please help

I have been severely ill for the past 9 months. I have been to 20+ doctors with every one telling me to go to a psychiatrist. the doctors have convinced my entire family that I'm crazy or making my illness up. As I type this I'm fighting for air for my second day in a row with horrible chest pain and I feel like I'm having a heart attack.

I had all my testing over the months come back normal until I recently had my lyme titer with reflex come back positive and the 23 band on the western blot come back positive. My primary doctor at first gave me 2 weeks of an antibiotic and referred me to an infectious disease doctor.

I messaged him yesterday a couple times about my concerns about syphilis making the lyme test come up positive and about the herx reaction. He then had his nurse call me to tell me he now magically doesn't think I have lyme and to go to a psychiatrist.

I have lost 80 pounds,had my gallbladder out in December,had a picc line in that caused complications and I'm now on blood thinners. I made an appointment with the llmd near me in hermitage pa but he cannot visit with me until june.

I don't know if I should just do the 2 weeks of antibiotics and wait it out until June or hold off on the medication and wait it out. I also have 3 days of appointments at the Cleveland clinic the 22nd through the 24th coming up. My hope is that they rule everything else out and maybe give me proper treatment sooner.

I want to go back to the er to check my chest cuz of the constant pain/extreme fighting for air but I've been there 20+ times since this all started and they always just do a chest xray and send me home. Don't even do a breathing treatment or give me anything decent for the pain. I read the welcome post and am getting some Epsom and trying to remain calm but it's so hard when you feel like you are being strangled and kicked in the chest for 2 days at a time. I just slept 10 hours hoping it would pass but it hurts worse than ever. Any support is appreciated ty.

Post Edited (starlette89) : 4/15/2015 7:26:46 AM (GMT-6)

Lyme seems likely, and maybe Babesia too given your air hunger. I'd go ahead and try the antibiotics. If you have Lyme, you'll likely have herxheimer reactions, so you'll need to detox as you go, eat well, drink lots of water, rest and be super sweet to yourself. If the antibiotics help then maybe you can convince your local MD to give you a longer course while you wait for your llmd appt. It's a good idea to check in with the llmd office periodically to see if they've had any cancellations and can move your appt up. Read the New to Lyme post at the top of this site and it will give you ideas for taking care of yourself. There are supplements and herbal treatment to try. It is good you're on a blood thinner because Lyme causes coagulation problems. I'm so sorry you're not getting help, but you will. Many of us have been through the lyme terror and frustration of not receiving proper care. It is a long hard journey but you'll get better over time.

Why did you have a picc line, and what antibiotics were you on? Did they help at all?

I am so sorry you are going thru this, especially with out support. You need to detox and try to relax. Easier said than done, I know.

Read as much as you can and learn all you can about lyme disease. Knowledge is power. You have an option of trying an herbal protocol on your own. There are even some herbs that will help when used alone. The Buhrner's protocol is popular and good.

You are not crazy and this is not in your head. Unfortunately you are going to have to fight for your health. You can do it and you will get better.

Keep looking for another LLMD that can fit you in sooner. See if there are any support groups you can go to also.

open a new thread on here asking for an LLMD in your area. Someone will have another doctor for you to try.

Good luck and keep fighting!

Is that your only symptom? Chest pain?

I do have the hallmark joint pain as well. Mostly my right elbow and right knee. I'm left handed so I believe my right side is generally less resilient than my left

I have had mri's,chest x rays,cardiac stress tests,ultrasounds,upper gi endoscopy,ekgs,countless blood & urine tests. the lyme titer w reflex and the 23kd band on the western blot are the only things to come back positive. I am going to the cleveland clinic for 3 days to be completely worked up again and to retest for lyme to rule everything else out again.

Any suggestions on what probiotic to take? I am on coumadin 6mg and will be starting 14 days of doxycycline 100mg twice daily with the Epsom baths. My only worries are that one 14 days will not be enough & will make the bacteria stronger. & Two I worry that in all the testing I've had they missed a different problem. But With the lyme titer being the only thing to come back positive and the 23 band being specific to lyme coming back reactive it just has to be...

I would do the herbal protocol as a follow up but I am almost completely out of money at this point. I haven't been able to work since this began abd have recently applied for Disability. I know no one can tell me exactly what to do but in your opinions would you wait until after the clinic visits to start the doxy or start it asap

Another question. Sorry just like to hear from people who have experienced it firsthand. I want to avoid the er at all costs. What will the herx be like? Also how do you remain calm during a herx? Can it kill you? (I read somewhere that it can which is why I'm hesitant to take the abx)

Hi Starlette,
Welcome to our community. I'm so glad you found us!!

First of all, I had to edit out your email address as this is an open forum (anyone with a computer can read these posts) and you don't need a bunch of spam!

Secondly, with you being on coumadin, you must be very, very careful to check everything you take to make sure that it doesn't (a)interfere with the coumadin's action in thinning your blood and (b) that it doesn't increase the blood thinning action of the coumadin. My hubby's on coumadin for life and we've gone through a lot of dietary and medication changes due to this alone.

You will need to check every herb and every medication you take to make sure that it doesn't affect the coumadin.

Herxing is different for all of us. Some have a lot more pain and others just get more ill over all. Some have only a few symptoms increase, some have new symptoms show up. some have a combination of things - and some don't herx at all.

Doxy may not be the best abx for you though, as it increases the effects of coumadin: "Treatment with doxycycline may increase the blood-thinning effects of warfarin. You may need more frequent monitoring of your prothrombin time or INR by your doctor to safely use both medications. Let your doctor know if your condition changes or you experience unusual bleeding or bruising."
http://www.drugs.com/interactions-check.php?drug_list=940-0,2311-1529

So I would say, please DON'T start the Doxy - or if you have, don't take any more of it. You will need to work closely with a LLMD to find the right combinations of abx to help you heal without having a high risk of bleeding.

I had that concern about the doxy increasing the effect of the warfarin. The pharmacist told me not to worry about it and my gp told me the same. However the paper that came with it said it could interact and now traveler has advised against starting it. I'm so confused on what to do. Some say start the doxy asap,some say wait,some say try to get a different abx. =(

I go once a week.

Starlette - you will need to enable your email option if you want forum members to send you information.

To do this:
Click on 'My Profile' - on the blue bar up to the left of this page. Then click on 'Edit profile"...and then scroll down and select 'Show my email'.


Please keep coming back here, we can help you through this - read posts, ask questions....