I'm 44 and I've just been diagnosed with Lyme disease (Western blot: IgG P30 Ab Present Abnormal, IgG P23 Ab Present Abnormal, IgM P23 Ab. Present Abnormal and CD57 was low at 50) but also with Mycoplasma Pneumoniae which was high at 1457 and Chlamydia Pneumoniae which was slightly high at 1:64 but I also have a parasitic infection which I discovered after pulling out what looked like hairs from a cyst on my chest that both my husband and I could see were moving! I'm currrently on Ivermectin 3mg 4 pills a day for 5 days and am supposed to repeat that dose once a month for awhile but my stomach is not very happy about
it. I believe I've had lyme for nearly 3 years as it was about
a week after a trip to the beach (in a foresty area) that I had a small bullseye type rash and the late afternoon/evening of that day I just felt plain awful with a fever and nausea and things that I attributed to sun poisoning since I had gotten a sunburn (even though it was an overcast foggy day and I was the only one to get burned!). I thought maybe I had Lupus because of the sensitivity and rashes but those tests have all been negative I have just been getting sicker and sicker to the point that I now live in bed with pain and too much exhaustion to do anything anymore. It's possible I've had mycoplasma even longer since I was actually hospitalized for a lung infection in my early 30's, but the lung biopsy didn't show it. They diagnosed me with interstitial lung disease, which basically means they have no idea. (And since I'm not a smoker, they blamed it on my birds and I was forced to rehome all my beloved cockatiels which is something I will never forgive those doctors for!)
5 years ago I had the gastric sleeve surgery and it took about
2 years to lose 100 lbs but I was starting to feel great and do things I'd never thought I'd be able to do and it was amazing! Then I got rearended, had a hysterectomy, an ankle avulsion fracture, fell off a ladder and a counter, had a hemorrhagic ovarian cyst rupture and on and on ...and each thing has knocked me down further and further until I just can't even seem to recover at all anymore. Oh and then after having Lasik (with an enhancement since I was under corrected the first time) I got to enjoy clear vision for almost 2 years, until I started having vision issues that led to neovascularization in my left cornea which has left me legally blind in it and my corneal specialist has no idea why (says he's never seen anything quite like this before) and my only treatment option is a full thickness corneal transplant...umm NO! Especially not without knowing the cause! I do have just about
every Lyme and Mycoplasma symptom in the book, including many of the neurological ones that had me fearing something like MS or early onset Alzheimer's, and have been fighting yeast for what seems like forever. I've been on fluconazole since December because after just 2 weeks off of it, the really bad thrush in my throat came right back as did the horrible abdominal pain, gas and bloating that makes me feel like I want to die so I'm staying on it and taking a really good probiotic and just ordered a really good PRE-biotic as well in the hopes of fighting this beast with all I have.
So now we've discovered why I'm so exhausted and have all these devastating symptoms but weeks or months on antibiotics isn't something I can even begin to tolerate! Antibiotics rip up my insides and even 2 days on a vaginal suppository antibiotic for BV had my stomach in such knots that I couldn't even bring myself to use the 3rd dose. Not to mention my intolerance of IV's with my horrible veins and no way could I ever get a port or PICC line! I am so hypersensitive that I would have an awful time just attempting to recover from getting the port and it is sure to cause me quite a bit of pain just being there as well. I don't know if having the MTHFR mutation is complicating things but I know the COMT gene contributes to the increased sensitivity and pain I constantly have and everything with me is greatly intensified to the point that I have to deny many tests or procedures due to the immense pain I know they will cause that the medical staff either can't understand or refuses to believe so then I'll get labelled a drug seeker or whatever which just makes it all too much for me to even think about
I explained my fears to my ND who agreed to allow me to try a different protocol of some herbal tinctures (A-Myco, a custom blend of something called core, polygonum, isatis and houttyuynia) as well as a mitonutrients supplement, a mushroom blend that has immune support, Micellized Vit A, Melatonin, Magnesium and Xylitol but wants to follow me closely and says I still may end up on IV antibiotics but after doing these things I should be in better shape to handle it. I'M COMPLETELY OVERWHELMED! I'm someone who doesn't take any med that isn't absolutely necessary because I usually experience every side effect in the book and severely. I'm only on day 2 with Ivermectin and feeling pukey but I don't see any other choice when my husband and I saw what we saw which was terrifying!
Also between my gastric sleeve and having Celiac (which was diagnosed a little over a year ago), there isn't a lot I can eat and most foods (especially the healthiest ones) cause me horrible pain and upset my stomach which has severely limited what I can even eat. I can't even bear the thought of having to go on some strict diet with kale and vegetable smoothies and fermented this or that when I'm already so limited and so many foods make my stomach want to turn itself inside out before I even put them in my mouth. I'm sitting here staring at all this stuff I'm supposed to take and just completely breaking down. I'm glad that I finally have a diagnosis and I'm not as crazy as I was beginning to think and all of my symptoms and everything I've been going through has FINALLY been validated but looking at what's to come almost makes me wish I had cancer instead. At least with cancer people and doctors work with you and make sure you have all the support you need and know how seriously ill you are. And with cancer it's also completely acceptable to make the decision not to treat it and have palliative care to keep you as comfortable as possible through til the end. With this, not many understand and not even doctors acknowledge the seriousness of it and choosing not to treat just leads to a life of continued misery with no palliative comfort care nor any end in sight. I'm terrified of going through what I'm about
to have to go through and honestly have no idea how I'm going to get through it.
Am I delusional that I can avoid IV antibiotics despite having both Lyme and Mycoplasma? Is it possible to kill these things without antibiotics, and without going on some crazy kale grass diet and daily sauna sweats and colon hydrotherapy and body brushing and soaking in hydrogen peroxide and hanging upside down an hour a day and 50 different herbal supplements or any other impossibly hard treatments? Does anyone have any advice or other treatment options/suggestions or has been on this protocol and can tell me what to expect or know if it works or have anything that might help make things easier? Because honestly at this point, if I knew this disease would kill me, I would just let it. I hate this more than anything I've ever gone through in my lifetime and it seems like too much for me to handle and I've just had it with being sick and in pain and feeling miserable. I've been sick my whole life, from constant ear infections as a kid to sinus and lung infections to arthritis and degenerative disc disease to this neck pain that makes me feel like my head is too heavy to be upright, to these migraines and celiac and everything else that keeps making me sick and messes with my insides and having one year where I finally felt so awesome to just have it yanked away from me and getting sick yet again makes me want to scream and just keep screaming until I crumble into a sobbing mess on the floor. (And yes if you are wondering, I do have a great counselor I see regularly so I am
getting mental support, but there's not a lot she can do to help me when it's the health of my body that is the cause of my mental breakdowns. I even have major adverse reactions to anti-depressants!)
And I thought getting the Celiac diagnosis was bad...you should have seen that
tantrum! Thank you so much for any help or treatment advice you can give me because I am just so lost and confused right now. And I'm sending huge hugs and have major admiration for those of you that have gone through this and dealt with the whole IV or port antibiotic thing because I don't know how you had the strength to do it!
Post Edited (Rare Squirrel) : 5/4/2018 3:45:31 AM (GMT-6)