue, lost 20 pounds, had high white cell count, high CK, worsening anemia and metabolic acidosis/ketosis and never regained proper stomach function. At least the methadone dramatically improved my depression and neuropathic pain, and migraines.

they got me to see a rheumatologist for the high CK which was a concern by the internal med in hospital. It is now normal. I had very low vit D so i was on 50,000 iu a day for some months!

i had to cancel an appointment when i was hospitalized again after i overdosed because i thought my pain was so much better i could stop methadone, and went into horrific pain, and was told my doctor might not put me back on it, so i went crazy and took some tylenol which i miscounted thank god. the doctors admitted me to put me back on methadone. i go back soon and will ask about MCAD testing, and mastocytosis testing to rule that one out.

my hematology referral requested by my cardiologist for shortness of breath was just cancelled because he thought it was just iron deficiency anemia from a 2015 blood test, but my recent blood tests show i actually have high iron saturation and good upper levels of iron load. only slightly low binding iron test.

My GP is terrible at saying on the referral what my problems are with ME; i could have low stroke volume; low blood volume; vasodilation, and nevermind MCAD blood problems. now i must sort that one out.

my naturopath for now is taking care of MCAD. he actually mentioned it a month before the big flare in hospital. All my research indicated my symptoms matched the disease perfectly. I was put on cromolyn last month and am about to start ketotifen when my pharmacy gets it in.

my POTS is a mess right now because i've become allergic to beta blockers as they are mcad inducers, to be very unscientific. they probably release a lot of histamine.

on good days i take half my dose but on bad days i go through hell and have a lot of neuropathic type pain from microglial and glial cell inflammation in my spine and back muscles, which responds to glial cell inhibitors.
minocycline was the best pain reliever, but the second dose i had induced an allergic reaction. (one cannot be allergic until exposed once to the drugs, i think). Some supplements help, but i need something much more powerful, and am hoping to get on celebrex as i think it's an micoglial inhibitor. i do not know the difference between glial cells and microglia cells.

BTW, i'm canadian, so my treatments are covered by insurance, and my medications.

Right now i have good weeks and bad weeks according to the degree of MCAD activation going on in my body. i can leave the house on good days in a tilting powerchair independently, or in my manual chair for very short times (it doesn't tilt) when i go for appointments. I sometimes can go out to the beach or ride my adaptive trike.

I still realize i've managed to escape very severe ME and am lucky my parents might have the money for some of my treatment ideas. We are not sure if we will be able to afford rituximab yet.

The last 5 years have been rough, with a few close calls, and much medical abuse. I REALLY need dr. Chheda to be vigorous and thorough and aggressive because i've given myself a year after we start treatment; if i'm still severely ill as in bedridden, i'm not sure i can hang on.

my recent bloodwork for dr chheda is puzzling; how can i have almost no tsh and okay t4 and t3? we are redoing the test. anybody know what high thyroglobulin indicates? i've never had thyroid problems before.
TSH

A

0.03

0.32-5.04

mU/L
T4 Free

12.3

10.6-19.7

pmol/L
T3 Free

5.46

3.00-5.90

pmol/L
Thyroperoxidase Ab

16

<35

IU/mL
Thyroglobulin
Thyroglobulin

A

241.1

<60.0

ug/L
Thyroglobulin antibodies may cause
false reduction of this test result.



Thanks for anyone who managed to read this; i tried to make it friendly but it is really long.

Meds i'm on daily;

lyrica for nerve pain - want off
effexor - depression - want off
xanax - MCAD/addiction - want to decrease dose
sodium cromolyn - new so no effects yet MCAD
ketotifan - new today MCAD
testosterone - my body does not make it on it's own
methadone - severe pain - very helpful and lifesaving
zopiclone - great for sleep
seraquel - for staying asleep
nozenan - for withdrawals at first, told it helps regulate many neurotransmitters ???
lithium - mood stabilizer/ for rages
stool softeners and laxatives - opioid side effects
sumatriptan - migraines

supplements;

quercitin, lutien, vit C for MCAD
artemisinin - mycplamsma pneumonia supposedly plus Super oxidase antioxidant properties
NT factor anti-aging - mitochondrial health
5 - mthf and SAMe - mthfr supplements (unsure really what i should use)
PEApure - Palmitoylethanolamide natural pain killer (small effects, needed large dose and expensive, so not daily)

Ones i might try but need to research more;

PQQ with ubiquinol
ribose powder
NAC
p-5-p
acetyl l carnitine
l carnitine

THANK YOU for any comments, recommendations, ideas, research, personal stories, and other things that might help me especially relating to my skype with dr chheda. I need to stabilize my complications and then get on rituximab and i'm worried she will not want to rush it when time is of essence.

Liam, vancouver, BC, Canada

ps

anyone from canada that could help me with medical tourism insurance and how to be covered when you are going abroad specifically for medical treatments; and how to get it covered when there is no available alternatives in canada. i know ritux won't be covered, but ME treatment should be, but i'm afraid the complex chronic disease clinic with dr. patrick will be seen as ME treatment. I need a contact info for Dr. Bested and how do i go about suing a doctor of facility for the exercise treatment? what's a solicitor and what's a lawyer? cheers.

 

[Remy]

Meds i'm on daily;

lyrica for nerve pain - want off
effexor - depression - want off
xanax - MCAD/addiction - want to decrease dose
sodium cromolyn - new so no effects yet MCAD
ketotifan - new today MCAD
testosterone - my body does not make it on it's own
methadone - severe pain - very helpful and lifesaving
zopiclone - great for sleep
seraquel - for staying asleep
nozenan - for withdrawals at first, told it helps regulate many neurotransmitters ???
lithium - mood stabilizer/ for rages
stool softeners and laxatives - opioid side effects
sumatriptan - migraines

Welcome to the forums! It sounds like you have suffered greatly and I'm so sorry for that.

I don't know how you can successfully realistically treat ME/CFS and MCAS though while on this cocktail of meds. I understand you hope to get off some of them, but that is going to be a very long term tapering process that might be better managed by someone locally. Those drugs all have so many side effects, it's almost impossible to separate out what is symptoms and what is drug induced at this point. I hope Dr Chheda will have some insight for you on this matter.

Also, opioids are well known to increase glial cell activation. They can help with pain in the short term, but in the long term, they always make things worse by increasing hypersensitivity. Opioids also increase the release of histamine so may not be working for you in that respect either.

I hope you are able to find a good supportive medical partner to help you sort through all of this. I'm sure you are feeling understandably overwhelmed.

 

[Vansails]

Thanks for the response and compassion. Ooh goodness you threw my brain into the horrors of medication withdrawals. Agreed. But im no superman, and im pretty sure id need to be to get off all the monster drugs.

the old ones o have taken long term need going. Unfortunately as you say im tapering them one by one.

The good thing is some of those meds have been stopped at one point or another for whatever reason... my own idea, or pharmacy out, or just never re prescribed within the same month, my forgetfulness to take them. I know the changes then.

I definately made this too long for rituximab responses as I see. I think people will be interested in that more. I just needed to write my thing down so I don't forget on skype conference, and I want to make a treatment blog for the community.

Lyrica is my big one I need off but failed three tapers due to the fact im constantly suicidal and the doctors stop everytime I have a crisis which is usually never far away. Im never stable except at being unstable.

Effexor im ok tapering right now. Off 1/3rd and going.

Effexor, lyrica are the only drugs I have not stopped since 2013. The rest are newer and can and have been stopped to see difference. Dependance is a real issue for opioids and benzos, the two evils.

Methadone is a big stumper, two edge sword, reacting mmy allergies sometimes, but keeping me sane. I taper my dose often to see the difference. I would like to stop in long term.


Xanax is an unfortunate situation where my idiotic gp is not changing it to long acting drug to taper. I also use it when I am wheezy...everyday...like a constant anaphylaxis at mild level.

The desperation of thos drug is tough to take, as I try to reduce my dose and always somehow fail and do the reverse. Its a mast cell stabilizer that really is my only relief at high dosing.

So im unstable with an illicit drug but with such severe daily symptoms I feel stuck.

I thonk dr chheda will tell me my gp needs to help get me off them. I beg him everytime I see him.

I still have to ask her if she will make co sultation notes for my specialists or gp.

On bad mcad days I skip methadone but ive been on opioid replacement since 2015 and suboxone gave me hyperalgesia as well as short term opioids,

but methadone ndma antagonist acts differently and actually calms down the hypersensitivity in the brain too I notice much less PEM.

I did stop it recently but tried to off myself with tylenol as I got unstable while trying to use suboxone.

Learnt hard way about hyperalgesia for sure.

If I use suboxone at 1mg every second day im good and no hyperalgesia. Normal dose 8 to 16mg.

I also skip days with methadone and that helps to keep me from feeling glued to it.

Beta blockers were wonderful until my mcad started becoming a full time nightmare. Im unsure why im reacting to everything now and that does mean medicine needs to be well planned and methadone is an issue due to its histamine releasing abilities.

I use activated charcoal regularly to get things out of my system. But withdrawal can happen if im not careful with dosing.

Thing is, at the same time medidicne is what I need to get well. Trying to change my neurotransmitters will be a big goal. This is very hard challenge.

I want dr chheda to give me medicine, hard core, and so at the same time im wondering since stopping all addictive meds is not possible until im more stable and not suicidal, what the answer would be other than more medication, albeit less noroptopics.

I am slowly tapering off some easy meds now. I am not able like a healthy person to withdraw, cns issues and all, I always end up hospitilized or with police at my house while I lose control and feel I must self harm. my brain is too sensitive with severe me.

For health travel insirance that makes my parents to okay a trip with me, I cannot travel to states unless 90 days unhospilized.

My withdrawals and hospital trips have caused a six month delay in planning my trip to dr chheda. We did not expect her to ask to skype first. You can see now the reason im so unable to de drug.

I want rituxomab asap but I need control over pots, and mcad, and substance abuse aka xanax, which means more meds for first two problems. That might get me into moderate ME, then rituximab is more feasable, but is time an issue? Is medicine my out?

Yes and I hope. With my self expected limiting time, deliberate, and aggressive medical treatment seems necessary. She cannot prescribe anything via skype so im counting on seeing her if I dont get masively disappointed, and denied rituximab, I may do ECT at home in canada.

Agreeing with you, I would want a vagus nerve stimulation implant to get better sans meds, but have yet to find a clinic in us to take me. Not much searching yet. Limited ability to do phone calls so I just hired a social worker.



I may have made it sound like im better than I am. Most days are lights off, curtains closed, earplugs in, and no computer u til maybe evening. When I push myself I can do 20 mins on my tilt chair.

I have ideas for medication I hope she is on board. I am in a non stop pill dispensery! It will be complicted meeting. What do you think my chances are with rituximab? I wonder if they treat minorly severe ME with it.... shoulda done it when I was moderate two years ago.

 

[MaeB]

Hello. I feel so much for you and your terrible ordeal. I am familiar; my son has similar and we lived in canada and could get no sensible treatment.

Who is Dr. Cheda? If this doctor is not a Lyme doctor (more on why I think this later) then I would not bother. I researched doctors in Canada for ten years. You need a doctor who is Lyme literate. Regular allopaths do not understand multi-pronged disease processes.
I am only able to write once, de to time concerns and taking care of my family. Due to not having doctors while in Toronto, I dedicated twelve years to research this matter. I was active for many years in the Canadian Lyme Association. Today I work as a medical anthropologist and cultural educator of doctors in the US. I remain active in many chronic disease forums. Here is my condensed and very random thinking on the matter. I hope it will help.
I implore you to seek the help of a Lyme literate physician. there are several Canadian Facebook groups that will try t help you find someone who is familiar
with chronic multiprponged diseases such as you suffer. You may not have Lyme per se. You could have another tick born illness though. Even in the absence of a tick borne infection, Lyme Literate practitioners understand - are the only ones who understand- multiple symptom illness, and who practice Functional Medicine.
Only the doctors familiar with infections overlapping will be the best to help you.
Read: "From Fatigued to Fantastic" by Jacob Tietlebaum. You are probably farther along in progression than his protocols will address, but
taking the supplements and looking at the disease(s) will give you insight and good suggestions.
You need a Functional Medicine doc. there are not many in Canada. Again search out the Canadian Lyme Disease support groups.
It is impossible to know if you were ever bitten by a tick. They are the size of a sesame seed. From your story it seems likely though that you could have had many exposures. Evn one could do it though.
Teitlebaum protocol: NT factor, ATP fuel; glutathione IV or oral (expensive, but cheap compared to all the other stuff): all these supplements are for mitochondrial support. D-Ribose essential for rebuilding
all the cells damaged. Exercise - do not push absolutely only to moderate tolerance for a period of time, at least a year. The body must heal, detox, rebuild, rest (sleep)
The first line of most CFS/ME/tick borne infections/viral loads/ reactivated viruses/chlamydias/mycoplasma et alia infections: RESTORE regular SLEEP cycle FIRST.
Maintain regular hours and sleep hygiene. No screens darkest room poss. take meds, switch them until you find something that works, and then it may have to change ---whatever to get some sleep and work towards getting it between 9p and 9a. 10 hours is not too much.
You may have to investigate diet: check out GAPS diet and others, elimination diets to rule out allergies. R/O ciliac
For your testing to rule out tick borne illness: IGeneX labs in the US
Again look on the facebook groups for Canadian support.
WATCH; UNDER OUR SKIN. On U-tube orfrom te library. Essential info there as you embark on a healing journey. It will clue you in to the whys and where offs of how our current immune dysfuntion and chronic diseases are being dealt with in the medical establishment. the movie has a sequel which shows the people as they improve and get better. (cant remember the name, same director though) diseases (Lyme can manifest as as many as thirty diseases) Reading: Dr. Richard Horowitz videos and books. Better Health Guy- Website packed with excellent information. Pheonix Rising website. Look at Dr. Amy Yasko.
Research : Methylation, detox pathways; MTHFR (your B12 results are highly indicative of an MTHFR blockage or snp)
Dr. Myhill is another as is Ben Lynch for more info on this.
Dr Shoemaker (Richie) has extensive research into mold which is at root of many problems that manifest in multi pronged illness.
Research Low Dose Naltrexone.
This is enough to get started, but for primary research I would think: How to establish and accomplish complete un interupted refreshing sleep:
2) boost glutathione by IV, diet ingestion, drink pure grass fed whey protein in smoothies to boost glutathione too; and taking supplements - best is Liposomal Glutathione by Researched Nutritionals - but there may be other liposomal products out there that I do not know about.
3) your entire pituitary hypothalmic thryroid axis is off. You will need a good LLMD or LLND to address that;4) Take D-Ribose; 5) Take ATP FUEL and NT factor (Researched Nutritionals) 5) be kind to yourself Most imp. go on those boards and find a Lyme Literate Naturopath (I like them almost more than MD's a lot due to emphasis on Functional Medicine) or a recommended Lyme Literate MD.
4) Read medical Herbalist Stephen Harrod Buhner, especially "Healing from Lyme Co-infections" (even if you have none this book describes the underpinnings of chronic disease very well) and all his other books latest edit of "Lyme" and others on herbals.
Dr.ernie Murakami is one of Canada's soldier docs in educating ND in BC about multipronged illnesses. He has a FaceBook and poss. a Forum. Good people.
Do nots: Don't spend 5000.00 going to a ILADS specialist in the US. (YET) you need to learn alot about how these doctors practice and explore the many possibilities that with your own research. Some people have only after huge expense realized that they MAY have been able to work with a less expensive doctor. Get the ear of a sensitive experienced LLND you Prob. can heal without hundreds of expensive tests. Don't listen to anyone who has a magic bullet.
DO find out if you have tick born illnesses. Sound likely given your outdoor life and historical pictiure. Here are a few of the things ticks carry: Babessia, Bartonella, mycoplasma fermentens, Rocky Mountain Spotted Fever, chlamydias, Brucella, --- all these can lead to: mast cell, glial cell, viral, hypo-pituitary axis unhinging, chronic fatigue, fibro, and dozens more.

this is a lot, and I have not spell checked or edited. I only had time for a simple draft. Oh other doctors who think and blog: Marty Ross, MD; Lyme M.D; also you can view some International Lyme and Associated Diseases videos on U-Tube. Last but prob really important: watch the movie doc;"Under Our Skin" to get an idea of real life real people w/many of the problems you have. (again, depressing, but the sequel features people healing!)
I strongly suspect Lyme, but you will not get it diagnosed correctly in Canada, unless you go to a doctor that you find through one of the groups mentioned. guaranteed. So don't believe them if they tell you it's negative. It is a clinical diagnosis but the College of Physicians and Surgeons has persecuted doctors who try to treat it, learn about it, or even sign off on a US lab test for it. That's why I send you to the Canadian FaceBooks-- read back and forth there to learn about the awful politics and the many brilliant get-arounds people have managed in order to find a doctor who understands this. you have to out smart the College. Hearts and hug, I do bel. you can get better. It's just the approaches will take education and guidance and as you learn more you will be able to frm a collaborative partnership with an LLND or MD to heal. All the best.