Are these normal with Lyme disease/coinfections? Needing wisdom again

Hi everyone,

Thank you so much to anyone who reads this or responds.

I've seen two LLMDs now and both think I definitely have Lyme plus bartonella and babesia. Because I'm still nursing we aren't able to treat bartonella or babesia yet. I should mention I did test negative when tested for those through my primary care - probably Labcorp.

I am wondering a few things:

1. After the stress of driving alone to one of the LLMDs I started to feel really horrible. I have had depression almost every day since. I drove myself alone without stopping 3+ hours there and then had the appmt and then 3+ hours back and stopped once on the way home. I feel almost back to square one which is really scary because I had had four pretty good days besides herxing. Then I went on that trip and have been so sick. Then I got my period and it has been so bad. My husband drove me to the second doctor and we brought our son and stayed overnight to break up the trip. It helped a lot but still had horrible depression, weakness, pain, exhaustion and so much more after. That was Monday and I'm still feeling horrible. I guess my body is still recovering from all the stress of appmts and traveling? And I mean also the physical act of being in a car and all that goes with traveling, not just stress of going to an appmt far from home or whatnot. Is it normal to feel so wiped out and symptomatic during your period and after something like traveling?

2. I have had this one symptom for quite some time and I'm wondering if it could be a Lyme and co symptom: before having to go number two I have any one of these symptoms & they can be severe in intensity: depression, panicky feelings, feel like I'm dying, irritability, weakness, heart palpitations, dizziness, feelings of fear/anxiety unattached to any cause. It is usually relieved at least to some degree after I go to the bathroom. Maybe it's not connected to any of these infections but I wanted to ask if it's possible. I have often said to my husband that it's like I have something in m intestines that's sending these horrible signals to my brain as I digest and then as my body gets ready to go. I have often wondered if I have some sort of parasite or something because I worked as a vet tech for many years. But now I wonder if Lyme or a coinfection could cause it? Those symptoms start up a couple hours before I have to go, then I get relief to at least some degree after. Sorry if it's a TMI question but it is what it is and I wanted to know if anyone else has this.

3. I am still noticing pain in the arches of my feet. It isn't super burning but it's like sort of pain and a tiny bit electrical-feeling if that makes any sense. I'm also still getting electrical zaps in my wrists and legs. I also get this cold patch of skin behind my left knee. And daily fevers. The depression seems to be worsening at this point also. And air hunger/needing to take deep breaths. Do you think these are signs that the coinfections (assuming I really have them) are taking off and causing these symptoms? Or is it possible these are just herxes? I'm often worried about advancing disease. Will I likely continue to suffer these symptoms until I treat the coinfections? The first doctor didn't feel you need to treat the coinfections first - he felt you could successfully treat the Lyme and then move on to the coinfections. Thoughts?

Lastly, I'm still taking amoxicillin 3 times a day, 500 mg. The first doctor wanted to keep it at that for now. The second one wanted to increase it. I'm not sure that my body can handle an increase at this point. I'm still herxing every day and sometimes severely. The second doctor recommended an IV treatment called UVLRX to treat the coinfections since he feels it's safe for breastfeeding. I'm really leery of any IV treatments. Have any of you heard of that treatment?

Also I keep wondering about the people who feel it's better not to treat these things at all but rather to support their immune system. Is there anyone out there who believes that's best?

Thank you all for any knowledge and wisdom you can share with me! And thank you so much for reading!

Post Edited (H Mommy) : 8/31/2016 11:55:34 AM (GMT-6)

Thank you so much as always Girlie! I am hanging on as best I can. Everything you wrote was so helpful!!

Oh thank you so much Huddie! Yes it's been really awful. I'm glad you are doing better! Thank you so much for your support and for writing to me!

I have wondered many times if it's normal in treating Lyme to have some good days and then to go back to feeling awful? I do think it could be due to coinfections. But is that possible with Lyme treatment? I'm not sure if I may have chronic Lyme so I do wonder if people with chronic Lyme have more that type of pattern? Does anyone know?

H Mommy,

Were any of the ticks that your husband removed in June affixed/engorged? Or is it only the last one? It would be surprising to get a positive read on July 20th from a July 11 bite, usually need more time to have it show up in your blood. I think it is common to wonder if you were previously infected, once you start learning about Lyme. I am wondering that now. And as Girlie mentioned, some good days and some bad days again. I want to know when people start having good days often. They probably don't come back on here! I stopped abx on Sunday and am wondering what will happen next...

Go slow, rest a lot, and keep taking the abx. Detox, supplements, meditation tapes, cooler showers, eating really well, and getting up and dressed, helped me a lot.

Huddie, the ticks on me in June were on for at least 36 hours. The one in July was on me the shortest. I started getting really sick end of June and was tested in July after a call to my primary. It came back positive. I think it was one of he ticks in June that got me. Those were both deer nymph ticks. The one in July was a larva stage and I couldn't identify what type but looked either to be deer or lone stars. But I know larva stage aren't as harmful. So you are going with standard antibiotic treatment? How long did you take an antibiotic and which one did you take at what dose if you don't mind me asking? Thanks so much!

Hi, H Mommy. All the answers above are awesome. I learn a lot here every day. I am answering to your docs UVLrx recommendation. Essentially, I was doing an older method called UBI, with ozone. It was the treatment that put my Lyme into remission. I did great for months, and thought like many, YAY YAY YAY!!!

... and then reality struck...
I am now fighting co-infections, with completely different symptoms. Lyme hit my joints and digestion... now I am finding more neuro issues and massive fatigue and exercise intolerance. Reading this thread, I am questioning my negative test result to Bartonella as I am having heel pain beyond anything tolerable.

.. and now my point, hahahahahaha

So, making a short story long (sorry), I am going for my 3rd UVLrx Sunday morning. I had massive neuro herx after the 1st, and the 2nd one gave me some hormonal herx.... think hot flashes. I don't have enough data to compare the results to UBI yet, but I am definitely getting a reaction which sucks but it's what we look for. I do Myers vitamin IV along with UVLrx. I am definitely interested in what treatment #3 brings!!

UVLrx is very safe. It is simply cleaning your blood with different spectrums of light. There is nothing but saline being put into you, no medications at all. For breast feeding I can't imagine it's unsafe in the least bit... although I never could have kids due to all this crap, so I am *not* speaking from that level of knowledge.

For detox, I do what many others do... epsom soaks, dry brushing, glutathione, ACV, infrared or ozone sauna, fermented foods, oil pulling, lots of water (lemon water too) ... I could probably add more