Damaged by drugs

[Mary]

@Gingergrrl - I think the impedance cardiography devices have been changed. They used to be called BioZ machines by CardioDynamics. CardioDynamics was acquired by something called SonoSite, and here is a link to SonoSite's website: https://www.sonosite.com/about/pres...diodynamics-cardiovascular-disease-management
SonoSite has a product called Cardio Profile which looks like an updated IC machine: https://www.sonosite.com/content/cardio-profile-0

Several years ago you could call CardioDynamics to find the names of practitioners who had their IC machines (and it was widely available at that time), so if you call SonoSite, hopefully they can provide you with the names of practitioners who use their product. Amazing how quickly the latest technology has gotten old!

 

[justy]

Justy, did you take any drugs prior to being ill? Can you think of any reason that your brain may be so susceptible?

I took anti depressants for a year or so a while back - but that was AFTER having my first 'M.E' symptoms over20 years ago. I do have some nasty chronic bacterial infections - Neurological Lyme, Bartenollosis, and chlamydia pneumonia - all three can infect the brain and my M.E Dr believes they have. On the other hand I see a LOT of people with mast cell disorders struggling with strange reactions to meds - not just classic allergic reactions.

@justy Did you ever have an MCAS reaction prior to taking Doxycycline?

No, not as far as I know. The Doxy triggered the itching etc. However I did have a three month episode of severe breathing problems and extreme heightened sense of smell leading up to this, which my allergy Dr felt could have been mast cell related as the asthma Dr could find no reason for it. I have also had MCS most of my life and do have some true IGE allergies and lifelong asthma.

I guess the point I was trying to make was that I believe, in most cases, drugs are not a real solution, regardless of whether someone can metabolize them or not - drugs don't address or resolve underlying issues, which I believe for the most part are nutritional in basis.

Of course you need to be able to take drugs for lots of things. I cant take antibiotics of any kind at the moment so if I get a lifethreatening infection that would be a bummer. I also have three chronic bacterial infections that I cant treat - I also don't tolerate herbs - they are often less well tolerated by people with MCAS that drugs.

 

[Mary]

@justy - the main exception I did think about re drugs was antibiotics. You're right - they can be lifesaving. I was thinking more in terms of cholesterol meds, BP meds (yes, if your blood pressure is sky high you might need meds, but I think there are ways to deal with high BP which aren't utilized), prescription ADs, and so on. And you're right about herbs - they can be very powerful and people need to be educated in taking them, and they're often not well tolerated.

But I strongly believe that we are way over-medicated in general as a society, and neither patients nor doctors are very knowledgeable about "side" (actual) effects of drugs. There's so much damage done by so many drugs.

If drug money research was instead devoted to finding out how our bodies actually work and what they need to be healthy, I think we'd be a lot better off. We might find actual causes of things like RA and MS and MCAS and so on, instead of just developing often very toxic drugs (like for RA) to manage symptoms.

 

[Gingergrrl]

No, not as far as I know. The Doxy triggered the itching etc. However I did have a three month episode of severe breathing problems and extreme heightened sense of smell leading up to this, which my allergy Dr felt could have been mast cell related as the asthma Dr could find no reason for it. I have also had MCS most of my life and do have some true IGE allergies and lifelong asthma.

@justy Thanks for explaining and I had thought that you already had MCAS prior to taking the Doxy. Does your MCAS doc think that the Doxy could have been what pushed your immune system into having MCAS? It is making me wonder more if the Valcyte is what pushed my immune system to MCAS b/c I also did not have it before. Although in my case I was being exposed to high amounts of toxic mold at the same time so it would be hard to separate the two as triggers.

But prior to these two triggers, I did not have MCAS or MCS (but I have had bizarre reactions to tiny amounts of meds for many years and especially after my horrible Levaquin reaction.) I had zero food allergies prior to MCAS but was deathly allergic to cats. I don't have asthma or any obstructive lung issue but have a confirmed restrictive lung pattern- we just don't know why yet.

With each post and thing I read, I am trying to unravel this whole mystery. Did your doc think your MCAS was secondary and could eventually be reversed?

 

[justy]

Doxy. Does your MCAS doc think that the Doxy could have been what pushed your immune system into having MCAS?

Yes - but only because of the underlying infections. The theory is that for some people who have long term infections that go untreated/undiagnosed the immune system becomes hyper sensitive. Then anything that causes die off such as antibiotics or herbs or any other treatment can cause even more debris for the immune system to deal with - as it is already overwhelmed then the mast cells can become overactive - and as you know the more they get triggered the wrose it is and the harder it is to get them back under control.

Did your doc think your MCAS was secondary and could eventually be reversed?

Yes he did! He was very positive about this, BUT only if I can treat the underlying infections that are unbalancing the immune system in the first place. He acknowledged that once you have MCAS this can be very difficult to do without triggering a worsening of the MCAS. I explained that I couldn't now take antibiotics to cure the lyme and he admitted it wad a vicious circle that was hard to break, but that the mast cells would, theoretically quieten down again once I got rid of the underlying issue.

Its hard to know what to make of this - hard to feel optimistic about it as treatment is painfully slow and my attempts keep disrupting the mast cells further. Am just trialling Ketotifen in an attempt to control the itching, but even a 1/4 of 1mg tab knocks me out (and the first night reduced itching, but not last night). I have drugs and supplements from my M.E Dr still waiting to be trialled but cant even get on all the MCAS meds yet.

Fexofenadine was a disaster as it caused severe depression and the neuroprotek I may try again, but 1 tab a day caused agitation tht was unpleasant, and I worried about its effects on the other drugs I have to take as it warns about this in the literature, nonspecifically 9something to do with liver detox pathways).

In a way, perhaps it doesn't matter what specifically caused our MCAS to be triggered - the fact is that underlying infections cause the immune system to get trigger happy (including mold, viruses, bacteria) and until we treat them , if we can treat them, it wont get better.

I also just found out I have a number of unpleasant gut bugs showing up in the blood stream so definitely have leaky gut....am sure this also could be at the bottom pof this MCAS issue - treating the gut we are told is major and I am beginning to see the sense in this. How to do that when you have MCAS is also hard - most healing foods are fermented and most probiotics are a no go area for us. I will talk to KDM about this next month - my diet is quite restrictied already but I haven't been good about sugar and gluten so looks like its going to get worse - but then I worry I am not getting enough nutrients.

 

[bertiedog]

Just reading up on POTS and found a website that states that SSRI and SNRI meds affect the central regulation of heart rate and blood pressure.

Both these type of drugs are highly recommended for Fibromyalgia sufferers. I often wonder how many of them have POTS but of course never tested for this on our NHS. I run the local Fibre support group and regularly get speakers who specialise in this condition to come and talk to us and the recommendation for these drugs comes up regularly.

I don't have Fibre but ME/CFS/Lyme but do suffer with severe muscle problems especially if I don't rest enough but I have never taken any of these drugs but manage my POTS with a low dose beta blocker, sea salt and occasional Fludrocortisone but the majority of our members would never question a doctor's decision unlike me!

Pam

 

[Gingergrrl]

@justy

Yes - but only because of the underlying infections. The theory is that for some people who have long term infections that go untreated/undiagnosed the immune system becomes hyper sensitive. Then anything that causes die off such as antibiotics or herbs or any other treatment can cause even more debris for the immune system to deal with - as it is already overwhelmed then the mast cells can become overactive - and as you know the more they get triggered the worse it is and the harder it is to get them back under control.

Thanks for your detailed reply and I have heard lots of theories on MCAS and am trying to figure out what happened in my case (as much as it is possible.) I see my MCAS doc on Thurs for my next follow-up appt and plan to ask him about this if there is time- I always have so many other questions!

I had blood histamine 3x the normal level the month before I ever tried the Valcyte so it was already brewing and I suspect stirring up the viruses with the Valcyte plus the severe toxic mold pushed my immune system over the edge. But I will never know for sure.

Yes he did! He was very positive about this, BUT only if I can treat the underlying infections that are unbalancing the immune system in the first place. He acknowledged that once you have MCAS this can be very difficult to do without triggering a worsening of the MCAS. I explained that I couldn't now take antibiotics to cure the lyme and he admitted it wad a vicious circle that was hard to break, but that the mast cells would, theoretically quieten down again once I got rid of the underlying issue.

In my case even though I still had high titers to several viruses back in May (no idea what they are now), the first anti-viral did not work and I did not tolerate the second one at all. So no clue even how to treat it or if going this route would matter (in my case.) Am treating the mold at tiny levels that I can tolerate but like you, I cannot tolerate any of the main mold binders due to MCAS. But I do tolerate the nebulized and transdermal glutathione very well.

Its hard to know what to make of this - hard to feel optimistic about it as treatment is painfully slow and my attempts keep disrupting the mast cells further. Am just trialling Ketotifen in an attempt to control the itching, but even a 1/4 of 1mg tab knocks me out (and the first night reduced itching, but not last night). I have drugs and supplements from my M.E Dr still waiting to be trialled but cant even get on all the MCAS meds yet.

I actually do not have any itching and my reactions were stage two anaphylaxis to food. They are well-controlled now with 5-6 pre-food meds (30-60 min before eating) and low histamine diet but it is so restrictive and I wish I could have more freedom with eating. Ketotefin is actually what turned it around for me and I take 2 mg 2x/day.

Fexofenadine was a disaster as it caused severe depression and the neuroprotek I may try again, but 1 tab a day caused agitation tht was unpleasant, and I worried about its effects on the other drugs I have to take as it warns about this in the literature, nonspecifically something to do with liver detox pathways).

I think Fexofenadine is Allegra in the US and I tried that back in May when I was severely affected and it did nothing and was like a sugar pill. The only thing back then that finally worked was IV Benadryl until I found the Ketotefin. Neuro Protek has been great for me with no side effects but I have had endless meds at low doses cause me agitation so I totally relate.

In a way, perhaps it doesn't matter what specifically caused our MCAS to be triggered - the fact is that underlying infections cause the immune system to get trigger happy (including mold, viruses, bacteria) and until we treat them , if we can treat them, it wont get better.

I am hoping that being away from the mold and doing the glutathione will help to tamp down the MCAS and it seems to already be doing that (but it's had no effect on my autonomic or breathing issues.)

I also just found out I have a number of unpleasant gut bugs showing up in the blood stream so definitely have leaky gut....am sure this also could be at the bottom pof this MCAS issue - treating the gut we are told is major and I am beginning to see the sense in this.

What test did you have for that? The only one I have been offered is the SIBO test and it was negative. I am using oats and apple pectin as a mold binder and hoping it will help my gut. I briefly tried potato starch as a pre-biotic but stopped it b/c I didn't notice anything from it (good or bad.)

How to do that when you have MCAS is also hard - most healing foods are fermented and most probiotics are a no go area for us. I will talk to KDM about this next month - my diet is quite restrictied already but I haven't been good about sugar and gluten so looks like its going to get worse - but then I worry I am not getting enough nutrients.

Am very curious what you learn and I cannot eat any fermented foods either. Thanks again!

 

[Strawberry]

@Gingergrrl Can I ask what your symptoms/reactions were that makes you think the Valcyte could have been a trigger? Dr Kaufman suspects MCAS in me (and I have suspected I have had it mildly for two decades in the least), and am supposed to be starting Valcyte any day here.

Please PM me if you aren't comfortable answering here, although I am asking here just in case anyone else feels the same and can add insight.

FWIW I could live off fermented foods. Crazy!

 

[Gingergrrl]

@Strawberry I can answer here but want to clarify that what I am saying only pertains to me and is only speculation that I cannot prove.

The reason I suspect that Valcyte is a possible trigger of my MCAS is that it is a potent immune modulator (separate from it's anti-viral function.) I was taking low doses that were far too low to serve as an anti-viral so it was functioning as an immune modulator. I had horrific side effects including akathisia so we kept stopping and starting it at different doses which all had an effect on my immune system.

I did not have MCAS prior to taking Valcyte and I think it shifted my immune system from Th1 to Th2 but so far into Th2 and it triggered the MCAS. I was never positive for HHV-6 or CMV (but am IgM positive for EBV, VZV, HSV 1&2, and two enteroviruses.) I deeply regret trying Valcyte but I know it has helped many people and I would never discourage anyone else from trying it.

The other variable is that I was breathing in toxic black mold (and 19 kinds of mold/mycotoxins) in former rental and I suspect my immune system could no longer fight the mold and it also pushed it toward MCAS since mold is a trigger of histamine. So if I had to guess why did it happen at that particular time (44 years of no MCAS and then sudden severe MCAS that nearly killed me) I would guess it was a combination of the Valcyte and the mold. But I cannot prove this and lack the science to explain it any better than this theory.

I also tested 3x higher than normal on histamine blood test the month before I tried Valcyte so it was smoldering under the surface but I suspect the Valcyte was the thing that pushed my immune system to activate it at that time. But maybe something else would have activated it anyway, I really do not know.

 

[justy]

What test did you have for that?

I had a test done at REDLABS in Belgium on blood looking for IGA/IGM against intestinal bacteria:

Bacterial immunobilan
The immunobilan test is an antibody screening assay (IgA and IgM) directed against antigens from intestinal pathogens. IgA are secreted from intestinal cells, IgM are produced by immune cells in the blood. In healthy individuals, pathogenic bacteria are only found in low quantities in the gut and antibody titers in the blood are very low. However, in case of bacterial overgrowth, large quantities of lgA are produced and some of it will be found in the bloodstream. In case of "leaky gut" , bacterial proteins may make their way into the bloodstream and specific IgM will be produced. Therefore, hight titers of IgM for intestinal bacteria is an indicator of increased intestinal permeability. All immunobilan bacteria are strictly associated with the gut, with exception of Klebsiella which is also associated with respiratory and urinary tract infections.

I tested highly IGM positive for 7 different bacteria.

FWIW I could live off fermented foods. Crazy!

Most people with MCAS can't tolerate any fermented foods as they greatly increase histamine. Are you on any Meds for the MCAS? From my experience with it so far, I personally wouldn't want to start any drugs, especially those that kill things or modulate the immune system without being certain and starting treatment of some sort for the MCAS - you wouldn't want it to kick off big time!

 

[Gingergrrl]

I had a test done at REDLABS in Belgium on blood looking for IGA/IGM against intestinal bacteria:

I tested highly IGM positive for 7 different bacteria.

@justy, Do you know if a test like this can be done in the US or what it might be called here?

Most people with MCAS can't tolerate any fermented foods as they greatly increase histamine. Are you on any Meds for the MCAS? From my experience with it so far, I personally wouldn't want to start any drugs, especially those that kill things or modulate the immune system without being certain and starting treatment of some sort for the MCAS - you wouldn't want it to kick off big time!

I agree with you and fermented foods are off the charts level of histamine and I've never heard of someone with MCAS tolerating them. Am not doubting @Strawberry at all but if you suspect you have MCAS and it is not being treated, I would not start a treatment involving an immune modulator. I wish that I had known this all in hindsight but I didn't.

 

[justy]

Sorry, no idea - can you tell your Dr about the test and ask if this kind of test is possible - you could say KDM uses it in Europe, they may have an idea. Not sure how i'm going to treat it though - going to start on my first trial of antibitoics since the MCAS kicked off - but its a gut one that doesn't become systemic - although if your gut is leaking maybe some of it gets through??!! Well, we will see...

 

[Strawberry]

Thank you both! It is very possible that MCAS has been written off from the tests that have been ran so far. The only thing I am on is Zyrtec twice daily and Zantac twice daily. He said that how I reacted to those would help pinpoint whether or not I have MCAS, and quite honestly, adding the Zantac and doubling up on Zyrtec I feel exactly the same as when I took one Zyrtec per day. I forgot to ask about MCAS at the follow up.

Also, I just noticed that my notes say Valtrex, not Valcyte...

Anyway, thank you Gingergrrl for your experience, I will keep that in mind!

 

[Gingergrrl]

Sorry, no idea - can you tell your Dr about the test and ask if this kind of test is possible - you could say KDM uses it in Europe, they may have an idea. Not sure how i'm going to treat it though - going to start on my first trial of antibitoics since the MCAS kicked off - but its a gut one that doesn't become systemic - although if your gut is leaking maybe some of it gets through??!! Well, we will see...

@justy Thank you and I am not even sure which doc to ask! Good luck with your next antibiotic trial and thinking good thoughts for you.

Thank you both! It is very possible that MCAS has been written off from the tests that have been ran so far. The only thing I am on is Zyrtec twice daily and Zantac twice daily. He said that how I reacted to those would help pinpoint whether or not I have MCAS, and quite honestly, adding the Zantac and doubling up on Zyrtec I feel exactly the same as when I took one Zyrtec per day. I forgot to ask about MCAS at the follow up.

Also, I just noticed that my notes say Valtrex, not Valcyte... Anyway, thank you Gingergrrl for your experience, I will keep that in mind!

@Strawberry Have you seen your histamine or tryptase test results? If they are normal and you have no symptoms (and you would know if you did!) then am not sure why you are taking Zyrtec & Zantac 2x/day? I would ask the doc at your next follow-up. Zantac and H2 blockers did nothing for me and it was only H1 blockers and mast cell stabilizers that helped me. Also, if you are talking about Valtrex and not Valcyte then nothing I said above applies.

 

[Research 1st]

For anyone puzzled in being unable to catch a histamine reaction, e.g. you get a 'normal' result when sending blood off to a lab when you know you've had an allergy attack to something involving a possible or probable elevated histamine reaction, that's because you usually have to have it tested within 60 mins or so from a reaction (Half life is around 30 mins I think).

In other words, unless you run chronically high histamine or have some kind of extreme reaction tested in a hospital ER, it's practically impossible to catch it for allergy, unless you have a reaction in a hospital.

So that explains if you're sick and by chance you have a urine test or a blood sample sent off, but it comes back totally normal, that's why. nb: A normal histamine result doesn't guarantee you did have high histamine, but it makes testing for it out in the community away from hospitals, very tricky, so it can't be ruled out so quickly as it seems.

 

[Gingergrrl]

@Research 1st I totally agree with you and that's why my doctor was stunned when my histamine blood test was 3x the normal limit back in Dec 2014. He said even when they use Quest labs and freeze the sample and it gets to the lab perfectly, he usually gets a negative result on all MCAS tests.

My MCAS doc also caught the histamine and prostaglandins on testing and they were abnormal but they were lower by that point b/c I was on a massive amount of meds versus none for the first test.

But the MCAS docs use the entire clinical picture even in the absence of testing. So if someone has major clinical symptoms for MCAS and negative tests, it would be safe to assume they have MCAS and would be put on a low histamine diet along with some combo of H1 & H2 blockers and mast cell stabilizers and usually prescribed an EpiPen and other rescue meds.

 

[Gingergrrl]

@Gingergrrl - I think the impedance cardiography devices have been changed. They used to be called BioZ machines by CardioDynamics. CardioDynamics was acquired by something called SonoSite, and here is a link to SonoSite's website: https://www.sonosite.com/about/pres...diodynamics-cardiovascular-disease-management
SonoSite has a product called Cardio Profile which looks like an updated IC machine: https://www.sonosite.com/content/cardio-profile-0

Several years ago you could call CardioDynamics to find the names of practitioners who had their IC machines (and it was widely available at that time), so if you call SonoSite, hopefully they can provide you with the names of practitioners who use their product. Amazing how quickly the latest technology has gotten old!

@Mary Thank you for all of your help with this and as far as I can tell, these machines are no longer in existence. The Sonosite people do not return calls (I first tried in 2014!) so I just sent them an e-mail as my final attempt. I know you and I discussed this but am posting in case the info is helpful for anyone else. I have no idea if the machines are available in other parts of the country but do not seem to be in my area which is a bummer.

 

[RoyJones]

Thought I would reignite this old thread. I have been seriously damaged by amitriptyline, it has completely diminished my mental function and can barely initiate a thought anymore, feel completely brain dead, like my brain is paralysed, also it has left me feeling absouloutley no emotions and suicidal, my muscles feel so weak and struggling to get through each day, in complete despair because of it all. If only I could alleviate the brain fog a little and create some mental energy it would make my life worth living. Anyone have any suggestions? Does replenishing glutathione help severe cognitive impairment? Also I've lost all my panic reaction since this drug and thinking maybe I'm low in cortisol. Getting a saliva test done soon. I'm getting to impaired to even do my own research. Also have an NHS nurse coming out soon to test my hormones. Would raising cortisol give more mental energy or am I just going to have to be resigned to the fact this is brain damage? Any suggestions would be much appreciated as if I don't start to improve in the next few weeks I'm really going to have to end it all. I can just about look after myself but can't even watch the tv or listen to the radio it's that bad, feel completely brain dead, can't generate any kind of mental energy whatsoever, stuggling to write this.

 

[Gingergrrl]

I have been seriously damaged by amitriptyline, it has completely diminished my mental function and can barely initiate a thought anymore, feel completely brain dead, like my brain is paralysed, also it has left me feeling absouloutley no emotions and suicidal, my muscles feel so weak and struggling to get through each day, in complete despair because of it all. If only I could alleviate the brain fog a little and create some mental energy it would make my life worth living. Anyone have any suggestions?

I am so sorry to hear this and am glad you revived this old thread and are reaching out for help. Anti-depressants (even if you were taking it for another reason) can take 4-6 weeks to reach full level in bloodstream so I would honestly give it 4-6 weeks for this bad reaction to start to dissipate. How long has it been since you stopped taking it?

Also I've lost all my panic reaction since this drug and thinking maybe I'm low in cortisol. Getting a saliva test done soon.

I think the saliva test is a great idea and is more accurate than the blood test b/c it measures your cortisol level at four different points in the day (vs. the blood test just measures that one moment). So if blood test done in the morning it might be okay yet the 6 pm test or the midnight test might totally off.

Any suggestions would be much appreciated as if I don't start to improve in the next few weeks I'm really going to have to end it all.

My first suggestion is just to wait and give it some time for the amitriptyline to get out of your system before making any big decisions. Do you have any support from family or friends and is there anything that has helped you to cope when you felt this bad in the past? I know you said you cannot listen to music/TV but is there anything calming or distracting that you can do?

I don't want to give suggestions b/c they are so unique to each person what is tolerable (let alone what is helpful) but have you ever used any grounding techniques? They are usually divided into types of grounding (physical, mental, calming/soothing, spiritual, etc). Last, would talking to a therapist help? And I mean a real therapist, not one with an agenda of any kind.

 

[RoyJones]

Thanks for replying @Gingergrrl. I was taking it for insomnia for about 6 weeks with no bad side effects and then a massive adverse reaction to it and discontinued. Felt like I'd been poisoned by something radioactive and was in a waking coma for the next four months and kept waking up paralysed, it's only in the last month I feel it has got out of my system as the poisoned feeling has gone but I'm left severley cognitively impaired with severe depression that I didn't even have to begin with. I'm not giving up yet. I've got all the know protracted withdrawal symptoms and they are obviously amplified by having M.E and it's only been a month but from everything I've read it looks like I could be in for the long haul with this before it starts to get better.

I just want to do everything I can to try and get some brain function back. Never been anywhere near this bad in the past, I've been in all kinds of horrible bedridden crashes and this is 1000 times worse than anything having amitriptyline withdrawal and severe M.E. I feel like a completely different person as well as being impaired physically and mentally. I feel so vegetated from it I feel constantly grounded, get no feelings of adrenalin or anything. I can read and type but it's very hard work and cannot process anything unless it's very simple, just try to read as much as I can to take my mind of it only the withdrawal has left me with severe anhedonia and can't get into anything. Don't think a therapist is going to help me much as I feel I'm dealing with a damaged nervous system and just need to do what I can to try and repair it. I've got to crash out now, thanks again for your reply.