Hi all, I joined the site looking for others who have atypical symptoms. Mine are almost exclusively psychiatric. For two years I’ve been through every psychotherapy and mental health treatment imaginable, and absolutely nothing has helped. My symptoms started suddenly after a brief round of Cipro for a UTI in January 2014. I have hellacious anxiety, a sense of being depersonalized (like I’m in a bad dream all the time), and a feeling of wanting to bust out of my body that’s so bad and so unrelenting that I have bouts of screaming, crying uncontrollably, and hitting/kicking things (not people) virtually every day. I never had any of these symptoms before, in 60 years. As it got worse, I totally lost my appetite, and I feel disconnected from people and isolative(I’ve always been outgoing). My current psychiatrist finally said he thinks there’s something medical going on, and I had IGenex testing for Lyme. I turned up positive for babesia only. No idea how I could have been infected, or when. I’ve begun treatment with azithromycin, had to cut back to every other day due to what seem to be unmanageable Herx symptoms (fatigue, brain fog, and worsening of my psych symptoms to where I was suicidal). I’m trying to buy in to this diagnosis, as it’s about the only hope I have, but I’ve yet to hear of anyone like me. On paper I look healthy…on the inside I’m nearly disabled. I’d love to hear from anyone who can weigh in on this.
“Herxing” and it’s symptoms are actually as a result of an overdose of antibiotics and are incredibly dangerous. It shouldn’t be part of any treatment for Lyme disease or is cohorts. It is very concerning that you’re being treated with this protocol based on igenex testing, which is often completely inaccurate. Please read our page on Babeosis under the discussions link.
Hello 10acious.
I don't have a lot of advice, but I do want to say that you are not alone, and to keep on holding out. I was also recently diagnosed with Lyme Disease based on an Igenex blood test, and have started treatment with Azithro. I have likely been infected for around 6 years, but the psych symptoms for me did not start to worsen until this last year. Since infection, I have had bad depression and anxiety, but this last year it escalated to exactly what you describe: explosive anxiety (I also often kick things and will punch something if it gets too bad), bouts of screaming, uncontrollable crying, and the depersonalization as if I am not a part of my body.
I believe a lot of this comes from the toll that Lyme takes on our bodies - we are so depleted of vitamins and minerals that our body uses to regulate our functions. I have found that it has been hard, but I have been working with my LLND to balance it out with supplements and with the Azithro.
My symptoms did get worse during detox before they started to get better. It got intense to the point that I didn't think I could handle it anymore, and the action in my head was scattered and I couldn't control it. Please please push through. I did it, and I know you can too. I found a Doctor that is willing to put the work in, and I have taken every ounce of energy that I have and have put it into research and looking into what I can do (every little thing) to help myself. Every day is not easy, and I am far from better...but I know that it will come. And, if nothing else, it can only get better.
I did abx for 8 months and it screwed up my gut big time. Then I did Cowden...no effect.
Based on the many posts I've read and the LLMD's I have worked with, abx are often more dangerous than the lyme itself. But that puts the onus on the patient (who may have very little energy and time) to do the many things that will help most auto immune disorders. Auto immune disorders all have multiple symptoms and do not have the same symptoms across different patients.
I have had this 12 years and am starting to get better. I credit: a paleo diet, certain supplements, juicing, chi gong and meditation. The nice thing about everything on this list..is there are no bad side effects.
However, my LLMD felt that no one he had seen had gotten better without abx. I know now that there are many people who heal without them. But then I am just another patient.
NeglectedMind said:
Hello 10acious.
I don't have a lot of advice, but I do want to say that you are not alone, and to keep on holding out. I was also recently diagnosed with Lyme Disease based on an Igenex blood test, and have started treatment with Azithro. I have likely been infected for around 6 years, but the psych symptoms for me did not start to worsen until this last year. Since infection, I have had bad depression and anxiety, but this last year it escalated to exactly what you describe: explosive anxiety (I also often kick things and will punch something if it gets too bad), bouts of screaming, uncontrollable crying, and the depersonalization as if I am not a part of my body.
I believe a lot of this comes from the toll that Lyme takes on our bodies - we are so depleted of vitamins and minerals that our body uses to regulate our functions. I have found that it has been hard, but I have been working with my LLND to balance it out with supplements and with the Azithro.
My symptoms did get worse during detox before they started to get better. It got intense to the point that I didn't think I could handle it anymore, and the action in my head was scattered and I couldn't control it. Please please push through. I did it, and I know you can too. I found a Doctor that is willing to put the work in, and I have taken every ounce of energy that I have and have put it into research and looking into what I can do (every little thing) to help myself. Every day is not easy, and I am far from better...but I know that it will come. And, if nothing else, it can only get better.
Hello 10acious!
I just reread this thread and have 2 more cents to throw in.
Almost everyone I’ve spoken to (who has improved) has taken long term abx. That said, they usually stop after a time, and then try many alternative therapies before getting better. Herxing does seem to be an effect for all Lyme patients. If the reactions are tolerable, you may choose to live with them for a time. Being certain to take Probiotics all the while. In my case, I think the abx might have prepared me for the things I did later which seeem to be helping. That said, there are some people who have healed out there who went straight to non-conventional medicine. (Like the Cowden Protocol)
Do not give up. And above all…listen to your body. What it tells you is more important than what anybody else says IMO, including your doctor.
Best of Luck,
Tommy