Hey everyone, this is my first post here. After reading some success stories, notably ones by Traveler, I decided I needed to get some feedback from people who really understand and have experience with this disease.
My main issues are neurological, and its mostly just brain fog at this point. I am still tired mentally and somewhat physically, but more mentally than anything. Could be some depression too which I think is lyme related, because when my neuro symptoms are low I am very happy and have a lot of energy!! I'd love to get this in check so I can get my life back.
This is going to be a lengthy post, please bare with me, I have a lot of questions and a lot of information about
myself I want to get out there.
Everything started 2 years ago in October, I used to smoke a lot of pot and one day I noticed it was giving me bad anxiety. Tried a few more times with the same results before just giving up. Then I started having a serious case of depression with anxiety that left me curled up on my bed pretty much the whole day. This lasted about
a month and was accompanied by suicidal thoughts and feelings that I wasn't in control of my own brain. Got a brain scan which showed I had ADHD (i already knew this and was taking medication for about
7-8 years already), and depression, which I had taken wellbutrin for in the past, and had eventually weened off. This was not like any depression I had ever felt before, I could deal with past depression and was fine before this. No need for meds.
After the brain scan the doctors at the clinic wanted me to be on an SSRI, a mood stabilizer, and an ADHD medication. But drugs had started to effect me differently, I was insanely sensitive to ADHD medication, even a tiny speck of adderrall would have me so anxious and my heart beating so fast that I couldn't leave my bed. I declined to try any new medications because I was so overwhelmed with the possible effects of what they could have on me.
I exercised a lot which helped a ton, but around spring of the next year I was having issues with my energy levels. I was sluggish and my brain just felt so foggy, like I was going to pass out at any moment. I had trouble breathing, my chest hurt and I felt awful. I had to leave work one day to take myself to the emergency room where they said I had bronchitis, and then later when the results of the blood work came back I had a positive lyme diagnosis.
Was on doxy for 2 months, then off for a month, then on for another 2 months. After the first 2 months of doxy i felt great which lasted for about
a week. Then the fog came back which led to me trying doxy again. The fog just wouldn't go away, doctors said antibiotics were the only option for lyme, so i figured i must've had other issues. From all the reading i did i diagnosed myself with a candida overgrowth, I told my lyme doctor what i thought and he prescribed fluconazole for two months. It seemed to help at first but the brain fog would not go away. Tried another anti fungal called terbinifine (lamisil tablets) which again kind of helped but not really.
Then in June I had a strange symptom which I now think was a lot of inflammation in my brain, it basically made me feel super up, like i was on uppers kind of without the euphoria, I didn't sleep for three days. My body was extremely physically tired, but my brain wouldn't allow me to drift off to sleep. I laid in bed wide awake all night for those three days. Eventually took myself to the hospital where they gave me Ativan (lorazepam) I now take 1 mg to sleep every night.
I also decided to do intravenous antibiotics at this time. I started with rocephin, but felt like I was having kind of a strange reaction, throat feeling tight, so my doctor switched me to azithromycin. I did 2 months of azithromycin before I decided to switch to Vancomycin, symptoms were pretty good on both meds. Brain fog really cleared the initial week of vanco. After 3 weeks of vancomycin i discontinued antibiotics. Ive been off of them since september 27th.
I'm going to my Lyme doctor tomorrow and I'm thinking of asking for some more tests to be done, because when he tested me only lyme showed up. He said i was very lucky, but I'm aware of the false negatives that are so common with common coinfections. I think it would also be a good idea to get tested for viruses that are associated with lyme. All I know of is the epstein barr virus but if there are more please let me know!
I'm going to make a list of the supplements I'm taking and any suggestions as to what I should add, stop taking, or up the dosage would be greatly appreciated.
Country Life d3 5,000 IU
Nordic Naturals ultimate omega fish oil 1120 mg
Integrative therapeutics buffered vitamin C 1000 mg
Inspired Nutrition Infla-Mazing+ (theracurmin 200 mg, meriva 400 mg, boswellia serrata 180 mg, bromelain 170 mg, celery seed 165 mg, ginger root 100 mg)
Local health food store B12 1,000 mcg, also has Folic acid 400 mg and B6 10 mg with it.
CVS Triple Magnesium Complex 400 mg (as magnesium oxide, magnesium citrate and magnesium aspartate, taken at night)
Lorazepam (ativan) 1 mg to fall asleep.
Medical Marijuana (very small amounts, smoked) to sleep.
Twice a day I also take the full Restore Kit by doctor Bill Rawls as part of the Vital Plan (12 pills around noon and another 12 before I go to bed. I also take Pure Chlorella, 20 pills twice a day along with the Restore Kit.
The Restore Kit has a lot of good stuff in it, I'm just not sure if its enough and I need to find a way to add more of the things like Japanese Knotweed (400 mg) or Andographis Extract (250 mg). There is a complete list of ingredients on his website, it would take me forever to list each one.
I have an Ampcoil that I use every day, mostly before bed but sometimes during the day. Theres so many options and settings on the tablet that comes with it that it seems overwhelming. The lady I'm leasing it from wants me to do all kinds of protocol to heal my body instead of just blasting the borrelia, which I can see helping but I almost never do borrelia cleanses even though I feel that I should.
I have some Inspired Nutrition Ultimate Monolaurin which I was using with the IV vancomycin but it was making me herx at a full dose so I haven't taken it for a few weeks. (I was tired of feeling so sluggish from the antibiotics already) might give this stuff another go. I also have Inspired Nutrition Biofibrin which they recommend you take after building up to a full dose of Monolaurin without herx, so I haven't been able to try that yet. Its basically a combination of serrapeptase and other enzymes that are biofilm dissolvers. Really interested in this one.
I tried some gou teng (uncaria rhynchophylla stem, branch, and hook) that I got from amazon it is the EFONG brand, helped to clear up brain fog even in small doses, but it made it so my Ativan GAVE me anxiety instead of taking it away. Gou teng earlier in the day plus ativan at bedtime gave me a super strange feeling in my head and no sleep ensued, so I haven't taken any since.
I have a Houttuynia extract which I am excited but slightly scared to try, after reading accounts here of it leading to extreme herxing. Its a tincture so I could start at lets say 1 drop and build up, but I still have trouble remembering to try out new things because my brain is so cloudy.
I've been following the Vital plan phase 1 diet for about
six weeks now. Avoiding gluten, sugar, soy, dairy, and a lot more stuff that I thought was totally fine for me.
Should I be doing epsom salt baths? Regularly? I have never even done one but read they are great for removing toxins from the body.
I would like to note that my pee smells a lot lately. Like dead stuff. Like I’m peeing out a lot of dead bacteria or something. If anyones heard of this or if it sounds super concerning please speak up.
Should I be doing the Buhner protocol? I've seen it recommended a lot but it seems complicated to start. Not sure how to begin getting all the herbs I need and things of that nature.
Last question, its about
a root canal. I know this probably deserves its own post, but since I'm just getting started over here I'd like to have everything in one place. I try to be organized but this coupled with ADHD is a nightmare. I have had a dead tooth for like five or six years now, its the right front tooth on my upper Jaw. I've had dentists put stuff over it to give it a more white or glossy appearance but its still dead underneath. Its very noticeable if I smile in a picture or video. I was always terrified of getting a root canal but I want to finally get it done for cosmetic reasons and I had read that it could lead to a healthier immune system. I heard the dentist gives antibiotics to you for like a week after a root canal and am wondering if certain antibiotics for such a short amount of time are alright for someone with chronic lyme.
Please any insights are greatly appreciated! I'm 100% peace and love and I respect everyone's opinion, even if you think my post is long and ridiculous