I need help I have been on 2 oral antibiotics, 2 pic lines , then another round of oral antibiotics, had another Lyme test came back with decrease level of IgG but no changes in my bands IgM , IgG , IgA ,G39/40 ,and 49736 . I’m still very systiomatic joint pain sever , tingling in neck and legs , water like feeling in my legs and body . I can go on and on . Going to see my heart Dr next week . Had a spinal tap pos in cns !!! Next dr is my eye dr having trouble with my eyes again just had laser surgery 3 months ago good for awhile not so good now . Next Dr is my back Dr my spine hurts from my neck all the way down to the bottom of my spine . I’m not really sure how to interpret these test results. But I’m at the end of my rope being dig oneself with late stage Lyme and nothing is working… UGH
I am not a doctor, but I am the father of a teenage girl who has been struggling with what turns out to be Lyme for several years.
In the first place, although I don’t know what a “pic line” is, I am surprised you did not start with I.V. antibiotics and then follow up with oral. This is the procedure my daughter went through and it has helped. However, you did not mention co-infections at all and I would find it hard to believe that there were none – especially some of the more common viral infections that should be taken into account, perhaps first and antibiotics do not touch a viral infestation. My daughter really did have a viral infestation consisting of several different viruses all beavering away. As a result, she was on an I.V. antiviral for a month, producing an improvement before a rest then I.V. Antibiotics. But any way you cut it Borrelia has its Immune System and antibiotic defences and it is likely to take may courses of treatment to get at all of them. Serrapeptase seems to help to combat Biofilm, but that is only one defence system.
I guess that’s not much help and I don’t know where you live so there is no point in suggesting Lyme competent doctors – who are few and far between anyway. We live in England these days, but had to go to Germany and the Czech Republic for any sensible prognosis. In England, my daughter was told to learn to live with it…
Mike
Hi Mike . A pic line is an intervenious antibiotic. I had 2 of them in the past year along with the oral antibiotics. As far as viral infections had many just got rid of a severe one in my chest . Was put on doxi for 2 weeks to get better still not great but much better. While on the interventions antibiotics had severe c diff , more antibiotics along with water like feeling in my legs and arms was put an steroids. Didn’t work very well . I also have the brain fog . And neuropathy. I live in the USA in CT no real Lyme Dr here , just infectious disease Drs so it’s really hard on us . The gov only believes in these 3 treatments for Lyme and regular Drs don’t believe in the pain and suffering from Lyme the all think it should go away with the treatment. Having it in my central nervous system doesn’t make it easier. I’m getting very sensitive to light and sound and it is affecting my eyes . I’m tired of the antibiotics they really do a number on my stomach. Thanks for your reply and good luck to your daughter.
Hi Linda, I understand your pain and frustration. I have been being treated for over two years now with two types of lyme disease, it is difficult because i probably had it for decades before it went active, and now it is a rather ugly affair. The worst for me was being deserted without warning the same week the final diagnosis came back, then divorced as painfully as possible during treatment. I dont know what has happened to you but do know this,prayer helps and so does a great doc… Have you ever considered being treated along a different more permanent path called LDI or low dose immunotherapy for lyme. As usual the Europeans are years ahead of us in threatment options and protocalls. The LDI is saving my life thus farm the only thing that will keep me cured for good, but it takes time, but is not that expensive to the patient. please research it and evaluate it for yourself, take care now. [;ease excuse my spelling as i am very lyme tired now.
Ray
Ray
Thanks for your reply.so sorry for what you are going through it is a tough road to be on . Yes I do agree that prayers help I pray daily some times I can’t remember all the words they get scrambled in my head but I know they understand. I will check into that medicine but I don’t know if it’s available here in Connecticut. It does get very frustrating with this nasty disease. I have to take another Lyme test soon and hopefully it will be better than the last one. Thank goodness for spell check lol… a lot of times I can’t spell correctly the letters get mixed up ugh !!! Anyway hope everything is getting better for you, keep the faith. I’ll let you know when I get my results back take care. Linda
Hi to all, I was wondering if there was anyone else who has experienced facial numbness along with the lips tingling and guivering. My brain fog has gotten worse I see letters backwards miss read words they seem to scramble up on me . I can’t remember what I read , when people are saying something to me it seems like my brain is spacing out , and I have a hard time finding the right words and names of the people in my life. It’s so aggravating. The neuropathy has gotten worse now it’s in my hands and going up my arm also the water like feeling is driving me crazy. Well there is so much more to say but my eyes are starting to blurry and water , they never did this before is this part of late stage Lyme and it’s in my central nervous system had a painful spinal tap . Thanks everyone Linda
RHi again linda. Its going to get better a bit at a time. Im pretty sure he remembers the words when we cant. Really hope you can try the ldi. As for me i lost my nursing job around two months ago when i had a relapse and had to do two months of oral antibiotics to boost the die off and keep the thing down longer we hope. I feel much much better now and have an interview for a job tomorrow.
Truely i understand about the mental fog, but just like in the world, the sun comes out and the fog WILL burn off. Please try to keep your stress as low as you can. One thing that helped me is that if u drink best to stop i know there are articles on it how lyme disease can make us want to drink more than a normal person but as we heal we loose our taste for it. Thats what happened to me
I pray you have a great support system at home and your job. Oh yes the best test i know to find lyme is called the lyme immuno assay. In assition to the ldi shots my doc also has me use a very potent natural antibiotic called Banderol in addition to cats claw and some other things.
Well guess i have blabbed enough let me know how it goes. You are going to heal and get better. It may bot be quick as we would like but it will come around. Its been almost three years treatment time for me but i can now see the light
whatever became of the LDI treatments Linda? Seems like you may be feeling a bit worse. I just had almost crippling hip,knee and shoulder inflamtion for the last week or so thank god its going down. My doc in addition to the main real weapon LDI, has me on medium does zythromycin over the last four months, along with natural antobiotics Banderol and cats claw. DO NOT QUIT!! People just dont have the slightest comprehension if they have neither had or seen lyme before. they think its a simple infection. Recently, i discovered on line a hospital envita.com where only two diseases are treated Cancer and Lyme, it is in scottsdale arizona, dont take insurance, but sometimes thats what you have.
If you need a fellow lyme to talk with let me know ill be glad to give you my number, or I can refer you to my lyme doc in michigan who would be glad to see you i bet, he has many patients just like us. God bless you and your family…Ray
Oh yes, if you decide to go to the envita treatment center web site, they have great videos on what and how deadly lyme disease really is for your self and others to watch… ray
Thanks so much for your time and your explanation of what you are going through . Sometimes I just feel so alone .L hate to put my problems on my family and friends, and Bob .So I keep it all inside . Even my Dr. really doesn’t really understand Lyme disease . He knows I am in pain but thinks it’s do to other problems going on with me. My Lyme Dr understands but is he gives me to much antibiotics my body will get ammuned to it . I will be seeing him within the next 2weeks .I will see what happens then . I have the same problems as you do shoulder, both knees neck back feels like I got hit by a train ., The neuropathy is awfully along with the water like feeling in my legs and body , tingling in my hands and feet and neck . I do pray a lot and I am not going to give up I am to much of a strong believer in God that this is going to get better., And no I don’t drink I have to say that at times I sure would like to…I am also going to look at the website to put in your text message. Thanks for that . I also what to wish you good luck with interview hope you get the job. 
I’m glad you are feeling better… I will keep you posted on my journey to better health if it’s meant to be I will see the test results and let you know how they came out . I understand you completely I went 7 yrs before my test results came back positive for late stage Lyme disease , take care and be positive Linda
Hey Linda!
No job yet but takes forever for hospitals to make up their minds, another interview tomorrow. I was hoping to get a mgt position to get away from the floor for a while, however I did get into grad school at Michigan Tech in the MS informatics, so maybe in two yeas or so.
You are totally understood, no one probably truly gets you unless they have been through the same door. Just this week, I heard of two more people diagnosed in my area, one of them I know. He told me of what his wife is undergoing/symptoms, boy do I get it and feel for her, thank God she has someone with her through it, as do you, perhaps you should use it, just let it go and vent to them?
Seems you are right, your Doc has no real idea what Lyme treatment should be, maybe he will learn. Antibiotics only work at all during certain times of the Bacteria cycle, and the lyme can form what is called biofilm colonies making them both cloaked and shielded from antibiotics. Did you ever look into that LDI (low dose immunotherapy), its on the internet. Also a few weeks ago, my Doc suggested I try CBD oil, its pot minus the THC, or the part that gets people stoned.
Stuff is great for pain!! You can get in online or at one of those grow shops. Dont worry, you can NOT get high from it,
I dont know what part of the country you are in Linda, but there are internet sites listing Lyme specialists/infectious disease docs. The one I go to is in Grand Blanc Michigan.
Anyhows, keep in touch, YOU WILL GET BETTER!! and remember, you are not alone, ever.