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Posted 10/5/2013 6:04 PM (GMT -5)
I am getting frustrated, it's been one year since I was told I had Lyme disease. I have tried different things, and I feel that I am just getting worse.

My seizures are really bad, been to the emergency room twice the last few weeks, from falling down. I am seeing a new neuro doctor soon, hope he can help me.

I am on the Buhner protocol, I am hoping to get retested thought Igenix soon for Lyme , and co infections. I do have one positive test from last year, but I was never tested for co infections.

I have gotten the pain under control for the most part, thank god for nettle leaf, but I spend most days in bed now, I can't make it downstairs for long.

I am hoping to see another LLMD soon, as the one I was seeing referred me to someone else. I have changed my diet, lost 30 pounds, done everything the doctors have told me to do, and I am still really sick. I can't make it a block to walk, I am pretty much housebound all the time now.

I am just venting , I wish I felt better, but I just don't my legs lock up, my left hand and arm switches, and my eyes are going blurry. Lyme disease is horrible.

justme
Posted 10/5/2013 6:36 PM (GMT -5)
Hi Justme,

I'm very sorry you are so sick and I can relate to your frustration. I have been sick for a long time and was diagnosed 10 yrs ago after it was already a chronic infection. I did what I was suppose to do also and fought as hard as I could and did whatever I had to do in the name of getting better, which included a pic line, six central lines, and three medi ports, and almost losing my life to sepsis! I foolishly thought that if I did everything I could that I would just simply get better but as we know Lyme doesn't work that way!

I lost my insurance and without the abxs I have gotten worse, even though I didn't think that was possible, I now like you have terrible seizures and the pain is never ending and I think all the time I'm only 33yrs old. I can't handle too many more years of this. This disease is horrible and its very isolating and you never know what to expect with it! Just keep hanging in there and don't stop fighting! Your in my prayers!

Laura
Posted 10/5/2013 7:45 PM (GMT -5)
Hi Justme,

I am so sorry you are still feeling sick. Yes Lyme is a horrible disease it will be nice if we all can get the help we need so we don't have to suffer.
I also experience twitching in the left side of my body and blurry vision when I drive it is scary and I only drive to work 15 minutes from my home. I had to stopped the medication because of stomach problems and the symptoms are back, I know is to soon for me to stop the antibiotics I am only in treatment for 2 months.
I know you will get better for some people the healing process is slow but you will get there.

I wish you the best..I will keep you in my prayers.
Posted 10/5/2013 8:37 PM (GMT -5)
Hi not that I know what going on with people that have lyme disease. But I was hit hard with it this past spring

took me right off my feet for nine weeks all test cam back neg doc said i had osteoarthrits I have had both knee replaced shoulder ops,elbow ops over the years, than I find out i have chronic lyme disease. The doc i have now has me

on the ultimate zapper which has put me on the road to getting my life back. The other doc. got me on cefuroxime 500mg tab twice a day for the nexted four months. I also started grouding my self with earthing products check out on the net. I also take core lyme tonic,lyme nosode drops, and teasel 1-7 came from the doc that uses kinesiology that tell him what my body needs there hope look at these thing on the net ultimate zapper,grounding,kinesiology. I stopped eating bread and sugar when i do I get major inflammation which is causing most all the problems.

Posted 10/5/2013 9:05 PM (GMT -5)
You are a patient person. If you decide to try something different I saw immediate relief from pretty bad nuero symptoms with antibiotics. The amoxicillin and ceftin (Omincef) were able to bring results immediately. I was not taking seizures but had cognitive, memory issues, left side weakness and tingling, dizziness, pupil irregularities, blurred vision, fatigue and anxiety from all of this. Hope you feel better soon !
Posted 10/5/2013 10:55 PM (GMT -5)
Justme...I'm sorry you are having such a hard time and feeling so low. Lyme disease is awful! With the right dr. And treatment, I believe you will get better and stronger. It will take time, but you have to believe it. I will add you to my prayers
Posted 10/6/2013 6:23 AM (GMT -5)
Justme,

I'm sorry you're still not getting better, but only worse. It might be a cold comfort, but you are not alone: Only getting worse here too, after 14 months of treatment. Luckely I have no seizures.

I think it is a good idea of your dr to go and see another LLMD, more brains might help. I would definitelly look into coinfections, they could be blocking everything.

I wish you a lot of patience to keep on fighting,

Hold on,

MarieLS

Posted 10/6/2013 6:58 AM (GMT -5)
Thank you all. I just went from such a active person, to having a difficult time walking to another room. The LLMD cost so much money, and it's difficult right now, since I lost my job in January. I uses to be a student, and worked in accounting for the last 15 years, now I am stuck at home.

I couldn't even make it to the store this week, I just miss my old life. I am not giving up, but it gets very frustrating seeing other people live their life, and we are stuck at home just trying to make it hour to hour.

justme
Posted 10/6/2013 10:06 AM (GMT -5)
Ohhh, Just me! I'm so very sorry that you still haven't found something to help! Keep on looking though!! I too thought I was doomed after my first year of treatment - although it was with abx, and for me that was a bad choice.

As Bbrian said, just having someone else take a look at your situation could help bring about some changes. Don't stay with a doc that doesn't seem able to help you!

Hang in there! I know it's hard, but you can do this! We are here anytime and will help in any way we can! Of course you also know that I am here to help in any way that I can too - just send me another email if you wish!

And you can come here to vent any time you need to!! smilewinkgrin

Sending many healing thoughts, and many prayers for comfort.

(((((((hugs))))))))
Posted 10/6/2013 2:35 PM (GMT -5)

Justme4508 said...
Thank you all. I just went from such a active person, to having a difficult time walking to another room. The LLMD cost so much money, and it's difficult right now, since I lost my job in January. I uses to be a student, and worked in accounting for the last 15 years, now I am stuck at home.

I couldn't even make it to the store this week, I just miss my old life. I am not giving up, but it gets very frustrating seeing other people live their life, and we are stuck at home just trying to make it hour to hour.

justme

Trust me, I do understand. I miss my life too. I've been sick a very long time. I've lived in bed for years. If you can afford it, keep taking some natural things and don't give up. As long as there is life there is always hope. Remember there are MANY strains of Lyme and the co-infections. What works for some...will NOT work for all people and there is no time clock on how long it takes us to get well. It varies with each person. You are in my prayers.
Posted 10/6/2013 4:40 PM (GMT -5)
Thank you all again. I always feel like this disease is a circle , I go around, and around. I am hoping to see a new doctor, and get tested for some co infections, and mold, I think that is my problem. Also parasite is a issues for me, so I am working on that now.

Hope you all have a great night.

justme
Posted 10/7/2013 5:10 PM (GMT -5)
Hi Justme,

Did your new dr give you a referral? Do you want to come hang out in Delaware with me LOL??? I can't exactly take care of you day and night but there are some great physicians in PA and DC. I'll just throw that out there, genuinely. I have a 'decent' guestroom!

I wish I was your neighbor so I could come help you out and spend time with you. Maybe make you a cup of tea with a spoonful of hope and reassurance. I do everything I can to help my locals out. I hope you have found a lyme network near you that can do the same.

Your optimism is so inspiring - there are not even words that can put into justice. I have a feeling that you will be rewarded one day beyond your wildest dreams for having to endure what you are going through right now with such grace and patience.


~beth
Posted 10/7/2013 8:40 PM (GMT -5)
The seizures are just really bad, the medicine is not working, I have a appointment on the 14th with a neurologist . I hope to see another Lyme doctor, but the prices are crazy, and we can't afford it right now. I hoping soon something will change for all of us, and we can all get better.

Not giving up.

Justme
Posted 10/8/2013 3:53 PM (GMT -5)
Justme, have you had any luck with what you and I discussed a bit ago that could help with the seizures? Just wondering if it helped you any.
Posted 10/9/2013 10:16 AM (GMT -5)
JustMe...always know that I am praying for you all the time. Literally in the mornings and the evenings when I pray I always ask God to please totally heal my Lyme family (which is all of you) and there are certain ones I really ask Him to perform miracles and you're one of them.

Let us know what the new neuro doctor is saying but something is going on and I pray that the new one can catch something that the last one didn't.

Praying for your symptoms to lessen until they are gone. Love you darling.

Serena
Posted 10/9/2013 8:36 PM (GMT -5)
I will pray for you...and I pray for everyone on this forum.
Posted 10/10/2013 12:26 AM (GMT -5)
Hello Justme4508, Have you tried any other antibiotics other than Doxy? Flaygl has worked pretty well for my neuro symptoms. My LLMD said this particular antibiotic is good for this. I was on Doxy for awhile and it just didnt seem to do much for me. Unfortunatly I stayed on it too long because it was one of the only antibiotics I didnt herx with. I cut my flaygl doses in 1/4 and It seems to help. Praying for you to start improving soon!!
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