Back and confused more than ever

Not sure if any of you will remember me. I tested CDC positive about 7 years ago. I was told 28 days of doxy would cure me. When it didn't, I was just stuck with fibromyalgia. Nobody would listen to me when I said things were progressively worse every year. Fast forward I was told by a Lyme advocate that my symptoms sounded like chronic Lyme and to see an LLMD. Last March I met up with an LLMD for the first time. I was diagnosed with Lyme, bartonella, babysit, Epstein bar (healed) and candida as well as a heart murmur . He started me on doxy. Then summer came and he wanted me off it and j Bactrim. I got real sick after a few months with waves of nausea and a rash..allergic. I was switched to clarithrimyacin or clindamyacin..can't remember which. I then broke out in to a full face of rash and itchy tight throat. Allergic. At this point I called the LLMD who is 2.5 hours from my house and spends literally two minutes with me and hardly speaks and has zero personality. He writes me a script, tells me I'm one of his sickest patients and sends me on my way. The refuses to speak with me on the phone when I'm having a severe allergy and gets pissed about it. Tells me to come back in and well start a new abx immediately. Um..past 2 medications I'm allergic to. Btw--the rash on my face took over 4 months to go away. It covered every inch of my face, in my nose, ears...anyway, I digress. My naturopath told me my body was rejecting abx and I should go natural. This was around August of last year. I felt great for awhile once getting off antibiotics. I was working out on a treadmill 2-3 miles per day, changed my diet completely no sugar, no gluten, no dairy, no processed foods, etc.
Slowly I started getting sick again..couldn't work out anymore, rage returned full throttle, anxiety worse than ever, pain and fatigue. Anyhow, I realize now the antibiotics probably killed a load, while making me sick maybe the reaction was normal? Like a herx? Then when I got off them I felt a little better because the abx killed a load? Then load crept back up and I got sick again.

I'm confused what to do. I really didn't click with my LLMD. I realize not all are created equal, but I need some hand holding. I'm anxious as hell and I can't handle someone spending no time with me after driving so far, writing a script and saying smell ya later. I also would appreciate some natural alternative advice. I had a naturopath for that but their approaches were night and day and very confusing.

So now that I'm getting sicker again..winters here and it's worse than ever and I can't figure out if I should go back on antibiotics? Continue with natural? I currently take gemmo therapies, magnesium, vitamin c, benedryl to sleep, cod liver oil, pain pills to survive and be able to continue working. I can't work out anymore, have awful rage, anxiety and OCD as well. I feel like a ticking time bomb. My heart is bothering me. It pounds, it beats off sometimes..I've been having diarrhea, constipation, pain all over, my hands are partially paralyzed. I can't grip anything with my fingers touching together, or hold any weight in my fingers or wrists.

I've probably been infected for 20+ years but really got sick 7-10 years ago.

I am petrified of going back on abx and the side effects. The rash on my face was absolutely awful. I was nauseated 24/7. I'm only 90 pounds and I can't lose weight. I just want to be well. I'm terrified of the side effects and long term effects of antibiotics. I am FAR from wealthy and don't want to throw all my $$ away unless there's some sort of guarantee to get better. I can't afford most of these LLMDs. I'm totally lost. I'm walking around in the dark. I'm 32, want a child so darn bad, but am too darn sick. Won't risk transmission to an innocent life.

So what is the right answer? I am gluten free . I got glutened awhile ago and it appears I've probably developed celiac as I got complete brain fog and a nasty rash as well as horrible bathroom issues. I'm laksa sugar free, almost no fruits ever, no processed foods and grain free for the most part (once in a blue moon corn)

I drink lemon water like a ****** lol. I just want to do the right thing. I listen to 20 different people claim this that or in between healed them or that I'm really sick with ms or Parkinson's or something else and not Lyme. Or they don't believe me. Or they have some bit of advice that conflicts with the others. It makes me so confused.

I am in NJ. I already went to Dr S. Don't want to go to him again.

My question is what would you (or have you) do (ne)?

Antibiotics long term? Holistic? $$? Should I go in for a spinal tap, seek other possibilities from drs and not tell them I have Lyme and see what they say? I did test cdc positive years ago. I'm so confused.

I just want to be well. I can't afford to take risks though. We don't have a lot of $$. Is there such thing as a good LLMD? Mine was awful.

SleeplessNJ- sorry no advice re: treatment here but I do know that there are amazing LLMDs out there.... Mine has 2 daughters with Lyme... 1 just delivered her 1st child. I also want to start a family and after being in treatment for 7 months, we're going to start trying soon under the direct supervision of my LLmD.

Don't lose hope-- you're still young and have some years to spare-- yay!!!! Focus on your healing -- and know you will-- with your baby goal Always in the back of your mind to help keep you strong!! You can have a baby if you're on the proper antibiotics during pregnancy and are healed.... I'm nearly 40 and have so much optimism that I'll be able to conceive and safely....

Perhaps start a new thread, looking for a LLmD in New Jersey" and see what comes up...find the right Dr for you. He or she is out there.

So many options for healing-- just know it's possible and you will!! Here if ya wanna chat!


Sarah

Hmmm I know a lot of people are currently going to Dr. S, I hope this isn't the norm. I agree with Trav that some people antibiotics just don't work with. Period. Did you try going with an herbalist before NJ?

Don't lose heart. You will be able to work out again! We just need to find someone that can work with you, within your budget. It is doable! What is your heart telling you to do? What direction do you want to take?

LOL..can we say the name? It's Dr S in Howell NJ. He has ZERO bedside manners. I used to have to write a list of questions and would get yes no answers only.
Fact is, I'm far too sick to not have at least some hand holding through this scary process. Not, here's your abx, you're one of my sickest patients, you have a heart murmur btw and Babesia, bartonella, you'll be sick from abx..bye. Seriously..that was the entire conversation!

Yeah...I am an anxious riddled person. I have horrific rage. I don't get physical, but I flip out over the stupidest things. I can't control the rage. If I try to, it only gets worse and I blow up. Driving is an awful task in the NJ area. I sit in bumper to bumper traffic daily. I have no patience or tolerance for most things. I feel like the world is out to get me. I have a ridiculous amount of pain and fatigue and I'm germaphob due to a compromised immune system and getting sick all of the time. I never got to be healed, just better than now.

I have no idea what I should do. I sometimes think antibiotics are the only way..others I think they'll kill me. I only gave them a few months. Maybe I should give it one more chance with a good LLMD. Wish I could afford one.

I worry I will die most days. I am so sick. Thank god I'm not wheelchair bound yet, but I worry I will be. Winters are the absolute worst for me.

Post Edited By Moderator (opugirl) : 11/13/2013 9:17:27 AM (GMT-7)

As Opugirl said - we have to worry about liability issues. The good news is that I have never referred anyone to that doc!!! LOL! Boy am I relieved with the two reviews on this thread!!

I would say that anytime you are tempted to try abx again, go back and read this thread and see what you endured. That should stop that urge! Treating these infections with herbs isn't talked about much in the main stream groups, because there are no - or very few - studies that have been done with herbs on much of anything. There's no money in it, so no one will fund the studies. It's only the few that wish to use herbs - like Buhner, Zhang, and others - that have a personal interest that will do these studies.

No matter what you choose to use for treatment though, there are things you can start doing right away that should help ease your symptoms a bit.

Eating as healthy and as organic as you can - this will not only fuel your body properly, but reduce the amount of toxins that you are getting each day. Toxins are what drive the symptoms of these infections.

Start doing all you can to detox. This is a major part of healing - being sure that your body isn't overwhelmed with toxins. This will slow or even stop the healing. If you aren't just allergic to the abx, this is the next likely reason why you responded to the abx as you did - too many toxins were being created and they overwhelmed your body. Many of us actually feel toxic at times.

We can do some hand holding here!! This forum is usually a great place to get the support to get through this! You may also really connect with someone on here and start emailing with them as well. I know I've made some really wonderful friends through this forum!!

SleeplessNJ, do you have low VitD, low MSH, low VEGF, ect?
I have. And except #2 pain, I have all your symptoms plus persistent headache and sinus infection. On my recent nasal culture result it sails: "rare colonies of coagulative negative staph", I don't know if that's equa to "Marcons". I feel these symptoms agree with Dr. Shoemakers biotoxin theory.

Chrisnj, thanks, but wouldn't that promote cystic form chronic Lyme?
I think a good LLMD should follow Dr. Burrascano's guideline or ilads guideline. And doxycycline is only suitable for early stage Lyme, why would he use it on me who has neuro borroliosis that needs some drug can pass brain blood barrier??

I agree with Trav on this one. My doctor put me on cyst busters after 3 months of treatment. I've heard a lot of doctors treat this way, put this cystbusters in once things start clearing the system.

afiya4health, would you mind telling your treatment protocal with Dr.S? Did he follow Dr.Burrascano guideline? What did you use to bust cyst? treat co-infection? detox?
Thanks.

I'm going to jump in here and say that my llmd did not really hold my hand either. He prescribed drugs, IV vitamins, made sure I was on probiotics and that I took my meds with food and that was it. I researched all the alternatives and did them on my own working with an herbalist and an ND. I have yet to hear of a dr that completely holds your hand and tells you everything. But man oh man, that would have been nice!

Glad I had a site like this to come to with so many helpful members!

Exactly traveler! I don't want to make it sound like I need someone who is my friend..I just need a doctor who will explain things a little and have SOME INTERACTION with me while under their care. Not spending under 4 minutes with me when I've driven 2.5 hours each way to get to their office.

He literally did almost zero talking . I was so scared I was shaking. He did manage to tell me I was scary sick and one of his sickest patients (and I got the feeling that he'd seen it all) that I had a heart murmur and candida and bartonella and Babesia.and Lyme. And see ya here's medication. I asked him about natural alternatives to do along side the antibiotics to help with herxing. He said there was nothing. I asked about salt baths..he said don't bother. Second visit he told me I should be doing the salt baths they might help. What in the hell?!

I'd go in with pages of questions and get yes no and he seemed irritated and never gave anything more than simple yrs or no answers when I'd ask.

Who I started becoming severely allergic to the antibiotics he got pissed, didn't want to talk to me on the phone even though I was just in his office days before. His answer was "you're allergic come in and I'll start you on a new medication" by the time this happened the second medication, I said maybe my body needs a break before writing a new script. He wanted me back in but he was 2.5 hours away and I had been in twice! I couldn't just drop everything and go! My boss would have fire me..and my husband works and can't take off. He said if I took a break from medication then I need not work with him...he never checked on me after that even though my throat was itchy and tight and I had a rash covering my body. Yeah screw that.

There's bedside manner and then there's him. I don't need someone to spend hours with me, but c'mon! Offer some advice and be polite.

 Sorry if I offended anyone with the hand - holding comment. It came out so much worse then in my head lol!

Beth is grumpy right now. In fact she makes grumpy cat and oscar the grouch look happy.

Watch out world!

Awww! We love ya anyway, Opugirl!! But I think it might be the weather - I'm feeling a bit that way myself. I woke up to grey skies that were cold and rainy.... and I have to go out in it!!!

This is more about finding the right type of doc than attacking one doc, I hope! We shouldn't be here to attack any doc, although talking about them is natural. Let's just be careful with our words!

Thank you!!