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2 years and counting CAn this still be lyme???

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Posted 9/12/2014 12:37 PM (GMT -5)
I had a positive IGENEX test 3 years ago did some meds did some cowden and rifing and dieting and well I am in the middle of a crisis. I am feeling brain foggy dumb basically. spaced out, sad, anxious, muscle pain all over legs mainly twitching all over mainly legs as well. Some muscle jerks etc. I have better days but the last three are horrendous. Please share what any of you have done to heal your lyme and do you think this could be something else?? Sitting at work ready to have a panic attack. Pain was so sever It feels like something is ripping at my legs...

Thank you

Cyn eyes
Posted 9/12/2014 12:41 PM (GMT -5)
The coinfections can cause symptoms as well. Have you been tested for or treated for them? Bartonella, babesia, ehrlichia, anaplasma, Rocky Mountain Spotted Fever to name a few.

Bartonella can cause pain in the long bones of the legs and arms as the bacteria take up residence in bone marrow and cause inflammation there.

Pain in the larger muscles of the body can be indicative of a babesia infection.
Posted 9/12/2014 12:44 PM (GMT -5)
Hi Cyn,

Sorry to hear you are not feeling well again. Can you compare it to how you felt 3 years ago?? There are many things it could be...it could be a relapse or reinfection or something else going around that caused your body to get 'off track.'

How did the Cowden and dieting work for you?

I think if I were to relapse or something that made me think of lyme I would probably go back to my 'ol' faithful herbs that worked the first time. If it is lyme...what worked the first time should have some effect for it today as well.

~beth
Posted 9/12/2014 12:57 PM (GMT -5)
I have had good days bad days good weeks bad weeks but nothing permanent. I am trying new essential oils and things of that nature so maybe its a herx. I haven't felt this bad in a while. My eye has pressure in it as well and seems to be affected. Cowden I never could do fully as it made me far to sick. But I am back on teasel and banderol. I haven't taken any today as I felt this coming on. What have any of you taken to detox. I am worried it may be an autoimmune issue as well. I need a better probiotic but trying to stay clear of dairy,as I am doing the autoimmune paleo. only cheat is one decaf coffee I will be omitting again soon. I felt great when I am extremely strict. I need to get my gut health better. I am working on that as well. But am worried feeling like I am alone. I have spent thousands and am limited at this point and I live in an area where we have no Dr.s that get it asn the good ones are hours away and don't accept ins.. Having one of those days praying I can get through work and get my daughter to soccer practice, Thank you all for your replies...

Cyn :-)
Posted 9/12/2014 1:20 PM (GMT -5)
I totally relate... Have been sick for 2.5 years and it feels like I'm never going to get better! So tired of the pain! I have a feeling you might have at least one coinfection and that is why you're not getting better and are in so much pain. A few months ago, I finally tested positive for Bartonella. The treatment I'm on is not helping though. I have a feeling I also have Babesia. I get horrible night sweats and have air hunger. But my entire body hurts... Muscles, bones, everything... I can't say too many things really helped. Detoxing definitely helps with the herxes and makes them shorter and less severe. I take Chlorella, sarsaparilla, Burbur and Pinella. Epsom salt/hydrogen peroxide baths, but have only been taking them once a week. I have 3 kids to run to activities, and they take quite a few. I've been beyond exhausted since school started! What helps me some for energy and mental fog is Siberian a Ginseng and huperzine A. Love Huperzine A! I also take "true focus" by NOW brand that helps some.

I'm going to start looking for another Dr. As I feel my Dr. Is not good at detecting coinfections clinically and has hardly switched up my meds in 1.5 years.

I really hope you can get better help and can heal from this horrible disease! ((Hugs))!
Posted 9/12/2014 8:11 PM (GMT -5)
Cyn, I too was infected over two years ago and started Lyme treatment 14 months ago. Although I am feeling much, much better, I am still dealing with the infection itself and also with the side effects of the antibiotics that I take.

Please consider that perhaps some (or many) of the symptoms that you are experiencing are probably due to an endocrine disorder. Lyme is known to impact this system early in the infection stage thus why many of us feel foggy, forgetful, tired, fatigued, gain/lose weight, have heart issues, and have digestive issues. Lyme also loves to consume magnesium, and unless you replenish what your body needs and what Lyme takes, your body will suffer from muscle jerks, twitching, etc.

It is very unlikely that Lyme is the only infection in your body. Many who don't heal quickly (such as me) have multiple tick-born infections. Right now I am fighting Bartonella like there was no tomorrow, and let me tell you, it is a formidable opponent. Perhaps some of the other symptoms that you feel are different infections? Bartonella is known to impact the legs heavily and to affect the brain as well.

I have not reviewed your previous posts but if you have not done so already, perhaps you may want to share with the group the symptoms that you are going through as well as your history of treatment so we can counsel you on best treatment and give you comfort as well.

I know that this group has been very kind to me and has been here for me when I feel lost or just need to let something off my chest. I am sure that they can be here for you as well if you feel anxious and unsure and need someone that can understand you.
Posted 9/12/2014 8:57 PM (GMT -5)
I completely understand your situation. I was sick for many years before even discovering that I had Lyme. I have been doing treatment for almost 2 years and I still have the dull flu like joint pain. Here is the good news, at times I have still achieved no symptoms at all. I'm just trying to figure out the equation that causes this. I've done oral and IV antibiotics and herbs as well. I also will go through spells of panic attacks. I am currently taking a break from the antibiotics and I'm just taking banderol and samento in liquid form. They really help with the anxiety and panic. And it gives me great comfort to know that there is solid research that shows these herbs KILL lyme bacteria. I'm not there yet but I have had those moments days and weeks at a time where I am symptom free. Keep in mind a few years ago I couldn't walk to the kitchen without almost collapsing. I now work 40 hrs a week, just got married, and I own a small business. Just find your formula and it will happen!!!
Posted 9/12/2014 11:20 PM (GMT -5)
Hi Cyn. So sorry you are suffering and that it has been this long! I did not start getting better until I started colonics 2x weekly. Toxins were making me SO sick! I did them 2x weekly for 5 months, then went down to 1x weekly for 2 months and now I am ready to do them every other week. I was also diagnosed with HLA genetic mutation which made me unable to detox mold. I tested positive for black mold exposure and also 2 other molds. I am MTHFR heterozygous which caused heavy metal buildup in my body and low levels of glutathione. Finally, I was diagnosed with Protomyxzoa (mosquito borne parasite, diagnosed through the Fry test). I took Purify by The Life Tree for that. I guess when you are bitten the tick injects a number of parasites that take over your gut. I was horrified to see what was coming out of me during colonics! It was 7 weeks of truckloads of parasites with no prior signs of them! I cannot tell you how shocked I was. That really helped me though. I went from barely crawling around my house in February to a full time job where I run all day long and lift heavy tubs of salads. I am much, much better. If you have any questions feel free to email!
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