Newly Diagnosed, Overwhelmed and Terrified!

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)

Hi! I'm sorry you've been feeling so sick. It's a shock to find these things out, but now you can hopefully start feeling better, one step at a time. One thing I've learned is that we don't have to see the whole road map at the beginning to start heading in the right direction.

I wanted to say don't be afraid of the mycoplasma. I have that too, with numbers almost twice as high, and I have no symptoms from it that I'm aware of. Apparently a lot of people have that without knowing it. It may be the Lyme causing most of the symptoms.

And regarding diet, there is no one diet that is necessary for everyone. I think everyone agrees that it's good to avoid sugar so we don't feed the Lyme, but other than that, you can see what makes you feel better. And it doesn't have to happen all at once.

I have to head out, but welcome! I think you'll find a lot of information and support here.

I thought something like Morgellons too but it doesn't fit. I don't feel them and the area I pulled them from was actually numb. Under a microscope, they definitely resemble worms (confirmed by doctors) and not any kind of fiber like with Morgellons. I also have firm lab tests for Lyme and Mycoplasma so I think Morgellons is pretty unlikely at this point? I can't say impossible because I really do consider everything but it just doesn't seem to fit. I'm on an antiparasitic for it so hopefully they will be gone soon.

I'm much more worried about getting through the treatments for Lyme and Mycoplasma as it sounds like it could take years and make me feel a whole lot worse before better and honestly I can't take a whole lot worse as bad as things are now!

I've been trying to get through the information for those new to Lyme as well. It's just a lot to take in and like I said, I am so overwhelmed and exhausted right now. My ND is pretty experienced with Lyme so it sounds like she knows what she's doing and she references Stephen Buhner's book "Healing Lyme" and Antibiotics: Horrowitz "How can I get better" which sound like a couple of great references so I'm hoping I'm on the right path. I just don't want to lose yet another summer to feeling awful and going through treatments or this or that and especially if everything is just going to eventually lead me to IV antibiotics anyway.

I'm just super tired and really frustrated at the moment I guess!

It might even be that after treating the Lyme, you will be able to get rid of some of your other health issues, and be healthier than when you started. I feel like the herbs I took and diet and lifestyle changes I made because of the Lyme have made me healthier in general.

And you don't have to feel really bad all the time during treatment. While I definitely didn't feel my normal self, I feel much better in general whenever I start a new treatment, and no you don't have to take long-term or IV antibiotics, especially if they don't work for you.

Some people heal with only herbs, but some people do well on antibiotics. I don't think trying to jump though hoops with treatments that are time and energy consuming will necessarily help. I think herbs can really help your immune system.

im not sure why u think IV antibiotics will cure you. for some part of us nothing does. IV is no better than some oral antibiotics.

however .... if you begin having neurological symptoms i strongly advise you consider antibiotics. i read buhner's books and for bad neuro lyme he recommends antibiotics, and he is a master herbalist!! i played with "herbal regimens" for 2 years and i frankly regret it. i should have continued with a longer course of antibiotics much sooner and maybe just add herbs to it. instead, i treated only with herbs and my disease progressed to mostly neurological and now even after 8+ months of antibiotics im not responding as well as i thought...

i own and read buhner's healing lyme 2nd edition and healing lyme coinfections (Bart+myco). these are interesting but for me they were not helpful as i ended up taking abx again.

my impression is there are two types of LLNDs

- a type of lyme dr prescribing herbs that is has very strong knowledge of herbal treatments, knows where u can take good tinctures etc... if u find that kind of guy and work with him, you may have a chance to defeating this herbs only. here in europe you can find very few such individuals, even in Germany they are not as good as some US herbalists...

- a type of lyme dr that generally prescribe antibiotics but has a number of patients that do not respond to antibiotics or do not want to take antibiotics for various reasons ("i cannot tolerate antibiotics, etc..."). For this, they come up with a "package" taking the herbs that they read are useful to treating lyme, they read Buhner's book etc... These guys are really not herbalists they are just sellers of herbs... it's a big difference and i advise to run away from these people because they will get u so sick u will not be able to help yourself out of it.

so my conclusion: there are two types of doctors prescribing herbs: a) real master herbalists b) LLMDs that want to offer patients a "natural solution" without knowing much about what they do, in many cases just to keep patients in for a bit longer... Please... run away form b) ! If your LLMD seems he treats most patients with antibiotics, then it means he is good with that treatment. Stick to that. When u see u are not making progress, LEAVE !! Find a real herbalist! Or find another LLMD that is good with abx but has different approach.

Post Edited (mpost) : 5/4/2018 11:53:47 PM (GMT-6)

Thank you so much for the replies. Just being able to read that there are those that understand and have some experience helps more than you know.

Yes I have had several full thyroid panels that always come back really good. Like they tell me my thyroid numbers are more than good and in the perfect range. And yes I do have the C677T MTHFR gene mutation...lucky me. But at least I don't have the other one too. I've been trying different digestive enzymes but so far all they have given me is heartburn and stomachaches. Are there different treatment strategies when you have MTHFR genes?

Lowering stress is something I've been trying to do for quite awhile now but SSD seems to be determined to make sure I stress myself to death. The things they are putting me through for a review...I just can't believe they do this to people who are so sick!

I still don't know what to do yet. I'm staring at all these things I'm supposed to start taking and already my stomach is revolting and I've not even opened one of the bottles yet. I'm alone so much that I can't fathom going through all of this. My husband wants to support me as much as he can but he works overtime and every other Saturday and is constantly exhausted so there's not a lot of the days he can be. I'm still so scared and confused. I'm too tired to read any more information or even attempt to think about anything right now. Books...ha! I can barely get through an article! And when I do I don't remember most of what I just read anyway and constantly re-reading gets frustrating and causes migraines. It's like I'm too sick to try to figure out how to get better! And my system is so delicate that I have a real fear that taking the wrong thing could land me in the hospital in a very critical condition. Some days I think that would be preferable. A nice DNR order to let me go and finally have some peace. I'm literally wasting away in bed...yes at least now I know why which is a huge relief. But treating it...yeah that part I'm not so sure about.

Post Edited (Rare Squirrel) : 5/5/2018 12:53:08 AM (GMT-6)

mpost said...
im not sure why u think IV antibiotics will cure you. for some part of us nothing does. IV is no better than some oral antibiotics.

however .... if you begin having neurological symptoms i strongly advise you consider antibiotics. i read buhner's books and for bad neuro lyme he recommends antibiotics, and he is a master herbalist!! i played with "herbal regimens" for 2 years and i frankly regret it. i should have continued with a longer course of antibiotics much sooner and maybe just add herbs to it. instead, i treated only with herbs and my disease progressed to mostly neurological and now even after 8+ months of antibiotics im not responding as well as i thought...

I don't think or think I know anything at this point! I am so thoroughly overwhelmed and confused at the mountains of conflicting information that I'm having a hard time just getting my eyes to uncross! I have another appt with my doctor tomorrow to go over more concerns because I'm terrified to even start any of the protocol yet.

I am so over the top ridiculously sensitive to everything that even a blood draw can drive me to the top of a bridge at times. The phrase 'tough it out' to me is one of the cruelest things that a person could say. Difficult to most is torture to me. I can feel the smallest changes in pressure. I can feel bodily functions that I'm supposedly not supposed to be able to feel. To say I'm hyper-hypersensitive is an understatement. There have been so many nights that I've sobbed in my husbands arms just begging him to let me die because of the pain I've been in. So when I say I don't know if I can do this...I seriously don't know that I can do this. Doctors don't understand why or how I can feel the things I do and I can't make anyone understand who hasn't felt it. It's a little like explaining sight to someone who has never seen. Aside from the MTHFR gene mutation and the COMT gene mutation I also appear to have the CBS gene mutation which I didn't even realize was bad until reading about detox. I swear my genetic makeup was tailor designed to lead to a life of suffering. Not bad enough that a serious disease will shorten my life or get sympathy from the medical profession...just bad enough to leave me suffering with far too little support.

So that's why I was begging for some kind of gentle alternatives but don't want to go through anything if it's going to be pointless. Does that make sense? If the thing that is really going to help me most is IV antibiotics, they are going to have to check me into the hospital and probably keep me sedated. Maybe this sensitivity and way of thinking is a neurological complication of the disease but it's what I have so what do I do? I am in so much pain and misery right now that I can't imagine any of it getting even slightly worse for any amount of time. I'm not suicidal and I don't want to die but I seem to keep getting more than I can physically handle thrown at me time and time again and it just keeps getting worse. The war on opoids has guaranteed that I can't get nearly enough relief no matter what I do. My family knows that I have a DNR in place and that if I have signs of a heart attack not to call 911 because intervention would be a torturous experience that I can't be subjected to.

I'm sorry to post such a depressing post. I'm looking for hope but quickly finding that there really isn't much out there. I honestly have completely no idea what to do right now.

Rare Squirrel,

You mentioned genetic and detox issues. They can be a really big deal and could be greatly contributing to your pain. Since you had genetic tests done, I'm assuming a doctor put you on support for that, right? Has it made any difference for you?

I haven't had the tests, but I'm sure it must be part of my issues. From what I've read about it, supplementing helps some more than others. I also got the impression that a lot of doctors are giving people supplements to treat it, but they really are not experts on the matter and have superficial knowledge.

Since you have so many issues, I would look for a doctor who can really help you in those areas and with detoxing before trying to kill Lyme and coinfections with abx or antimicrobial herbs. Your body needs help and a competent doctor.

Have you tried using a sauna for detox?

Is there mold in your home or workplace? Mold toxins can be a factor for many.

You mentioned celiac. Have you been tested for food allergies/sensitivities? Those can contribute to symptoms.

Sauna's are way too hot for me and make me instantly miserable and sick. My doctor ran tests for mold and didn't pick anything up that concerned her. I don't think mold is anything I need to worry about, at least at the moment with the other things I need to deal with first. I have been tested for food allergies etc but the tests did not pick anything up. The only way I learn about sensitivities is from eating something that gives me issues later. My diet is extremely limited already. Grains, whole foods and vegetables cause all kinds of stomach pain as does rice. Meats are hard to digest and I can have 2-4 bites of them at max before I have problems. Frustrating that I get the gastric sleeve to lose weight and get healthy and end up intolerant of the best foods for health!!! My diet right now is like nuts and cheese because they seem to make my system the happiest. I drink zipfizz because of all the liquid vitamins it has that my body seems to do well with and I do feel worse when I go more than a couple days without it. The weirdest thing is that all my bloodwork for vitamins and minerals always come back perfect with the exception of my Vit D being consistently low (and for some reason supplementing with it gives me kidney stones, but my doctor thinks she knows why and we are going to work on that one) and my B12 is always super high, most likely from the zipfizz but we don't think my body is using it because it's not in the correct form which could be why there is so much circulating around. I take an Adeno-Hydroxy form of B12 that makes a definite difference in my cognitive function. My protein levels are actually on the high side which is a bit strange when you consider that both Celiac and the gastric sleeve supposedly cause malabsorption but none of my tests reflect any of that at all. My test results are strange and have had so many doctors scratching their heads and having no idea what is going on.

I live in WA where we have the Babesia Duncani strain that I also could be infected with but there are no tests that my doctor is able to order for that one. But from what I read, it's a particularly nasty infection too. She does think it's likely I could have Bartonella though my tests came back negative for them. They apparently don't pick up the most common strains of it that we have in this area. So if you want to put together all my current infections, Lyme, Mycoplasma Pneumoniae, Chl. Pneumoniae, are the ones I tested positive for, but I also have some kind of parasite (crossing my fingers it's gone from the 5 days of Ivermectin but somehow I doubt it) major yeast problems, BV (how ironic is it that I have yeast in the rest of my body but not down below and instead major issues with BV?), possible or suspected Bartonella and/or Babesia Duncani. I barely get out of bed and taking the smallest doses of magnesium, prebiotics, or anything aimed at helping my digestive system so far has only given me the most painful gas and abdominal pain that is beyond what I can handle. I'm sticking to the probiotics for now and will attempt the prebiotics again in a couple of weeks, hopefully when my system is stronger.

I've been overly sensitive since birth. So I'm guessing that adding Lyme and whatever other infections to it has just pushed it way over the top. Well, also having the gastric sleeve doesn't help either and sometimes I really regret doing that. I think you may be right about detox being the key. I haven't yet had a doctor deal with the MTHFR mutation yet because I don't react in a predictable way to anything and so far the supplements they recommended for it made me sicker or created more pain and it was through my own research that I discovered the Adeno-Hydroxy form of B12 that actually has made a positive difference. Even the small 3mg of Melatonin that was recommended before bed to help with migraines actually caused me headaches!

I am heading out to another appointment with my current ND soon to go over all these added concerns. She also recommends hyperbaric chamber treatments to help with the pain and detox but lucky me has Eustachian Tube Dysfunction from being raised on ear infections, antibiotics and having tubes in my ears so many times so we will have to be careful with that one. Honestly I am so sick at this point (only leave the house for doctor appointments and literally spend the rest of my time in my room in bed) that I'm worried about what my body can actually handle without being dangerous. I'd check into a hospital but that place is literally a torture chamber for me right now.

Also highly considering kryptopyrroluria either as something I was born with or a result of all the trauma I've been through. I've really been sick and had problems my whole life and the only time I ever felt good came about 2 years after my gastric sleeve before the trip where I suspect I was bitten and contracted Lyme. I was finally diagnosed with ADD and narcolepsy is highly suspected as well (I fall asleep at the drop of a hat all day long without stimulants) but hypersomnia was also suspected due to me sleeping 14+ hours and waking up feeling drunk and unrefreshed. I do have diagnosed sleep apnea and use a CPAP but my sleep studies for the others were not clear due to the fact that they did not tell me to stop taking Cymbalta which is actually a treatment for narcolepsy! (I'm off that awful stuff now but wonder how much both Cymbalta and Lyrica messed up my nervous system too.)

I'm rambling now... but it's a long complicated frustrating history to say the least. I do have another appt tomorrow with another ND as well who came highly recommended because I want to make sure I'm covering all my bases. I'm not expecting UW Infectious Disease to ever get back to me even though they had testing that showed a positive for Lyme Disease Serology but only picked up the one band at 23 for their WB test so they are probably going to say I don't have it. My immunity is so low right now I'm surprised anything showed up really! (The possibility of cancer has also been on my mind lately but I'm really trying not to think about that one because I refuse to believe that something like that would be thrown on top of everything else I'm dealing with!)

Maybe I should start a post asking super sensitive people what worked for them and what effects they had and how they dealt with them. I would search the forums more and do more reading on my own if I could but I get migraines really easily and the amount of information is overwhelming and really brings me down more than it gives me hope.

Thank you so much for all of the suggestions! I am taking note of every single one and trying to put together a list of them to keep me from giving up!