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Feeling helpless

S

skyfall

Messages
59
Hi all,

I have posted a few times lately but i just don't have much emotional support. I fell sick about 2 years ago after a miscarriage. I put my weird feelings down to hormones after losing the baby, but the symptoms never went away and just progressed over 2 years. I have symptoms now i didn't have 2 months ago, and after many doctors not working out for numerous reasons, i finally have found a new doctor.

I tested positive on igenex for lyme disease, and i also know i have the Homozygous MTHFR mutation. Most of my symptoms are neurological. I am feeling so down at the moment and my health anxiety seems to be getting worse and worse.

My new doctor prescribed me minocycline and azithro together, but i kept getting head pressure with the minocycline so she told me to stop and just do the azithro for now until we speak again in 4 weeks time. For the past week or so i have been getting burning sensations above my lip, crawling sensations on my face, numbness in my face, my face feeling tight, crawling sensation in my hair, tingling in the back of my head and face. It really scares me and i am terrified of what this disease could do to me.

I have gone without treatment now for 2 years and i am worried i will only go downhill. My doctor thinks i have: lyme, bartonella and babesia. Lab tests also show possibilities of mycoplasma and reactivated EBV. I have never gone to a neurologist as i don't have the money for it. I know some say it is a bad idea but i just wanted to go for piece of mind about a few things. I have seen a lot of what other diseases this disease is linked to, some very scary things too. New symptoms always worry me as i don't know what to pinpoint it down to and if it is temporary, or the start of a different much bigger problem.

I also know that with the MTHFR i have it is incredibly hard for my body to detox, and it is also linked to many other diseases. Sometimes i just feel like i am never going to heal, or i will end up with severe cognitive disabilities, or disabled. I know no one can really say much to change my situation, i guess i am just venting.
 
ahmo

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I'm sorry you're feeling so bad. I guess I'm just responding to your venting. MTHFR itself doesn't have to be your downfall. There's a good piece Methylation for Dummies in my signature. B12 eventually eliminated my neurological symptoms. I guess you're aware of the many Lyme discussions here. I've found coffee enemas invaluable for helping me clear toxins, including those released by antibiotics. Hope you get some good advice here.:hug:
 
Vitalic

Vitalic

Messages
180
@ahmo I'd like to believe the detox methods people go on about actually work but I fear it is mostly placebo. After having been on antibiotics for some time and trying without success various suggestions people have made to me like Burbur, Pinella etc. I have grown intensely skeptical and wonder if this article is not a rather accurate assessment:

https://www.sciencebasedmedicine.org/detox-what-they-dont-want-you-to-know/

"Helped me clear my toxins" sounds like some kind of pseudo-religious spiritual cleansing. I doubt there is really anything you can do to aid detoxification other than drink a lot of water.
 
ahmo

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Vitalic I can assure you my gains over the past 2 years have not been placebo. They have been hard won. There has been nothing spiritual in it, my physiology is in a far different state than it had been. Someone has commented that detox should be replaced by chelation. I'd accept that for the part of this that was metals. But that ignores the SIBO, fungus, parasites. Detox is getting rid of things that are toxic to the body's functioning.
 
Vitalic

Vitalic

Messages
180
@ahmo If you have parasites and do something to treat parasites I don't see that as detoxification any more than chemotherapy for cancer would be detoxification, if that classifies as detox then everything is detox. When people refer to detox they typically mean purging themselves of the harmful chemicals/biproducts of whatever primary treatment they are engaged in, which they believe are "building up" within the liver, as though the liver was a filter that needed flushing out from time to time. I hear it all the time from other patients/advocates and it is now seen as an integral part of treating chronic Lyme. This is what I am skeptical about and what the article I linked challenges, I would like to see some evidence that these questionable remedies such as coffee enemas actually help beyond placebo.
 
Vitalic

Vitalic

Messages
180
@ahmo There doesn't seem to be any solid evidence hence why I asked, and it seems any of the benefits coffee consumption brings can be acquired without shooting it up your backside. But as long as it "works for you" I guess that is the main thing.

Not a personal attack by the way, just frustrated at the fact we are so reliant on anecdotes plus trial and error to even have a chance of getting better.
 
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Helen

Senior Member
Messages
2,243
skyfall said:
For the past week or so i have been getting burning sensations above my lip, crawling sensations on my face, numbness in my face, my face feeling tight, crawling sensation in my hair, tingling in the back of my head and face.
Click to expand...
Hi skyfall,
Sorry to hear about your situation, at least you are in good company here. I have about the same symptoms as you have and I am examined by a top ME and Lyme specialist. I saw top neurologists before, but all in vain. These symptoms are typical for Lyme and also that they come up patchy according to my doctor. I would also recommend reading @bertiedog ´s posts as she has had good help from only herbal treatment. LLMD Dr. R. Horowitz wrote a very good book too-his latest. I do hope that you´ll find support and knowledge to go on with treatment. It´s a long and bumpy road but it is possible to get much better and even cured.
 
bertiedog

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
@Helen and @skyfall All I would add is that the herbal treatment has only taken me so far and I am now having to seriously work on my gut which I am pretty sure is leaky with possible SIBO and in addition I have many SNPs that are a problem so I am also trying to add in specific supplements to help this too. I am going to do Genova's Comprehensive G I screen to actually see what is going on at the moment and have also ordered some sulphate test strips to see if I am still producing too much sulphite and probably ammonia too (CBS ++, BHMT ++ x 2)

My experience is that for me the Cowden herbals on their own aren't sufficient to keep me well.

Pam
 
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Helen

Senior Member
Messages
2,243
bertiedog said:
I am now having to seriously work on my gut which I am pretty sure is leaky with possible SIBO
Click to expand...
According to my doctor, and proved by tests before starting treatment, I had severe gut problems ( I wasn´t aware of that they were so serious) most probably due to the Lyme infection. His experience is that Lyme infection may cause a lot of gut problems and food allergies if the Lyme infection isn´t treated properly and early. Beside treatment for the bacterias I have a thorough protocol for the gut. I´ll tell you, or anyone interested, more in a PM as this is skyfall´s thread.
 
Dufresne

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Vitalic said:
@ahmo I'd like to believe the detox methods people go on about actually work but I fear it is mostly placebo. After having been on antibiotics for some time and trying without success various suggestions people have made to me like Burbur, Pinella etc. I have grown intensely skeptical and wonder if this article is not a rather accurate assessment:

https://www.sciencebasedmedicine.org/detox-what-they-dont-want-you-to-know/

"Helped me clear my toxins" sounds like some kind of pseudo-religious spiritual cleansing. I doubt there is really anything you can do to aid detoxification other than drink a lot of water.
Click to expand...

I never got anything out of herbal detox kits. The one thing I do take that's along these lines is silymarin, in the hopes it might protect my liver from all the antimicrobials I take. I think detoxifying is mostly dependent on decent energy, which we unfortunately don't have.

I didn't get anything out of Burbur or Pinella either. If you're trying to mitigate inflammation from herxes you might want to try bicarbonates and an alkaline diet.

It's anecdotal but many with biotoxin illness and Lyme disease report feeling a whole lot worse or better when taking binders. My experience suggests there's definitely something to this. This is the one detox strategy I've no problem recommending.

While I get nothing out of coffee enemas, I know too many credible people for whom it works wonders to believe it's bupkis.

Water and sweating definitely encourage detox, so I think saunas are a viable approach for many of us. I also believe lymph movement, whether from exercise, rebounding or massage can be helpful.
 
jess100

jess100

Senior Member
Messages
149

Just got Buhner's book about Anaplasma, Babesia, etc. and like others I'm impressed by everything about the book. I, too, expected a less scientific approach but this book is well researched and well written. For anyone considering buying it, it's well worth the money. In fact it's worth a lot more than I paid.
But questions about how to begin. He lists many suggested plants for each aspect/disease process of Babesia (such as anti-babesial plants, organ support plants, immune support, specific symptom support) So do I begin with a few plants for each aspect? Or just one plant from each and add on to that? Where are you buying these plants or supplements or tinctures (ie what company reliably produces quality?) I realize he has said we must experiment and pay attention to our bodies but I don't think he meant to take all the plants listed in total-so how to begin??

I'm sorry if this posted more than once. I had a hard time getting it reply
 
jess100

jess100

Senior Member
Messages
149
Sorry I just saw that he does list a suggested starting point. I had missed that my first time through.
 
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