Lymes? real real sick. Help

back in late february(live in oklahoma panhandle and have dog and cat)I noticed a about 3 inch circular bite on my leg. It did not hurt and was not raised. Had a dark pink small solid circle and a lighter pink complete circle around it. It was a little warm to the touch, but not swollen. faded away about 1 week later. I just brushed it off as a spider bite. 2 weeks later I had 1 hour of violent shaking. Could not get it stopped. Covered with blankets. Scary. then 2 months later had high fever, sore throat and dry cough. went to doctor and got antibiotics. Did not get better. I have been real sick for 3 months non stop. Constant chest tightness, severe fatigue, nausea on and off, air hunger type feeling in upper chest and lately my vision is blurry all the time.Also have been seeing white spots some. Have had complete heart test, gallbladder, GERD, upper scope test all negative. had western blot test. Only 41 IGG positive. Doctor said I dont have lymes. Im so frustrated and so sick all the time. What do I do now. Only have Oklahoma medicaid. Have to stay in oklahoma and PCP has to refer me. Im so miserable. Please help

Sounds like Lyme to me. Read through the information in the 'New to Lyme' thread. You will need to find a Lyme Literate Doctor (LLMD) in your area that will help you. There should be info on how to do that in the above-mentioned post. I, like many others on here have spent numerous hours doing research on Lyme and it's co-infections. That air-hunger issue is specific to a co-infection and I want to say its Erlicha, but I'm not positive. I have Bartonella and I know it's not that one. At any rate, Lyme disease is an immune response inhibitor which means the bacteria inhibits production of antibodies which is why you are not testing positive for it. There are bands that are specific and not specific for Lyme and if you have a Lyme specific band present you have Lyme disease regardless of whether or not ANY other bands are present. Again, there is information on specific bands and their meaning in the 'New to Lyme' thread. It's a time consuming process to research and find doctors and get the help you need. It is frustrating at times. Hang in there! There is help and you can get better!! Use this board to vent frustrations--it's why it's here. Best of luck!

Thanks Garfield48. Im going to OK city tomorrow to the OU medical center ER. My doctor actually says I can get better test there. I want to make sure it is not lung related.(cause my chest hurts so bad)They might can do another western blot test on me. We live in a town of 1500 in rural OK. Ive been sick straight for 3 months. I had to take a leave of absence at work. Cant do anything without feeling sick and nauseas. Chest hurts and is tight all the time. I dont know if your a Christian, but I am. Say a prayer for me please. My name is Marcia. Thank you,God Bless

Had another lymes and Erlichiosis test. Ive started a 21 day doxycycline. With having the bullyseye rash, I will continue with believing its lymes and go to a lymes doctor if doxy does not help. Thanks for your prayers.

Hi godlives38 - welcome!

There is unfortunately A LOT of misinformation out there about lyme disease as it is for some unknown reason an extremely controversial illness. I know it can be overwhelming - we're here to help however we can! I believe the bull's eye rash is a definite diagnostic marker for lyme disease. Please understand a few things - the typical western blot is not a reliable test. Some doctors may tell you otherwise, but, simply put, they're wrong. Also, a long time ago someone had this idea that a short course of one kind of antibiotic would completely eradicate this infection. This is very, very often NOT the case. I know it's not pleasant information to hear, but it is better for you in the long run to know this upfront, and to know that you may meet a good amount of resistance from doctors if you point out that you need further treatment. This is why it's best to find a way to see a LLMD - they'll understand that, for many reasons, these types of infections are difficult to eradicate (though the sooner you get to it, the easier), and treatment should be followed until symptoms improve. I hope you get better soon and say better, of course, but please do keep in the back of your mind at all times that should you get better and then start to develop symptoms later down the line, even if you're told that it couldn't possibly still be lyme disease, it very well could.

None of this is to scare you - it's just so important to stay on top of this stuff because so many of us go into chronic, difficult to treat infections because we're not given proper information or treatment. Also, make sure you're taking probiotics or eating fermented foods along with the antibiotics - it's so important for our immune systems to replenish the good bacteria that the antibiotics will kill off, plus, that could be contributing to your nausea as well. Best of luck - I said a prayer for you and please don't hesitate to ask any questions you have - that's what we're here for!

Are you taking the doxy with food? I had to do it that way for my stomach to tolerate it. Also those other symptoms sound like Babesia ...which I have and is treated with Mepron and
Doxy together. I finally lost the chills, sore throat etc and feel like the meds are really helping that. Hang in there you will get some relief as your treatment progresses.

If I have Babesia, do I have to have a positive test to get treatment? I read that Mepron is real expensive. Do you think my medicaid would cover it? The possibilities of more medicine with its side effects and cost are stressing me out. Is 200 mg a day enough for lymes and ehrlichiosis?

God Lives,
So sorry you are still not feeling well and you're going through so much with your 2 docs. I just found out my LLMD visits will not be covered at all until I meet a $4k deductible. Yikes!

At any rate, before my LLMD I was on 100 mg doxy bid (2x a day) for a month then when I stopped I rebounded. My new doc, an LLMD now has me on 200 mg dox bid and I'm feeling better. I have low vit d, iron and coq10 and other stuff. I'm taking 10,000 IUs of Vit D a day now, I just have to take it at a different time than my abx. It takes a few months to get our Vit D back up, and also the prescription Vit D is not as good as OTC Vit D3. (D3 has more bioavailability than the rx D2).

Did you have an Igenex test done for Lyme, or just a general lab? Many regular Western Blots are not as specific or sensitive as Igenex testing, so there are MANY false negatives. (myself included, finally positive through Igx).

Have you read Burrascanos' treatment guidelines? You may find some info here helpful
www.ilads.org/burrascano_0905.html

ARe you doing the skin brushing and detox baths suggested in the "Welcome" file? They seem to help me a lot.

As far as determining is it's STARI or regular Lyme, I wouldn't worry about that. Your primary only knows what he/she's been trained, so it's not there fault that they don't understand or that they don't know. Sounds like Lyme and you are being treated for Lyme by an LLMD.

I wonder if you could benefit from some herbs to help you? I am on abx but am about to start some of Buhner's protocol to help with other issues that abx are not fixing for me. Perhaps your LLMD is aware of Buhner's Lyme treatment protocol? (Mine is.) If not, he has a great book called "Healing Lyme" that helped me get a better understanding of what my body is doing. I can't speak from experience about the protocol yet, but I've read a lot of people have been helped by it, so I thought it worth mentioning to you.

So sorry you are struggling. It's going to get better. Sending you a BIG HEALING HUG!!!!!!

Are you allergic to penicillin? Like Amoxy? I prefer it to Doxy. The doxy is for people who are allergic.
Amoxy was great for my daughter who got it. Being allergic to it myself I got stuck with doxy and it made me feel worse and after months and months on it it did not work for me.
Find a health food store and get the best colloidal silver you can find. It comes in a liquid form with a dropper. It is a natural abx. Harmless and can help it the beginning stages.

godlives38-you and other posts are making me cry, I feel your pain, it sucks so bad, I can't even move right now, I can barely take my meds, my whole body hurts, I am so depressed, my mom and friends said they will take me to the psych hospital but I'm trying to stay out, it does me no good there. I've been in there twice from this already. I want to die so bad. I can't fight this anymore, but I don't have the guts or the strenght to take my life. I wish I did. But my brother is injured from a sucide attempt and he tells me to be strong, but I tell him he doesn't know what it feels like to be depressed and have lyme. I feel selfish for saying this, but I just don't care anymore. I'm going on 10 years of this illness.

I know it's worse than fatigue, you have no strength. I've been having the air hunger a lot worse lately, not so much chest pain. I'm also starting Mepron probably tomorrow, hopefully it will do something for me.

I also have no life, I watch seasons come and go unable to do any activities, I just sit here by myself rotting away. I'm now out of work, even when I was working , I was sick I would cry all the time at work until I was literally getting sick and passing out, they wouldn't let me work anymore.

It would be so much easier if I had a lyme friend close to me right now, but I don't , I have reached out to all the support groups around me but they no longer have them, the only one about one hour away from me, won't contact me back.

I hope it ends soon, I can't take much more.

Post Edited (seniubr11) : 10/2/2012 9:51:11 PM (GMT-6)