Medication prior to onset of ME

[xrayspex]

Find a way to see the film "The Big Short" it is so brilliant at shining light on how institutions do not have our best interest at heart, to say the least, played out not in medical system but financials...so many parallels

 

[xrayspex]

I had been on oral contraceptives until I developed a Pulmonary Embolism; was put on blood thinners and Folic Acid, B6 and B12 (cyano-).

Within 3 months was mostly recovered from the PE.

Within 4 months started to struggle with fatigue, chronic unexplained pain, etc.

Took a few years to identify that I had B6 toxicity (which probably started when I started to get ill). And much longer to figure out I didn't tolerate Folic Acid and that my high B12 was probably un-usable for my system before I discovered Methylation and MTHFR defects.

sorry to hear this
yea I have never done well with most b vitamins, havent known why---but interestingly I was taking a mutli B vit back at time prior leading upto my peak poisoning or breaking (general anethesia) and it made me feel sort of hyper and uncomfortable
I was also taking erythomyocin which years later I found out had been found to be bad for a big enough segment of folks they (docs)stopped using it as much, &can cause gall stones

 

[xrayspex]

I had an allergic reaction to two different brands of charcoal at a literal toothpick dose but I suspect this is only b/c I have MCAS and prior to this, I probably could have tolerated the charcoal. My husband and daughter take it with no problems.



How strange b/c I have insane med reactions to micro doses of things and Atarax is one of the best meds I have ever tried. I take 25 mg as a rescue med for MCAS (only a few times per month at present) and it helps me to breathe better and is one of the best meds I have ever tried (and I cannot tolerate Benadryl.) Am only posting b/c I wonder why and what this means.



I have never had a mainstream physician take the slightest interest in this issue. The first doc who ever looked at my SNP's from Genetic Genie and explained why I cannot process certain meds was my mold doctor.

interesting, I often relate to your posts gingergrrl
yea I was hopeful about atarax as on paper it sounded promising for me....who knows why, I hated benadryl tho and would literally need like a crumb of it like 1-3mg to sleep ....I regret using it now as think it really did hurt my brain permanently

 

[slysaint]

This article sort of covers what I'm getting at
http://www.collective-evolution.com/2014/03/17/mitochondrial-diseases/

 

[xrayspex]

This article sort of covers what I'm getting at
http://www.collective-evolution.com/2014/03/17/mitochondrial-diseases/

Slysaint what helps you? I haven't seemed to tolerate conenzyme Q10 well in the past. and just about every amino acid has made me feel awful.

 

[Gingergrrl]

Excellent article @slysaint and sadly I don't really know what it will take for most docs to acknowledge FQ Toxicity Syndrome as real.

 

[xrayspex]

this website looks pretty cool, just exploring it now
I didnt take cipro but I did feel the erythomyocin hurt me way back in the day pre-cfs, I think they more quietly ramped down using it as it was late 80s early 90s whereas cipro getting bad attention
but anyway, there are any number of chemical and external insults I suffered that could play into getting broken, but maybe this site would be good advice to apply to any chemical related injury

http://www.survivingcipro.com/useful-information/three-things-that-worked-for-me/

 

[xrayspex]

I do have a question though for you cipro-effected folks, or anyone who gets the symptom of "brain squeeze" (intercranial pressure) that the author of above cipro site I posted mentioned getting as one of symptoms

that was intriguing to me they get that symptom because I have gotten that feeling, I am pretty sure I go thru periods of intracranial hypertension, usually from certain meds or supplements that were a mistake, and it can be confounded by irritating my head or neck

but I also have a significant neck dysfunction, cervical stenosis, and it can cause a feeling of strangulation or shortness of breath when it gets irritated where I think the position of my neck is mildly, subclinically "choking" me
I have been experiencing that this week after not having had it for a long time (due to dental procedure last week)
I assumed it was my neck getting hurt that is causing that brain squeeze but now I am having to consider it could possibly be due to some of the chemicals maybe the dentist injected? Sometimes it is hard for me to know which is physical structural body flare up and which is a chemically induced flare ( or organic, viral, bacterial etc)

does anyone know how to tell the difference and does anyone who has cipro or other chemical insult damage get the "brain squeeze" the author mentions at the cipro healing site? http://www.survivingcipro.com/useful-information/three-things-that-worked-for-me/

 

[Gingergrrl]

I was poisoned by Levaquin (not Cipro) but the effects are basically the same. I had increased intercranial pressure and ear pressure for about 1.5 years after Levaquin but it finally went away- am not sure why?

 

[Hanna]

In 02/1997 I was diagnosed with amoebiasis and took numerous courses of FLAGYL (to no avail) during the whole year.
My ME/CFS burst in 06/1998.
I don't know if this is linked to the drug or the infection. But I remember Rich saying that flagyl had some very bad effect on mitochondria.

 

[Countrygirl]

Although it was not associated with disease onset, I think it is worth noting that statins can trigger a major exacerbation in ME.

I have hypercholesterolemia and was given a course of statins. It was a disaster! My legs collapsed under me within a short time with the 'fizzing' sensation occurring in my muscles...........to me it feels as if my cells are gasping for oxygen and they feel tremulous................that is an indicator that I have well exceeded my limits. It was definitely caused by the statins, of that I have no doubt. It took about three months for the relapse to subside but then only after I had taken both very high, good quality CoQ10 and carnatine which cost me an arm and a leg, especially as I had a hefty fee to pay to prise my package from the clutches of customs. Then I read that statins blocked CoQ10. I found it interesting that the resultant depletion of CoQ10 produced the same sensation in my muscles as an ME relapse. The moral of the tale is: if you have ME you probably shouldn't take statins.

Another 'medication' to consider is the anecdotal association between certain vaccinations and ME, particularly Hep B and tetanus. There are documents written by Doris Jones on this topic locked away in the so-called secret files.

 

[xrayspex]

Gingergrrl, Countrygirl and Hanna--sorry for what you all went through....it is so confounding that medication is such a crap shoot....it can be life save or the opposite and you don't know til you roll the dice...If I could go back and not take erythomyocin I would.
I once consulted Dr Cheney in 08 and he was very vocal against statins....a friend of mine who is older was really struggling because her husband had taken them upon advice of their trusted physician and developed issues that sound to me like ME....they felt so bad because he had been a scientist and regretted trusting his doctor and not doing his own research ahead of time...but the doc had acted so nonchalant about it that he assumed it was routine and nothing to worry about......its hard for everyone to evaluate every given situation accurately all the time it seems....how could we, so many variations

yea Gingergrrl I have had certain meds trigger intense feelings of hypertension pressure in head---cymbalta was one that did about 8 years ago, I took small really small dose intermittently for month or 2 and then when I stopped it got these terrible headaches that were worse when I laid down which was frustrating since I like to lie down a lot as you can imagine and it lasted like 9 months...same thing with brief trials of proton pump inhibitors and I think lyrica was risky that way too....
I have my bed set up where head is slightly elevated now because I am prone to the head pressure and that is supposed to help offset it some

 

[slysaint]

I did feel the erythomyocin hurt me way back in the day pre-cfs

I had a bad reaction to erythromycin back in the 80's; you should also be wary of that whole macrolide group of anti-biotics.

 

[roller]

Slysaint what helps you? I haven't seemed to tolerate conenzyme Q10 well in the past. and just about every amino acid has made me feel awful.

yes, same here.
how do you explain that?

 

[xrayspex]

yes, same here.
how do you explain that?

thanks Sly

and Roller, I don't know....wish I had a degree in bio chem or something....just sociology which only helps me understand the corruption of larger systems

 

[roller]

i also found no explanation for not tolerating that 'healthy stuff'

 

[xrayspex]

i also found no explanation for not tolerating that 'healthy stuff'

I just figured my body cannot utilize it in synthetic form, I try to get my nutrition thru food as much as possible, like making chicken bone broth soup etc but its frustrating isn't it? all the usual suspects docs recommend for fatigue etc like coq10, magnesium, glutamine, even fish oil, b12....make me feel awful

maybe its why some people feel worse doing Rich Vs methylation thing, it induces some sort of healing crisis
and why some people get tested for Yasko stuff etc, all that mthfr stuff is too over my head ( I always think Mofo! when I see it lol) but I did get tested for detox and genetic p45o stuff and did show I have trouble breaking things down and tolerating things....big surprise

 

[Gingergrrl]

Although it was not associated with disease onset, I think it is worth noting that statins can trigger a major exacerbation in ME.

@Countrygirl Yes, statins are another horrific class of medications that thank God I have never taken. My father-in-law was taking them and they made him very sick until we convinced him to ask his doc for an alternative.

Gingergrrl, Countrygirl and Hanna--sorry for what you all went through....

@xrayspex Thank you and that means a lot and I am sorry for all that you have had to endure as well.

yea Gingergrrl I have had certain meds trigger intense feelings of hypertension pressure in head

Levaquin triggered terrible head and ear pressure and Florinef was a close second. I also had horrible pressure in my head and behind my eyes from IV saline.

I had a bad reaction to erythromycin back in the 80's; you should also be wary of that whole macrolide group of anti-biotics.

Sadly I had tonsillitis my entire childhood (practically every other month) and was constantly on erythromycin or amoxycillin in the 80's. Then I later had an allergic reaction to Augmentin so the whole penicillin class was off the table which is part of why I was given the Levaquin.

I don't know....wish I had a degree in bio chem or something....just sociology which only helps me understand the corruption of larger systems

Me, too. I now wish that I had studied bio chem (even just a little) so I could figure all this stuff out. My masters, license and entire career before I got ill was in social work.

 

[xrayspex]

@ gingergrrl oh yea, the 90s, I tried IV saline, wasn't right thing for me either tho I know some people love it....and florinef was 90s too after that John Hopkins study had tilt table.....just made my heart race unfortunately