I have tested positive for Lyme with several bands positve. Recently I have begun to get twitching especially in my eyelids. Is this typical? Also I have been on ABX for 4 months now and don't seem to be getting better? Some days I am in great pain especially in my neck, arms and shoulders. Right now I am on Doxy and Spetracef. How long does it take to see some improvement? Generally how long is the treatment? Do people recover from this?
Posted by hilde (Member # 18209) on :
I have twiching everyvere on my body. I think most people feel better after 4-5 months. But sometimes it takes longer time. It depence on how long you have had lyme.
Many people are getting much better and some healty. But it can takes a long time. From monts to years.
Posted by seekhelp (Member # 15067) on :
I have the exact same thing. I am clinically Dxed. I've been into Abx treatment now almost 5 months...some slight improvement,but a very disappointing pace.
Posted by tickssuck (Member # 15388) on :
Hi,
I am 10 months into tx (I've had twitching pretty much body wide). I was sick about 3 years before I knew it was Lyme and company. Just recently I am finally seeing some improvement, albeit painfully slow and still very much symptomatic. 5-7 months into it, I didn't feel like I was getting anywhere. I still have so many symptoms, but do now have moments where I feel like I'm finally crawling out of this hell hole, very, very slowly - I wouldn't have said that a few months back.
I think it varies widely, how long you've been infected prior to treatment, co-infections (I've tested + for ALL of them, ugh), probably the various strains of infection you have, your immune system etc. etc. etc. It's hard to advise you to be patient, as I know that's not what you want to hear. I still battle the fear of, "what if nothing ever improves?" Keep up the fight and the hope. You have a diagnosis and are treating, that's very positive! Good luck. TS
Posted by LLYME (Member # 18687) on :
Twitching was one of the first signs I had when the brain fog and dizziness hit me 7 months before I knew I had Lyme. The abx has made the twitching worse, it adds to the Lyme experience haha
Posted by WildCondor (Member # 434) on :
You guys should be on magnesium supplementation. get Mag Tab Sr from walmart or order it from Rite Aid or CVS from Niche pharmaceuticals. Ask your LLMD for IV or IM Magnesium sulfate. Makes the twitching stop.
Posted by glm1111 (Member # 16556) on :
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
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Are you being treated by an ILADS-educated LLMD?
Were you assessed for coinfections?
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Are you receiving adrenal and liver support? That is essential to help you feel as good as you can during treatment. (Singleton's book and Burranscano's guidelines offer suggestions.)
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Is the doctor also addressing candida that often comes with abx tx? ProBiotics and Olive Leaf Extract can help here.
Is your doctor considering intestinal parasites? There are many ways to do this. Andrographis, IMO, is the best.
It is mentioned in Singleton's book and discussed thoroughly in Buhner's. Many abstracts about it at PubMed, too. However, it can be very sedating.
Vit. C/ Salt has helped some but it has cautions to first consider. Be sure to have liver function tests done first and heart rhythm checked. If you have diabetes or high blood pressure that would strike this as an option. If you have swelling or edema, that would be a sign this might not be best.
Allicin (or freeze-dried garlic), Olive Leaf Extract, or andrographis are all helpful against a wide range of parasites and infections. See PubMed for details on those.
I assume you are taking excellent care of yourself by not smoking, drinking alcohol or using aspartame/Nutrasweet/Equal or MSG. Those all are toxic.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- see link for list.
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Posted by MY3BOYS (Member # 17830) on :
i have had the muscle twithcing everywhere, from head to toe.
between LLMD and my neruologist it has decreased some iwth all the meds i am on, and magnesium is a must. My LLMD had me to increase mine to three times a day and am on baclofen three times daily as well as a plethera of other meds
at least now it is only sometimes, not every time i sit down or holy molly, lay down (that was the worst!!)
i have noticied now if i overdo it or dont nap then that night the twiches are worse., so bad my whole body will move/jump but mostly is indeped muscles..leg..arm..eye,,hand,,you get the idea
from what LLMD said mg is a must (esp with hyper-reflexes which i have to extreme)...is alot like pre-eclampsia in pregnancy....that is why IV mg is the treatment...hope th at helps...my LLMD and Neuro have been great to both know about this
Posted by swedish lyme sufferer (Member # 14579) on :
Yes, have it too, ALL THE TIME, all over my body. Have been treating for +2 years, lots of different abx, mostly IV. Nothing seems to help.
Not even Mg IV.
Inflammated nerves, I have been told.
Takes time....
Posted by lmz1100 (Member # 15487) on :
One of my biggest symptoms in the past few months was muscle twitching, which then turned into tingling and numbness in my fingers and toes. That was worse than the twitching.
My fingertips especially, were sensitive to cold and hot to the point it hurt. I was convinced I had MS and went to the neuro. Was tested for everything under the sun, no MS.
Went back to my LLMD who had only been treating me for lyme and brought up my symptoms again. He started to suspect bartonella and decided to try me on oral Rifampin and Levaquin - two weeks on, one week off, two more weeks on and then we will see how its going. I hate to say this in fear I will jinx myself - because I can never go back to how I was feeling in 2008 - but I am only at the end of the 2nd week of that protocol and I feel like a new person. No twitching, AT ALL.
The nerve tingling stopped almost immediately. My fog lifted, no more headaches. My toes no longer hurt if I touch something hot or cold. For once I am very hopeful.
This treatment does not come without downfalls though. I already had sleeping issues and the Rifampin has made it 10x worse. I take Ambien, sometimes 2 right now, just to get a few hours sleep. But its worth it to feel like I do now.
I also got back into the gym and started training for a 1/2 marathon, never have done that in my life, but its time for changes. I think excercise has helped me a great deal.
Just wanted to put this out there. Sometimes treating just Lyme won't help, you've got to treat those co-infections. I hope you get to feeling better soon.