Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[Mere72]

Have you looked into a genetic cause for drug sensitivities? My doctor ordered a pharmacogenetics test and it spelled out why I was sensitive to many drugs and how to adjust the dosing on individual drugs.

I did a Gene Sight test that showed whether or not I should take some drugs based on my genes. But I tried some on the "Green" list, and still had bad reactions. Would you mind sharing with me the pharmacogenetics test you used?

 

[Daffodil]

A doctor in New York is looking for people in the area who are able to properly assess CCI/AAI - does anyone know of any?

We should make a list of good diagnositicians. I'm happy to put on Health Rising.

Hi Cort. Well, there is dr. Bolognese, of course. Other than that, I think most people go to NUCCA chiropractors, if I am not mistaken. If you google "upper cervical" or "NUCCA" chiropractors, you will get a list of them

 

[StarChild56]

Are there any others on here who have this high sensitivity (I know a lot of us do), and have been able to tolerate CCI surgery with all the post-op pain meds, etc?

I have MCAS and I have had allergies to things that I'd previously tolerated, including pain medication I'd taken 2x a day for years. Had to stop it. Antibiotics I'd previously tolerated, adhesive tape, etc.

I was very concernced but - I have been taking a lot of medications (both prescription and OTC) for my MCAS the last year and a half and Dr. Bolognese and his team are very accostomed to working with patients that have MCAS, EDS, POTS, etc. I was able to tolerate the anesthesia, etc., they were able to take care of my pain post op (though we thought I might be having a reaction to one pain med, don't know if I was or not stopped it for a while then resumed it). I was still taking all my MCAS meds in the hospital - I brought all my meds with me. Also, my specialist, Dr. Kaufman, works directly with Dr. Bolognese so when I was having a problem they talked about it together.

I am now home and almost 4 weeks post op and have been fine with my 2 pain meds (although I suspect my oral pone I *may* have problems with - but I plan to get off these meds as soon as possible without risking my health and comfort).

I hope my response was intelligible.

ETA: I have been able to take a lot of meds, though so not as sensitive as you are...

 

[StarChild56]

hi all. so i spoke to Dr. Gilete via Skype just now..

I told him I cannot afford surgery and was going to try stem cells.

xo

I just wanted to say - and words just do not suffice - how sorry I am about this. It is just so upsetting that people can not get the medical care they need and keeping you in my thoughts and prayers for a solution.

 

[Mere72]

I have MCAS and I have had allergies to things that I'd previously tolerated, including pain medication I'd taken 2x a day for years. Had to stop it. Antibiotics I'd previously tolerated, adhesive tape, etc.

I was very concernced but - I have been taking a lot of medications (both prescription and OTC) for my MCAS the last year and a half and Dr. Bolognese and his team are very accostomed to working with patients that have MCAS, EDS, POTS, etc. I was able to tolerate the anesthesia, etc., they were able to take care of my pain post op (though we thought I might be having a reaction to one pain med, don't know if I was or not stopped it for a while then resumed it). I was still taking all my MCAS meds in the hospital - I brought all my meds with me. Also, my specialist, Dr. Kaufman, works directly with Dr. Bolognese so when I was having a problem they talked about it together.

I am now home and almost 4 weeks post op and have been fine with my 2 pain meds (although I suspect my oral pone I *may* have problems with - but I plan to get off these meds as soon as possible without risking my health and comfort).

I hope my response was intelligible.

ETA: I have been able to take a lot of meds, though so not as sensitive as you are...

This was very helpful, thank you! I'm so glad you did okay with the meds and your surgery went well!

I can completely relate to taking things once and then being unable to tolerate them later. I have never been diagnosed with MCAS, I just know I'm "extremely sensitive", even to supplements. My ME dr thinks I am just not detoxing properly. I did have one dr along the way, who works with EDS patients, who mentioned MCAS and she tested histamine, but it was not elevated. Which this dr said was not unusual; it's hard to diagnose definitively. She said I could do a trial of allergy meds, but I didn't take any b/c it seemed so undetermined, and I was afraid to take the allergy meds if we weren't sure... vicious cycle.

My issues with medications and supplements aren't usually typical "allergic" responses- they usually cause worsened insomnia, depression, feeling "out of body", increased flu-like feelings; they often worsen my ME symptoms, or the very symptoms they are meant to help. I have terrible problems with insomnia and I get really scared at the idea of being awake for weeks at a time... especially after a surgery.

I'm not very knowledgeable about MCAS, but could the symptoms I listed above be considered MCAS symptoms? I just assumed the sensitivity was another "unexplained and little understood" symptom of ME.

If it is determined I would benefit from the surgery, perhaps a trial of allergy meds before-hand would be beneficial, to have in case needed.

When you say Dr B etc are accustomed to working with patients with these issues, do you mean they will listen and adjust and try new meds as needed? That is comforting, to know that they are familiar with this and will accommodate it.

One more question, is your MCAS better after surgery?

Thank you for your help!

 

[frozenborderline]

Hi Cort. Well, there is dr. Bolognese, of course. Other than that, I think most people go to NUCCA chiropractors, if I am not mistaken. If you google "upper cervical" or "NUCCA" chiropractors, you will get a list of them

NUCCA chiropractors cannot Be relies on to diagnlse cci. They missed my cci entirely. It’s not their area of specialization and I doubt any of them look at The measurements

 

[Daffodil]

I just wanted to say - and words just do not suffice - how sorry I am about this. It is just so upsetting that people can not get the medical care they need and keeping you in my thoughts and prayers for a solution.

aww thank you sadly i am sure there are millions like me

 

[Daffodil]

NUCCA chiropractors cannot Be relies on to diagnlse cci. They missed my cci entirely. It’s not their area of specialization and I doubt any of them look at The measurements

thats surprising. i thought looking at those measurements is exactly what they do. my NUCCA doc was all over it

 

[Daffodil]

i wanted to add that i also asked dr. G exactly what it is that the eds-literate surgeons do that is different. i have never really understood that, despite asking several people. i thought he would say that it is a difference of technique - and maybe it is - but he said that it is because eds and me/cfs people have so many other issues (mcas etc) that things could get complicated. he says he has a team of people who know how to handle complex patients

 

[StarChild56]

This was very helpful, thank you! I'm so glad you did okay with the meds and your surgery went well!

I am really glad that it was helpful and thank you very much.

I did have one dr along the way, who works with EDS patients, who mentioned MCAS and she tested histamine, but it was not elevated.

My histamine has been high only once, but there are other blood test markers for testing MCAS, fyi...I can never remember all of them but tryptase is one (which was only high once, too) - prostaglandins D2 (sp?), another prostaglandins, Chromagranin A (I believe but may be mistaken) and at least one other. Those are the ones I notice my specialist tests sort of regularly. The diagnosis is based upon the blood tests and history/symptoms, in my case and also response to the meds (and by far, I take the most MCAS meds out of all of my conditions).

She said I could do a trial of allergy meds, but I didn't take any b/c it seemed so undetermined, and I was afraid to take the allergy meds if we weren't sure... vicious cycle.

I can totally understand your feeling.

My issues with medications and supplements aren't usually typical "allergic" responses- they usually cause worsened insomnia, depression, feeling "out of body", increased flu-like feelings; they often worsen my ME symptoms, or the very symptoms they are meant to help. I have terrible problems with insomnia and I get really scared at the idea of being awake for weeks at a time... especially after a surgery.

I can totally understand how that could be very scary and after surgery you need your sleep! My guess would be and I could be wrong, but after surgery along with the pain meds that are IV, it would help you sleep. Also, someone else told me this....maybe it was @jeff_w - that sometimes we are able to tolerate non oral pain meds even though orally we had problems - and I had no problems with the IV meds, and then the fentynal patch. So that is also something to consider. Although, after the first few days they took away the thing I would push to have more pain meds in my IV. So I was still receiving the pain meds via IV but couldn't up the dose at will - and then they supllemented with oral pain meds. Which I am doing okay on.
My bad reactions were more typical allergy type - a lot of itching! Which means it can go to anaphalaxis quickly.

I'm not very knowledgeable about MCAS, but could the symptoms I listed above be considered MCAS symptoms? I just assumed the sensitivity was another "unexplained and little understood" symptom of ME.

I wish I could answer this for you, but I am afraid I do not know. Though, I think that everyone is so different and I would certainly not rule it out. I would say it could be a MCAS reaction...but do you ever get flushing, or itchy, or hives...also gastrointestinal problems - MCAS can cause bad ones. So that is another symptom that maybe doesn't seem like a fit but is fact one.
I just wouldn't rule it out without having more testing done, in case it is MCAS and you could get some relief.

If it is determined I would benefit from the surgery, perhaps a trial of allergy meds before-hand would be beneficial, to have in case needed.

Definitely absolutely!

When you say Dr B etc are accustomed to working with patients with these issues, do you mean they will listen and adjust and try new meds as needed? That is comforting, to know that they are familiar with this and will accommodate it.

Absolutley!
For my MCAS issues, Dr. B also deferred to my specialist but yes. Also, they let Dr. B's patients bring their own meds/supplements/OTC (that were ordered by your doctor) and they log them in their system - they give you the meds according to how you are supposed to take them, using any they have in the hospital pharmacy or if they do not carry it, use your own stash. That was a critical thing for me, especially when one night I was having some issues and was very swollen, red, and Dr. B thought I might be having a MCAS reaction and I took a bunch of my MCAS meds that were in the room with me (which they do not like you to do but it was a possible emergency for me - and it was late at night, me, Dr. B and Dr. K were emailing about what happened). The floor I was on is where Dr. B's patients always go and the staff were accostomed to us being different than any other patients and that was so very helpful.

One more question, is your MCAS better after surgery?

I am post op 4 weeks and I do not notice any difference. However, after this invasive surgery I was expecting everything to be worse for a while as you know....it was so invasive! And while I do have pain I did not have before due to surgery I don't think anything has worsened.

Also - this may or may not have anything to do with it but I also have asthma and severe environmental allergies - preceeding my MCAS (or who knows...chicken before the egg perhaps). So that may make my MCAS a little more complicated in some ways or more difficult to tease apart symptoms. Maybe.

It is my pleasure if anything I've experienced and shared can be of any value to anyone. I am so grateful I found this board, and for learning all about all these things I'd never heard of that probably saved my life.

 

[valentinelynx]

@valentinelynx lol thanks, i know all that. i am just really desperate is all

I was just answering @debored13 's question, being a sucker for things to Google. I do understand desperation. Hopefully, if you were to find someone to marry from the US, the love would bloom! Don't be surprised, though, if he decides he wants to escape to Canada!

 

[valentinelynx]

Hi Cort. Well, there is dr. Bolognese, of course. Other than that, I think most people go to NUCCA chiropractors, if I am not mistaken. If you google "upper cervical" or "NUCCA" chiropractors, you will get a list of them

I'm concerned about the recommendation of NUCCA chiropractors as diagnosticians for CCI. First of all, they are not concerned with CCI per se, so much as something they refer to as, "minor and pain-free atlas subluxations" that they believe cause brainstem ischemia. Admittedly, the reference to the brainstem makes it sound similar, but I don't think the problems associated with CCI can be attributed primarily to ischemia. In any case, the methods used by these chiropractors to diagnose this "atlas subluxation" (which is not a description of CCI) include:

• A supine leg-length check that reveals disparities in leg length when the head is turned left or right.
• Use of thermography or infrared thermocouple devices to measure skin temperature over the cervical spine.
• A postural analysis using the “NUCCA Anatometer” that requires standing on a platform apparatus that measures postural imbalance, pelvic distortion, head tilt, and unequal right and left leg weight bearing.
• Three x-ray views of the atlas-axis area.
• Use of a protractor to measure atlas alignment.

Note this does not include an MRI or a CT scan. CCI cannot be seen on X-ray.

Some publications suggested possible benefit from NUCCA adjustment, specifically a pilot study suggesting improved blood pressure and a migraine pilot study. The follow-up study on hypertension, however, did not show any difference between sham and NUCCA. The migraine pilot study (on only 11 subjects) showed no effect on "blood flow to the skull base" (the primary outcome measure) but some brief trends in decreased headache frequency and intensity (which they admit may have been the result of changes in the subjects's medications!). This was not a controlled study, all subjects received the intervention. It's amazing to me the volume of words used in this tiny pilot study with insignificant results (it's 18 pages!).

Bottom line: NUCCA's "atlax subluxation" is not the same as a diagnosis of CCI. I'm sure it would be possible for a chiropractor (or anyone) to learn to read MRIs for the signs of CCI, but this is not the province of the average NUCCA chiropractor. And, I had CCI (which I very well may) I wouldn't want a chiropractor to mess with the base of my skull.

 

[Daffodil]

I was just answering @debored13 's question, being a sucker for things to Google. I do understand desperation. Hopefully, if you were to find someone to marry from the US, the love would bloom! Don't be surprised, though, if he decides he wants to escape to Canada!

haha. on a very morbid note, i did meet someone long ago with the same illness, at a doctor's office. we had spoken about this. but a year later, he became a mass murderer

 

[Daffodil]

I'm concerned about the recommendation of NUCCA chiropractors as diagnosticians for CCI. First of all, they are not concerned with CCI per se, so much as something they refer to as, "minor and pain-free atlas subluxations" that they believe cause brainstem ischemia. Admittedly, the reference to the brainstem makes it sound similar, but I don't think the problems associated with CCI can be attributed primarily to ischemia. In any case, the methods used by these chiropractors to diagnose this "atlas subluxation" (which is not a description of CCI) include:

• A supine leg-length check that reveals disparities in leg length when the head is turned left or right.
• Use of thermography or infrared thermocouple devices to measure skin temperature over the cervical spine.
• A postural analysis using the “NUCCA Anatometer” that requires standing on a platform apparatus that measures postural imbalance, pelvic distortion, head tilt, and unequal right and left leg weight bearing.
• Three x-ray views of the atlas-axis area.
• Use of a protractor to measure atlas alignment.

Note this does not include an MRI or a CT scan. CCI cannot be seen on X-ray.

Some publications suggested possible benefit from NUCCA adjustment, specifically a pilot study suggesting improved blood pressure and a migraine pilot study. The follow-up study on hypertension, however, did not show any difference between sham and NUCCA. The migraine pilot study (on only 11 subjects) showed no effect on "blood flow to the skull base" (the primary outcome measure) but some brief trends in decreased headache frequency and intensity (which they admit may have been the result of changes in the subjects's medications!). This was not a controlled study, all subjects received the intervention. It's amazing to me the volume of words used in this tiny pilot study with insignificant results (it's 18 pages!).

Bottom line: NUCCA's "atlax subluxation" is not the same as a diagnosis of CCI. I'm sure it would be possible for a chiropractor (or anyone) to learn to read MRIs for the signs of CCI, but this is not the province of the average NUCCA chiropractor. And, I had CCI (which I very well may) I wouldn't want a chiropractor to mess with the base of my skull.

you are probably right. it just so happens my local NUCCA doc was very knowledgeable and had even published on CCI/AAI. he had the only DMX machine around here so was very helpful in assessing me. i should not have assumed others would be the same, since i have not tried them.

i will say that if you find a chiro with a DMX machine and stick to your guns about not wanting atlas orthogonal or other manipulation techniques, etc, it might be worthwhile to try to see them just for the assessment

 

[Daffodil]

Question: When I spoke to Dr G and brought up the fact that I have no numbness or headaches or upper body symptoms other than severe brain fog and fatigue, he recommended i get a cervical venogram. Maybe he thinks i am just not getting enough blood flow to the brain...

It looks like this involves a catheter and looks rather complicated....not just regular imaging. Has anyone done this?

Thanks

 

[Daffodil]

I think that a good portion of our symptoms could still be coming from our gut because I was at death's door before years of antibiotics helped me somewhat. I now believe the digestive issues began due to brain stem compression....but over time, the worsening leaky gut is what made this illness a real nightmare.

 

[Daffodil]

so after some more googling, it seems that a venogram involves dye and fluoroscopy - which i think is a motion x-ray similar to a DMX? i guess its just one more thing they dont do in canada

i wonder if i should get one before the stem cells or not. it would be great for comparison purposes....but also one more big expense and not too useful for now since i am not having surgery



EDIT: ok now it looks like it might indeed involve a catheter...because it says angiograms are similiar...and cardiac angiography involves a catheter inserted into the veins.....

?

 

[Sushi]

I did a Gene Sight test that showed whether or not I should take some drugs based on my genes. But I tried some on the "Green" list, and still had bad reactions. Would you mind sharing with me the pharmacogenetics test you used?

My Doctor ordered a test from Asperio Laboratories that has been very helpful.

 

[Cort]

Hi Cort. Well, there is dr. Bolognese, of course. Other than that, I think most people go to NUCCA chiropractors, if I am not mistaken. If you google "upper cervical" or "NUCCA" chiropractors, you will get a list of them

Thanks! And thanks for others who added a lot to the NUCCA chiropracter issue.

 

[Mere72]

I would say it could be a MCAS reaction...but do you ever get flushing, or itchy, or hives...also gastrointestinal problems - MCAS can cause bad ones.

I don't get itchy. I do get a "burning skin" sensation (and in inner ears), sometimes with hormone changes and sometimes just randomly. It also alerts me that I'm "overdone". I first noticed that burning skin sensation when I started Lyrica, many years ago (before ME diagnosis), and subsequent meds after that. I recently started getting not hives, but a reddish striped rash from the sun. GI problems come and go. As with all of my symptoms, there isn't much method to the madness. For a few things I can see some cause and effect, but usually once I think I have determined some kind of cause and effect, it changes

If surgery ends up being on the table, I will look into the further MCAS testing that you mentioned, prior to it.